(Sorry about highjacking another thread - couldn't figure out at first how to post a new one...)
Hi - I've only just joined, but I'm interested to see that you have been taking Carbimazole long term. I've now been taking it for over 4 years; had radio iodine last May, which didn't work at all, so after a while back on Carbimazole. They said they'd consider repeating the radio iodine after 6 months, but I don't think they have time for anything like that at the moment.
What dose are you taking? They constantly want to reduce my dose although I'm still not feeling fit, and my blood results are still high. Wondering whether 30mg is considered too high for long term. (No side effects, I think!) I had to persuade them to leave me on 30mg, because I want to get back to work.
PurpleNails profile imagePurpleNails in reply to InaJB
38 minutes ago
welcome to forum inaJB
30mg carbimazole is a higher level dose. Usually once the initial level of carbimazole get levels down a lower or maintenance dose is all that required.
Do you have results? (TSH FT4 & FT3)
It might be best if you do your own post. I recommend you fill your history on your profile & post on main thyroid forum.
InaJB in reply to PurpleNails
22 minutes ago
Thanks. The nurse at the hospital looks at my results and reads from a chart that my dose should be reduced - but they never ask whether I actually feel ok on that dose. I am beginning to suspect that there is something else going on in my body, that I am still feeling so unwell (mostly just weak and tired). My latest results were TSH <0.01, FT3 6.2, FT4 14.3
Report
PurpleNails profile imagePurpleNails in reply to InaJB
15 minutes ago
Do you have ranges? They vary between labs.
New post please as - original poster gets notified by all replies & I suspect member can offer you a lot of specific advice.
Sorry about that - won't do again!
OK, my letter gives me two ranges - one from 09/2020, and the other one labelled previous range. No idea what that means.
So no, my results aren't very high at the moment, but they had only just come down after the January bloodtest results, which were higher, and led to me being allowed to increase the Carbimazole from 15 to 30 mg. After 4 weeks or so I noticed a slight improvement, and promptly I was told to reduce it again. I don't understand their thinking behind it: as soon as I feel a little better, I am told to go back to where I felt absolutely miserable, because their chart tells them that I should be OK now.
Sorry, this long rigmarole isn't helping anybody. But I'm getting to the point where my mental health is severely affected. I'm definitely not fit enough to get back to work full time, although I had been hoping to start a phased return to work soon.
Written by
InaJB
To view profiles and participate in discussions please or .
Can you please give us a bit more information and fill in your bio:
When were you first diagnosed Graves - do you have the initial blood tests at diagnosis and which antibodies were found positive and over range at that time ?
When was the first dose of RAI ?
I read RAI can induce further antibodies being released into the body and causing further mayhem.
RAI is a slow burn and whatever the dose I'm sure it's will do some damage :
So is the plan to try and manage your symptoms on the Carbimazole until a second dose of RAI can be scheduled - has a thyroidectomy been discussed.
Graves is a stress and anxiety driven auto immune disease and something triggered your immune system to turn and attack your body rather then of defend it -
quite why this happened is the 64 million $ question and only you may know the answer :
There can be a genetic predisposition with a family member, maybe a generation away from you with a thyroid health issue, or Graves can be triggered by a sudden shock to the system, like being in a car accident or the news of the unexpected death of a loved one.
There is no cure for Graves but it is considered life threatening if not medicated.
All the NHS can do is buy you time while you wait for your immune system response to calm down, and this done by prescribing an Anti Thyroid drug like Carbimazole.
Ideally the AT drug is prescribed at a high enough dose to block any new thyroid hormone production and slowly your over range T3 and T4 will slowly fall back down into range again and your symptoms relieved.
As your levels fall back down into range the AT drug is reduced as you don't want your T3 and T4 to fall too far through the ranges as then you can experience the equally disabling symptoms of hypothyroidism.
However if your immune system is still very upset and your Graves antibodies are or start taking off again, the AT drug will need to be further increased to block more of your T3 and T4 thyroid hormone production.
The AT drug should be at a level to over ride the extremes and volatility of your immune system response but it is something of a moving target and takes great skill , experience and frequent appointments to read and understand as the blood tests tend to run behind the symptoms by a good few week.
It can feel a bit like being on a roller coaster of symptoms and all the AT drug does it act as a blocker and tries to offset the worst of the symptoms being experienced.
When metabolism is affected and either running too fast or too slow it's quite common for your core strength vitamins and minerals to nosedive through the ranges and compound your health further and would suggest that you ask for a ferritin, folate, B12 and vitamin D reading and we need these maintained at optimal to help carry us through this debilitating phase of Graves disease.
I found the most well rounded of all the websites I researched is that of the Elaine Moore Graves Disease Foundation - elaine-moore.com
Don’t worry about long post, often they need to be to get the information across.
For each test run the range can be altered so what we need to do is look at where you are in the range for each test.
In theory the % through range should be same in each test, it not a case of setting a new “goal post” and the result would be ok in 1 range & not in next.
TSH <0.01 the TSH is a pituitary hormone, which signals thyroid to increase or decrease production. So it should be a reflection of FT4 & FT3. When these are high the TSH is low & vice versa. But the TSH isn’t a reliable measure & your carbimazole should be adjusted by FT4 & FT3.
FT3 6.2, (2.4 - 6.0) = 105.56% (1st range)
FT3 6.2 (4 - 7) = 73.33% (2nd range)
FT4 14.3 (8 - 19.1) = 56.76% (1st range)
FT4 14.3 (10 - 25) = 28.67% (2nd range)
So depending on which range applies to current results your results could be in range or just above range for FT3.
1st issue. You have disproportionately high FT3. This is not the norm. Usually FT4 is higher than FT3 and the balance should be much closer. Using carbimazole lowers production of both hormones, a certain amount of FT4 is converted to FT3, but when they are out of balance as yours are it means your FT4 is too low & will drop below range before FT3 is in range. So titration (adjusting & lowering carbimazole) won’t resolve this.
The alternative option is a higher dose of carbimazole to totally block natural hormone and a replacement of synthetic levo (L24).
How long have you been on carbimazole?
When was your RAI treatment? It’s full affect is often not manifested for many months even years.
It can all be very complicated, if I’ve not explained clearly let me know I’ll try again.
Next steps:
confirm positive TRab or TSI antibodies previously been tested. (Usually for diagnosis)
Test folate, ferritin, B12 & Vitamin D - often low with thyroid disfunction. (Private testing options are available if Dr/lab won’t test every thing)
Gluten issue common with thyroid issues, consider testing for allergy. Intolerance won’t be revealed in test, trialing strictly gluten free may help.
The Graves forum is very quiet, you may want to also post on main thyroid forum.
I thought I'd filled in my history somewhere - but maybe not visible to everybody?
FIrst diagnosed late in 2018. Symptoms started after a bout of flu in summer; GP thought it was "something postviral", so they didn't diagnose it straight away. Still a couple of months after diagnosis before they started me on Carbimazole. I was on as much 60mg per day at one point; by May 2022 back on 30mg, and at that point I received radio iodine treatment. Didn't seem to have any effect. After a few weeks they got me back on Carbimazole (15mg at first, which was increased to 30mg in January this year). As I said above, as soon as that reduced my blood values by a bit, and I was getting a bit more hopeful of returning to work, I was told to go back to 15mg. I told them I needed to get back to work, and at 15mg I wouldn't be able to. They've now promised me a medical review, which should take place in a coupled of weeks' time, but I don't have a date for that yet.
I know TRab and TSI antibodies were tested and positive, but I don't have data for that. It's a long time ago... It's difficult enough to get any kind of appointment at the moment - a request for additional tests won't go down well! But I've already learned a lot from your comments. Why does the NHS never tell you any of that? I know I have problems with wheat, so try to stay away from that (which is difficult when you are feeling depressed and eating for comfort ). I also take vit D supplements.
I think I've been made to think of Graves as more of a linear development than it really is. For now, I'll read all those recommended papers and websites, and hope that I'll actually get another appointment soon . Thank you very much for all your help!
I see some user info, it can be helpful to add a history to bio but don’t worry too much about it, it can take ages to get to grip with site.
It really common for symptoms to be put down to other things, stress - existing conditions, menopause are common or they simply just not taken seriously - happens frequently.
60mg is daily max dose. Would be interesting to see what your levels were at the time & the antibodies results, but much more important to focus on current levels.
It can be beneficial to take in a split dose, now your on 30mg, so you take all at once? As ideally would be better to take 3x 10mg.
Did you stop carbimazole prior to treatment? Usually it’s at least a week or two.
Doctors can be very rushed during appointments & prefer you simply comply with their suggested plan of treatment. Having to explain what’s happening the results and discuss treatment option might lead to you challenging them & they prefer to avoid that.
The bad news is when it comes to gluten it’s a “all or nothing” scenario. Any trace will be causing a issue.
Most vitamin D supplements aren’t sufficient to raise levels of you are deficient.
Monitor my health offer a vitamin D finger prick test.
There’s many testing options offering different groups of tests, most can be by finger prick sample (not all) or you can arrange venous draw at home or clinic for additional fee.
For a complete picture which is often quickest way to make progress there is Medichecks advanced thyroid, which include thyroid funtion including FT3, TPO & TG antibodies. Key nutrients folate, ferritin, B12 & vitamin D. Also CRP an inflammation marker.
If you ask doctor to test they may say it’s not necessary or just supplement if concerned but it is better to test so you can supplement at right level.
Doctors dismiss information from forums & presume its incorrect so it’s better to say you have researched what’s recommended & this is suggested by thyroid uk charity.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Carbimazole, Grapefruit Drug Interactions and Medicinal Mushrooms 
Nearly new diagnosis-swelling, tests etc
