Hi all. I have Graves', and am currently titrating my Carbimazole as I had gone a bit underactive, and therefore not feeling well.
I'm currently on 5 mg three times a week..my last blood tests, in February, showed I was still a bit low through range. According to my endo, the dose I'm on is the lowest possible dose, and if I took any less, that's the same as stopping it altogether.
I'll be doing blood tests next month, but going on how I feel, my levels haven't improved at all.
I wondered if other people had any experience?
In April I will have been taking Carbimazole for a year, and whilst I know taking it for 18 months or more gives the best chance of remission, is that still the case when your levels aren't optimal, and you feel like poo?? Not sure how much longer I can cope, feeling like this.
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BallyHi10
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Many people buy a pill cutter & split the pills & as well as alternating days.
Splitting into 4 little tricky but half is manageable, into quarters is a bit ambitious.
Officially it says not to split but once you’re in an ultra low dose and trying to fine tune level - I’ve found no issue.
The pills do not come in sustained release or special coating so there’s no reason not to, the exact dose will vary fractionally but the dose is so low it’s not going to be significant.
Some use sharp craft knife. When they’re tiny it’s a bit tricky. Unless holding pill carefully half will ping away. Then it’s a mad rush to find them before the pets try to eat them.
A pill cutter snaps shut & holds in pill place easier.
Chemists sell them but lots on eBay / amazon.
I put my pills for week & supplements in organiser. I used to set timers (an app on phone) to set out what & when to take, but I ok remembering now.
Well you could chop the dose of the anti thyroid drug into 2 x 2.50 - it might just ease off the level of its blocking of your own thyroid hormones a smidgeon.
Graves antibodies are either stimulating or blocking at any particular time and there will be be periods in this first phase of the disease when these 2 extremes of symptoms tend to burn each other out leaving you feeling relatively ' normal ' for you.
It's a difficult one to call as all the AT drug can do is buy you time while we wait for your immune system to calm down and this is anyone's guess but you could get your antibodies rerun if this helps you make a decision.
I seem to remember seeing your TSH bouncing back into range - so this is a very good sign but your body may take that bit longer to return to your normal so please do not over exert yourself as it takes as long as it takes and the body needs time to restore and rebuild core strength and resilience.
Do we now have some readings and ranges of ferritin, folate, B12 and vitamin D that make sense as these need to be maintained at optimal for optimal health and support.
Thanks - I do feel like it will take some time - my TSH (when I was taking 5mg a DAY) went up to 3.75 but T4 only 25% through range, and I felt awful).
Last test (after reducing Carbimazole to 5 mg 3 times a week) TSH was 1.96, but T4 was not much higher. I don't want to stay where I am now, because I'm not well.
I only have the (rubbish) Monitor my Health vitamin results (no ranges, just imprecise graphs) where my ferritin was low in range, B12 midway through, and folate low in range. I'm trying to improve these, and am taking a good B complex now. When I do my next test I'll use Medichecks and redo vitamins as well.
I really wanted to know if the endo was correct that the dose I'm on is the lowest possible?
If my T4 and T3 aren't great after my next test, I'm tempted to come of Carbimazole altogether.
I doubt the endo would test antibodies again, is there somewhere I can have those tested privately?
Well I think your endo is being cautious and playing the long game and part of me thinks that is sensible as no doubt he has been there before and neither of you want a repeat performance.
Isn't he private - he can run the antibodies - though anybody can as Medichecks - runs a Graves antibody blood test - just go into thyroiduk.org and the page on private blood test companies.
I was very well on the Carbimazole and if I had my time again would have stayed on the AT drug long term as living without a thyroid is not the walk in the park and T4 monotherapy not necessarily the best treatment option for you, as the NHS would have you believe.
I guess it all depends whether you are with stimulating or blocking antibodies over riding the effectiveness of the anti thyroid medication.
I understand him being cautious, however in the year of having treatment I've only had two months of feeling normal.
Which is why I contacted him again to see if I could take just a little less carbimazole so that my T4 and T3 could rise a bit more and I'd feel well. But then he said I might as well not bother at all if I took less than I do now. Which seems to indicate I either have to suck up feeling crap for another six months (he said to try coming off it after 18 months) or just come off it to see what happens 🤷♀️ neither seem great.
I've just had a re-read of the last letter from the endo, and noticed that because I responded so rapidly to treatment, he recommends stopping carbimazole after a year if my TSH gets to lower in range (plus presumably my T4 and T3 in a good place). Then testing after 8 weeks to see what's happening. So that all needs to happen by the end of this month. I'm pretty confident it won't, so will test at the end of the month, then get myself back to the endo so see what he suggests.
It's expensive to test the antibodies but is worthwhile and likely cheaper to do these yourself than through the endo :
So maybe we need more information now, like a current TSH, Free T3 and Free T4 and the vitamins and minerals so we can work through the next steps better prepared.
Just start a new post when you have all this new information and then you will be prepared to revisit the endo to discuss everything face to face.
Thanks for you help. I see the endo via health insurance, so it's cheaper if he does the antibody test! I've a pill cutter on the way, and I may reduce my dose a tiny bit (and spread it more evenly through the week), then test again at the end of the month.
OK then - well that's even better as the blood tests are cheaper through your endo :
It did occur to me just now that some endo's do not accept own private tests, and I was about to come back on to just check this with you - so job done :
Onwards and upwards and hopefully tweaking the AT medication will allow you to feel better and a little bit more like your ' you ' - keep us in the loop :
Medichecks does this “graves antibody” test. Which is for “TRab”. For some reason they have written “stimulating antibodies” so isn’t accurate. TRab - THS receptor antibodies includes *all* antibodies affecting the TSH receptors which includes blocking, neutral & stimulating. Thyroid stimulating immunoglobulin (TSI) is the stimulating only
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