After many years of feeling unwell following the birth of my kids (20 years), I was finally diagnosed with overactive thyroid and b12 deficiency in 2021.
TPO AB 703 lu/ml (0-35)
TSH Receptor AB <1.5 IU/L
TSH 0.01 (0.4-4.0)
T4 28.8 (11.5-22.7)
T3 9.8 (3.3-6.1)
I have been on and off Carbimazole 5mg, 4 times since then, each time, very quickly (withing a couple of months) become euthyroid. Then even quicker (days/week) have underactive symptoms. Each time I have tried to reduce my dose of carbimazole so that I can stay on as low a dose as possible to stay well, with different levels of success. Each time, once I'm advised to come off carbimazole, I quickly (2-3 months) become overactive again and feel very unwell. I am due to see my endocrinologist on Friday and feel sure he will tell me that because I'm not stable on Carbimazole that I need a more definitive treatment which I will strongly resist.
In the past, I've asked what form of thyroid disease I have, and he has said he doesn't know, but I gave a strong family connection to hashimotos on my mums side. I suspect undiagnosed graves on my dad's side but am not sure about that.
I've been reading on here since 2021 and have had invaluable information which has helped me to stay well. I have noticed a few of you with similar symptoms to mine manage their condition with a very low dose of carbimazole, sometimes only once a week or a quarter every other day.
I'm wondering how you arrived at that regime, what symptoms did you take into account. Because right now, my blood tests are too far apart and missing that crucial transition from hyperthyroid to euthyroid to hypothyroid.
Thanks you guys are life savers.
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Calise
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This show high positive autoimmune, this usually indicated Hashimoto’s (causes fluctuations early on but ultimately low thyroid function)
TPO does appear positive with graves to confirm graves you need positive TRab or TSI.
TSH Receptor AB <1.5 IU/L This looks like a range (0-1.5) being negative. Or the test results is below what the test looks for, in which case you are negative for Graves
TSH 0.01 (0.4-4.0)
T4 28.8 (11.5-22.7)
T3 9.8 (3.3-6.1)
These are quite elevated, & if continuous would require treatment to lower. Graves does typically reach very high levels.
5mg is an extremely low dose, was that a starting dose?
Are doctors testing FT4 & FT3 or going by TSH? If low dose carbimazole causes hypo & no dose causes hyper. You’re either naturally fluctuating or the drs have diagnosis or management wrong.
If it’s genuine a slight elevation which needs controlling, many take dose every other day or split a pill into half. Trouble is you can’t rely on symptoms. Symtoms are so varied to the individual & too many other factors mimicking symptoms such as nutrient issues, relying on feel is not a good approach.
Carbimazole works by temporarily pausing production, the entire outcome doesn't manifest for many weeks.
Testing should be around 6 weekly - & dose adjusted, if drs aren’t testing frequency have you thought about private fingerpick tests, to fill the gap? Basic TSH, FT4 & FT3 might be manageable.
So it would seem from TPO antibodies detailed above that your blood test result for these abs over range and that you are with Hashimoto's - an Auto Immune Disease that tends to attack just the thyroid and / or eyes.
For Graves to also be a positive we do need over range TSH Thyroid Receptor but I'm not sure as we seem to have only one reading- a measure of under 1.50 which I think likely to be the cut off number for a diagnosis - so what was your blood test result - alternatively if this your blood test result - what as the range / cut off number ?
Graves is a poorly understood and badly treated Auto Immune Disease and generally only diagnosed when the immune system turns and starts attacking the thyroid and or eyes and said to be life threatening if not medicated as the symptoms tend to build and build as the T3 and T4 rise higher and higher or become inert and grow wider apart - and the treatment is with an Anti Thyroid drug - such as Carbimazole or Propylthiouracil - ( PTU ) :
It is not uncommon for more than one set of antibodies to be found positive when the thyroid comes under attack from the immune system and if Graves is found positive - treatment for Graves takes precedence :
All the AT drug does is ' buy the patient time ' while we wait for the immune system to calm down again and hopefully the thyroid reset itself without the need for any drugs.
Both Graves and Hashimoto's are AI disease and as such, can wax and wane throughout one's life - there's likely a genetic pre-disposition to both - and speaking as someone with Graves - stress and anxiety seem common bed fellows.
Hashimoto's produces erratic swings in thyroid symptoms and blood test readings as the immune system systematically tries to destroy the thyroid gland and longer term the thyroid becomes disabled and one becomes hypothyroid and needing to be prescribed some form of thyroid hormone replacement.
Can you please share with forum members your blood test results and ranges at diagnosis ?
Most recent research regarding treatment for Graves :-
Your wishes should be respected and I'm not aware the NHS can refuse to treat you - but the endo may suggest your primary care doctor take over the monitoring and prescribing.
I tend to think you are dealing with Hashimoto's rather than Graves :
The most rounded of all I researched on Graves is that of Elaine Moore - books and website -
Thanks everyone for the quick replies,I'm slow to respond as I'm trying to collate some of the information.
The result for TSH Receptor AB is <1.5 IU/L and I also have a letter saying TPO positive and TRAB negative.
So it's looking like hashimotos which I'll get the endo to confirm on Friday.
In my last email to my endo, I suggested block and replace as my gp had suggested it, but he replied, "that's not the recommended treatment for your condition", I will be reminding him that neither is RAI or surgery.
I have had a full thyroid panel, including T3, every 6-12 weeks since diagnosed. The only trouble is the gp surgery won't take my blood without the endo putting it in the system, and although they ask me for bloods every 6 weeks, they don't put it in the system until 12 weeks dometimes, leaving me to keep booking appointments which either get cancelled or I turn up, and they don't take my blood.I suspect it has something to do with who pays for the test?
Then they can take 2 weeks to analyse and send out the results/ recommendations by which time, ive altered my dose myself. I'll talk to him about this too as its not working for me.
I've done a private test for vitamin D, in which the levels came back good, but I feel the benefit when I take it so I'm taking 3000 iu with vit K About 3 times a week.
I get vitamin B12 injections 8 weekly from gp and I top up weekly myself.
My ferritin was very low at diagnosis, 6 ug/L, I've managed to bring that up to around 50 ug/L, but the nhs aren't interested once you're over the minimum level, so I'm supplementing cautiously as I don't want to go over the maximum levels.
I also supplement with folic acid 400mg as once I started treatment with b12, levels of folic acid and ferritin tanked.
I was tested for celiac many years ago, but no-one told me I should eat gluten before being tested, so test came back negative, and I don't think they'll test again.
The best supplement I've found for improving my energy levels and allowing me to climb not only the stairs but also to tentatively go hillwalking again is acetyl L carnitine.
There is no immediate treatment for Hashimoto's and until such time as your thyroid starts to fail, and not produce enough thyroid hormones on a daily basis to allow you to function and with you then experiencing symptoms of hypothyroidism.
Obviously taking the Carbimazole offsets these symptoms - and why you then quickly experienced the hypo type symptoms - rather than letting your body readjust to your thyroid hormone levels naturally.
In order to support thyroid function whether with or without a thyroid health issue -
we do need to maintain good strong levels of the core strength vitamins and minerals -
I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 - 500++ ) and vitamin D at around 125.
Ask the specialist to organise blood test form in advance & for them to write to GP about it. I obtain my own forms either at appoint or posted to me & arrange blood test nearer time. The practice has never refused although now I almost always attend hospital because it takes an expert to get any blood from me 🙄
Yes, it does look like Hashimoto’s.
If a hyper rise occurs propranolol is often offered to help manage transient symptoms during that phase. This medication needs to be reduced slowly when stopping though.
This is quite shocking really, there no evidence you have graves continuous hyper, yet they have given you carbimazole, not monitored you consistently then recommended irreversible treatments….
As for block & replaced not being recommended, - B&R is exactly used for unexpected fluctuating level which are hard to control. I’m starting to believe drs aren’t familiar enough with concept so say it’s not recommended - without a real reason.
As it appears your elevated levels will be transient gradually you’ll likely become under active & require replacement.
Don’t be surprised if dr doesn’t appear interested in underlying cause, they often look at TSH & will conclude if it low you must be hyper & treated as such.
TSH is very unreliable & focus should always be on FT4 & FT3.
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How long do you give Carbimazole before deciding on radioactive iodine?
On 40mg of carbimazole and also 120mg of propranolol for graves disease.
Graves disease and a multi-nodular goitre: On low dose carbimazole, but now GP only testing for TSH annually?
carbimazole and copd
Health update, anyone been through similar? 
