Re: Back From The Doctor

July 16, 1999

Lori,

Have you done some Internet searching for information about leaks following

laporoscopy? You might find some information there that will give you a

clue about whether it's an unavoidable possible risk without implying

medical negligence.

Since you brought this up, it made me recall something I guess I wanted to

forget. When my husband had spinal surgery last September, they told me

there'd been a " little " problem. The spinal cord had adhered unexpectedly

to my husband's spine and it caused a leak in his spinal fluid. They did a

graft to repair the leak but they said that he'd be in a " little " more pain

for awhile. Ten months later, he's still in pain and though he was working

shortly before he had surgery, now he's permanently disabled. Makes me

wonder what the real implication of that spinal fluid leak might be. The

problem is, the last person who is going to tell you that a doctor might

have made a mistake is another doctor.

Take care,

Geri

July 16, 1999

Lori,

When I had my bile leak, I asked the next doctor I had if the original

doctor had made any mistakes, he was non committal. I don't think you will

ever get another medical person to say a word about another doctor. They

are like a tight knit cult.

I had an ERCP and a stent inserted also, but the leak persisted and they

had to do open surgery to fix the leaks. I hope they rectify the mistakes

soon, you should not have to endure this sort of thing.

SueB.

----------

> From: Lori Rosenberg <LoriRosenberg@...>

> onelist

> Subject: [ ] Back from the doctor

> Date: Friday, 16 July 1999 10:44

>

> From: " Lori Rosenberg " <LoriRosenberg@...>

>

> I went to the doctor for my follow up today. I decided to ask him

straight

> out if the surgeon made a mistake. He said he really couldn't tell me for

> sure. He said that about 10% of laproscopic GB surgery ends up with a

bile

> leak. But he further said that my leak disturbed him in that it wasn't

where

> he would have expected it to be (he explained that sometimes the GB

adheres

> to the liver and just pulling it away causes the leak- but that wasn't

the

> case with me), and that during the ERCP he did that night I was admitted-

it

> was hard to really see what had actually happened. He did give me a copy

of

> his findings and seemed genuine- so I'm not sure where to go from here.

>

> I asked him if he'd absolutely ruled out psc, and he said he was pretty

sure

> I didn't have it- but when he does the ERCP on 8/9 to remove the stent he

> placed in my bile duct, he's going to inject dye into every little duct

to

> see if there are any strictures. Again, I was told I was an anomaly

(don't I

> just love hearing that), but he'd do his best to figure out why I have

had

> all these problems for 10+ years with my liver. This doctor seems to be a

> really nice guy and really wants to help me, so I'm crossing my fingers.

>

> I'm feeling alot better, except where the bile leak is. It's still pretty

> painful. I think I'm going to try to go back to work (part time) next

week.

> I really do miss work (sicko!!), and the doctor said I could go back as

soon

> as I felt I was ready. I hate the idea of going with my little drainage

bag-

> not sure how to dress around it- but it's here to stay for another 3

weeks

> at least. Ramble... ramble... ramble.....

>

> LoriRosenberg@...

>

> You don't stop laughing because you grow old; you grow old because you

stop

> laughing

>

> ---------------------------

February 1, 2002

Thanks Carol. I was hoping to hear from the doctor today about my labs, but maybe tomorrow. I had to call the hospital to have them call the results up. Hopefully, they have done it.

Carol, I am thinking that my "age" is part of the problem as to why I can't get my body to work with the meds. HOWEVER, I didn't think that being 50 was THAT old....however, my body thinks differently, I guess!!! Anyway, I am hopeful that cutting down the meds will help until my body can get used to this stuff. I was just horrified when I told the doctor that I was not doing so good and the expression on her face was very frightening!

THEN, tonight, I did the unpardonable! I actually got SO tired and angry with myself, that I went out and ate some Kentucky honey BBQ Wings. For me, this is just like taking poison, but I am so weary of not being able to eat out like normal people (because of the celiac). I was SO hungry and did not want to have to cook when I got home. After running around for Mom, I just dind't have the energy.

WELL...I am going to pay for it big time. I will have horrible stomach aches, headaches, and will be extremely grouchy for the next couple of days. All because I got impatient! I HAVE to take time for me so that I don't get into this situation! You would think that after one year on this diet, that I would have worked out the kinks and had an emergency plan all lined up and extra food. What an idiot I am...just realized that I had the SOUP in the fridge!

Well...I have NOT one person to blame but ME. I am going to sit down at the next 3 day weekend and plan this all out.

Heck, now I feel better having written this all out....I have a plan.....thanks for letting me just ramble!!!

debby

Re: [ ] back from the doctor

Debby, I am sorry to hear that you are still not feeling well. I understand your being scared about your body not utilizing some of the meds. I have found that as I have gotten older, I am having more difficulty with my system not responding to certain meds or else I have some sort of sensitivity that prevents me from continuing a medication and having to start another. Try to stay positive. I know that is difficult to do. I am fighting being very discouraged myself. I am back into the feeling crummy routine. I was at the cardiologist yesterday and the neurologist on Monday. They both want me to get in to see the rheumatologist soon. I have an appt. with my gastro/hep doc fairly soon. I am concerned that my LFT's will be on the rise again. Know I am thinking about you and will pray that you improve soon. Carol tdcc wrote:

Hi...I got back from the doctor. She is not at all happy that I have not been feeling so great the past few days. She is fairly certain that I am having a problem with the Cellcept. She was OK with me lowering the prednisone to 10 mg. She still wants me to drop lower. She ordered an Xray, but I didn'twant to wait at the hosptial for 3 hours so will do it later. The blood work will be in tomorrow, so she should have the results tomorrow. I hope they show SOMETHING...so I can get to feeling better. She did lower my Cellcept to 1000mg per day from 2000mg per day. Gosh, I am getting scared because it seems that I am not accepting the 'normal'meds like most people should. It is truly discouraging.debby

February 1, 2002

Debby, We are the same age. Don't be too hard on yourself.

Why mentally berate yourself when you will pay the price with physical

ailments? I hope you do not suffer too long. Like you, I do

not consider 50 to be old. Sometimes I feel a great deal older.

Last year (Dec.2000) I was diagnosed with Parkinson's. I had

already confided in a couple of close friends that I knew that was what

was wrong with me. They both said I was too young. I remember

thinking that J. Fox was not elderly and he has Parkinson's.

I have to say of all the diseases, syndromes, etc. that I have been diagnosed

with, this was the most devastating. I spent a lot of time crying

about that. So did the rest of my family. I have to say, that

thankfully, with adjustment in my medications, I am doing very well.

I still have some weakness on my right side. That is so minor compared

to the way I started out before proper diagnosis and treatment. I

am rambling. My point is that even at our age, our bodies can react

as if they are older. I can feel your frustration in dealing with

your mom. I remember from my experience, the frustration was largely

due to feeling as if I had no control. I didn't. And so it

goes in life. We like to kid ourselves into thinking we are in control.

Anyway, know that I am thinking about you and keeping you in my prayers.

Carol

tdcc wrote:

Thanks

Carol. I was hoping to hear from the doctor today about my labs,

but maybe tomorrow. I had to call the hospital to have them call

the results up. Hopefully, they have done it. Carol,

I am thinking that my "age" is part of the problem as to why I can't get

my body to work with the meds. HOWEVER, I didn't think that being

50 was THAT old....however, my body thinks differently, I guess!!!

Anyway, I am hopeful that cutting down the meds will help until my body

can get used to this stuff. I was just horrified when I told the

doctor that I was not doing so good and the expression on her face was

very frightening! THEN,

tonight, I did the unpardonable! I actually got SO tired and angry

with myself, that I went out and ate some Kentucky honey BBQ Wings.

For me, this is just like taking poison, but I am so weary of not being

able to eat out like normal people (because of the celiac). I was

SO hungry and did not want to have to cook when I got home. After

running around for Mom, I just dind't have the energy. WELL...I

am going to pay for it big time. I will have horrible stomach aches,

headaches, and will be extremely grouchy for the next couple of days.

All because I got impatient! I HAVE to take time for me so that I

don't get into this situation! You would think that after one year

on this diet, that I would have worked out the kinks and had an emergency

plan all lined up and extra food. What an idiot I am...just realized

that I had the SOUP in the fridge! Well...I

have NOT one person to blame but ME. I am going to sit down at the

next 3 day weekend and plan this all out. Heck,

now I feel better having written this all out....I have a plan.....thanks

for letting me just ramble!!!debby

Re: [ ] back

from the doctor

Debby, I am sorry to hear that you are still not feeling well.

I understand your being scared about your body not utilizing some of the

meds. I have found that as I have gotten older, I am having more

difficulty with my system not responding to certain meds or else I have

some sort of sensitivity that prevents me from continuing a medication

and having to start another. Try to stay positive. I know that

is difficult to do. I am fighting being very discouraged myself.

I am back into the feeling crummy routine. I was at the cardiologist

yesterday and the neurologist on Monday. They both want me to get

in to see the rheumatologist soon. I have an appt. with my

gastro/hep doc fairly soon. I am concerned that my LFT's will be

on the rise again. Know I am thinking about you and will pray

that you improve soon. Carol

tdcc wrote:

Hi...I

got back from the doctor. She is not at all happy that I have not

been feeling so great the past few days. She is fairly certain that

I am having a problem with the Cellcept. She was OK with me lowering

the prednisone to 10 mg. She still wants me to drop lower.

She ordered an Xray, but I didn'twant to wait at the hosptial for 3 hours

so will do it later. The blood work will be in tomorrow, so she should

have the results tomorrow. I hope they show SOMETHING...so I can

get to feeling better. She did lower my Cellcept to 1000mg per day

from 2000mg per day. Gosh, I am getting scared because it seems that

I am not accepting the 'normal'meds like most people should. It is

truly discouraging.debby

February 2, 2002

Oh dear Carol! What a shock you much have had when you received the dx of Parkinson's! My aunt has it but she keeps on going! Yet, I cannot comprehend how a young person like us, could handle this disease! My dear friend, who is a hospital administrator, has MS. She has had it for many many years. We are the same age also! I admire her tenacity at how she copes with it all!

Carol, I will keep you in my prayers! God bless you...debby

Re: [ ] back from the doctor Debby, I am sorry to hear that you are still not feeling well. I understand your being scared about your body not utilizing some of the meds. I have found that as I have gotten older, I am having more difficulty with my system not responding to certain meds or else I have some sort of sensitivity that prevents me from continuing a medication and having to start another. Try to stay positive. I know that is difficult to do. I am fighting being very discouraged myself. I am back into the feeling crummy routine. I was at the cardiologist yesterday and the neurologist on Monday. They both want me to get in to see the rheumatologist soon. I have an appt. with my gastro/hep doc fairly soon. I am concerned that my LFT's will be on the rise again. Know I am thinking about you and will pray that you improve soon. Carol tdcc wrote:

Hi...I got back from the doctor. She is not at all happy that I have not been feeling so great the past few days. She is fairly certain that I am having a problem with the Cellcept. She was OK with me lowering the prednisone to 10 mg. She still wants me to drop lower. She ordered an Xray, but I didn'twant to wait at the hosptial for 3 hours so will do it later. The blood work will be in tomorrow, so she should have the results tomorrow. I hope they show SOMETHING...so I can get to feeling better. She did lower my Cellcept to 1000mg per day from 2000mg per day. Gosh, I am getting scared because it seems that I am not accepting the 'normal'meds like most people should. It is truly discouraging.debby

July 25, 2003

Haha just kidding, it was 15 mg. Sorry I misread the paper. 50 pills is what the container has. Sorry it's been a very long day.

(poly JRA and spondy 18)

July 25, 2003

50 mg??? I've never heard of anyone on that high a dose.

Diane (, 4, pauci)

July 25, 2003

I'm glad to hear it's only 15 mg. I was thinking you were in some serious trouble. Hope you feel better.

Diane (, 4, pauci)

July 25, 2003

:I hope that you are not on 50 mg of Methotrexate, that is an extremely high dose. Is that really the dose?? You might have a lot of nausea at that dose, please let us know if that dose is correct.

There are many good websites that explain about spondy, spondylitis.org is a good one and they have a wonderful newsletter. Let us know about the mtx.

and Rob 14 juvenile AS

On Fri, 25 Jul 2003 17:58:44 EDT superstahlisa@... writes:

Well I'm back from the rheumatologist. And all in all it was a good appointment. My doctor took me off the plaquinil and put me on 50mg of methotrexate.. she said if it doesn't work then she'll be putting me on Enbrel. But that we'll start off with the Methotrexate and work our way onto Enbrel if its necessary. She also told me I have Spondylitis, which I have to admit I have no clue what it is. She was like well I think we'll try this cause it could help your spondylitis too..and I was like my what? I guess they failed to mention I had that also.. So any info on the methotrexate and the spondy thing would be soo appreciated. Oh yeah and I'm on folic acid now also to help the side effects of the methotrexate. (poly JRA and Spondy 18)To leave this mailing list, send request to: -unsubscribe

July 26, 2003

:That is a relief. I was really worried.

Sorry to hear about the spondy. Do check out the website. It has a lot of good information. I am sure that Georgina can provide more as well. and Rob 14 Juvenile AS

On Fri, 25 Jul 2003 18:12:34 EDT superstahlisa@... writes:

Haha just kidding, it was 15 mg. Sorry I misread the paper. 50 pills is what the container has. Sorry it's been a very long day. (poly JRA and spondy 18) To leave this mailing list, send request to: -unsubscribe

July 28, 2003

i was on methotrexate for 2 years and it worked wonders! it made me really

sick, though, so my doctor switched me to enbrel and that's working even

better. i haven't had a flare in almost 3 months, so we're really happy.

i guess doctors figure that a secondary condition doesn't need explaining or

something. at my appointment a few months ago, my doctor started referring

to my fibromialgia (don't know if i spelled that right) like it was

something we'd gone into detail about, and she'd never said anything to me

before. it was weird, but we had her backtrack and explain, so it all worked

out.

lyssa (poly 17)

>From: superstahlisa@...

>Reply-

>

>Subject: Back from the doctor

>Date: Fri, 25 Jul 2003 17:58:44 EDT

>

>Well I'm back from the rheumatologist. And all in all it was a good

>appointment. My doctor took me off the plaquinil and put me on 50mg of

>methotrexate.. she said if it doesn't work then she'll be putting me on

>Enbrel. But that

>we'll start off with the Methotrexate and work our way onto Enbrel if its

>necessary. She also told me I have Spondylitis, which I have to admit I

>have no

>clue what it is. She was like well I think we'll try this cause it could

>help

>your spondylitis too..and I was like my what? I guess they failed to

>mention I

>had that also.. So any info on the methotrexate and the spondy thing would

>be

>soo appreciated. Oh yeah and I'm on folic acid now also to help the side

>effects of the methotrexate.

>

> (poly JRA and Spondy 18)

>

_________________________________________________________________

MSN 8 with e-mail virus protection service: 2 months FREE*

http://join.msn.com/?page=features/virus

October 14, 2004

,

We weaned our daughter off over several weeks downgrading very

slowly to 5 mg Adderall and then 2.5 mg for a few days before

stopping altogether after taking No-Fenol and AFP Peptizyde for

several months (We had already been on the Feingold Diet for about a

year at that time and our daughter continues to do better staying on

that diet as well as the enzymes)....no artificial

colors/flavors/preservatives/soy/chocolate/corn....each child has

their own special combination of things that will work best for

their own unique body.

Good luck with everything,

Gretchen

>

> Okay we just got back from the doctor and she agreed to let

n

> go off the Adderall and Strattera. What I have to do is starting

> next week, give him one dose of Adderall 15 mg and Strattera 40mg

> every other day for 3 days and that is it. Does this sound

right?

> I have a call into the Developmental and behavioral Doctor asking

if

> this is right and I am waiting for them to call me back.

>

November 3, 2008

Your PCT will help you Lilian. Either phone them or

write to them (phoning is usually best) and explain to them that you can no

longer work with your GP and please could they help you find another one and to

be honest, I doubt you could find one as uncaring and with so little knowledge

of thyroid disease as the one you have now. They will find you one. When my

doctors threw me out because they considered I had " criticised their

surgery " for daring to tell them they should prescribe unlicensed

medication if the one and only licensed medication used for the treatment of

hypothyroidism didn't work for particular patients. It was the PCT who found me

the one I am with now, and it was this new doctor that immediately agreed to

prescribe the recommended Armour Thyroid from my endocrinologist. Go for it

girl.

Luv - Sheila

If only I could find one Lizzie I would indeed try and register

with them. But I do not know how to find

one.

Lilian

Is it possible for you to register with another doctor who

will

prescribe T3?

___

November 3, 2008

Well I have some fight left on your behalf Lilers

What about this for an idea?

Get yourself some T3 and then, when your next lot of labs show a

higher T3, tell your waste of space pretence of a doctor that you

have been taking T-Convert from Nutri Ltd and that it is obviously

working well as you are now converting more of the T4.

Mo

>

> Well, that was a complete waste of time.

>

> It seems my T3 is now 3.2 (2.5-5.7) so now it is inside the range

he is satisfied. TSH 0.48 (0.35 - 5) so again he is now satisfied

I am on the correct dose. The lab didn't do the T4. The way I

feel right now I would guess at it being about 11.

>

> I told him I was still having symptoms and being very tired

still. So he asked me whether I would fall asleep at certain

times - I replied yes I did. He now reckons I could have sleep

apnea. I told him that the thyroid could cause this, and he

agreed, but said that they are able to do something about the sleep

apnea, but in the meantime I should not drive.

>

> I told him that this was not happening when I was on Armour or T3

and he replied that was because I was hyper. I told him that it

was because I was having these problems that I went to a private

doctor who prescribed the T3. He said it was very dangerous, that

I should not have been given it, and no wonder the doctor was a

private one and not on the NHS.

>

> All the symptoms I told him about he had a diagnosis, from a touch

of arthritis to being overweight. But he just didn't listen when I

told him that these things were manifest before taking the T3 - went

whilst taking it - and are now back again.

>

> His stance is mainly that me being ill and suffering does not count

for much, and if there is something that will aleviate each symptom

that is fine, if it doesn't hard cheese, but the very thing that

aleviates all of them is not allowed.

>

> He will not even increase the thyroxine when I suggested that I

might feel better if the T3 and T4 were higher within the range.

I hope he doesn't write to the DVLA to stop my driving licence.

That would be so unfair.

>

> This man is taking away the quality of my life. He will

obviously not listen to any private doctor's recommendation s it is

pointless me seeing one.

>

> Oh, and when I said that if it is the weight causing some of my

problems then should we not address the weight issue and all he said

was - you've guessed it - " go on a diet " .

>

> I just do not have any fight any more. I am due to see the endo

on Thursday so I hope I can get a better result from him.

>

> Lilian

>

November 3, 2008

If you remember Sheila, the PCT was my first port of call when my GP threatened not to be my doctor anymore if I did not take the thyroxine only and at the dose he prescribes.

They were not that helpful at all. They passed me on to a PALs person, who said she would ask their chemist to phone me to try and explain to me why it was no good for me. If I could persuade him that it was, then he would have a word with the GP. However, I never received any phone call from a chemist or PALS or the PCT.

I have not got back to them because I asked to be transferred to the other endo, who my GP told me will not think any different to his colleague, yet he is on your list. I am seeing him this Thursday morning so will wait and see what transpires then.

Lilian

November 3, 2008

Good idea Mo - but he regularly does TSH test and when taking T3 it goes down to 0.01 and all he is concerned about is that my TSH gets into the 'normal' range. As my TSH is now 0.48 and the minimum of range is 0.35 he is satisfied that I am now on the right medication and the right dose of it.

I know they say T3 has a very short half life, but it has taken 16 weeks of me being without it for it to go from my TSH being 0.01 to 0.48 so I do not think just giving it up a few days before a blood test will work either.

So whatever I take - if it reduces my TSH he will tell me I must stop it He is adamant that a TSH below the range will cause me to have a heart attack.

However, I could actually keep taking the T-convert which might help with converting without reducing the TSH as T3 or Armour would do. Maybe this will be some help.

I was also wondering whether taking some kelp might help too.

Lilian

November 3, 2008

Oh that is a nightmare Lilian, I feel for you I really do. There has

to be a solution somehow..........

I have an unopened bottle of T Convert if you would like it, I don't

need anything like that as I cannot take T4 in any form so no need to

worry now about conversion whilst on T3.

Mo

>

> Good idea Mo - but he regularly does TSH test and when taking T3 it

goes down to 0.01 and all he is concerned about is that my TSH gets

into the 'normal' range. As my TSH is now 0.48 and the minimum of

range is 0.35 he is satisfied that I am now on the right medication

and the right dose of it.

>

> I know they say T3 has a very short half life, but it has taken 16

weeks of me being without it for it to go from my TSH being 0.01 to

0.48 so I do not think just giving it up a few days before a blood

test will work either.

>

> So whatever I take - if it reduces my TSH he will tell me I must

stop it He is adamant that a TSH below the range will cause me

to have a heart attack.

>

> However, I could actually keep taking the T-convert which might

help with converting without reducing the TSH as T3 or Armour would

do. Maybe this will be some help.

>

> I was also wondering whether taking some kelp might help too.

>

> Lilian

>

November 3, 2008

Thanks Mo. I will contact you privately.

Lilian

November 4, 2008

Hi Lilian,

A common variation in deiodinase 1 gene DIO1 is associated with the relative levels of free thyroxine and triiodothyronine. http://jcem.endojournals.org/cgi/content/abstract/93/8/3075

[[...CONCLUSIONS: This study provides convincing evidence that common genetic variation in DIO1 alters deiodinase function, resulting in an alteration in the balance of circulating free T(3) to free T(4). This should prove a valuable tool to assess the relative effects of circulating free T(3) vs. free T(4) on a wide range of biological parameters....]]

My Comment: This work by Panicker V et al (Colin Dayan's group at Bristol)

shows that the assumptions of many physicians will be wrong if they rely upon the 'old data'.

alterations in the balance of T3/T4 implies that they can't rely on the old BTA guidelines....they're out of date and in urgent need of revision.........

Deiodinase type I (DIO1) converts T4 to T3 in an iodiosyncratic manner and to the apparent detriment of some people being controlled by GPs on lab tests only.

Failure to keep up with the current literature and medical practice is an offence against the principles of good medical practice.

eg reading the Lancet and /or BMJ might be a strong indicator that medical practice is changing.

New guidelines take some time to produce and may, in fact, take years to 'sink' into the profession.

Staying in touch with the literature on treatment of such a frequently encountered condition requires that a doctor uses all his/her clinical judgement, as well as, and is not solely reliant upon lab tests.

Cite the Paper by Panicker V, 2008 and ask if they've read it yet?

best wishes

Bob>> Good idea Mo - but he regularly does TSH test and when taking T3 it goes down to 0.01 and all he is concerned about is that my TSH gets into the 'normal' range. As my TSH is now 0.48 and the minimum of range is 0.35 he is satisfied that I am now on the right medication and the right dose of it.

November 4, 2008

I will see what transpires at the meeting with the new endo on Thursday Mo.

It seems they do have great power. A friend of mine whose grandson was born with only half his heart working was prescribed a certain drug by the consultant, but his doctor refused to prescribe it because it cost too much. Now this was the doctors decision, not NICE or PCT or any other body. They changed doctors (in the same area with the same PCT) and are getting it prescribed.

Now that my T3 and TSH are within range (albeit both low), it is regaded by my GP that I am now being adequately treated and, like we know, it doesn't matter to them whether it is at the bottom of the range or the top of the range, once it is within range you are OK. I cannot see the chemist agreeing to anything else, as he was supposed to phone me to explain why I didn't need it, not me explain why I did lol.

Lilian

November 4, 2008

Thanks Bob. That sounds so technical, I hope they do not ask me any questions about it Shall I just copy the page and take it with me to the consultant on Thursday morning?

Would this still apply to me given the fact that 125mcg of thyroxine only has raised the T3 to within range (albeit still low). Lab did not do T4 and TSH now raised to 0.48 (0.35 min range)?

Lilian

Re: Back from the doctor

Hi Lilian,

A common variation in deiodinase 1 gene DIO1 is associated with the relative levels of free thyroxine and triiodothyronine.http://jcem.endojournals.org/cgi/content/abstract/93/8/3075