Re: Re: Help -- Dr. Appt Tomorrow

[Guest guest]

Dawn,

Thanks for the info. I really hope that I will have a good appointment tomorrow. I live in a small town that doesn't have an endo, so I am driving 50 miles to the nearest town that does and they only have 4 and I have seen all of them. This one seems the best of the 4, but they are so patronizing. Sometimes I really wish they could feel what we feel. Maybe they would be more understanding.

Jeannie

Re: Help -- Dr. Appt Tomorrow

Hi Jeannie,Not sure if anyone is on here today so this is what I know. You need a free T4 and imperitive you get a free T3. This free T3 is telling you how much of your t4 is being converted to t3. You also need CBC, iron, B12. Got brain fog again and can't seem to get past these but these are major ones to get done. Good luck on your visit tomorrow and hopefully someone will be able to add anything I have forgotton.Dawn > > Hi, Everyone,> > I have been posting and reading for several weeks now. I had a > complete thyroidectomy in March, 2004. I have an appointment with > the endo tomorrow, Tues. Jan. 11. I will be having more bloodwork > done. My last blood work showed that my TSH was still at 11.6. > When they called today to remind me of my appointment I ask them > what thyroid test they have been running. It is the "T4, Free, > Direct Dialysis". Do I need to ask them to run additional test? I > also plan to talk to him about changing from Synthroid to Armour. I > know that he is not going to react positively to any of this. He > told me right after the surgery to stay off the internet and listen > to him. I have tried that, but everything seems to be improving so > slowly, if at all. I think he owes it to me to talk to me about it > instead of patting me on the head like a puppy and telling me it > will be OK. I am really tired of feeling bad, going to the doctor > every 4-6 weeks and being stuck with needles. If anyone can tell me > other questions I should ask I would really appreciate your input. > A lot of you have already been through this and know a lot more than > I do. > > Thanks,> Jeannie

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[Guest guest]

Dawn,

If you are having dizzy spells, it is probably good that they are doing a CAT scan. I was doing the same thing and they kept running test and couldn't find anything until finally after nearly 2 years they did a CAT scan and discovered that I had a brain tumor. This was in 1995. I was 36 years old. Before my neuro suregeon would do surgery he needed a hearing and vision baseline because the tumor was in the area that controls these. He sent me to an ENT who discovered that I had another tumor on my Thyroid Gland. After a needle biopsy came back inconclusive, it was determined that I would have to have both tumors removed. I had the brain tumor removed first and two weeks later they removed half of my thryroid. I wish they had removed the entire gland at that time so I wouldn't have had to go through that surgery again. Thankfully, both tumors were benign. The brain tumor was a benign menigioma. They grow very slowly and I had probably had since I was a child. When they discovered it it was the size of golfball and starting to press on areas that caused dizziness and blurred vision. I was also having headaches and fainting frequently. I now have to prove that I have brains every year with a MRI scan. My neurosurgeon said that the tumor had hormone receptors and possibly was tied to my Thyroid problems. They also found that I had an enlarged pituary gland in the CAT scan. I'm not sure if the brain tumor caused the thyroid problems or visa versa, but I am convinced they are related. They actually thought I had thryoid problems when I was a teenager, but all of my blood work came back OK. Haven't we all heard that. I often wonder if they had done something then if I would have all of the problems I do now.

I hope your CAT scan goes well. Let me know what you find out. I will say an extra prayer for you tonight.

Jeannie

Re: Help -- Dr. Appt Tomorrow

Hi Jeannie,I think the attitude is a 'doc' thing that they get taught at med school and forget to leave it there. It is good that you are seeing an endo, I've been diagnosed for nearly 9 years and this Friday is my first referral to an internist. One step at a time I suppose, being in a rural area means you go as slow as molasses, I live in a small town too. I have a cat scan tomorrow I think they just want to see if I have any brains. lol!!! It is to see if they can see something that is causing me to be so dizzy, couldn't possibly be my thyroid could it????? As you say if only they could live in our shoes long enough to see what it is like, maybe, they would do more for us. Before you leave tomorrow do check in here again as some of the girls post late at night and there could be lots that I have missed. Just found something for you it is in message #15443, I printed it up for me so that I could get things checked and have only just remembered where I put it. That has so much more on it. Good luckDawn > > > > Hi, Everyone,> > > > I have been posting and reading for several weeks now. I had a > > complete thyroidectomy in March, 2004. I have an appointment with > > the endo tomorrow, Tues. Jan. 11. I will be having more bloodwork > > done. My last blood work showed that my TSH was still at 11.6. > > When they called today to remind me of my appointment I ask them > > what thyroid test they have been running. It is the "T4, Free, > > Direct Dialysis". Do I need to ask them to run additional test? > I > > also plan to talk to him about changing from Synthroid to Armour. > I > > know that he is not going to react positively to any of this. He > > told me right after the surgery to stay off the internet and > listen > > to him. I have tried that, but everything seems to be improving > so > > slowly, if at all. I think he owes it to me to talk to me about > it > > instead of patting me on the head like a puppy and telling me it > > will be OK. I am really tired of feeling bad, going to the doctor > > every 4-6 weeks and being stuck with needles. If anyone can tell > me > > other questions I should ask I would really appreciate your > input. > > A lot of you have already been through this and know a lot more > than > > I do. > > > > Thanks,> > Jeannie> > > > > > ------------------------------------------------------------------------------>

[Guest guest]

I just returned from seeing the endro. He gave me a copy of the results of my last blood work and also ordered more today.

This is the results of the bloodwork I had 6 weeks ago.

T4, free, direct dialysis -- 1.9

T3, free -- 368

TSH -- 11.67

Triglycerides -- 107

Cholestrol Total -- 127

LDL-Cholestrol -- 69

HDL-Cholestrol -- 37

Chol/HDLC Ratio -- 3.4

Protein, Total - 7.0

Albumin - 3.9

Globulin - 3.1

Albumin/Globulin Ratio - 1.3

Bilirubin, Total - 0.5

Bilirubin, Direct - 0.1

Bilirubin, Indirect - 0.4

Alkaline Phosphates - 54

AST - 16

ALT - 17

In addition to the tyroid test, they are checking my calcium and magnesium this time also.

Do you see anything that stands out or something else that I should ask for?

Jeannie

Re: Help -- Dr. Appt Tomorrow

Hi Jeannie,Not sure if anyone is on here today so this is what I know. You need a free T4 and imperitive you get a free T3. This free T3 is telling you how much of your t4 is being converted to t3. You also need CBC, iron, B12. Got brain fog again and can't seem to get past these but these are major ones to get done. Good luck on your visit tomorrow and hopefully someone will be able to add anything I have forgotton.Dawn > > Hi, Everyone,> > I have been posting and reading for several weeks now. I had a > complete thyroidectomy in March, 2004. I have an appointment with > the endo tomorrow, Tues. Jan. 11. I will be having more bloodwork > done. My last blood work showed that my TSH was still at 11.6. > When they called today to remind me of my appointment I ask them > what thyroid test they have been running. It is the "T4, Free, > Direct Dialysis". Do I need to ask them to run additional test? I > also plan to talk to him about changing from Synthroid to Armour. I > know that he is not going to react positively to any of this. He > told me right after the surgery to stay off the internet and listen > to him. I have tried that, but everything seems to be improving so > slowly, if at all. I think he owes it to me to talk to me about it > instead of patting me on the head like a puppy and telling me it > will be OK. I am really tired of feeling bad, going to the doctor > every 4-6 weeks and being stuck with needles. If anyone can tell me > other questions I should ask I would really appreciate your input. > A lot of you have already been through this and know a lot more than > I do. > > Thanks,> Jeannie

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[Guest guest]

TSH is WAY too high... what are the lab ranges on the Frees?

Topper ()

On Tue, 11 Jan 2005 16:25:35 -0600 Jeannie writes:

I just returned from seeing the endro. He gave me a copy of the results of my last blood work and also ordered more today.

This is the results of the bloodwork I had 6 weeks ago.

T4, free, direct dialysis -- 1.9

T3, free -- 368

TSH -- 11.67

[Guest guest]

The lab ranges are

T4 -- 0.8--2.7

T3 -- 230-420 PG/DL

Re: Re: Help -- Dr. Appt Tomorrow

TSH is WAY too high... what are the lab ranges on the Frees?

Topper ()

On Tue, 11 Jan 2005 16:25:35 -0600 Jeannie writes:

I just returned from seeing the endro. He gave me a copy of the results of my last blood work and also ordered more today.

This is the results of the bloodwork I had 6 weeks ago.

T4, free, direct dialysis -- 1.9

T3, free -- 368

TSH -- 11.67

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[Guest guest]

The range on the T4 is .08-2.7 and the T3 is 230-420. I can't read the part with the TSH, only that it is 11.67. The endro told me he wants the TSH between .02 and .05.

Re: Help -- Dr. Appt Tomorrow

Hi Jeannie,do you have the range that these results are compared with, i.e.tsh 11.67 and the new range is .3 to 3.00 it should be to the right of the sheet. All labs have a range. A B12 would be good to get.Dawn > > > > Hi, Everyone,> > > > I have been posting and reading for several weeks now. I had a > > complete thyroidectomy in March, 2004. I have an appointment with > > the endo tomorrow, Tues. Jan. 11. I will be having more bloodwork > > done. My last blood work showed that my TSH was still at 11.6. > > When they called today to remind me of my appointment I ask them > > what thyroid test they have been running. It is the "T4, Free, > > Direct Dialysis". Do I need to ask them to run additional test? > I > > also plan to talk to him about changing from Synthroid to Armour. > I > > know that he is not going to react positively to any of this. He > > told me right after the surgery to stay off the internet and > listen > > to him. I have tried that, but everything seems to be improving > so > > slowly, if at all. I think he owes it to me to talk to me about > it > > instead of patting me on the head like a puppy and telling me it > > will be OK. I am really tired of feeling bad, going to the doctor > > every 4-6 weeks and being stuck with needles. If anyone can tell > me > > other questions I should ask I would really appreciate your > input. > > A lot of you have already been through this and know a lot more > than > > I do. > > > > Thanks,> > Jeannie> > > > > > ------------------------------------------------------------------------------>

[Guest guest]

I should have put this on my last post. The doctor told me today that if we didn't get the TSH down there was a chance that the thyroid could grow back. I thought that once it was surgically removed it was gone. He said that even the best surgeon could leave tiny specs behind and that if the TSH is too high it will stimulate it to grow. I don't want to have to ever have that surgery again. I ask him about the Armour again, and again he told me no. He said it is harder to get it to the correct levels than it is Synthroid. He doesn't even want me to take the generic for Synthroid. It has to be Synthroid. I started to ask him if he had something going with the drug company.

Jeannie

Re: Re: Help -- Dr. Appt Tomorrow

TSH is WAY too high... what are the lab ranges on the Frees?

Topper ()

On Tue, 11 Jan 2005 16:25:35 -0600 Jeannie writes:

I just returned from seeing the endro. He gave me a copy of the results of my last blood work and also ordered more today.

This is the results of the bloodwork I had 6 weeks ago.

T4, free, direct dialysis -- 1.9

T3, free -- 368

TSH -- 11.67

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[Guest guest]

Remind me, how long ago was your surgery and what was the diagnosis?

It can take several months for excess hormone to be used up in the system.... so it could be a while before you will be getting accurate test results....

Topper ()

On Tue, 11 Jan 2005 17:37:47 -0600 Jeannie writes:

The range on the T4 is .08-2.7 and the T3 is 230-420. I can't read the part with the TSH, only that it is 11.67. The endro told me he wants the TSH between .02 and .05.

[Guest guest]

Jeannie,

10 months should be long enough to have used up what was stored in your tissues..... I'll say again.. the gland itself did not grow back.. it was the tumors that grew.... but that's beside the point... before the surgery, what was the diagnosis, the reason for the thyroidectomy?

Were you hyper or hypo before the surgery?

Thoughts that are running through my mind right now, they rest of you jump in here with your thoughts....

Autoimmune... the tenderness and swelling.. the need for reduction of Synthroid.. .it tickles my mind with thoughts if increased antibody activity... Tumors and nodules involved with the thyroid have been know to produce, or cause the production of, hormone.. what if the tumors that were developing were triggering activity from remaining gland tissue that caused antibody levels to increase?

Me, I'd want to have some tests run... I'd want to be watching the antibody levels to see if they are changing....

How much Synthroid were you on before this last surgery, and how much now?

Some of the basics, I don't remember if we've run through this yet...

How are you taking the Synthroid (empty stomach or full)?

Are you eating regular meals to help keep conversion up (that means at least every 4 hours)?

Are you supplementing with Selenium to help with conversion?

.... I'm emphasizing support of conversion because you are on a T4 only medication (Synthroid) so are totally dependant on your body's conversion rate to provide you with the T3 that your body needs to function. (remember.. T4 is the storage hormone and T3 is the active hormone - you can have high levels of T4 but if your T3 is too low you will have symptoms.)

Are you keeping iron and Calcium supplements and high content foods separate from your thyroid dose?

Are you avoiding goitrogens, especially soy and high fructose corn syrup? ( www.thyrophoenix.com/bad_foods.htm)

...and last but not least, for now...... How is your sleep? I harp on sleep a lot...it's such a great clue for how your body is functioning, and not functioning... Do you fall asleep right away? Do you sleep through the night? If you wake during the night to go to the bathroom or something can you fall asleep right away again? When you wake in the morning do you feel refreshed, tired, have pain?

High five for your gyno for spotting it.... give him a pat on the back for me at your next check up!!! It was an orthopedist that diagnosed me... just took one look at me and she knew right away...

We'll keep picking at this and see what we can find for you to watch, test, supplement and do to help you feel better!!!!

Topper ()

On Wed, 12 Jan 2005 17:00:21 -0000 "Jeannie " writes:

,My surgery was on March 17, 2004, it has been 10 months. They removed all of my thyroid. I had 1/2 of it removed in 1995, but I was told yesterday that part of that half had grown back. About 3 years ago my primary care physician decided that he needed to reduce the amount of synthroid I was taking. Even though I told him I did not feel well after that he would not raise it. My throat started to feel tender and swollen and I decided to change doctors -- he was suppose to be a great doctor, highly recommended. I told him for over a year that my thoat did not feel right and I was exhausted. He would feel my throat and tell me that he felt nothing. Finally at my annual checkup with my gyn. I was ask if I knew that I had large lump in my throat that shouldn't be there. He sent me for a thyroid scan and they found two tumors, one 5.8 cm. and the other 2.6 cm. I was sent to the ENT who did my original surgery and a new endro who determined to remove them because of the size and that the needle biopsy proved inconclusive. They removed everything. The small tumor was pre-cancerous and the other was so large that it had shifted my trachea and involved my two of parathyroids causing damage to them. The endro told me yesterday that they will keep adjusting my level of synthroid gradually, but that we really need to get the TSH down or I am running the risk of regrowth because even the best of surgeons can miss microscopitic segments of the gland. That really scares me. I don't want to go through another surgery. I have had 8 surgeries in since 1995, 6 of them major events. It seems to take me longer to recover each time and I seem to have more complications every time.Thanks for any info you can share.Jeannie