It's been a while since I posted anything about myself. Since my last post maybe a year ago, my thyroid blood results have been very stable since deciding NOT to take the radioiodine option, I was offered.
My latest results after being on 5mg carbimazole for 16 months has seen my:
TSH rise to 4.86mlu/L (0.27-4.20)
Thyroxine (free) 13.7 pmol/L (12.0 -22.0)
All other results eg liver, renal and calcium are all well within the normal range. My Endo team have asked me to stop carbimazole for the next 4 months when I'll be due to repeat the blood test and have a review.
My new blood form has requested: Endo 3, Endo 4 and TSH
I keep explaining to my Endo team that my hyperthyroidism returned after starting interferon for my MPN issue, a well documented side effect. They are still keen for me to have my thyroid taken out or ablated with radioiodine. I still refuse both! My main reason is my disabled mother. I simply can't afford to have to change my care timetable or even imagine myself not being able to get out of bed due to any side effects I may experience. So NO to both options!
Is there anything I should be asking my Endo team or I should look out for?
Thanks
LadyA
Written by
LadyAbash
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My vitamin levels were checked early this year and each was normal except for my vit D which was high due to taking a high dose daily. I now take this monthly. I also take vit b12, c with zinc, cranberry and cod liver oil.
I couldn't find the actual results from my Endo blood tests feedback but did find that that the ferrtin and folate was done by the Haematologist in January 2022. Their feedback only gave the results of haemoglobin, white and platelets. I'll ask for the print out of that result if I can.
I also had Endo blood tests done in January too. That was the last set before last months
So glad you agree! I can't understand why the view that 5mg Carb is the 'lowest effective dose' so the manufacturer's won't make smaller pills. I have regular run-ins with my dispensing pharmacy as I want pills with a score line, while their default brand is a microscopic pink pill that shatters if you try to cut it. Currently stable on 7.5mg daily, 1.5 pills, they say try taking 1 and 2 pills on alternate days. If they can remember what they took on what day, they have a better memory than I do!
I'll try and speak to someone next week to find out.
I have been in that exact same position and I am presently awaiting a total thyroidectomy and for the time being back on Carbimazole.
When they stopped the Carbimazole after about two years they tested my thyroid bloods every 3 months. At the first testing my TSH started to drop off and T3&4 rose and it did the same for the following two quarters. On the last test at 12 months it bottomed out at 0•001 and the T3&4 were quite high. This resulted in a final option of the Raioactive Iodine or surgery.
As I used to lecture in the safe use and monitoring of radiation I took the surgery option. Staying on Carbimazole long term was not an option as it will damage your liver and it contraindicates with Hydroxycarbamide which I have been on for 11 years. My MPN consultant suggested to the Endo that as my bone marrow could be affected by the Radio iodine it was too much of a risk stating that mine had already altered by itself, giving me ET, and that I might be more at risk of transforming my MPN.
My haematology team are not keen on me having surgery or radioiodine as they feel that my results have been stable. As they said don't what is not broken as they put it.
that’s good as I don’t think peginterferon contraindicates with Carbimazole. I would however ask for confirmation regarding long term use of Carbimazole to your liver as that was the main reason I have had to make the choice.
Before coming off Carb for 4 months, I'd want to look at how your reaction has changed. How long have you been on the 5mg dose? How long ago was the test before this latest one and what were the results? You could try cutting the Carb dose to 2.5mg daily and get a test after a month to see how that's affecting you. Be prepared to be told you are nuts, I got told 'well I never heard of anyone doing that' when I told an endo I cut my 5mg pills in half. Been doing it for 10 years now, like you I refused thyroid destruction, still alive! I get my bloods done every 1-2 months privately, makes it so much easier to manage than long intervals when a change in dose can have a profound effect. That's what causes the ups & downs which result in you being told thyroid destruction is the 'only option'. Unless you have thyroid cancer, can't tolerate the ATD's or they stop working for you, thyroid destruction certainly isn't the only option. Good drug management works for me, I'm lucky to have the support of a sympathetic GP. Best wishes and hope you find a solution.
Thank you for your response. I was on carbimazole for 16 months. My last blood tests were from January prior to my September one.
It feels to me that the Endo team are not quite sure. I asked what may have caused this spike, given that everything had, been good for the last 16months.
I will try the 2.5mg as I still have carbimazole left. I will also do my research and get some private blood tests done at some point. Admittedly, I had only started recently asking for the full printout of my blood tests but will continue to do so from now on.
I definitely don't want to have radioiodine or surgery. I will talk to my GP about this and see what she also has to say.
Good plan. I would point out that because you didn't have a test between Jan-Sept, that's 8 or 9 months out of those 16 so you might have been falling very slowly over those last months. It's good that you know before you actually fall into hypo, with me I was falling much faster and was refused a test on the grounds that it was 'too soon'. My eye consultant said it was very important I did not go hypo and ordered tests. They showed I'd already gone hypo and I did develop eye disease so stopping a steady fall before things go too far is important. However, stopping your drugs completely for as long as 4 months could just send you OTT! My reasons for refusing thyroid destruction are the same as Millea , I have seen too many stories of people being undermedicated with supplementary thyroid hormone. I know from experience if I fall under the mid-point of the FT3/4 ranges I feel grim, but they will just tell me I am 'fine', and seeing people with high TSH results who are similarly told they are 'fine' is equally scary. My GP surgery messages me once a year - yes, I did say once a YEAR, to have a thyroid test, I had my last private one only 3 weeks ago showing my FT's in range and sent the results to the surgery, to my surprise they accepted them without question so that's one more battle won!
I originally refused the radioiodine and surgery in the nick of time after posting my original story here. I think a couple of weeks before I was due to have my radioiodine treatment. I was so grateful to everyone here who helped me see that there were other options other than the one I was being presented by my Endo team and consultant at the time.
I read pretty much all the research papers, I could get my hands on, about the long term effects of radioiodine, despite being told there were little or no side effects to the treatment. I think I'll try getting my blood test done through my GP first before going private. I can have a much more indepth discussion with her. Thank you for a your suggestions.
I was on Carbimazole for almost 4 years, gradually bringing my dose down until I was on 2.5 mg on alternate days before stopping altogether in February 2022.
During lockdown I wasn’t able to access blood tests and monitored my heart rate as a guide to whether my dosage was correct, aiming to keep it in the mid 70’s bpm.
I am now in remission, last blood results
TSH 0.83 (0.35-4.94)
FT4 14.10 (7.5-21.1)
FT3 4.10 (2.63-5.7)
I don’t know if this helps at all but let me know if you have any questions.
I think since writing my original, I have come to realise that I may have taken my eye off my own ball, whilst focusing on my mother. All the responses I have had has shown me that very clearly.
I am in the gym regularly and primarily monitor my exercise heart rate and my recovery rate. I haven't noticed any adverse increases in my heart rate as this is usually one of my indicators that my thyroid has relapsed.
I think I'll get a private blood test so at least I a starting point before trying the 2.5mg carbimazole so I can see any changes in real time.
I'll be back when I have moved on all the suggestions.
Good luck, but slow and steady wins the race I think when coming off carbimazole. If my Graves returns I will go back on as I tolerate it well and do not want to consider the other options.
Hi LadyAbash - I would absolutely agree with you regarding the options of having the thyroid removed or the radio iodine treatment. I too, refused these on the basis that I would then be hypothyroid permanently after these treatments and I know many have struggled to find a correct dosage of medication after that. I am still on carbimozole with no obvious side effects after 7 years and am currently on 10mg a day. This seems to be a very good level for me.
Does your endo believe you are in remission and is this why they want you to come off carbimozole? If so, I would ask for a blood test request after two months off and another before you next see them in four months. That way they can catch any changes in your results early so you don’t relapse.
My Endo team took me off carbi because they said 'carbimazole was working too well', whatever, that meant. All levels apart from TSH which they said was just above the normal.
I read to request the full blood test printout. I'll come back to you if I have any questions.
Do you mean you haven’t been advised of of as a potential option, or that it’s been implied it’s the (only) option.
it is often a preferred option by doctors, but unsuitable for some people, some might feel it the right treatment, but many feel pressured to accept the treatment, which is very wrong.
On your profile you ask if you can take zinc and magnesium with carbimazole, - yes you can, I take supplements away from the time I take carbimazole but fine to take on a daily basis. If you start a post of your own with some details of your story - or any results - I’m sure there’s other useful advice you can receive.
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Results from blood test
Radioiodine treatment 
Recent blood results (T3 only) 
Hyperthyroidism blood results
