[Candi28]

#1059877

Hi, everyone….

I was diagnosed with graves when I was 19, back in 2001 after months and months of Dr’s trying to figure out why my heart rate was so high and I was overly anxious. I was put on tapizole (high dose) and was told I should get RAI or surgery, even though I had TED (which went away with the medication). I chose to stay on the meds and got a new Dr.

In 2006 I suddenly got some kind of infection of my throat which kicked my heart into racing… was put on a beta blocker for several months, which made me severely depressed and in my opinion caused some lasting issues with personality and some vision/neurological problems. I just have never been the same since I went on them and went off of them. Within a few weeks I started getting off balance, which was a whole different story….. I asked to be put on PTU since I was of child baring age and felt like it was time to switch just in case I got pregnant.

In 2009 I started having some issues with my vision again, seeing halos around objects, horrible night vision, and seeing trails from passing objects. This happened right around the time I got pregnant with my son. I was always kept on they low side while pregnant. After I gave birth my TSH went up.

I switched to Tapizole in early 2010 and remained stable. My newest endo said my ranges were looking normal and wanted to wean me off eventually. I was down to 2.5 mg every other day and 1.25 mg every other day alternating between mg’s. I was doing great up until 2 weeks ago after doing a low carb diet I started noticing my heart would palpitate after eating. Then I caught whatever cold my son had which caused a sinus infection and then all heck broke loose. I woke up on saturday morning 2 weeks ago with my heart pounding out of my chest. I took my BP and noticed it was close to 100 BPM and my blood pressure was around 120/80 which is not normal for me. I called my primary and he ordered labs to be done and said not to worry we will take care of it. I got the call the next day saying my TSH was 0.04 and to call my endo, they would send the labs there. He said my T4, T3 or Free 3, can’t remember, but he said they were in perfect range. My Endo finally got a hold of me and she said take 2.5 mg of methimazole once a day. I wasn’t happy with that and decided to take it twice a day. I immediately got the usual rash, this time from my butt down the back of my thighs. Huge welts, itchy and red. This only happened after I would take a hot shower. I decided I should revisit my old endo…. she told me I should switch to PTU and mentioned RAI or Thyroidectomy again. She said I have subclinical hyperthyroid right now. All of my labs are normal except my TSH, which I don’t understand.

Here’s the even weirder part…. My heart rate is now down to 69 to 71 bpm and my blood pressure is down to 102/55 (I normally have low BP… although that was never the case until I got graves and was put on methimazole… could that cause low bp????)

Also, could the methimazole have kicked in that quickly?

I am thinking I should be doing just the 2.5 mg once a day is that is the case. I am going to call the endo and ask her. I have only done it once today and haven’t had the rash at all. I was feeling awful earlier before eating… still a little anxious. I have just been at my wits end with this disorder.

I don’t want to do the surgery because I am scared my neurological issues could possibly get worse.

I am scared of the RAI long term effects and my endo told me today since I have a goiter that even if I did RAI they would have to watch my goiter every 6 months. Why is that?

Sorry this post is so long….

[snelsen]

#1178459

Hi Candi, long posts are JUST FINE! It is a long story, and darn complex.
I do have a few questions and some comments, with the usual caveat that we are just plain ole Graves’ and TED people in various stages of one or the other or both….
Comments-I am mostly hoping that they will help you form questions for endo. And I do suggest you see a neurologist and a cardiologist to get good baseline information in both these areas.
I am so sorry you have had such a rough ride with all of this.

It really does not matter much at this point, but correct information is always good to have. I think if you will check, you will find that Tapazole, which is the same as methimazole (which most posters call it on the forum) is completely unrelated to TED. Not sure what your TED symptoms were, but it seems that you might have had a mild case of scratchy and dry eyes, etc? But not full blown TED, you would definitely know that, and they really are different systems, though more people who have Graves’ get TED, than people who do not have Graves’.

I am wondering if you had labs during 2001 and 2006, and if your Tapazole dose stayed the same all the time?

In 2006, I do question if your sore throat was related to your fast heart rate, or, if it was because you were hyper. Would you review that with your doctor? Please review with your docs, or your paperwork, if some of your docs, related them to depression, visual changes, balance, etc. Or make a new appointment about this. Do you still have these issues? I really do question if those symptoms were related to beta blockers at all. Did you have a good workup from a good neurologist? Visual changes and balance problems really need to be evaluated by one.

I can understand why the endo is suggesting a thyroidectomy for you. Apparently your thyroid gland is enlarged, plus you have had one hell of a time with ATD’s (anti thyroid drugs, and they may not be the answer for you.) But again, your endo will probably want some more labs, try to figure out if you do have subclinical hyperthyroidism. Lots to think about.

I suggest that you consult with neurology, for you may have some incorrect assumptions about the relationship of a thyroidectomy and your neurological symptoms. If you still have balance and vision problem, it seems important to me that you have neuro involved.

You do have a long and complex history, and you don’t feel well, and I am super sorry! I guess I’d begin with your endo, and maybe formulate other questions from what I have said. It is entirely possible that I have misunderstood or missed something that you have already addressed in your post. I would definitely ask her if you do/don’t have subclinical HYPER, or if she/he can make that diagnosis at this time. Also ask her if you do have subclinical hyperthyroidism, how is it managed? I know it is a complex issue, and ask her if surgery is a treatment for that?
Lots and lots to think about to get you well!
Glad you found this site, I think you will find it very supportive and accountable and reliable.
Shirley

[Kimberly]

#1178460

Hello – Shirley has given you some great food for thought. Just a quick note on your goiter question…

Once hyperthyroidism is under control, you *should* see any goiter start to shrink. Obviously, surgery will take care of this issue immediately, but you should also see relief over time should you pursue RAI or ATDs.

Anytime you don’t like (or don’t understand) your endo’s dosing instructions, it’s important to ask questions until you understand his/her rationale…or until you can reach a compromise on an appropriate dose! Making changes on your own can make it more difficult in the long run for your doc to help you find that “sweet spot” dose that will get you back to feeling well again.

Take care – and please keep us posted on how you are doing!

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