I really need some opinions on my situation :-(

[luvinmy3]

I was diagnosed with subclinical hyperthyoidism in 2005 and have been on 2.5mg of methimazole ever since. I have been feeling pretty good on that dose except for the neuropathy that has never subsided. Anyway, my husband and i would like to have another child and am told that is a NO NO on methimazole. So my endo switched me to PTU a couple of weeks ago and all h*ll has broke lose. He has started me on 50mg once a day. When I take the PTU I get very drowsy and no energy for about 10 hours. The rest of the day I feel like it has worn off and go completely hyper again. I never experienced anything like this with the methimazole. I know you are supposed to take the PTU more often so why would the endo say only take it once a day? In the last week on the PTU my legs have swelled enough that it is uncomfortable to walk, along with my hands and face which has me very concerned. I have just been a emotional wreck since stopping the methimazole. I really want another child but i don't think this PTU is going to work out. I asked the endo if we could do a CT scan or ultrasound of my thyroid to check for nodules or mainly just to see what was going on since he has never done one. I did test negative for graves and he said at one point that he "maybe" felt my thyroid was a little enlarged. I would like to have scan just for peace of mind if anything. What could it hurt right? Well he down right refused and said it wasn't necessary. He says my only options if I want to concieve are PTU or do RAI and wait 6 months. I REALLY REALLY REALLY don't want to do RAI. I am against it. I would rather have surgery. I really think it makes since to check out my thyroid. I have been reading online that alot of times if you only have one or two small nodules that they can actually just remove those and spare most of your thyroid and not need to go on replacements afterward. To me that would be ideal. I really don't know what to do. I don't know if I could find a doc for surgery with a subclinical case or not. My PCP said since I was "subclinical" I could just go off the meds if I want to have another child. I don't think that is realistic.
My case does not FEEL subclincal to me. I have tremors, can't sleep, screwed up periods and VERY severe mood swings when I am not taking meds. It takes it's toll on my family and I don't want to go through that again. Anyway, I am sorry this is long. I am really frustrated and feel like nobody cares. I am sure you all have felt this way at point. I just need some opinions as to what you would do in my shoes. Thanks for lending me an ear!

[GravesGirl73]

First of all, ptu has more side effects than tapazole but is safe during pregnancy. I think at least you should try 2 or 3 times a day instead of just once. Doctors think we won't comply if we have to take it 2 or 3 times a day, that's why they say that. I myself take 5 mgs of Methimazole once a day, 5 times a week, it seems to be okay for now. It probably will be lowered in a couple of months. I don't have hyper symptoms, even on the days I don't take it. I agree with you, RAI is really out of the question, nuke your thyroid? If you have subclinical, that's just crazy! I have always had a mild case, and my doc has had me on the MMI for a year and a half. Of course he brought up the RAI at the last visit(and he was being so good too!) Anyway, if you really can't tolerate the PTU, what about cutting the pill in half and try that instead, if he said you could actually go off it....50 ptu is equal to 5 methimazole, I think, so you are on more, but I've heard it is weaker. How were your levels when you were pregnant? Did you feel hyper then? I take it you weren't on meds when pregnant.

[luvinmy3]

The last time I was pregnant was before I was hyperT. I am really thinking about just going off the meds completely and see what my levels are now. My first labs in 2005 before going on any meds:


TSH .15 (.4-5.0) L
Free T4 1.0 (.8-1.6)
Free T3 3.7 (2.3-4.2)

I do feel hyper when not on meds. My TSH has never been below .1
This month when he drew my blood before switching me to PTU my TSH was

TSH .32 (.4-5.0) L

That was on 2.5 mg a day of MMI. For some reason he did not run the free T's this time. Which I was dissappointed about. With it just being subclinical I might just try some natural supplements among other natural remedies. If I could make it through a pregnancy being healthy without having to take the meds that would be great. I have been reading on subclinical hyperthyroidism and pregnancy. It seems with all the studies conducted, being sub hyperT while pregnant should to have no increase in complications for mother or baby. It might be worth a shot.

[GravesGirl73]

you're right about hyper not really having any effect on the pregnancy. You actually could get better while pregnant, like remission, then back to hyper after the baby is born. They worry about hypo while pregnant, it's worse for the baby. You just might be sensitive to drops in the tsh, I know I am. I feel hyper at .30 too. I have to be over 1 to feel like myself, before hyper. Good luck hon,hope you become preggers soon. I'm waiting for grandbaby number 3 from my youngest daughter this time. She's due in July. I have 2 grandsons from my oldest. I'm hoping they don't get this damn disease from me, so far so good...

[316believer]

Hi Luvinmy3! I was just diagnosed and can't give you any advice. I am so new to this. I have never been sick in my life! I was diagnosed with Graves and they put me on Beta Blockers till my 4th set of tests come back to confirm all my numbers. My Endo thinks I have this for a long, long time and just explained away my symptoms. I hope you have great luck with your plans for a little one. I'll look for you post in the future to see how you're doing.