Unexpected results

[Guest guest]

Hello there

Still lurking really. Trying to catch up with a couple of thousand emails since going offline.

In the meantime I've had a couple of puzzling lab results. They haven't been commented on by the endo and my GP doesn't know what they mean. Perhaps you can help.

One of them involves the anti-thyroid peroxidase test. I know that both my GP and the endo expected me to be positive on this test. However, the normal range is <60 IU/ml and positive is >100 IU/ml. My results show me to be negative at <20 IU/ml. I have no idea what this means.

The other one involves ALT. Again I've been given no interpretation of this either. Normal range is 1-40 IU/1. My results show: 62 IU/1.

I'd be so grateful if you could tell me what I should be worrying about now...

Thanking you in advance.

Have a lovely weekend.

[Guest guest]

Hi ,

About 50% to 70% of Graves' patients have thyroid peroxidase antibodies so if you have GD you can be negative. The test for stimulating TSH receptor antibodies (also called thyroid stimulating immunoglobulins) are the ones that are specific for GD.

The ALT is alanine transferase (formerly called SGPT), an enzyme that's primarily elevated in liver disease. Like ALP, alkaline phosphatase, it can be elevated in GD due to an increased metabolism.

[Guest guest]

Thanks very much for your reply.

I don't understand why he should have had me have this particular test then - why not just go for the TSH receptor antibody test? Is there a reason do you think? I don't know how best to approach this endo - he has engendered absolutely no confidence in me whatsoever but he's the only one I've got at the moment, unfortunately, so I don't want to fall out with him unless I have to.

He has, so far, told me and my doctor nothing we don't already know. His 'diagnosis' is: oh, yes, you've got Graves or Hashimoto's or some autoimmune thyroid disease - his words. It's frustrating as I don't know how to find out more myself.

I'm a bit worried in case when I see him at the end of this month and insist that he explains these results - he won't want to do another test if he's satisfied with the results even if he doesn't know what they are. I'm also worried in case he decides that the ALT levels means that my liver doesn't like the carbimazole and he decides that, in that case, RAI is the only answer. What do you think? If my t3 levels are down then presumably my ALT wouldn't be elevated because of my hyperT - would they?

What a pain it all is.

Thank you for being here.

Re: Unexpected results

Hi , About 50% to 70% of Graves' patients have thyroid peroxidase antibodies so if you have GD you can be negative. The test for stimulating TSH receptor antibodies (also called thyroid stimulating immunoglobulins) are the ones that are specific for GD. The ALT is alanine transferase (formerly called SGPT), an enzyme that's primarily elevated in liver disease. Like ALP, alkaline phosphatase, it can be elevated in GD due to an increased metabolism.

[Guest guest]

Hi ,

Liver problems can also occur as a side effect of anti-thyroid drugs so he should really do another test to make sure that your mild elevation doesn't get worse.

He really should run the stimulating antibody test to make sure that you do have Graves' disease. Your hyperthyroidism could be caused by thyroiditis, in which the treatment is anti-inflammatory drugs or antibiotics.

If he's convinced, though, that it's autoimmune you may not be able to talk him into this. It's true too that if the ALT is elevated due to your hyperthyroidism, it can be lower now since your thyroid hormone levels should be coming down. Let us know what he ends up doing. Take care, Elaine

[Guest guest]

Hi ,

I am also learning about my medical condition - the hard way.

An idea for you: as a patient, you have the right to copies of your medical file. Why not ask the secretary for copies, and then ask people on here what the results might indicate?

What I have so far found out about the allopathic medical community is that medical education for patients is very very lacking, probably due, in part by the fact that doctors have so little time anymore with their patients.

Arlene in CA

Re: Unexpected results

Thanks very much for your reply.

I don't understand why he should have had me have this particular test then - why not just go for the TSH receptor antibody test? Is there a reason do you think? I don't know how best to approach this endo - he has engendered absolutely no confidence in me whatsoever but he's the only one I've got at the moment, unfortunately, so I don't want to fall out with him unless I have to.

He has, so far, told me and my doctor nothing we don't already know. His 'diagnosis' is: oh, yes, you've got Graves or Hashimoto's or some autoimmune thyroid disease - his words. It's frustrating as I don't know how to find out more myself.

I'm a bit worried in case when I see him at the end of this month and insist that he explains these results - he won't want to do another test if he's satisfied with the results even if he doesn't know what they are. I'm also worried in case he decides that the ALT levels means that my liver doesn't like the carbimazole and he decides that, in that case, RAI is the only answer. What do you think? If my t3 levels are down then presumably my ALT wouldn't be elevated because of my hyperT - would they?

What a pain it all is.

Thank you for being here.

Re: Unexpected results

Hi , About 50% to 70% of Graves' patients have thyroid peroxidase antibodies so if you have GD you can be negative. The test for stimulating TSH receptor antibodies (also called thyroid stimulating immunoglobulins) are the ones that are specific for GD. The ALT is alanine transferase (formerly called SGPT), an enzyme that's primarily elevated in liver disease. Like ALP, alkaline phosphatase, it can be elevated in GD due to an increased metabolism.

[Guest guest]

Hello Arlene

Thank you for the idea. I'm getting copies of some of the stuff from my GP. She's happy for me to have the results but she doesn't know what they mean. The results I'm puzzled about at the moment are the fact that I'm not positive for the anti-thyroid peroxidase test when it was expected that I would be. And that my ALT is too high - 62 with a ref range of 1-40. There's been no explanation forthcoming for these results. And the thyroid function test results haven't come through at all - not even to my doctor's. It's just a shambles.

But apart from that, at least I like my doctor. She is willing even if she doesn't know anything (I think they get about 20 minutes in their training on thyroids). I'm not so keen on the endo I have at the moment and I can't see how to get another and have no way of telling that even if I did get another whether he or she would be any better.

Re: Unexpected results

Hi , About 50% to 70% of Graves' patients have thyroid peroxidase antibodies so if you have GD you can be negative. The test for stimulating TSH receptor antibodies (also called thyroid stimulating immunoglobulins) are the ones that are specific for GD. The ALT is alanine transferase (formerly called SGPT), an enzyme that's primarily elevated in liver disease. Like ALP, alkaline phosphatase, it can be elevated in GD due to an increased metabolism.

[Guest guest]

Hello Elaine

Thanks for your reply. So - if the anti-thyroid peroxidase test didn't tell him what he expected to be told - what has it told him?

He did do what I thought - not that I would know, never having been in this position before - was a fairly thorough physical examination of my throat and decided that nothing was enlarged or inflamed or sore or anything - does that fit with thyroiditis?

He may be convinced it's autoimmune without any further tests but I also need to be convinced. Any idea how I can find out whether it is or not??

I do appreciate the time and trouble you're taking.

Re: Unexpected results

Hi , Liver problems can also occur as a side effect of anti-thyroid drugs so he should really do another test to make sure that your mild elevation doesn't get worse. He really should run the stimulating antibody test to make sure that you do have Graves' disease. Your hyperthyroidism could be caused by thyroiditis, in which the treatment is anti-inflammatory drugs or antibiotics. If he's convinced, though, that it's autoimmune you may not be able to talk him into this. It's true too that if the ALT is elevated due to your hyperthyroidism, it can be lower now since your thyroid hormone levels should be coming down. Let us know what he ends up doing. Take care, Elaine

[Guest guest]

Hi ,

I am also so new at this that I am dumbfounded by all that I don't know. At least your doctors ordered what sounds like all the right tests. I have so far only seen a GP, and only once. I had three tests, at the beginning of my diagnosis, in May and June. But then no tests until September 18, when I requested them. So far, I believe I have only been tested for TSH and T4 and T3. Now if I do, indeed, have some kind of thyroiditis, I will have been on PTU for 5 months for no reason.

I just went into the doctor's office (that is the only way I can get any results - phoning doesn't do any good at all), to request seeing an endocrinologist, which so far I have never been referred to. You would have thought I was screaming curse words. First they put me in a little room with this lady who grilled me about why I wanted to see a specialist and then things got even wierder, but I don't want to be paranoid here. Hope the end result winds up that the doctor will " allow " me to see an endocrinologist, finally! Well, this is the new state of the medical profession with HMOs!

Good luck on your own journey. This sure is teaching me lots. What I have learned is going to be very good experience for when I age even more. I can't imagine how our elders navigate within this medical system!

Arlene

PS: THANK YOU THANK YOU, Elaine, for all your continued help on this group!

Re: Unexpected results

Hello Arlene

Thank you for the idea. I'm getting copies of some of the stuff from my GP. She's happy for me to have the results but she doesn't know what they mean. The results I'm puzzled about at the moment are the fact that I'm not positive for the anti-thyroid peroxidase test when it was expected that I would be. And that my ALT is too high - 62 with a ref range of 1-40. There's been no explanation forthcoming for these results. And the thyroid function test results haven't come through at all - not even to my doctor's. It's just a shambles.

But apart from that, at least I like my doctor. She is willing even if she doesn't know anything (I think they get about 20 minutes in their training on thyroids). I'm not so keen on the endo I have at the moment and I can't see how to get another and have no way of telling that even if I did get another whether he or she would be any better.

Re: Unexpected results

Hi , About 50% to 70% of Graves' patients have thyroid peroxidase antibodies so if you have GD you can be negative. The test for stimulating TSH receptor antibodies (also called thyroid stimulating immunoglobulins) are the ones that are specific for GD. The ALT is alanine transferase (formerly called SGPT), an enzyme that's primarily elevated in liver disease. Like ALP, alkaline phosphatase, it can be elevated in GD due to an increased metabolism.

[Guest guest]

Hi ,

Your negative TPO antibody test didn't help him at all. Had it been positive it would have confirmed an autoimmune thyroid disorder. Since it was negative, and it's negative in about 40% of GD patients, it doesn't rule out an autoimmune disorder either.

To prove you have an autoimmune thyroid disorder, a test for thyroid stimulating immunoglobulins (TSI) since that test is positive in more than 90% of Graves' disease patients. He could also run a test for thyroid growth immunoglobulins (TGI). With this combination, nearly 100% of GD patients test positive.

His physical exam showed no evidence of an enlarged thyroid or goiter, but in some cases the thyroid is retrosternal or positioned further back, sometimes behind the tongue. If that's the case, it's difficult to tell if it's enlarged or if there's inflammation or if there's nodules without an ultrasound.

If he's just going by your lab tests for T4, T3 and TSH, he can only tell that you have hyperthyroidism. Since there are other causes besides Graves' disease, you can tell him you want to be sure that you do have autoimmune hyperthyroidism or Graves' disease and that you'd like to have a TSI test.

Did you have a RAI-U test? That's where you swallow a capsule of radioiodine and then have an imaging test in the X-ray department. Some doctors use the RAI-U test to confirm GD since the test does rule out nodules and people with GD have an increased uptake and a diffuse scan. While it's not as sensitive or specific as the antibody test, for many years it was the only test used to confirm GD. If you had that test, he may be going by those results.

[Guest guest]

In a message dated 10/6/01 6:25:04 AM Central Daylight Time, moocher@... writes:

***If these two tests come back negative then what does that tell us? I'm assuming that if they come back positive then I do have Graves - or Hashimoto's. What's the difference between these two?

***If these two tests come back negative then what does that tell us?  I'm assuming that if they come back positive then I do have Graves - or Hashimoto's.  What's the difference between these two?

If either of these 2 tests come back positive, it means you have autoimmune hyperthyroidism or Graves' disease.

I don't think the RAI-U test is necessary, especially considering the fact that you're subjected to radioiodine. Long ago, it was the only test to help diagnose GD in hyperthyroid patients. The antibody tests are better.

Yes, your liver enzyme test could have been elevated from the hyperthyroidism and now have dropped due to your being on the ATD. It could have also been high from a co-existing condition like Mono or a viral infection.

Let us know how your results turn out.

[Guest guest]

Hello Elaine

Thank you so much for your info. I went to see my doctor armed with it - see***below.

You wrote:

Your negative TPO antibody test didn't help him at all. Had it been positive it would have confirmed an autoimmune thyroid disorder. Since it was negative, and it's negative in about 40% of GD patients, it doesn't rule out an autoimmune disorder either.

To prove you have an autoimmune thyroid disorder, a test for thyroid stimulating immunoglobulins (TSI) since that test is positive in more than 90% of Graves' disease patients. He could also run a test for thyroid growth immunoglobulins (TGI). With this combination, nearly 100% of GD patients test positive.

***I told her (my doctor) that the TPO test told us nothing as it was negative, and that it required two tests in combination - the TSI and TGI. She immediately said to make an appointment for bloods and tell them what I want - the lab might ring her up and shout at her and say these tests cost thousands but we'll cross that one when we come to it. I am truly lucky in my doctor.

***If these two tests come back negative then what does that tell us? I'm assuming that if they come back positive then I do have Graves - or Hashimoto's. What's the difference between these two?

***Anyway, so I went for the lot because there was that raised ALT result too. We looked back through the records and found an even higher one in August - which had been ignored as well - (staggering) - so I'm having that tested again. But in the meantime we're assuming it was higher in August because of the hyperT and was lower last time, even though, too high, because of the carbimazole taking effect. Would that be reasonable to assume? I also went for more thyroid function tests because the endo appears not have had them done <sigh, raise fists to the heavens>

You wrote:

His physical exam showed no evidence of an enlarged thyroid or goiter, but in some cases the thyroid is retrosternal or positioned further back, sometimes behind the tongue. If that's the case, it's difficult to tell if it's enlarged or if there's inflammation or if there's nodules without an ultrasound.

***It wouldn't have occurred to me in a million years that my thyroid might not be where it is in the textbook. I wonder if it would occur to him??

If he's just going by your lab tests for T4, T3 and TSH, he can only tell that you have hyperthyroidism. Since there are other causes besides Graves' disease, you can tell him you want to be sure that you do have autoimmune hyperthyroidism or Graves' disease and that you'd like to have a TSI test.

***Well, with any luck, if the lab doesn't scream too much, this is on its way.

Did you have a RAI-U test? That's where you swallow a capsule of radioiodine and then have an imaging test in the X-ray department. Some doctors use the RAI-U test to confirm GD since the test does rule out nodules and people with GD have an increased uptake and a diffuse scan. While it's not as sensitive or specific as the antibody test, for many years it was the only test used to confirm GD. If you had that test, he may be going by those results.

***No - I didn't have that test. If he says he wants to do that test - should I be worried about the effects of it? Wouldn't it exacerbate hyperT? Wouldn't it maybe trigger TED? Anyway, with any luck these other tests will tell us enough without that.

***Thank you, Elaine. Your help is soooo valuable.

Happy Weekend,

[Guest guest]

Hello Arlene

Hi ,

I am also so new at this that I am dumbfounded by all that I don't know.

***Do you find you're pre-occupied with it? It's driving me nuts. I have friends who are boringly interested in their own health - they can't talk about anything else - and now I fear that I'm the same.... It even seems to be stopping me from doing some things - or maybe I'm using it as an excuse...

At least your doctors ordered what sounds like all the right tests.

***My doctor is brilliant - see my post to Elaine - but she doesn't know anything - my doctor, that is. Not Elaine. The endo - I've seen him once - appears to have his mind set in a one-textbook-rut and I'm worried about seeing him again. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. If I say it sufficiently often I may convince myself.

I have so far only seen a GP, and only once.

***I don't know how your system works. Here, I have trouble seeing my doctor - this is because I refuse to see different doctors within the same practice so I insist on seeing the same one - this means that sometimes I have to wait a few weeks before being able to see her. But I must confess to making appointments to see her even though I have nothing in particular to see her about at the time but because, since this diagnosis, I know perfectly well there will be pressing questions by the time I get to see her. This is what's happened now - with the results that were ignored - luckily I'd made this appointment already. If I thought I was going to waste her time and stop someone else seeing her then obviously I would cancel the appointment - but this hasn't happened yet.

I had three tests, at the beginning of my diagnosis, in May and June. But then no tests until September 18, when I requested them. So far, I believe I have only been tested for TSH and T4 and T3. Now if I do, indeed, have some kind of thyroiditis, I will have been on PTU for 5 months for no reason.

***It does sound to me as though it would be a good idea to try and get your doctor on your side. I'm saying this whilst also saying that I don't know how your system works.

I just went into the doctor's office (that is the only way I can get any results - phoning doesn't do any good at all), to request seeing an endocrinologist, which so far I have never been referred to.

***I never telephone for results. I always make an appointment to see the doctor to get the results. To make her feel involved. I know that GPs here often simply feel like paper-pushers. They go through all that training - which, although not much good for us 'cos they still don't know much about thyroids, is a lot of work to go through - and then they end up just sitting behind a desk and writing prescriptions, ordering tests, writing up case notes on the computer and writing letters to specialists. It's a real problem. I can understand that they have a morale problem too.

You would have thought I was screaming curse words. First they put me in a little room with this lady who grilled me about why I wanted to see a specialist and then things got even wierder, but I don't want to be paranoid here.

***This is awful. I can't imagine who these people think they are. As far as I'm concerned we are the clients and their attitude should reflect that.

Hope the end result winds up that the doctor will "allow" me to see an endocrinologist, finally! Well, this is the new state of the medical profession with HMOs!

***Health Medical Officers??? Health Management somethings?? What's HMO? I hope you see an endocrinologist too. I think it has to be your right. You wouldn't expect your car to be serviced by the receptionist and not the mechanic would you. I am constantly staggered and amazed at the attitudes about these things. It's rife over here. I'm lucky in my doctor. But I've had years of facing down this sort of crap with my son in hospital, my partner in hospital - and other people. It frightens me to think of people who are unable to sort these gits out. And I'm conscious too of my own limitations in the light of my lack of knowledge and at some point you have to put your faith in someone. But, who?

***I remember after I'd had a total hysterectomy - for endometriosis - I tried HRT for a month and I know that if I'd stayed on it it would have killed me. I know it. When I saw the specialist again and told him I couldn't, and wouldn't use it, he went apeshit. He left the room and came back with two other consultants (also men) and they stood there and tried to browbeat me - they were washing their hands of me and should I drop dead of a heart attack as I probably would in the near future then it wasn't their responsibility, blah, blah, blah. Jeez.... Amazing. I was forced to inform them that their behaviour was unprofessional and lost them any credibility they may have had in the first place. It was truly disgusting.

Good luck on your own journey. This sure is teaching me lots. What I have learned is going to be very good experience for when I age even more. I can't imagine how our elders navigate within this medical system!

***Well, yes - this is good in that we'll be better prepared. It's mainly the elders that worry me when I think about how they're treated... <shiver> - ok, let's not go there just now.

Happy Weekend,

Arlene wrote:

PS: THANK YOU THANK YOU, Elaine, for all your continued help on this group!

*** wrote: - Yes indeed. You're a real boon.

[Guest guest]

Oh ,

I wish you and I lived around the corner from each other so we could commiserate. I had NEVER been sick a day in my life before this. Only stayed in hospitals for 24 hours when I had my two childen, and that was 29 and 25 years ago now. So, I was totally unprepared for any of this to happen to my body, mind or soul...

You are absolutely so right-on about being obsessed by this health problem. I swing back and forth between feeling I am absolutely going to get on top of this and heal my body myself, and feeling defeated and that I am never going to get better. To complicate matters, my digestive system has been whacko since the onset of all these problems. Instead of being too loose, I got constipated, hemorrhoids, and then my whole coccyx area became so inflamed that I was not able to sit down without a whoopee cushion, and even then for only around 10 minutes at a time. Nothing I have done (either with the GP or naturopath) has helped this constipation very much (except for the two weeks when I felt my Graves had gone into into balance, and before I went hypo). So, my bottom is unbearable in addition to all my other symptoms. The GP has only prescribed more and more cortisone suppositories and stool softeners, which include sorbitol and I am allergic to that.

I have to write to you something about HRTs before I forget: Good for you, lady! My sister had her hysterectomy at around age 55, after trying for years not to have to undergo one. But her bleeding was too heavy and she was pre-cancerous, and so had that hysterectomy. She is a person who pretty much goes along with what the doctor says. (This is not the same sister who has Graves' and fought the doctors tooth and nail some 30 years ago). Anyway, the bottom line I wanted to share is that within a couple of years, after the doctors swearing that HRT would protect against heart attack, my sister had such a severe heart attack, at age 59, she almost died. HRT did nothing to help avert that, and now they have found otherwise anyway. So much for their medication.

BTW, I am seeing an endocrinologist on Monday. It is the only one listed on my HMO (Health Maintenance Organization - Managed Care !!!! ha!!!) Could not believe that I got into him within one days' time. We shall see what he has to say. I did look over what my GP had ordered for me, since I am trying to educate myself quickly about these horrible diseases. Yes, I did have a TPO test, and it showed antibodies (if this is what it does, not sure here). But it was " out of range " anyway. It was 124 and this was after I was on PTU for almost two months and " normal " TSH and T4 by this time. So, I don't know what this means. I never had a TSI or TGI (is that the other one?) I totally agree with you that we need all the help we can get and I sure as heck do not want to alienate any of these health care professionals. I continue to work with my naturopath, but she is in Germany right now, and is not working in conjunction really, with the other doctor, so they are not coordinated. And I feel like it is the office staff who are the " Gatekeepers " for this managed care system, and that I cannot get past them. They are the ones who kept me from having a blood test for 3 weeks when I felt in my body that I had gone hypo, though I had never had this before.

Yow, no wonder we are obsessed with our bodies - if we don't keep constant watch, who else is going to do this? I am so frightened of going hyper and into thyroid storm again, that I am hyper-aware now. I believe now that I have stabilized from hyper to hypo and am down (too quickly, I think) from 300 mg. of PTU to 100 per day. But I am starting to have palpitations, and breathlessness again, and my temperature is more normal too (now back to 98 from 96 when I was hypo and sometimes even sweating), so I think I have reasons to feel afraid of going hyper again. I just want to be normal again!

You wrote that you always make an appointment with your doctor for results and never telephone. I can't even get in to see the darn doctor, because of these " gatekeepers " . So, one more frustration added to the list. My greatest help so far has been hypnotherapy and constant meditation every day with tapes from the hypnotherapist for relaxation and healing.

Arlene

Re: Unexpected results

Hello Arlene

Hi ,

I am also so new at this that I am dumbfounded by all that I don't know.

***Do you find you're pre-occupied with it? It's driving me nuts. I have friends who are boringly interested in their own health - they can't talk about anything else - and now I fear that I'm the same.... It even seems to be stopping me from doing some things - or maybe I'm using it as an excuse...

At least your doctors ordered what sounds like all the right tests.

***My doctor is brilliant - see my post to Elaine - but she doesn't know anything - my doctor, that is. Not Elaine. The endo - I've seen him once - appears to have his mind set in a one-textbook-rut and I'm worried about seeing him again. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. I must not fall out with him. I might need him. If I say it sufficiently often I may convince myself.

I have so far only seen a GP, and only once.

***I don't know how your system works. Here, I have trouble seeing my doctor - this is because I refuse to see different doctors within the same practice so I insist on seeing the same one - this means that sometimes I have to wait a few weeks before being able to see her. But I must confess to making appointments to see her even though I have nothing in particular to see her about at the time but because, since this diagnosis, I know perfectly well there will be pressing questions by the time I get to see her. This is what's happened now - with the results that were ignored - luckily I'd made this appointment already. If I thought I was going to waste her time and stop someone else seeing her then obviously I would cancel the appointment - but this hasn't happened yet.

I had three tests, at the beginning of my diagnosis, in May and June. But then no tests until September 18, when I requested them. So far, I believe I have only been tested for TSH and T4 and T3. Now if I do, indeed, have some kind of thyroiditis, I will have been on PTU for 5 months for no reason.

***It does sound to me as though it would be a good idea to try and get your doctor on your side. I'm saying this whilst also saying that I don't know how your system works.

I just went into the doctor's office (that is the only way I can get any results - phoning doesn't do any good at all), to request seeing an endocrinologist, which so far I have never been referred to.

***I never telephone for results. I always make an appointment to see the doctor to get the results. To make her feel involved. I know that GPs here often simply feel like paper-pushers. They go through all that training - which, although not much good for us 'cos they still don't know much about thyroids, is a lot of work to go through - and then they end up just sitting behind a desk and writing prescriptions, ordering tests, writing up case notes on the computer and writing letters to specialists. It's a real problem. I can understand that they have a morale problem too.

You would have thought I was screaming curse words. First they put me in a little room with this lady who grilled me about why I wanted to see a specialist and then things got even wierder, but I don't want to be paranoid here.

***This is awful. I can't imagine who these people think they are. As far as I'm concerned we are the clients and their attitude should reflect that.

Hope the end result winds up that the doctor will " allow " me to see an endocrinologist, finally! Well, this is the new state of the medical profession with HMOs!

***Health Medical Officers??? Health Management somethings?? What's HMO? I hope you see an endocrinologist too. I think it has to be your right. You wouldn't expect your car to be serviced by the receptionist and not the mechanic would you. I am constantly staggered and amazed at the attitudes about these things. It's rife over here. I'm lucky in my doctor. But I've had years of facing down this sort of crap with my son in hospital, my partner in hospital - and other people. It frightens me to think of people who are unable to sort these gits out. And I'm conscious too of my own limitations in the light of my lack of knowledge and at some point you have to put your faith in someone. But, who?

***I remember after I'd had a total hysterectomy - for endometriosis - I tried HRT for a month and I know that if I'd stayed on it it would have killed me. I know it. When I saw the specialist again and told him I couldn't, and wouldn't use it, he went apeshit. He left the room and came back with two other consultants (also men) and they stood there and tried to browbeat me - they were washing their hands of me and should I drop dead of a heart attack as I probably would in the near future then it wasn't their responsibility, blah, blah, blah. Jeez.... Amazing. I was forced to inform them that their behaviour was unprofessional and lost them any credibility they may have had in the first place. It was truly disgusting.

Good luck on your own journey. This sure is teaching me lots. What I have learned is going to be very good experience for when I age even more. I can't imagine how our elders navigate within this medical system!

***Well, yes - this is good in that we'll be better prepared. It's mainly the elders that worry me when I think about how they're treated... <shiver> - ok, let's not go there just now.

Happy Weekend,

Arlene wrote:

PS: THANK YOU THANK YOU, Elaine, for all your continued help on this group!

*** wrote: - Yes indeed. You're a real boon.

[Guest guest]

....have you tried Linusit (Organic golden Linseeds - or Flaxseeds, if you're in the States)

Swallow a mouthful whole with LOTS of water. Boy, you'll see a difference!! They swell up (try some in a glass with water overnight!) and they become like jelly (jello). VERY healthful, full of omega 3 and all the goodies the digestive tract should have.

Keep up the meditation/relaxation - try aromatherapy candles and/or pure Lavender oil on pulse points and pillow at night??

Good luck and God bless.

Peta x

[Guest guest]

***Hello Arlene

***You wrote:

Oh ,

I wish you and I lived around the corner from each other so we could commiserate. I had NEVER been sick a day in my life before this. Only stayed in hospitals for 24 hours when I had my two childen, and that was 29 and 25 years ago now. So, I was totally unprepared for any of this to happen to my body, mind or soul...

***And then just as I was getting really wound up to have a good chat with you about all this some of my freelance work came along and dropped itself in my lap. When that happens everything else gets dropped and I have to do it every second I'm awake - partly because it's really what pays my bills and partly because it's well-paid simply because it's always so last minute and they want it done yesterday. So, please forgive the long silence. If you did live just around the corner I would have rushed around, hugged you, and rushed off again to be heard of no more until now - but at least you'd have know why...

You are absolutely so right-on about being obsessed by this health problem. I swing back and forth between feeling I am absolutely going to get on top of this and heal my body myself, and feeling defeated and that I am never going to get better.

***Although I have bags under my eyes down to my knees from this protracted stint of the working every second I'm awake bit, I must say that it's the best break I've had since the diagnosis from the obsession with this health thing. So, I'm shattered, but feel happier than I have for a few months because I haven't been worrying at this hyperT stuff all the time, feeling as though there must just be another little bit of knowledge that would fix it for me.

To complicate matters, my digestive system has been whacko since the onset of all these problems. Instead of being too loose, I got constipated, hemorrhoids, and then my whole coccyx area became so inflamed that I was not able to sit down without a whoopee cushion, and even then for only around 10 minutes at a time. Nothing I have done (either with the GP or naturopath) has helped this constipation very much (except for the two weeks when I felt my Graves had gone into into balance, and before I went hypo). So, my bottom is unbearable in addition to all my other symptoms. The GP has only prescribed more and more cortisone suppositories and stool softeners, which include sorbitol and I am allergic to that.

***Oh dear - this sounds really uncomfortable and miserable. Sorry to hear about this. One of the first things I did after my diagnosis was go out and buy a vegetable juicer. A mixture of carrot and apple juice is usually helpful, although just apple juice can have even more of a startling effect. Diet is something I'm very conscious of in terms of its effect on overall health - trouble is, I feel the need to binge out on wicked stuff sometimes when I'm feeling miserable and then I feel more miserable of course. Have you found an answer to this problem yet?

I have to write to you something about HRTs before I forget: Good for you, lady! My sister had her hysterectomy at around age 55, after trying for years not to have to undergo one. But her bleeding was too heavy and she was pre-cancerous, and so had that hysterectomy. She is a person who pretty much goes along with what the doctor says. (This is not the same sister who has Graves' and fought the doctors tooth and nail some 30 years ago). Anyway, the bottom line I wanted to share is that within a couple of years, after the doctors swearing that HRT would protect against heart attack, my sister had such a severe heart attack, at age 59, she almost died. HRT did nothing to help avert that, and now they have found otherwise anyway. So much for their medication.

***Ohmigod! I hope she's ok now.

BTW, I am seeing an endocrinologist on Monday. It is the only one listed on my HMO (Health Maintenance Organization - Managed Care !!!! ha!!!) Could not believe that I got into him within one days' time. We shall see what he has to say. I did look over what my GP had ordered for me, since I am trying to educate myself quickly about these horrible diseases. Yes, I did have a TPO test, and it showed antibodies (if this is what it does, not sure here). But it was "out of range" anyway. It was 124 and this was after I was on PTU for almost two months and "normal" TSH and T4 by this time. So, I don't know what this means. I never had a TSI or TGI (is that the other one?) I totally agree with you that we need all the help we can get and I sure as heck do not want to alienate any of these health care professionals. I continue to work with my naturopath, but she is in Germany right now, and is not working in conjunction really, with the other doctor, so they are not coordinated. And I feel like it is the office staff who are the "Gatekeepers" for this managed care system, and that I cannot get past them. They are the ones who kept me from having a blood test for 3 weeks when I felt in my body that I had gone hypo, though I had never had this before.

***I'd like to ask you about this visit and tests but maybe there's more info in your other emails to the list so I'll wait until I've caught up with them.

Yow, no wonder we are obsessed with our bodies - if we don't keep constant watch, who else is going to do this? I am so frightened of going hyper and into thyroid storm again, that I am hyper-aware now. I believe now that I have stabilized from hyper to hypo and am down (too quickly, I think) from 300 mg. of PTU to 100 per day. But I am starting to have palpitations, and breathlessness again, and my temperature is more normal too (now back to 98 from 96 when I was hypo and sometimes even sweating), so I think I have reasons to feel afraid of going hyper again. I just want to be normal again!

***We'll get there. We WILL get there.

You wrote that you always make an appointment with your doctor for results and never telephone. I can't even get in to see the darn doctor, because of these "gatekeepers". So, one more frustration added to the list. My greatest help so far has been hypnotherapy and constant meditation every day with tapes from the hypnotherapist for relaxation and healing.

***What does the meditation do for you?? I tried taking some meditation classes but have stopped as I couldn't work out what it was doing for me, if anything - or even if I was doing it right. Would I know if I was doing it right?

***Anyway, I shall now try to catch up with the other 785 emails in my inbox - but I particularly wanted to answer this one - I didn't want you to think I'd just disappeared off the face of the earth, as it were.

We'll get there,

[Guest guest]

Hi ,

So good hearing from you, and darn, I see you are in the UK, so you are definitely not right around the corner from me, so we could have a cup of tea from time to time together...(anywhere near Hartley Wintney? - cousins there)

I understand completely about freelance work, since I had been a potter/photographer before this diagnosis, though I have taken some time for myself to heal, and so I have not been doing shows or stressing out over gallery pieces lately.

Meditation: Yes! Of all my therapies, this has truly been the most helpful of all. I began meditation years and years ago, majoring in transpersonal (spiritual) psychology, but had let my " practice " get pretty rusty. Before my Graves' diagnosis, when my emotions were all over the map and I could not relax, no matter what, I knew I needed hypnosis and began seeing a clinical hypnotherapist, who is also a family therapist. She makes a new " guided visualization " tape for me each month, depending on what I need the most at that time. I have learned how to let go of lots of my emotional baggage, so that I can get into an " altered " state, that of total focused relaxation. I think this is why, along with naturopathic care, I went from hyper to hypo so quickly. You could buy visualization tapes, also, but it might help you to join an ongoing meditation group (usually these are free). Definitely good for healing people with Graves', since this is so stress-related.

As far as what I ingest vs. what goes out and how it goes out (constipation) - boy, nothing I eat seems to make a difference. The only thing which seems to matter is whether my thyroid is in some kind of balance. Interestingly, my older sister who had Graves' 25 years ago (very very extreme case), was also constipated during this time. So, there must be something in our constitution. This is the only time in my life when I had this problem! I eat so much bulk (two green salads a day, grape nuts for breakfast, prunes, lots of fruit, and on and on, including a minimum of 8 glasses of water per day! Nothing mattered, except my thyroid levels! I seem to be on the right track now though, being down to 25 mg. of PTU per day, and closer to normal levels on my free T4 and TSH. I do have a juicer, and when I get back from Yosemite next week (going there on Saturday), I will try making some fresh juice, though I buy it here, and it hasn't seemed to make any difference so far, but thanks.

I know what you mean about taking a vacation from the obsession. When I go away from here, for any reason, and am around people more (I work from home also), I forget some of these problems and realize that I really am better off than when I sit home and worry about this stuff. I guess I had never had to do this before, in my lifetime, so perhaps this is the reason for the obsession too, as well as not trusting my life in my doctor's hands.

Let's see - you also asked how my visit with the endocrinologist went. Yes, I do believe I posted on here how that visit went. Before I saw the endo, I had gone from hyper to hypo and was feeling very very ill. I was falling asleep by 12 noon, my temperature was around 96, I had headaches every morning, etc. But by the time I saw the endo, I had gone down from 300 mg. to 50 mg. PTU and was beginning to feel much better. The month before, my TSH was close to 20 and my free T4 was .42. By the time I saw the endo, my free T4 had gone to .074 (still hypo slightly) and my TSH was 4.46. However, for some reason, he still wanted me to stay on 50 mg. of PTU.

Thank you, once again, to all on this wonderful list! I saw people writing about how endocrinologists sometimes tend to keep people on too high doses, for too long. My GP said I could go off PTU altogether, when I went in to see her for my women's exam. She didn't understand why the endo wanted to keep me on 50 mg. Well, so there we had two different opinions amongst the experts. Then, Elaine and wrote about TSI levels being the best indicator for successful remission, so it got me a little worried about going off this PTU altogether. However, I was beginning to feel horrible again, with hypo symptoms - so I compromised and went down to 25 mg. PTU by myself, since I am not scheduled to have another blood test for around 3-4 more weeks. My GP says the best indication of my thyroid hormone is " how I feel " and the endo says the only indication is blood tests. Interesting...my naturopath - oh well, that is another story completely. In the meantime, I am going broke from paying for all these medical procedures, going nuts from having to go from one appointment to another, and , no wonder I am obsessed! LOL

Stay well, and stay obsession-free!

we will, indeed, get there,

Arlene

Re: Unexpected results

***Hello Arlene

***You wrote:

Oh ,

I wish you and I lived around the corner from each other so we could commiserate. I had NEVER been sick a day in my life before this. Only stayed in hospitals for 24 hours when I had my two childen, and that was 29 and 25 years ago now. So, I was totally unprepared for any of this to happen to my body, mind or soul...

***And then just as I was getting really wound up to have a good chat with you about all this some of my freelance work came along and dropped itself in my lap. When that happens everything else gets dropped and I have to do it every second I'm awake - partly because it's really what pays my bills and partly because it's well-paid simply because it's always so last minute and they want it done yesterday. So, please forgive the long silence. If you did live just around the corner I would have rushed around, hugged you, and rushed off again to be heard of no more until now - but at least you'd have know why...

You are absolutely so right-on about being obsessed by this health problem. I swing back and forth between feeling I am absolutely going to get on top of this and heal my body myself, and feeling defeated and that I am never going to get better.

***Although I have bags under my eyes down to my knees from this protracted stint of the working every second I'm awake bit, I must say that it's the best break I've had since the diagnosis from the obsession with this health thing. So, I'm shattered, but feel happier than I have for a few months because I haven't been worrying at this hyperT stuff all the time, feeling as though there must just be another little bit of knowledge that would fix it for me.

To complicate matters, my digestive system has been whacko since the onset of all these problems. Instead of being too loose, I got constipated, hemorrhoids, and then my whole coccyx area became so inflamed that I was not able to sit down without a whoopee cushion, and even then for only around 10 minutes at a time. Nothing I have done (either with the GP or naturopath) has helped this constipation very much (except for the two weeks when I felt my Graves had gone into into balance, and before I went hypo). So, my bottom is unbearable in addition to all my other symptoms. The GP has only prescribed more and more cortisone suppositories and stool softeners, which include sorbitol and I am allergic to that.

***Oh dear - this sounds really uncomfortable and miserable. Sorry to hear about this. One of the first things I did after my diagnosis was go out and buy a vegetable juicer. A mixture of carrot and apple juice is usually helpful, although just apple juice can have even more of a startling effect. Diet is something I'm very conscious of in terms of its effect on overall health - trouble is, I feel the need to binge out on wicked stuff sometimes when I'm feeling miserable and then I feel more miserable of course. Have you found an answer to this problem yet?

I have to write to you something about HRTs before I forget: Good for you, lady! My sister had her hysterectomy at around age 55, after trying for years not to have to undergo one. But her bleeding was too heavy and she was pre-cancerous, and so had that hysterectomy. She is a person who pretty much goes along with what the doctor says. (This is not the same sister who has Graves' and fought the doctors tooth and nail some 30 years ago). Anyway, the bottom line I wanted to share is that within a couple of years, after the doctors swearing that HRT would protect against heart attack, my sister had such a severe heart attack, at age 59, she almost died. HRT did nothing to help avert that, and now they have found otherwise anyway. So much for their medication.

***Ohmigod! I hope she's ok now.

BTW, I am seeing an endocrinologist on Monday. It is the only one listed on my HMO (Health Maintenance Organization - Managed Care !!!! ha!!!) Could not believe that I got into him within one days' time. We shall see what he has to say. I did look over what my GP had ordered for me, since I am trying to educate myself quickly about these horrible diseases. Yes, I did have a TPO test, and it showed antibodies (if this is what it does, not sure here). But it was " out of range " anyway. It was 124 and this was after I was on PTU for almost two months and " normal " TSH and T4 by this time. So, I don't know what this means. I never had a TSI or TGI (is that the other one?) I totally agree with you that we need all the help we can get and I sure as heck do not want to alienate any of these health care professionals. I continue to work with my naturopath, but she is in Germany right now, and is not working in conjunction really, with the other doctor, so they are not coordinated. And I feel like it is the office staff who are the " Gatekeepers " for this managed care system, and that I cannot get past them. They are the ones who kept me from having a blood test for 3 weeks when I felt in my body that I had gone hypo, though I had never had this before.

***I'd like to ask you about this visit and tests but maybe there's more info in your other emails to the list so I'll wait until I've caught up with them.

Yow, no wonder we are obsessed with our bodies - if we don't keep constant watch, who else is going to do this? I am so frightened of going hyper and into thyroid storm again, that I am hyper-aware now. I believe now that I have stabilized from hyper to hypo and am down (too quickly, I think) from 300 mg. of PTU to 100 per day. But I am starting to have palpitations, and breathlessness again, and my temperature is more normal too (now back to 98 from 96 when I was hypo and sometimes even sweating), so I think I have reasons to feel afraid of going hyper again. I just want to be normal again!

***We'll get there. We WILL get there.

You wrote that you always make an appointment with your doctor for results and never telephone. I can't even get in to see the darn doctor, because of these " gatekeepers " . So, one more frustration added to the list. My greatest help so far has been hypnotherapy and constant meditation every day with tapes from the hypnotherapist for relaxation and healing.

***What does the meditation do for you?? I tried taking some meditation classes but have stopped as I couldn't work out what it was doing for me, if anything - or even if I was doing it right. Would I know if I was doing it right?

***Anyway, I shall now try to catch up with the other 785 emails in my inbox - but I particularly wanted to answer this one - I didn't want you to think I'd just disappeared off the face of the earth, as it were.

We'll get there,

[Guest guest]

Hi Peta,

Thanks for all your beautiful natural ideas on constipation. I do seem very allergic to flaxseeds, and have problems with psyllium also, but I am getting there. I keep trying different natural remedies!

Thanks for the reminder about lavender oils. I used to put

lavender oil directly under my nose at night before I went to sleep. Lovely thoughts and dreams! I will try this again tonight, because I have been having sleep difficulties since I went hypo.

Arlene

Re: Unexpected results....have you tried Linusit (Organic golden Linseeds - or Flaxseeds, if you're in the States) Swallow a mouthful whole with LOTS of water. Boy, you'll see a difference!! They swell up (try some in a glass with water overnight!) and they become like jelly (jello). VERY healthful, full of omega 3 and all the goodies the digestive tract should have. Keep up the meditation/relaxation - try aromatherapy candles and/or pure Lavender oil on pulse points and pillow at night?? Good luck and God bless. Peta x

[Guest guest]

, it sounds like your herbalist is on the right track, though.

Detoxifying the body is necessary, though it can be uncomfortable for a

while. Maybe it would be a better idea to just slow down your intake

of whatever it is that she gave you to drink and detoxify more slowly.

Just a thought.

Donna

http://trak.to/life

www.reliv.com

Take control of your health!

Alison wrote:

Hello

Peta Thanks for the

tip. Usually my problem is the very opposite. In fact the last

few days have been a nightmare - hardly able to leave the loo. And,

what's most unfortunate is that I think it's stuff a herbalist gave me

that's done the damage. I went to her thinking of having supervised

doses of lemon balm, bugle weed and motherwort that people on here have

talked about. She insisted everything's to do with digestion first

and sent me away with this stuff, this gunk. Made me much worse to

start with but I thought that many of these therapies do actually make

things worse at first so I stuck with it. But the last few days have

been so awful I'm not going back to her. Maybe I should trust myself

enough to just go and get the herbs and do it myself anyway. I've

never really got into the aromatherapy. Perhaps it's time.

I'm still having problems with the meditation because I don't really know

what I'm aiming at. Happy

weekend,

Re: Unexpected

results

....have you tried

Linusit (Organic golden Linseeds - or Flaxseeds, if you're in the States)

Swallow a mouthful whole with

LOTS of water. Boy, you'll see a difference!! They swell up

(try some in a glass with water overnight!) and they become like jelly

(jello). VERY healthful, full of omega 3 and all the goodies the digestive

tract should have.

Keep up the meditation/relaxation

- try aromatherapy candles and/or pure Lavender oil on pulse points and

pillow at night??

Good luck and God bless.

Peta x

[Guest guest]

In a message dated 11/2/2001 5:17:52 AM Eastern Standard Time, PParkegail@... writes:

If mine tries to push me into radioactive tests I don't know what I'll be able to do. By the way, why has NO-ONE answered my plea about whether ultrasound is as effective a test as RAI?? Maybe they don't know, and I'll just have to wait for my appointment (3rd Dec).

Dear Peta,

I know that someone on this board knows about the different tests, and that they said there is no reason for the uptake scan, as other tests are just as effective. However, I am not the one who knows about this (unfortunately, I took the radioactive test--I don't think it did me any harm, but, had I known there was another way, I definitely would have taken it), but maybe Elaine or know the answer, or maybe it's on iThyroid.com. Anyway, the radioactive test is NOT the same as RAI, which is destruction of the thyroid, and you definitely don't want that. Just make sure you are clear on the difference between the 2--and remember, also, that no one can make you do anything--you always have the right to say no.

I hope you can get the answer here about the other tests.

Best,

AntJoan

[Guest guest]

Dear Arlene,

Speaking of iodine - should we be cutting it down or out altogether. I have taken Neways Maximol colloidal mineral solutions for years - it's brilliant but it does contain iodine.

Another thing, has anyone tried eliminating gluten from their diet (it says on one of the websites that HyperT can be an adverse reaction to gluten (Wheat, oats, rye & barley)

Love,

Peta x

[Guest guest]

Thanks, Joan. )

- Peta x

[Guest guest]

Thanks, , I'll print that out and take it with me!

- Peta x

[Guest guest]

But if you don't have insurance, here in the states, it also costs the earth. The first endo I saw was $250, and he saw me for about 20 mins, did no lab work, and wouldn't write the prescription for me until I "thought about RAI for the weekend". He ended up not writing the scrip for another 2 weeks along with a semi-nasty letter and mailing it to me. Thank goodness for charge cards, because I don't have insurance available to me through my work, and have paid for all of this Grave's stuff on credit with my Visa.

Penny

Re: Unexpected results

Just out of interest, Arlene, what is your allergic reaction to Flaxseeds?? You guys in the States are lucky to be able to chop and change your doctors and specialists - we just get who we are given (Unless we choose to go private, in which case it costs the earth!) I envy you being able to 'sack' your endos etc..if they are not as sensitive to your needs as you would like. If mine tries to push me into radioactive tests I don't know what I'll be able to do. By the way, why has NO-ONE answered my plea about whether ultrasound is as effective a test as RAI?? Maybe they don't know, and I'll just have to wait for my appointment (3rd Dec). Happy Lavender sniffing! Love, Peta x

[Guest guest]

Hi Peta,

When I have allergic reactions to food products or herbs (and I have lots), I inevitably have headaches in the back of my neck and extreme pain in the back of my neck. When I eliminate this particular product, those symptoms go away. I also get aches and pains in my body when I am allergic to something. I know this is not a classic symptom of allergies, but it seems to be how my body responds and I have kept journals for years about different foods. Sometimes, I can eliminate a food, and then re-introduce it say a month or two later, and be OK with it. I have tried flaxseed now around ten different times, and I know I will try it again since it is high in those Omega 3s, which I need. My naturopath wanted me to do fish oil instead, but I was wary of this since it might have iodine in it. Anyone know about this?

Sorry I can't help you out on that ultrasound question, but I am really ignorant about some of this stuff still...

Arlene

Re: Unexpected resultsJust out of interest, Arlene, what is your allergic reaction to Flaxseeds?? You guys in the States are lucky to be able to chop and change your doctors and specialists - we just get who we are given (Unless we choose to go private, in which case it costs the earth!) I envy you being able to 'sack' your endos etc..if they are not as sensitive to your needs as you would like. If mine tries to push me into radioactive tests I don't know what I'll be able to do. By the way, why has NO-ONE answered my plea about whether ultrasound is as effective a test as RAI?? Maybe they don't know, and I'll just have to wait for my appointment (3rd Dec). Happy Lavender sniffing! Love, Peta x

[Guest guest]

Hi Petra x,

I am sure you are refering to the uptake or RAI-U test. Here is a portion of an article by Elaine on the subject. It may be found in its entirety at http://www.suite101.com/article.cfm/graves_disease/64958

"Patients who are initially diagnosed with hyperthyroidism are often ordered to have a radioiodine uptake test (RAI-U) or scan. This is a diagnostic test used to determine how well the thyroid gland takes up or absorbs iodine, and how the iodine is distributed among the various cells in the gland. In the RAI-U, true hyperthyroidism can be distinguished from conditions where patients happen to be taking excess thyroid hormone or have transient thyroiditis due to infections. In true hyperthyroidism, the uptake or amount of iodine absorbed by the thyroid is increased. For fifty years, the RAI-U test has been used to help diagnose autoimmune hyperthyroidism, which is responsible for more than 90% of all cases of hyperthyroidism in the West. In recent years, however, this test is no longer as widely used. Why is the RAI-U no longer needed? A blood test for stimulating TSH receptor antibodies (also known as thyroid stimulating immunoglobulins or TSI) is more specific for Graves' disease. Furthermore, the blood test doesn't expose the patient and his or her already stressed thyroid to excess radioiodine."

Re: Unexpected results

Just out of interest, Arlene, what is your allergic reaction to Flaxseeds?? You guys in the States are lucky to be able to chop and change your doctors and specialists - we just get who we are given (Unless we choose to go private, in which case it costs the earth!) I envy you being able to 'sack' your endos etc..if they are not as sensitive to your needs as you would like. If mine tries to push me into radioactive tests I don't know what I'll be able to do. By the way, why has NO-ONE answered my plea about whether ultrasound is as effective a test as RAI?? Maybe they don't know, and I'll just have to wait for my appointment (3rd Dec). Happy Lavender sniffing! Love, Peta x