[ewmb]

#1067255

I never had a low WBC but did go hypo on methimazole at one point. I went totally off the drug later and didn’t go into remission but it took me 9 months to go really hyper again while I was waiting for RAI. Hope that you get things straightened out soon. It can be very dangerous to have you WBC off from the medicine.

I always ask for my lab results to be mailed to me as well as by phone so I do have a paper copy to keep.It can be hard to remember your numbers.

Feel better soon.

ewmb

[Bobbi]

#1067256

Antibody levels change for no well-understood reason. So, someone can indeed experience fluctuations which require changes in the dose of ATD. The WBC lowering dramatically, though, is a worry — especially going into flu season. Typically, going off the ATD allows the white cell count to revert to normal, but your doctor may want to check again.

As to whether or not this spells the end of the ATDs for you is really for you to discuss with your doctor. I have no clue whether if it happens once it is 1)likely to happen again or 2) whether your doctor will be willing for you to risk it.

I hope you are feeling better soon.

[hyperm]

#1067257

Hi,

Sorry you are having such a hard time of it ” title=”Sad” /> Ok yes I have low WBC . I had been on carbimazole for 4 years then came off all meds while pregnant then as I went back onto carbimazole my WBC dropped significantly. It was a hard time for me as I had just gotten home from hospital after a thyroid storm and I got a call 2 days later to say stop immediately and get your bloods done in 2 weeks. Stay away from anyone who is ill and take care with your health a common cold could have made me very ill at that point apparantly. They were in a dilema as to what to do as I was still running very hyper after the storm.

When my WBC increased they changed my meds and put me onto PTU and highlighted I could never go onto carbimazole again. I had however agreed to go ahead with the TT after that. However, my endo highlighted it was the end of the road with ATD’s for me as my WBC kept dipping with PTU and also they were finding it hard to control my levels with the meds so much so in fact I was toxic at the time of surgery.

It really depends if you respond well on another medication however my endo did highlight that normally when this starts happening it can be a recurrent problem – however, thats not to say it will happen to you.

I would def ask your endo and they will keep an extra close eye on your bloods from now on.

M xxx

[mykena]

#1018809

Hello Everyone,

It’s been a while since I posted. I’ve been going through some major swings.

2 visits ago – Labs were all within the normal range but I was still having hyper symptoms (not as bad as originally) so we decided to stay the course with 10 mg of methimazole and see how it goes.

1 visit ago – I had gone severely hypo on 10 mg methimazole and wbc was ok, so we decided to cut the dosage to 5 mg to see if that would bring me back to normal. Approximately, 3 weeks after that visit, I started to feel like it wasn’t working…feeling really hyper (irritable, hot, waking up at night). Even my husband noticed. I decided to keep taking the meds and see if it would level out since it takes a while for the meds to do whatever they’re going to do. So, I have been hanging on to get to the next visit to see where the labs say I am. The hyper symptoms calmed down some and I started to be a little more tired. I thought this might be due to being normal and running after my 1 and 3 yr olds. Another strange thing that happened since this visit, is that I went through a phase of never feeling hungry but if I didn’t eat, I would feel sick (not surprisingly).

Current – Got my labs on Monday. Doc called on Tues and said stop taking the methimazole immediately. Asked if I had been sick at all which I haven’t. WBC is low and I’m hypo. Unfortunately, I didn’t think to ask what the numbers were but I don’t really think it matters. Coincidentally (or not), I had to take a business trip just for a day on Wed and I have been completely wiped (dragging, foggy, unable to focus) since then.

My questions:

• Has anyone else experienced anything like this?
• Is this the end of the road for me and ATDs?
• Does this sound like I’m hypo and hyper? I know that can happen but it’s a bit confusing to know if I experience both while on the ATDs.

Going to the doc on Tuesday and want to be prepared with my questions. Any feedback you can give is appreciated. This is driving me crazy.

[mykena]

#1067258

Thank you for your responses. It’s helpful to read about your experiences. I had been on PTU before when I was nursing but we switched after that was done because the methimazole was a little easier to manage once a day. There we no side effects from the PTU. Interestingly, there were none with methimazole until months later. I have been reading that if there would be any, they usually show up relatively soon. We shall see what the doc recommends on Tuesday. I’ll keep you posted. Thanks, again!

[Kimberly]

#1067259

Hi Mykena – It was nice meeting you at the conference! I am jumping in late, but hope that the endo visit went OK. About 45 days into treatment, my WBC dropped slightly lower than the "normal" range. The endo cut my dose of Methimazole in half, and the WBC returned to normal. I am still on methimazole 2 years later.

So this is a decision that you and your endo will need to make…but I wouldn’t say that this *automatically* means "the end of the line" for ATDs.

Best of luck!

[mykena]

#1067260

Happy New Year to everyone. I’m late providing this update (for many reasons) but here goes. Went back to the endo and he said absolutely no more ATDs. I was still a little hypo and my WBC was more than slightly low and although it had come back up some, it was still not "there" yet. He also mentioned that they have noticed that when a person develops this condition on the ATDs, if they go back on them, it can happen again and actually be more severe. So, I have not been taking the meds since the phone call to stop immediately to see if I may be in remission. I had another set of labs two weeks after the last doctor’s visit and my thyroid hormones were all in the normal range and the WBC was up a little more but still slightly low. Thank God, I have not been sick through any of this with a preschooler and a toddler whose noses are always running this time of year. I was actually feeling "normal" at that time and for a couple of weeks afterwards. For the past week, I have been feeling hyper (palpiations, irritability, night sweats). My next set of labs was scheduled for a week from now but I have a call in to the doc to see if we can get them this week. So, where to go from here? The endo is really pushing RAI if I am actually hyper again. I don’t know about that. I guess I’ll keep reading the boards for your experiences and get a second opinion.

[Ski]

#1067261

There are a couple of "bottom line" facts to consider. If you’re hyperthyroid, you’ve got to fix that somehow. If you can’t take the ATDs safely, then you can only choose between RAI or surgery in order to correct hyperthyroidism. Nothing else works.

We did have one doctor at our October conference who commented that the side effects from ATDs usually come on pretty quickly, and that each time you go off them and start taking them again, you come in as a "fresh" patient, with just as much (or as little) chance of the side effects as someone who never took them. That was said more as a caution for those who have been on them successfully, then stopped to try for remission ~ he wanted them to understand that, even after having good luck with ATDs, they can have a bad experience the next time ~ but you might want to consider ATDs again, if you’re willing, just in case the lowering WBC doesn’t happen again. It’s a VERY personal decision, especially considering you have small children. The risk is pretty large, IF it happens again, and your doctor has had experience with patients who react worse in subsequent courses of medication, so you may find a great deal of reluctance from your doctor if you want to try ATDs again. STILL, it’s your decision. If you want to try and pursue that, you could. You would want frequent blood tests to make sure everything’s going well.

If you are not interested in taking that particular risk, then, given hyperthyroid test results, you would need to choose between RAI or surgery to correct that. They both work, we have success stories from both camps here. ” title=”Very Happy” />

[mykena]

#1067262

Thanks, Ski. I was at the conference and I vaguely remember hearing that comment about the ATDs. Thanks for the reminder that it is MY decision. Sometimes doctors can be pushy. That said, I do think that he would be open to whatever treatment I decide is for me (while strongly encouraging me to do the RAI). I will be discussing with my husband to decide what we think will work for us as a family.

[Bobbi]

#1067263

While you are making up your mind, mykena, you might want to go online and look up the definition/treatments/etc. for agranulocytosis— which is the technical name for the condition that can be caused by the ATDs that lowers white cell count. It might help you to understand why you feel your doctor is being "pushy."

[Ski]

#1067264

Very true. We saw one doctor at a conference several years ago who said they would never prescribe ATDs for anyone just because they’d seen the worst possible case of agranulocytosis in one patient. It scared them that much.

[Author]

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