hi. Just received these private results. I know I have a goitre and am on carbimazole 5mg x3 a week. Been referred to an endocrinologist. Does it mean that I have to have my thyroid removed if carbimazole has stopped working. I feel exhausted and I have pressure behind my eyes. Thank you.
antibodies : hi. Just received these private... - Thyroid UK
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Idalmis
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Why do you say your carbi has 'stopped working'? Your Frees are very low now. I would say you're now hypo. How much lower do you want them to go?
I was on carbimazole 3 a week but my TSH went over 5. Gp said to stop taking it for 8 weeks and retest . Was really poorly on week 8 so said to go back 3 a week. I keep going up and down with exhaustion and body aches plus pressure behind my eyes. Been referred to an endocrinologist but don’t know how long I’ll have to wait. I know I have a goitre with nodules and been on carmimaxole since 2017.
Did you ever have your Graves' antibodies tested: TSI or TRAB?
my TSH went over 5. Gp said to stop taking it for 8 weeks and retest . Was really poorly on week 8 so said to go back 3 a week.
There could have been several reasons why you felt poorly on week 8. Did you have labs done before going back on Carbi?
But, you still haven't explained what you mean by 'carbi has stopped working'. In what way has it stopped working? I would say it's working very well, because your Frees are very low! Do you know what carbi does?
Yes I was tested in 2017 and put on carbimazole with a diagnosis of sub clinical hyperthyroidism and T3 thyrotoxicosis. What I mean by stopping working is my TSH went up to to 9 so endo reduced the dosage from - a day to 3 a week.
He should have stopped it altogether with a TSH that high - you were very hypo! So, it didn't stop working at all. It did what it was supposed to do: stop production of thyroid hormone by the thyroid, so that the frees drop in level and the TSH rises. Now, in my opinion - and I'll admit I'm not expert - you should stop the carbi and see what happens. Because having low Frees is as bad for you health as having them high.
So, what were your levels in 2017?
I did stop taking them for 8 weeks but became very ill
But, the question is: why did you become ill? Was it because your levels went up very high after stopping it? Or was it because you became hypo due to over-treatment with carbi?
And what were your levels in 2017? Subclinical hyper is very vague and not very convincing. And, as for thyrotoxicosis... one man's thyrotoxicosis is another man's slightly over-range. Doctors do tend to exaggerate at times.
Also, if you did have thyrotoxicosis, your hyper would not have been subclinical, it would have been overt.
My levels in 2017:
TSH 0.18
T4 13.4
T3 5.7
Results in December 2023 on 15mg carbimazole a week.
TSH 5.07
Free T3 4
T4 11.7
Then I stopped carbimazole for 8 weeks
Results March 4th
TSH 0.22
T4 13
I don’t have t3
Started back on 3 carbimazole a week.
Anyway thanks for your help. Will be tested again in 2 weeks time
TSH 0.18
T4 13.4
T3 5.7
That TSH is not low enough to be hyper. Can't comment on the Frees because you haven't given the ranges but your FT4 looks like it could be low. Thyroxisis is a very, very high FT3. Whatever the range, your T3 does not look that high.
TSH 5.07
Free T3 4
T4 11.7
You are now hypo according to that TSH. But once again, without the ranges it's impossible to interpret the Frees. But, with a TSH that high, they're bound to be low.
TSH 0.22
T4 13
A TSH of 0.22 is not hyper. And your FT4 looks as if it could be low.
And what about antibodies?
Seriously, I think you've been misdiagnosed.
the T4 range is 11.5 to 22.7. Mine is 13 so on the low side I guess. It has fluctuated between 10.6 to 17 in the last 2 years. T3 range range is 3.1-6.8.
I only have antibodies (Anti-TPO) range 34.0 . Mine is 43.4
That is the only thing which is wrong.
So, your FT4 is only 13.39% through the range. Your FT3 is not much better at 24.32%. You are hypo. Not surprising if you feel ill. Euthyroid would be around 50% through the range. And, if the only antibodies that are high, then you have Hashi's. You have Hashi's/hypo. You should not be taking carbi.
PurpleNailsAdministrator
Your history is complicated because your hyper was subclinical, there has been times when the TSH was low but your FT4 & FT3 have not been very over range.
Many would not take carbimazole until FT4 & FT3 are consistently & continuously over range, you have been on very low doses of carbimazole for a long time, & you’d expect this to keep FT4 & FT3 reduced. Lowering already in range levels to borderline low. There’s no indication carbimazole is not working. It does show your TSH is not reliable. You’d expect TSH to rise with low FT4 & FT3 yours doesn’t respond.
Positive TPO confirms you do have something autoimmune affecting your thyroid. Elevated TPO is found with both Graves, & it’s also found in autoimmune thyroiditis (Hashimoto’s). With hashis you’d expect to see hyper fluctuations early on then long term under active levels.
To confirm if you do have Graves you need TRab or TSI tested.
You’ve also has an ultrasound scan showing nodules & were told they were not active, but I think it’s possible they do function, but autoimmune damage to your thyroid has reduced the level that they produce. An ultrasound can’t confirm function you’d need an uptake test to verify this accurately.
Many doctors assume TED only occurs with Graves but that’s not the case either, I have a hyper nodule & TED without positive autoimmune.
Selenium can help with moderate TED, have you tried adding this supplement?
No I haven’t but I will. I’ll do anything to feel better. Last time I saw an endocrinologist he said I will have to have RAI or total removal of the thyroid.
I was told in my case hyper nodules don’t resolve & I would need treatment & doctors began arranging RAI but I told them wasn’t convenient time & 5 years later I remain on carbimazole. At my last appointment the doctor said opinions have changed regarding carbimazole & they are more comfortable with long term use. Of course this will vary depending on the dr knowledge & hospital policy.
You are on such a low carbimazole dose proceeding to an invasive & irreversible treatment seems wrong approach to me. Something to discuss with doctor but ultimately you decide how you are treated.
Taking a selenium supplement is said the help protect eye. 200mcg for up to 6 months. Then reduce to 100mcg. Can be brought over the counter. Bear in mind additional selenium rich foods (eg Brazil nuts) could potentially take you to toxic levels.
Thank you for your reply. Gp said to up carbimazole to 1 day si I guess I will
Go back to doctor. Your FT4 & FT3 are already low. Carbimazole works by altering how iodine is used in production of new hormone. So it only affect is on FT4 & FT3. Lowering FT4 & FT3 usually results in the TSH rise, but the TSH is very unreliable, focus on FT4 & FT3.
The TSH doesn’t not need to be higher. Most healthy individuals have TSH of around 1.
I saw the gp last week and yesterday. I can’t keep going back to her. She’s referring me as urgent.
Could you clarify what you mean please? Do I go back to 5mg carbimazole daily or stay in 3.?
Has the doctor explained what the purpose of increasing carbimazole is for?
Was it increased based on above results?
I’d would be asking why doctors are aiming to further lower - low FT4 & FT3 levels.
found the letter from ultrasound. The ultrasound scan confirms multinodular goitre but there’s some increased in internal vascularity of some nodules. I don’t understand any of it
Toxic multi nodular goitre is hyper condition. Can cause hyper without autoimmune - although you do have positive antibodies.
Nodules can occur with or without autoimmune. (Both hyper & hypo)
Increased vascularity is common feature it can mean that the area is working harder than normal.
Sorry but multi modular goitre can also be a hypo symptom. I had one which disappeared when I took levothyroxine despite a Professor of Endocrinology telling me it wouldn’t.
Edited to clarify - Nodules can occur with or without autoimmune. (Both hyper & hypo)
Can I just add :
The Anti Thyroid drug Carbimazole simply semi-blocks your new own daily thyroid hormone production to try and offset the worst of the symptoms being tolerated.
The dose of the AT drug can be adjusted up or down as symptoms dictate and as the cause is one of a multi modular goitre your own thyroid will be liable to erratic hormone production so getting the dose of the AT drug right - a constant challenge.
High and over the range T3 and T4 readings will generally cause some symptoms considered hyperthyroid by some - whilst low and under range T3 and T4 readings will generally cause some symptoms considered by some as hypothyroid.
Have you been referred to a specialist ophthalmologist / endocrinologist team regarding the pressure behind your eyes ?
The range is just that - and the accepted so called ' normal parameters ' for someones results ' to fall within ' who has a healthy thyroid - and quite where in these ranges your T3 and T4 need to be for you to metabolise and feel well is unique to you and where your optimal is.
When metabolising isn't sitting quite right for you, either running to fast as in hyper, or running too slow as in hypothyroidism the body struggles to extract key nutrients through food and this alone can compromised your health further than necessary -
Please arrange for your core strength vitamins and minerals to be run and we can advise where these need to be to help support you through this phase of ill health - as just being in a NHS range somewhere is not good health as NHS ranges can be too wide to even be sensible.
If your breathing is not constricted and you can eat without the feeling of any choking there is no need to loose your thyroid to either a thyroidectomy or RAI thyroid ablation.
There is now some research regarding long term use of AT drug -
I was very well on the Carbimazole but told it was too dangerous to stay on long term and treated with RAI thyroid ablation for Graves Disease the following year - 2005 - and have been more ill since and deeply regret this treatment but not offered any other options.
If you do have to consider the next step - I'd think a thyroidectomy the better option - though I'm afraid living without a thyroid is not the walk in the park some in mainstream medical would have you believe.
SlowDragonAdministrator
Would expect you have low vitamin levels as you are now in effect hypothyroid
What vitamin supplements are you taking
When were vitamin D, folate, ferritin and B12 last tested
Try reducing Carbimazole further?
My vitamins were checked in December
Iron range 5.8-34.5. 22.8
Ferritin range 13-150. 114
Folate range 3.89-19.45. 5.41
Vitamin B12 range 37.9-150. 94
Vitamin d 83
I follow a vit d protocol with magnesium vit k2 vit a and boron, vitamin c and I’ve just started taking bio active B12 in drops
what I don’t understand is why I feel better after starting carbimazole again (15mg) a week since March 4th?
Folate too low
Look at replacing separate B12 with a vitamin B complex
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
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
what I don’t understand is why I feel better after starting carbimazole again (15mg) a week since March 4th?
You may need to block and replace
Block with Carbimazole
Replace with Levothyroxine
Ask endo
Ok thank you. Will do. I have a private appointment on April 5th
Carbimazole works quickly in reducing thyroid output but the effects doesn’t fully manifest in blood test results levels for about 6 weeks. Symptoms can sometimes taken longer to settle. This is because it takes time to recover. Some of us are also more sensitive to changing levels. I seem to feel symptoms when levels are adjusting but ok once they are steady even if they are on the lower end or the higher end of the range. So by the time you restarted carbimazole it’s possible you would had been feeling the effects of not taking the antithyroid.
If carbimazole was improving symptoms you’d start to see improvement after a few weeks later and further improvements in the following weeks. Symptoms can often linger behind. It like hair loss when iron is poor, it might not become apparent until a few months later.
Thank you for your explanations. I think you’re right.
Good morning. I am writing a list of symptoms prior to seeing the endocrinologist. Is there a tickbox list I could use instead? Thank you.
This link should take you to hypothyroid & hyperthyroidism symptom tick boxes
Look through both, there can be an overlap.
Thank you
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