Thank you for advising that thyroid issues aren’t necessarily related to GBS/CIDP. Now I’m beginning to wonder if the thyroid issue is due to the fact that I had a left nephrectomy and partial adrenal gland removed in 2004.
I’m not sure which numbers to provide from the doctor’s report. In layman’s terms, the report indicated that I may have a “form of thyroid hormone resistance”. They haven’t prescribed any medication. Oh, and so far, I exhibit symptoms of hypothyroidism (if the information I found on the internet is accurate). I’m currently dealing with unexplained weight gain and chronic fatigue.
I’m concerned that they’re waiting 3 months between tests. So, now I’m not sure how to proceed. Do I “insist” that they retest now within another week or two (the date of the test was 09/24/08)?
I appreciate any information you can provide.
No bloody wonder you were sick to your stomach – your nerves must have been going crazy! That is alot to go through in a very short period of time, you must rest now.
My step daughter had half her thyroid removed about 3 years ago. She was 16. She had a growth on the thyroid, and as it turned out, it was benign. However, it wasn’t until they got in there to remove all of it and sent a sample to pathology that they discovered that. So, I guess that there is always hope!
Anyway, the surgery itself was relatively simple. She had a drain in her neck for a day or two (spent two days in hospital). She then spent about three weeks at home from school. As you can imagine, for a long time she was most concerned with the scar! Quite a long one across the base of her neck. Of course, you can’t see it now!
She has to take meds for awhile, but the meds now are quite good. If you have to have a total thyroid hormone replacements, you should make sure that you look at your options for meds. My Mom has had to take thyroid for years.
One thing that your post reminded me of, my neuro looked for a tumour of some sort for YEARs. He was convinced that my neuropathy was caused by a tumour rather than an inflammatory process. He said that quite alot of small lung type tumours can cause CIDP symptoms. Perhaps since yours is considered a slow growth tumour, it has in fact been the culprit! Maybe if you have it taken out — you will feel HEAPS better!
This is my positive thought for the day. I really hope that things go well, but you must rest before the surgery.
Cheers and hugs
Benign Autoimmune thyroid disease, (hypothyroidism).
And same here with the whacked out blood tests.
My thyroid is also enlarged, as they also did a sonagram on it.
I too, had hoped the pills would increase the energy, but they didn’t. I still get great fatigue, especially when the heat is on, (summer came early this year).
I am on chemotherapy at a very high dose, and am losing my hair. So, I couldn’t say the levothyroxin will help grow your hair back.
To me, it was just another, “what next is going to happen?”.
I don’t know anything about thyroid cysts, but I do have a thyroid disorder. It’s okay if I take my thyroid medication on a daily basis and have a blood test to check at least twice a year, so I don’t worry about it. But, when my CIDP symptoms were in the very early stages, I didn’t know that anything like CIDP was wrong with me because the thyroid symptoms I used to experience were very much like CIDP symptoms. With the thyroid I’d get numbness and tingling in fingers, hand tremors and legs so weak I’d have to pull myself up steps.
Unless your doctor is really good, I would not wait for him to set up the appointment. Well, I might wait a week or two so he can do the background work, but no longer. This problem is one that a simple medication regime can resolve in a matter of weeks. There is no point in letting this drag out.
If it does in fact turn out to be a pituitary or hypothalamus problem, things are much trickier. Still, it is better to attack it as soon as you can.
Let’s assume it is only hypothryroidism. As Liz said, treating it is life long. And while fairly easy, there are some tricks to doing it right. One, take it early in the morning, first thing upon arising, with about 8 oz of water. That is because your body makes most of its T4 between 4 and 6 am and you want to try to match that rhythm. Second, do not eat or drink anything for one full hour. You do not want anything to interfere with its absorption. Third, do not take vitamin supplements, especially those containing calcium, for at least four hours after your morning dose. These can interact with the T4 in your intestine, affecting its absorption.
Once you first start taking a synthetic thyroid, you will need a blood test once every 6 to 8 weeks until you are euthryroid. While the normal range for TSH is 0.4 to 4.0 µIU/dL, it is better to be under 2.0. Sometimes the available doses won’t let you get under 2.0 without pushing you down to under 0.4 (I know from personal experience), so you will have to live with an adjustment period. Once you are euthyroid, a blood test every 6 months should be sufficient.
Again, don’t wait too long. Godspeed.
If your pituitary and hypothalamus function properly (disregarding size), with a TSH of 11 µIU/dL, you are most definitely hypOthyroid. With your smaller pituitary, it could be that it is misjudging things and asking the hypothalmus to make too much TSH, even though you have enough T4 and T3. However, pituitary and hypothalamus problems are much less common than thyroid problems, so it is like that you are hypothyroid only.
That said, if you can get your doctor to agree to it, get tested for T4 and T3. That will nail down if the problem is in the thyroid or in the other two glands.
Godspeed with this issue. And try to hurry your doctors along. Resolving the thyroid issue, if it is hypo-, is fairly easy and will make a big difference in the quality of your life.
My thyroid problem goes back to my twenties (boy, about 45yrs if I’m counting right), so I no longer remember details. I do remember being at the hospital for a test. I had to swallow liquid iodine placed in a lead cup, then a scan of the body was done, by following the iodine. I hope that test has improved. I’m sure at one point, I did see an endrocronologist, but mostly it was my family doctor. I only have problems now if I neglect my medication (it’s something you need for a lifetime, every day) for long periods of time and the dose is regulated as per need. Blood tests should be done about every six months to keep a check as to whether it’s under control.
Since your thyroid problem came after the syndrome, it’s probably a very good idea to see an endrocronologist for a consultation. This is something that you want to keep ahead of, since thyroid symptoms are very similiar to the syndrome.
I’ve never had to see anyone but a family doctor for the thyroid. When I was diagnosed, I was really in bad shape, actually I was just as bad as the onset of CIDP. When I remember back, the symptoms were very similar. Once I started a maintenence of thyroid medication, I was quite fine. Thyroid is a medication that can be regulated to meet your needs.
I can’t answer your questions, but I have had a thyroid problem since my early twenties and before I was diagnosed and started taking synthroid, I’d run both high and low. I was almost put in hospital because of heart palpatations. I’m fine as long as I take the medication. Thyroid symptoms, at least for me, mimicked CIDP, hand tremors, weakness, numbness, etc. and because if the similaritis, I didn’t realize I had this syndrome, until different things happened.
Your doctor will probably put you on a thyroid medication.