Hypo and Hyperthyroid. How Do I Prepare for Visit to Endocrinologist?

[kaykay4]

I was diagnosed with CFIDS 15 years ago.  My CFIDS doctor discovered I was also hypothyroid.  We went through years of trying to find the proper meds and dosages, and I am now on 150 mcg Levothroid and 5 mcg Cytomel.  For the most part, this is working OK, except when it isn't.  Sometimes I feel and tests show it is too low, BUT for years I have also had hyperthyroid episodes ... scary, even after I learned what they were.

These are the results of my last two tests:

January
- T4 Free 2.12 (0.58-1.64)
- TSH (Ultrasensitive) 1.00 (0.34-5.60)
- Triiodothyronine, Reverse 530 (90-350)

March
T4 Free, Non-Dialysis 1.4 (0.8-1.8)
TSH (Ultrasensitive) 1.39 (0.40-5.50)

My CFIDS doctor asked my HMO doctor to send me to an Endocrinologist, even though their limited thyroid tests show me as normal.  I think he agreed "just to get me out of his hair."

What should I be asking and expecting from the Endocrinologist?

[Mark Lupo, M.D.]

The endo will evaluate the current dose -- which looks fine according to recent TSH levels.  The reverse T3 is not very helpful in evaluating dose.  The Jan Free T4 was high but March was fine.  Some endos do not like using cytomel - be prepared to discuss the possible benefit of combination cytomel/levothroid compared to levothroid alone.  

Other tests may include thyroid antibodies (to document hashimotos as cause of hypo) and an ultrasound (to determine if there is a thyroid nodule, etc).  These are not always necessary.

[luzlana]

After reading all of this I became even more concerned...A month ago I had a total thyroidectamy, and have been prepairing for I131 Radio Active Iodine treatment.  A week ago, I was told that my TSH levels were up to 70, however only needed them to be up to 30 in order to get me ready for the treatment.  My endocrinologist never even bothered to tell me when they were up to 30; I found out from my surgeon.  If a wk. ago my TSH levels were at 70, I can't even imagine what they are up to now.  This is the second day of my treatment and just now, after having paged my endocrinologist, he strongly advised me to take a double dose of Lyvoxil.  I have not been feeling any of the side effects of being hypothyroid that everyone else has been describing.  I have actually been in very high spririts and quite energetic.  The only difference is at time i feel swelling in my hands and fitugue in my legs; but nothing that's had me worried.  I now just discovered a bunch of bruises on my legs; does this have anything to do with being hypothyroid and what are the dangers of being hypothyroid for over 3 wks, even though I have been feeling just fine?  

I would greatly appreciate any feed back.  

[kaykay4]

What was not included in my original post was that my CFIDS doctor who is treating my thyroid condition, did do antibody tests and diagnosed Hashimoto thyroiditis.

Today I saw an endocrinologist, and I DID TELL him that I was diagnosed with Hashimoto.  He said that he could not explain why I was having hyperthyroid episodes.  

He did comment that my dosage was high (150 mcg Synthroid/5 mcg Cytomel), but that's neither here nor there because it works for you.  [He didn't have a problem with me taking both Synthroid and Cytomel.]  He also commented that my thyroid was small, but that's a good thing.

He did say that, perhaps, the hyper episodes, are cause by gastro-intestinal problems.  He also asked if I take calcium (which I do because I have osteoporosis), and if I take the calcium at the same time as the thyroid meds because that might affect the absorption of the thyroid meds.  I have been taking them together.

I'm confused.  I wish I had realized it while I was in his office.  If I wasn't getting the full benefit of the 150 mcg Synthroid/5 mcg Cytomel, wouldn't I be more hypothyroid?  Where do the hyperthyroid episodes fit into this?

I did some searching on Hashimoto, hypo and hyperthyroid symptoms, and small thyroid gland, and I read that you can have hyperthyroid episodes with Hashimoto, AND your thyroid gland can shrink because of Hashimoto.  I know I have a double dose of brain fog with CFIDS and a hypothyroid, but why didn't the endocrinologist mention this?