Sorry this is quite long. I'm looking for some advice about next steps and what to ask my Endo when I see him next week. Background:
I spoke to my GP in March 22 because I was exhausted and anxious and people I barely knew were commenting how awful I looked! She ordered a load of tests which found I was Hyperthyroid- TSH <0.01 (0.49- 5.23), FT4 23.4 (11.5-22.7), FT3 8.1 (3.1-6.8) and started me on 20mg Carbimazole while I waited for an Endo appointment.
The same tests found I had Coeliac although it was autumn before I got my endoscopy results and went gluten free. Other results from March 22 were: B12 403 ( 211-911), Folate >20 (>5.4) Ferritin 13 (10-291). I didn't have access to the app at the time otherwise I would have started Iron supplements.
I spent most of 2022 overmedicated as my GP had guidance that assumed I'd see an Endo in 8 weeks and didn't know what to do with me when it turned out to be over 8 months! I can now see that my TSH is very slow to respond to dose changes and my FT4 and FT3 were in range by May 22 but my TSH took months to catch up.
When I finally saw my Endo in December he reduced my dose to 5mg. He ordered an ultrasound which found two small cysts (which he said he'd like find in a decent % of healthy people) and antibody testing which found negative TRab (no numbers) and elevated TPO 74.6 (0.0-59.0). He's been very non-committal about what's causing the Hyper and I'm not sure he knows. He's suggested RAI every time I've seen him but I'm not keen without giving Carbimazole a good try first.
When I realised I was still tired after this Christmas and my January 24 thyroid levels came back around the same as they've been the last 12 months (TSH 3.13, FT4 13.9, FT3 4.4 - ranges as above) I asked my GP for further testing assuming it was likely to come back normal and I needed to reduce my Carbimazole. The tests in fact found I was iron deficient - ferritin 8 (15-200) and vitamin D deficient - 20 (50-250). I've now been prescribed both. My B12 was also right at the bottom of the range 269(211-911) so I've started self supplementing.
I suspect my Endo will again push RAI next week. My gut from looking at my numbers is that I'm still slightly over medicated but my TSH is in the 2-4 range my Endo wants so I'm not sure how easy he will be to convince. Could being over medicated have caused the drop in ferritin and B12? I don't feel well at the moment but I've only been on iron, Vit D and B12/B complex for just over 2 weeks. Should I ask about reducing or coming off Carbimazole? Or would I be better staying on the current dose for longer if I'm stable? I don't want to be on medication for life if I can avoid it but would prefer Carbimazole if I know its working over taking a risk on RAI and Levo. Is there anything I've missed that I should be asking about?
Thanks for your help
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Sesameseed82
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To be fair he did give me Trab numbers at the time but I've lost the pice of paper and for some reason he's missed them off the letter to my GP. (I've never been sure why I can't see my Hospital results online given they use the same lab as my GP!)
I suspect not transient Hyper as my levels have been very stable for the last 12 months but maybe I'd be in range now if I stopped the Carbimazole?
I'm not technically anemic (yet!). I'm on 200mg Ferrous sulfate twice a day. I'm happy to try that first before looking at other options as infusions would require even more time off work.
I'm taking one cholecalciferol 20,000 a week for vit D to be reviewed in 6 weeks. GP registrar (training practice) that phoned me about the bloods wasn't worried about the B12 as its in range. I decided to pick my battles and only go back if I can't get it up to mid range by myself.
Deficiencies are very common with coeliac and now my gut damage has healed as much as it can I'm happy to give pills a go before trying anything more drastic.
When I finally saw my Endo in December he reduced my dose to 5mg. He ordered an ultrasound which found two small cysts (which he said he'd like find in a decent % of healthy people)
Hashimoto’s Disease is, on balance, a far more likely diagnosis. In which case, RAI would be a massive over-reaction. While your results were slightly on the hyper-side before you started the carbimazole, they weren’t elevated in the way we generally see in someone with Graves Disease.
And prescribing you carbimazole has left you with mild hypothyroidism, which is why your already dreadful nutrient results have tanked (a ferritin of 13 is pretty dire—you have an iron absorption issue, likely exacerbated by the poor gut absorption brought about by having hypo symptoms).
Interesting. I that case reducing or stopping the carbimazole would probably help? I'm vegetarian with heavy periods so my ferritin has never been great. Its been hard to work out what has been an absorption issue caused by the coeliac damage and what might be caused by being overmedicated/hypo.
If I was your endo, I’d certainly consider stopping the carbimazole to see how you fared without it.
But endos aren’t always as clued up on this stuff as you might imagine. Many are diabetes specialists hopelessly out of their depth.
Re heavy periods—it’s an interesting thing that people with iron deficiency anaemia have heavy periods. Because the iron deficiency won’t be due to heavy periods—the fact you’re anaemic is probably why your periods are heavy. When you have iron deficiency anaemia your clotting mechanisms go awry. So fixing the anaemia may well fix the heavy periods.
As for coeliac—absolutely. Going gluten free definitely helps your gut get back to absorbing nutrients but it takes a while—damage can take a long time to fix and accidental glutening can set you back for months.
Thanks. Thats helpful. My Endo is definitely a diabetes specialist! Frustratingly there is a thyroid specialist at my local Trust but I think they might be off long term sick or something as after several appointments cancelled at short notice I got moved to my current Endo's list.
I was thinking about asking to stop the Carbimazole. Even just looking at TSH I've got lost of room to move and still be in range. Good to see I'm not alone in thinking that
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week or possibly daily
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I had Graves back in 2012/3. I was treated with block and replace which is slightly different to how you are being treated but right from my first endo appointment which was three months after I had started on 20mcg carbimazole (which was then increased via a letter from my endo who I hadn’t seen at that point) to 40 mcg a day after my four week blood test showed no noticeable difference. I was left on 40mcg for another two months until I finally had a blood test a week before my hospital appointment and met an endo. At that point I was very hypo.
At every visit during my treatment I was told I would be given RAI should I relapse and every time it was mentioned I said I did not want it.
To get back to you - I would tell your endo that you won’t consider RAI until all of your vitamins and minerals are well up within their ranges and your coeliac disease is sorted out.
I’m not medically qualified but I’d say you want all of that sorted out before even considering permanently destroying my thyroid gland. As for reducing your current dose of carb I don’t know because block and replace treatment is quite different to how you are being treated.
Thanks. I've already been clear I won't consider RAI without giving medication a good long try first. He's clearly a bit grumpy about having to keep me on his list but to me it should be a last resort not first treatment
Overfunctioning nodules often diagnosed with elevated FT4 & higher FT3. I had similar results to you.
The solid components can hyper function the cystic (fluid filled elements) will not.
20mg carbimazole for 2 months & my levels were low in range - dose was halved. 8 months on 20mg must have made you quite hypo!
5mg very small dose. You can half pill or take every other day to lower further.
Doctors focus on TSH but this can be unreliable / down regulated - but you need to look at FT4 & FT3. Most feel well if in upper part or range. Doctors prefer to have them around mid way (or under, or just go by TSH). Mid way when being treated for hyper has some logic as then there’s room to monitor for increases.
I was informed I’d be having RAI arranged during first appointment & was sent the consent form soon after. I never agreed & I still take carbimazole 5 years later. Tell doctors you’re not ready yet, they don’t need to know why - I just say it not a convenient time. They don’t need to know more or when I intend to agree (never).
Adjust carbimazole & work on optimising levels & nutrients.
Ask endo if TRab negative, why are you still continuously hyper. Their interest seems to be treating & moving on. First step should be to determine cause.
Yes even my GP realised I was very Hypo when they eventually tested me! 20mg for eight months was way too long!
My gut is that my FT4 & FT3 are too low and even by TSH I'm right at the top of the range my Endo told my GP to keep me in (2-4) I think I'm going to wait until I've at least spoke to the Endo before changing the dose though. He seemed fairly sure the nodules were cystic but I'd like to confirm as obviously long term treatment options would be different for that rather than autoimmune.
You're definitely right about wanting to treat and move on. He seems much less interested than I am about understanding what's actually going on in my body and getting it back to as near normal as possible
The endo should account for FT4 - FT3 as going by TSH alone is wrong & as for saying keep between 2 - 4. That’s quite wrong too. Most healthy individuals have TSH under 2.
Sometimes if TSH has been low for a period of time it remains low longer term or even permanently. My TSH remains undetectable despite in range FT4 & FT3 for many years.
One thing that many doctors seem to be unaware of is that Hashimoto's Thyroiditis (referred to as Hashi's by patients, but as "autoimmune hypothyroidism" or "autoimmune thyroid disease" by doctors in the UK)
often begins with a period of mild hyperthyroidism, but eventually this becomes permanent hypothyroidism.
The reasons for the above behaviour (in autoimmune thyroid disease) is ...
The immune system starts attacking the thyroid and damaging/destroying thyroid cells. The damaged or destroyed cells release their thyroid hormones into the bloodstream and as a result the levels of Free T4 and Free T3 rise. This then causes the TSH to reduce.
In the early stages of Hashi's before much damage has been done to the thyroid these immune system attacks can release a lot of thyroid hormones into the bloodstream, making the patient appear to be hyperthyroid.
But each immune system attack reduces the size of the thyroid by a tiny bit, so the attacks have a smaller target. Over time the thyroid shrinks and less T4 and T3 are released into the bloodstream during normal working and during immune system attacks. Eventually the patient's thyroid is so damaged that it can't produce enough thyroid hormones and the patient becomes permanently hypothyroid.
...
For some basic info on the patterns of thyroid function test results for thyroid disease :
If I was truly hyperthyroid I would not agree to having my thyroid destroyed by RAI. I would much prefer to take anti-thyroid drugs like carbimazole or PTU for as long as possible. The longer people are on such drugs the higher the chance they will eventually go into remission.
In the UK hyperthyroidism is usually treated and managed by hospital endocrinologists, and GPs prescribe following endo instructions. If the patient agrees to RAI or thyroidectomy the resulting hypothyroidism is treated by GPs. The hospital doctors wash their hands of the patient permanently.
People who have RAI are known to have a form of hypothyroidism afterwards which is much more difficult to manage than "normal" hypothyroidism. I think there might also be an increased risk of cancer.
If someone with hyperthyroidism chooses to continue with anti-thyroid drugs permanently, and refuses RAI or thyroidectomy, the NHS cannot refuse to treat the patient for their hyperthyroidism, however long it goes on for.
See this paper - unfortunately the full paper is behind a paywall and only the abstract is available :
Thanks I'd seen some other posts about transient Hypers. My levels seem to have been very stable on the same dose for 12 months now but my FT3&4 are fairly low and my TSH fairly high in range so I had been thinking about trialling reducing/stopping Carbimazole to see if I stay in range but at the other end. RAI definitely doesn't sound much fun and isn't really an option while I'm working with young children as I can't afford to take that much time off work when I feel OK taking a pill each day
Hi Sesameseed82, I wish they had tested you for Perniciuos Aneamia before you supplemented B12. It can so easily be missed, and overlooked once those serum levels start rising. The serum wont tell you what is actually reaching the cells.
Could you do your own B12 Active test, not available via your GP but is available quite annoyingly on Monitor My Health run by NHS as a private finger prick. See the Thyroid UK link to private testing. It might flag up something.
I might do further testing if I'm still feeling unwell in a couple of months. B12 deficiency is common with undiagnosed coeliac and I've never been below middle of the range or had any symptoms prior to that. I'd have to pay for a private test anyway because my GP was very much of the opinion that in range means no problem. Thanks for the info about testing though that's useful to know
You will find discount codes with THYROID UK and check Medichecks too, they do the B12 Active ,look out for offers there too......and Blue Horizon. Its just if anything shows up on the Monitor My Health site because its run by the NHS at your expense then your GP couldnt quibble with you.
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