GP stopped my carbimazole

[Swanhilde]

Hello - am after some reassurance I guess until I see my GP later.

I have Graves disease and have been on carbimazole for 2 years. I am/was on 5mg per day and Endo was hoping to stop in July.

Anyway, I've been feeling off for about 6 weeks. Had TSH and T4 checked and they were within range. GP then does a full blood count and my white blood cells are 3.49 (lowest range is 4). He tells me to stop carbimazole immediately and redoes my bloods. This was last Friday. No results through yet due to bank holiday.

I'm still feeling rubbish - exhaustion, tight chest, palpitations, weak, achy legs - and am now also anxious about what the lack of carbimazole is doing to my TSH levels ...

Can anyone share their experiences? I have another GP appointment this afternoon.

TIA

Your GP or specialist probably won't know about this, but look into Diosgenin, in fenugreek and / or wild yam.

Thus, the effects of Dio selectively affect the proliferating thyroid rather than the normal thyroid, suggesting that Dio might be a safe anti-goiter drug, thereby avoiding hypothyroidism

https://www.frontiersin.org/articles/10.3389/fphar.2022.862831/full

https://www.nature.com/articles/aps2013133

It's only rodent studies. I've been looking to see if there are human trials yet, but can't find any yet I'm afraid. My thyroid specialist wants to put me on your dose of carbimazole and I'm wary of this drug for the reasons you've mentioned. I have no medical background, so can't condone diosgenin supplementation as a predicable or good treatment, but I'm thinking of trialing myself it rather than going on carbimazole. Again, this is not the conventional approach, but make sure you tell your GP if you're going to try it.

Thank you @EarthSight I'll have a read.

I went to my GP on Weds and my white cell count was back up within range, so good news there. However my symptoms are worse than ever.

I will have more tests this week, after 2 weeks of no carbimazole, and take things from there. GP is testing my thyroid, for other AI and inflammation along with the usual blood counts etc. He also mentioned long covid (!) which I was not expecting, so we will see.

I think mine was triggered by the 2nd Pfizer vaccine, or the booster, can't remember now, but I think it might have been the booster. They might not want to tell you that, given how much were were told it was safe and effective, but my endocrinologist he's come across cases of thyrotoxicosis after viral infections and the covid vaccine.

I guess best thing you can do is make sure you are resting or getting enough sleep until you know what your plan is. It's unbelievable really that we only have 2 drugs or iodine treatment for this....and if those don't work, it's surgery time.

Has the GP given you beta blockers while you are waiting? These massively reduce all the symptoms (palpitations, anxiety, that feeling of being wired). I'd ask for the slow release ones if you can get them - beta-prograne. So much better than the instant ones. It gives you a smooth relief and you only need to take one (or two if needed) a day. With the instant ones my symptoms were going up and down throughout the day and I found it difficult to remember to take that many pills.

Your GP should be referring you back to endo. GD shouldn't be treated in primary care.

Unless the GP is thinking your symptoms aren't due to an overactive thyroid?

Hi @WishingMyLifeAway - I have a supply of propranolol that I can take when I need them.

Bloods next week will measure my TSH and T4 but, yes, GP thinks that the symptoms are unrelated to my thyroid as my levels have been in range for a while now.

@EarthSight I was diagnosed before getting covid vaccines so not related for me. Although I could have had non- symptomatic covid before mass testing was a thing. I was also under a great deal of stress following first lockdown. Both could have contributed to my developing spontaneous Graves.

Agree with @WishingMyLifeAway

Your endocrinologist should be managing this, it's not a primary care GP issue.
Has your GP been in contact with your specialist re carbimazole withdrawal? I'd be ringing the endocrinologist's medical secretary tomorrow and let them know what you've said on here.

For anyone reading this thread I had a repeat blood test done 2 weeks after stopping the carbimazole. My white cell count had returned to normal but my TSH was 0.55 (bottom of the range).

My Endo reviewed all the test results and has put me back on daily 5mg of carbimazole to be reviewed in Sept. Interestingly he told me that it's the neutrophil count that can be affected by the carbimazole and not the monocytes, as in my case. Monocytes are affected by infection.

Anyway I am still undergoing more tests with the GP but it seems that my Graves is not the root of my symptoms this time.

Hi @Swanhilde
how are you doing now?
I hope you are better 😊
(going through similar)

Thanks for asking @TheJoyousExpert , it's been a bit of a rollercoaster!

Long story short, I was diagnosed with Long Covid in Sept last year. My thyroid was tested many times over the months and my consultant took me off my carbimazole completely at the end of October (I was down to 5mg every other day).

Bloods done in Jan '24 were good, as were my latest ones at the beginning of this month. My antibodies are down to 1.5 meaning that my Graves is definitely in remission.

I'll have repeat bloods in October and then yearly. Obvs if my symptoms return they will be done sooner. From the endless bloods taken while I was being diagnosed with Long Covid it seems my white blood count is always borderline, carbimazole or not.

Hope you're sorted out quicky.

Hi @Swanhilde
thanks so much for replying 😊
good to hear you’re doing better!
I have also wondered about long Covid myself.
wishing you a continued recovery 😊