[vwbeatles]

#1060735

I was diagnosed with Graves a year ago and have been on a steadily decreasing dose of Methimazole since (most recent – 2.5 mg every 72 hours). My most recent labs revealed a White Blood Cell count below the acceptable range and my endocrinologist told me to stop the medication. I have a follow-up CBC scheduled for next week.

Has anyone else gone through this?

Since this is a side effect of PPU, if I relapse I think my options become RAI or surgery. I do not currently have TED and know that is a possible outcome of RAI.

Any stories or thoughts please!

[Kimberly]

#1184406

Hello and welcome – Definitely have your doctor rule out other causes before you move on to a definitive treatment option. It could be something as simple as your body fighting off another infection. Agranulocytosis almost always occurs within the first 90 days of treatment, and it would be extremely rare for that to occur on such a small dose of meds.

If you truly do have agranulocytosis (which usually comes with a severe sore throat/fever), the medical guidance does NOT recommend the use of any other anti-thyroid meds such as PTU. You can check out the “Treatment Options” thread in the announcements section of the forum for more info on RAI and surgery.

Definitely keep us posted on what you decide!

[Liz1967]

#1184407

Agranulocytosis does occur later in ATD treatment and at low doses. This article notes a woman on therapy for eleven years. Rare, but does happen.
http://www.ncbi.nlm.nih.gov/pubmed/22297058
I opted for thyroidectomy. Current thinking is that it may prevent the eye disease, or at least reduce the risk, if all the thyroid is removed. Thyroid replacement hormone, or Synthroid, is chemically identical to what your body makes. Antithyroid drugs are not made in your body and do cause side effects.

[Kimberly]

#1184408

Agranulocytosis is not to be messed around with, so it’s definitely important to check out all possible causes of a low white blood cell count and consider other treatment options for hyperthyroidism if appropriate.

However, the risk of side effects of ATDs increases with the dose. The woman in this case study was taking 15 mg/day, while vwbeatles was taking 2.5 mg a couple of times per week.

The medical guidance suggests 10-20 mg as a starting dose and considers 5-10 mg/day as a maintenance dose. So the woman in the case study was on a fairly hefty dose, considering that she was 11 years into treatment.

[Liz1967]

#1184409

Here are reports of agranulocytosis after discontinuing mmi, but they dont indicate dose.

I tend to be cautious with any drugs. Look at the side effects of proton pump inhibitors, like Nexium, that are over the counter and now linked to dementia, heart disease and kidney problems.

http://www.ncbi.nlm.nih.gov/pubmed/25120607
Extrathyroidal actions of antithyroid thionamides. – PubMed – NCBI

http://www.ncbi.nlm.nih.gov/pubmed/11869823

A patient with agranulocytosis following the discontinuation of methimazole treatment for 4 months: A case report.

http://www.ncbi.nlm.nih.gov/pubmed/26339512

Development of Agranulocytosis after Discontinuation of Methimazole: An Unusual Case. – PubMed – NCBI

Like anything, you have to weigh risk versus benefit in deciding best course for you.

[vwbeatles]

#1184410

Thanks for the information. I should know more next week after my next CBC. It’s been a week and so far no fever or sore throat, so who knows.

[vwbeatles]

#1184411

Update – My repeat CBC was in the normal range. My Endo has decided to keep me off the drugs and see if my thyroid levels remain normal (aka remission). I’ll recheck my levels in 6-8 weeks. Here’s hoping!

[Kimberly]

#1184412

Hello – Have you talked to your doctor about antibody testing (TSI or TRAb) before stopping the meds? If antibody levels are still elevated, the risk of relapse is much higher.

Keep in mind that although side effects usually occur within the first 90 days of starting antithyroid meds, if you go off the meds for a significant period of time and then start back on again, the 90-day period will basically “reset” – so you will have to be extra vigilant for potential side effects after re-starting the meds.

[vwbeatles]

#1184413

I know relapse is a likely outcome, so I will be asking for the antibodies test when I go for my next round of tests. Since I already had the WBC lowering side effect (and am already off the meds), I’ve been diligently researching RAI and surgery (and alternatives to help the immune system – acupuncture, diet, etc.). I’m not sure what my endo will want to do if I relapse.

[Kimberly]

#1184414

Hello – A couple of notes…

In Graves’ disease, the immune system isn’t weakened – it’s misdirected. Instead of defending our bodies against viruses and other foreign invaders, it mistakenly attacks healthy tissue. (Of course, with agranulocytosis, the immune system does become extremely weak, but this is a side effect of the meds).

As patients, we should all seek the advice of a qualified endocrinologist, but in the end, we are the ones who have to live with the decision! As the latest medical guidance from the American Association of Clinical Endocrinologists and American Thyroid Association notes,

“Once the diagnosis has been made, the treating physician and patient should discuss each of the treatment options, including the logistics, benefits, expected
speed of recovery, drawbacks, potential side effects, and cost. This sets the stage for the physician to make recommendations based on best clinical judgment and allows the final decision to incorporate the personal values and preferences of the patient.”

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