[popscene01]

#1059787

I feel like I am going crazy. I am getting so many different answers from so many different people!

My neurologist, who studied at the Mayo clinic, ref me to an endocrinologist a few months back who diagnosed me with Graves’. I was always told, years back I had thyroid antibodies that caused me to have Hashimoto so it was kind of a shock. I had previously been taking a low dose of Synthroid & was taken off that & put on 10mg of methimazole 3x a day, then they switched it to 30mg 1x a day. Same amount, just all at once.

Since I have been put on this medication my anxiety has gone out of control & my allergic reaction to things are getting worse with dermatitis around my eyes, & hives all over. I started getting Graves’ symptoms again. Palpitations, heat intolerance, shaking. Now also my heart rate has been jumping around & I have a sore throat, not like a sick sore throat but sore sore (hard to explain) & feels like a lump is there & acid reflux is getting bad. They tested my thyroid again & said it was “slightly” off so they put me on 35mg of methimazole 1x a day all at once.

I have always had anxiety but my neuro said that the medication can most definitely be causing these symptoms though my endo is completely denying it. My primary just advises I go see them or go on another “hunt” for yet some other undiagnosed mystery about me. I have a very stressful job also.

Plus my neuro said that after diagnosed with Graves’ that even though my levels may be evening out to normal limits of THS T3 T4, it could still take a LONG time for me to feel better, not just by what the numbers say. My endo is saying the opposite that the numbers, “Don’t lie!” They even did a white blood cell count that came back normal.

My pulse & blood pressure are also jumping around also as mentioned before. They may be normal, like today, but the other day my pulse went from 56 to 100 with a bp of 180/104. Then yesterday my bp was 100/70, pulse has been pretty normal after the day it went from 56 to 100. When I 1st was diagnosed with Graves’ my bp was low & pulse high (80/50 & 120s+) consistently.

Does any of this make any sense to anyone? Is any of this common due to the condition or even the medication?

I go to my primary on Monday & I may even want to look for a new endocrinologist… or have people had better luck with some ENTs? Or maybe I am going crazy…?

Amanda

[Kimberly]

#1177512

Hello and welcome! You are NOT crazy…you are understandably frustrated with two different docs giving you conflicting information! We’re fellow patients here, not docs, so we aren’t allowed to give medical advice on this site, but here is some general info that will hopefully be helpful.

First, I’m not sure how long ago you had the White Blood Cell count done, but I would push your doctor’s office to make sure you get this testing done ASAP, as sore throat can potentially be a sign of a severe side effect with the Methimazole. If you can’t get in to your endo, see if your general practitioner or even an urgent care center can do this testing for you over the weekend.

Most patients do see an endocrinologist, particularly early in the diagnosis/treatment process. Once patients are stable, though, some will choose to let their general practitioner take over the routine monitoring process. An ENT primarily comes into play for patients who choose surgery as their treatment option, and once levels are stable post-surgery, these patients will go back to seeing their regular endo or general practitioner.

Was there a particular reason that your doc had you start taking the Methimazole all at once? Although the latest medical guidance notes that this drug *can* be taken in a single dose, many docs (including mine) prefer to have the dose split up throughout the day.

The latest guidance on treatment of hyperthyroidism (which you can find in the “Treatment Options” thread, notes that for “minor” skin irritation with methimazole, you can keep taking the drug in conjunction with antihistamines. For minor and persistent reactions, switching to the other anti-thyroid drug (PTU) is an alternative, if treatment via RAI or surgery are not options. However, a doctor would need to make a judgment call as to whether or not your reaction was “minor”. Continuing to take an anti-thyroid drug – or switching to the other anti-thyroid drug – is not recommended for more serious reactions.

For Graves’ patients, our relationship with our endo is a long-term one, so you definitely want to connect with a doctor who takes your questions and concerns seriously. If you are looking for a second opinion, hopefully, your primary can give you some direction on Monday, or you can check out the “Looking for a Doctor” thread in the announcements section of this forum.

Take care – and please check back to let us know how you are doing!

[popscene01]

#1177513

I am actually in the process of looking for a new endocrinologist. I saw him on Thursday & he made me feel awful. He said I just have bad anxiety & he was going to send a note to my primary that I needed to be put on medication for that & that the “lump” in my throat was just GERD & I needed medication for that also.

I mentioned before that my neurologist studied at the Mayo Clinic so I take her word over anyone else. I talked to her after my terrible appointment with my endo on Thursday & she told me because the methimazole effects the central nervous system that it could most definitely be affecting me & causing anxiety. My therapist works with my neurologist & wrote an additional letter to my primary advising that an anti-anxiety medication will just mask the Graves’ & that is what needs to be addressed 1st and not to prescribe it to me.

A friend of mine who suffered from Hashimoto was seeing an ENT here who specialized in thyroid disorder treatments & even surgery. He goes both ways as far as treatment with medication & surgery. I will be contacting them to see if I can set up an appointment with this doctor.

Reading other posts I see people with this need to make sure their levels are “stable.” My current endocrinologist was only checking my levels 1x every 6 weeks. I read other people, including my friend, were having their levels checked weekly. My endo advised my levels weren’t changing, I’ve only had blood tests with him about 3x since the end of October, beginning of November, when I was 1st diagnosed with a “severe” case of Graves’. So I questioned why he upped the medication & he advised because my levels changed, though in the same conversation he told me they didn’t change! I no longer trust his judgement as he became very condescending & nasty toward me after I pretty much called him out.

It’s a much longer & more involved story but I can’t have a doctor not listen to me & then also contradict his decisions. I have no clue why he changed the dosage to take all the pills together at once. I still was unable to see my numbers, even when I asked, he just said that the levels were in “normal” range. I think he was also looking at a “previous” white blood cell count by the way he worded it.

I understand that medical advise cannot be given here but the information that is given will definitely help me understand my condition more, know what I need to look for in a doctor & help me be educated enough to discuss the affects of it & my treatment options with them.

Thanks!
Amanda

[adenure]

#1177514

Hi Amanda,

I just wanted to give you encouragement to hang in there and stay strong. Keep looking for an endo. who will work with you and listen to you.

Just my 2 cents… but, I had a thyroidectomy bc methimazole was causing me liver issues. It leveled my thyroid levels out, but it raised my liver enzymes 8 times the normal amount (and that was only on 5 mg. a day) in a 7 week period. So, I was pushed into deciding between surgery and RAI fairly quickly. PTU wasn’t recommended since the methimazole is considered safer as far as the liver goes. I don’t know if you’re having liver issues or not, but if it isn’t working for you and you feel like crud, I think talking with your endo. about choosing a more definitive treatment isn’t a bad idea (if that’s what you’re thinking about). Even on methimazole, I didn’t feel super great. Not terrible, but not great. I feel better on Synthroid (after surgery) than I did on methimazole. I also like knowing that the roller coaster ride is over as far as hyperthyroidism goes. I’m not saying surgery is for everyone. Everyone is different, but if you feel like methimazole isn’t working or causing you problems, and your doctor supports surgery, it might be something to think about. I just feel whole again, grounded, normal, and well. It’s not perfect pre- Graves me, but it sure is better than I was when I was sick!

I had weekly labs after I went off of methimazole bc they wanted to monitor my levels closely while I waited the 6 weeks for surgery to make sure my thyroid hormone levels stayed in range (for a safe surgery). I wasn’t on methimazole during that time bc of the liver issue on it.

[Kimberly]

#1177515

Hello – Just a quick note on follow-up labs. The latest medical guidance recommends monitoring of anti-thyroid drugs every 4-8 weeks. (You can find this document in the “Treatment Options” thread in the announcements section of this forum.) However, some patients can respond *very* quickly to ATDs, so it’s definitely important to be on the lookout for hypo symptoms and contact your doctor’s office to get in more quickly if needed. Each patient is different, but hypo symptoms can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

I’ve personally not heard of weekly testing for methimazole, except as Alexis noted, in cases where there is concern over possible side effects.

Take care!

[Author]

Posts