[lam64]

#1059759

Hello Everyone,

I was diagnosed with Graves in October 2012. I had severe crippling symptoms beginning in August 2011 (Palpitations, weight loss, shortness of breath, dizziness, heat intolerance, extreme anxiety). My labs came back stating that my TSH was too low to be detected. Started seeing an Endo in October 2011…The only diagnostic tests she completed were an ultrasound and TSH and T4 levels. I read some things about antibodies which could distinguish between hashimotos and Graves… Did anybody else have these tests completed? Are they required for proper diagnosis?

I’ve been on Methimazole since October. After about 3 weeks (30 mg) I felt great, stopped taking my beta blockers. It only lasted for about 2 weeks when my heart rate dropped abruptly and I began to feel exhausted. My TSH results came back as extremely Hypo, so my medication was lowered to 20mg. The lowering continued for 2 months until i got down to 5mg. At that dosage I had a complete relapse to unmeasurable TSH levels (very end of Decemeber 2012).

My endo increased my dosage to 10Mg (last time when I was on 10, I was Hypo) after 4 weeks my TSH was still undetectable. Increased Dosage to 15 Mg, my TSH is still undetectable. I’m feeling very frustrated…My symptoms arent as bad but now I have different symptoms, dry skin and my hair is falling out..
Has anyone else had a similar problem with Methimazole?
I’m beginning to consider TT…Not sure I want RAI..
I want to have a baby and really want to get this under control.. Any advise would be greatly appreciated

[Kimberly]

#1177324

Hello and welcome!

We are fellow patients here, not doctors, but here are a few thoughts…

1. Dosing with ATDs is definitely a trial-and-error process until you find the dose that will control your levels *and* your symptoms. Some patients find that they need to split pills and/or alternate different doses on different days to find that “sweet spot”.

2. One option that a doctor at our 2011 Boston conference mentioned is to use a consistent dose of Methimazole and then add in a small dose of replacement hormone, such as Synthroid. This doc noted that it can be easier to keep a patient stable by tweaking the dose of Synthroid. (This is actually a fairly common approach in children).

3. One question to ask your doctor is whether he/she is making dosing decisions based on Free T3 and Free T4 as opposed to TSH. TSH can remain suppressed for quite some time in Graves’ patients, so this is not a good benchmark dosing during the early stages of treatment.

4. Antibody tests (TSI, TRAb) are commonly used to get a definitive diagnosis of Graves’. There is also a Radioactive Iodine Uptake & Scan that can help with a definitive diagnosis if antibody tests are not conclusive.

You definitely want to make sure your levels are normal and stable before trying to conceive, as this is safest for both mother and baby. Since a future pregnancy is a factor in making your treatment decision, you might be interested in the following guidance from the American Thyroid Association.

The section on Graves’ and pregnancy starts on page 1094 of the original journal article (or page 14 if you download the document as a PDF).

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2011.0087.pdf

Hope this helps…please check back to let us know how you are doing!

[lam64]

#1177325

Thanks, Kimberly!

I appreciate your response. My doctor hasn’t even checked my T3 or T4 levels since my initial appointment. I’m really not happy with how she has been handling things. I am going to look for a new Endo.

[smtucker]

#1177326

lam,

I am now on Endo #3, and am finally comfortable. I think it is worth searching for someone who works with you to find your solution assuming you have health insurance.

I was one of those rare folks that had significant issues on the Methimazole with my liver, so I am opting for a TT. No more babies for me so no thoughts on that one.

[lam64]

#1177327

Smtucker,

Thanks for your input. I am going to keep trying on a new endo. Hopefully I will get an appointment soon! It appears that all the recommended Endos in my area don’t have any appointments for months!!

[Kimberly]

#1177328

@lam64 – If your general practitioner calls another office directly, that can sometimes help cut through the waiting process. You can also ask to be placed on a cancellation list if your schedule is somewhat flexible.

Hope this helps!

[Author]

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