Hi everyone. I haven't posted in a while as I have been ticking away okay on block and replace therapy. Due to come off meds in May next year to see what happens, I'm forever hopeful!

One thing however that has practicall plagued me through this treatment is the potential threat of agranulocytosis - it terrifies me. My Endo has quite a relaxed attitude towards it and reassures me at every appointment however I have a toddler who frequently catches sniffles and coughs from nursery and, if I got my WBC tested every time I had a sore throat I would never be away from the doctor!

I recently read something by Dr Toft who said that it would occur in the first few weeks of anti-thyroid treatment. Other sources say it can happen at any time on any dose.

Could someone clear up for me please?

The last twice I have had sore throat/fever I have had normal and healthy blood counts.

It will be approx one year since I started on Carb.

14 Replies

  • Chloececillia (did I spell that right???) according to online information, agranulocytosis happens early on in therapy. Also if you would get agranulocytosis, your gums would be a right royal mess.

    Perhaps someone else around here can provide more info.

  • Nearly, gabkad! :) thank you for advising.

  • I was in the same situation until recently (I have just come off my anti-thyroid meds after a year). I panicked too as I work in a nursery and have many, many sore throats in a year! However, I was reassured by the consultant who said the sore throat would be very bad and I would feel extremely ill if there was a problem. That said, I would never take a risk if in doubt. In the end I had my blood tested twice with a sore throat but was fine each time.

  • This is what my endo said too. It would feel like the worst sore throat of your life. The sort that knocks you side ways and mouth ulcers as if you had no immunity at all. So I think you would know. I have been on b&r for 16 months and then came off it 5 weeks ago. Currently in remission with normal bloods. Alex

  • Congrats Alex, that's excellent you are in remission! Long may it continue for you. Thanks for the advice.

  • Our GP said it could take us all 2 years to get used to the 'community bugs' and made an interesting comparison that he was ill constantly in his first couple of years of practice! Glad your bloods were fine, thank you for replying.

  • I had regular sore throat / swollen glands. First time I had. WBC - mainly because it was voting up to a long Christmas break and I didn't want to risk there beng a problem but all along I suspected if my throat was being caused by agranulositisis then I would have felt extremely ill ( which I didn't) and my mouth would have been a real mess - which is what gabkad and qwerty's consultant have both said.

    I also knew that Dr Toft said that if y were going to be affected it would happen early on.

    Saying that, that's only my opinion, I've got no medical training at all and I would always advise anyone worrying too and speak to their doctor should they have any sort of a problem when taking carbimazole.

    I was never frightened of carbimazole when I was taking it and I felt very well while I was on it, so well that should I relapse I would definitely want to go back to taking block and replace rather than either of the alternatives.

  • Wow, I have sore throats frequently, and am hoarse. I don't know what agranulocytosis means... I'm going to look it up. Sounds like a bad thing. I research everything and bring things I learned to my doc, including taking my meds on an empty stomach, with fruit juice and Zinc. I'm buy buy books through Amazon. The best one for Hasimoto's is r ally helping me out. I now take Ferritin, after asking my doc to check for me being anemic,and suggesting I take enzymes before and after I eat. Told her the 2 I plan on taking, the book suggested it. She said I was right on the money! I end up doing the research, highlighting things I want to show her, and she has no problem with it, but she's a female. I'd never do that with my Primary Care male doc, as he would yell that he's the doctor. My rhumatogist is helping me til I find a good Enocrinologist.. Gotta love it!!!

  • yes..but what are you doing to heal your Gut and immune system..have they advised you on how to put your autoimmune diseases into remission?

  • Hi Faith I know very little about this also and would be so interested to learn. I am told the bare minimum by the professionals despite my extensive questions!

  • what i did was to start with Isabella Wentz website and signed up for her emails..which basically gives you the autoimmune protocol and then i did the tests she mentioned and am seeing a Functional Medicine doctor. She has no more hashi's and got off thyroid meds..its very possible. The protocol is good for all autoimmune disease.


  • My gastroenterology is giving me another and maybe last test? I've been hospitalized with my swollen hard abdomen to look like nine months pregnant. The ER doc's come running cause they think blockage!!! Lol I live this way! I aspirate into my lungs, off, thus bronoscopies. I also have no gag reflex, found that out last time I was in the hospital. Anyway, the test is a breath test, first thing in the morning. It checks for certain bacteria in my gut. I have had to stay off probiotics and antibiotics and lots of other things before I take the test. My pulmonary doc and my Rumatoligist wants my heital hernia ficard and my esphogaus made tighter, as I can die from choking and food going into my stomach.

    Second, as a 3 month old baby, my intestines turned inside out and I almost died. The 1950 doc did exploratory surgery and discovered the cause of my sespis. I was the fist baby saved from that problem, yet it left me with an exploratory scar from my chest to my pubic bone, so lots and lots of scar tissue, also a good source of leaky gut. They had to cut lots of dead intestines out. Doc's tell me it could be my source of Leaky Gut. So, breath test, then hopefully surgery to fix hernia and tighten stomach. If they don't figure out how to stop the horrid bloating first, I just might blow up and pop like a balloon!!!

  • i had that also, when my thyroid first stopped working and i developed full blown hashi's, i also have a hiatal hernia. i looked 9 months pregnant. They did all kinds of tests and found nothing. The bloat finally stopped once on t3 only, got off all t4 containing meds, because i don't convert well. the new doctor has found i have barely any good bacteria in my gut. All symptoms of hiatal hernia and acid reflux stopped, once i changed my diet and thyroid meds. Only occasional flare ups, which i believe will stop, once hashi's is in remission. I would not have surgery on the hiatal hernia, once you do, you lose the ability to vomit! it is not necessary, usually..please rethink, and research. That is all i have done since 2009.

  • Thank you so much!

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