Diagnosed with Graves/Hyperthyroidism, but now I am HYPO! Endo Dr. didn't lower methimazole that much either! Any suggestions?

[Bri1978]

Hi, I am new to this group, I was seen in the e.r January 30 of this yr. was told I had Hyperthyroidism. Then a couple weeks later was told it was caused by Graves disease! I have mild TED in my left eye. My eye looks pretty normal now, thank-goodness! All my Hyper symptoms are gone and have been for about a month! The first Endo I saw pushed for RAI, which I will never do!! She was very rude to me, rolling her eyes at me, turning her back to me when she would talk to me! She also put me on a low dose of ATD medicine before my levels were within normal range, which then I ended up more Hyper than I was when first being diagnosed! I was so furious! Then I seen the second endo, who put me on 30 mg. of methimazole, well after 13 days of treatment, my levels were normal besides my TSH was 0.02 range 0.4000-5.800 but from what I have read it can take a while for your TSH to be normal , when you have Graves. Well Anyway my labs on May 18 were FT3 7.4 range 2.4-3.9, FT4 2.0 range 0.6-1.2, TSH 0.01 range 0.40-5.80
June 1, they were: TSH 0.020 range 0.400-5.800 , FT3 3.48 range 2.77-5.27 , FT4 0.58 range 0.58-1.65
June 16, TSH 0.080 range 0.400-5.800
June 29, TSH 8.150 range 0.400-5.800, FT4 0.31 range 0.58-1.65

Now I was put on 20 mg of methimazole as of June 30! I find it hard to understand why would the Endo have me on that high of a dose still , when clearly I am HYPOthyroid? I feel so nauseated, fatigued, constipated, the balls of my feet hurt, I got a refferal to see a third Endo Dr. but I talked to their office today and they tell me its going to be another 5 days before they set me up a appointment!! I am so irritated! So I have to suffer and wait!! I also am anemic now, have low calcium, my Parathyroid hormone is elevated due to low calcium. I am on 2,000 mg. of calcium a day. I take iron too, and a bunch of other vitamins. They did a 24 hr. urine calcium it was normal. I have high hopes I will go into remission or just go HYPO, I have alot of family members on my moms side with HYPOthyroidism. Any suggestions or info. would be greatly appreciated! Thank-you =)

[Bri1978]

well my New Endo Dr. told my PCP to have me increase my methimazole to 25 mg. in the am , so I really hope this works!! It should :) cause 30 mg. once to high of a dose and 20 right now seems to be to low. I should start feeling better within the next week =) I also am back to taking a beta blocker 12.5 mg. of atenolol , and that helps with my anxiety and racing heart. my heart rate was in the upper 90's . so I see the New Endo August 12 and have labs done August 2! I am just not ready to make a permanent decision right now, I wanna give my body a chance to totally heal and at least try seeing a naturopath, and try acupuncture.

[Bri1978]

well now I am HYPERthyroid once again :( grrrrrrrrrrr!!!!!!!!!! There has got to be a reason why my levels change so fast? My TSH is 0.260 range 0.400-5.800 that was yesterday. my last set of labs were TSH 8.150 range 0.400-5.800 and FT4 0.31 range 0.58-1.65 that was June 29! I asked my pcp to please check my FT3 and FT4 and she put in a note to the new Endo Dr. I will be seeing August 12. She asked him if she should  run any tests.  For anti-bodies and my FT3 and FT4! I am contemplating what I should do next, I cringe everytime i think of RAI :( I was hoping the ATD's would work! But unless something else is going on like maybe adrenal problems or pituitary, I am thinking of having a TT done! I have been doing everything right too,  to stay healthy! I just don't understand? this Graves Disease is crazy and frustrating :(  the only other option I can think of is seeing a naturopath.

[Bri1978]

I will be getting in next week, but I asked the Dr. I seen June 29 to adjust my medicine while I am waiting to see the new Endo and she said no. I will make sure I don't see her again! Its very frustrating to have a chronic illness, and not feel well. I sure hope they get it figured out soon! =)

[Bri1978]

My TSI was 405 it says it was high, there was no range besides it said that the baseline is <140%. I don't understand it?
My Thyroid Peroxidase Antibody was 743 it says it was high, range <35.
It also says that a serum level greater than 350 Micro-International Units?mL can interfere with  the TSI bioassay and potentially give false positive results! If I don't hear back from the new Endo's Dr. office by Monday, I will be getting in to see a Dr. @ my PCP clinic. My PCP is booked till July 23. Thats the soonest I can see her. I am just really tired of feeling so fatigued, I have 3 young kiddos to take care of. =) Thank-you for your help! :)
Also here are my labs from when I was first diagonsed:
January 30, 2011: TSH <.02 range 0.40-5.80
February 15, 2011: TSH .10 range 0.40-5.80
FT3 2.92 range 2.5-3.9
FT4 0.8 range 0.70-1.20

February 24, 2011
TSH 0.03 range 0.50-6.00
FT4  1.48  range 0.75-1.54
FT3  6.40  range 2.00-4.90

April 11, 2011
TSH 0.04 range 0.40-5.80
FT3  5.7 range 2.5-3.9
FT4  1.19 range 0.70-1.20

So then the Endo still kept me on 10 mg. of methimazole, so when I had labs done May 18, they were not good! She could have adjusted the dose and didn't. I have hyperventilated 5 times since I found out I have thyroid issues! It was very scary, I had to call the ambulance 2 times! I really hope I never end up HYPERthyroid again, or hopefully they catch it sooner! I had never hyperventilated either in my life, I have always had anxiety issues and panic attacks but nothing like this.

[roguesandy]

Have you taken your TPO and TgAb levels too?  (thyroid antibodies)  Hashimoto's has this characteristic of up and down hypo/hyper.