Hi there, Last week I was Diagnosed with Graves,
My results are below. Normal range
TSH <0.005 mUI/ml ( 0,35- 5,50)
T4 2,31 ng/dl , ( 0,78-1,80)
T3 6,25 pg /ml , ( 2,0 -4,4)
TSI 7,48 UI/L , ( <1,75)
I was recommended to go for RAI by 2 endocrinologists , I told them I wasn’t sure about this kind of treatment, so at the end I was put on Carbimazol 5 mg a day ….
Now I’m not sure if I made a right choice or not.
Could anyone please help me with reading my results ? Thanks
Just 5 milligrams once a day?
It is common to dose twice a day at the start of carbimazole treatment. (If you only have one dose a day, by the time you reach your next dose, your thyroid might have "escaped" from the anti-thyroid action of carbimazole. It doesn't last long enough in your blood/body.) That is also the very lowest dose they can prescribe.
At least by getting carbimazole, you have time to consider your next steps. Some people stay on it for years.
There is a section in my Vade Mecum that you might find worth reading.
helvella - Vade Mecum for Thyroid
The term vade mecum means:
1. A referential book such as a handbook or manual.
2. A useful object, constantly carried on one’s person.
Please don't get put off by the number of pages!
In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.
Not everything is in this one document - my major medicines document is still separate!
From Dropbox:
dropbox.com/s/vp5ct1cwc03bl...
From Google Drive:
drive.google.com/file/d/1ZW...
Thanks for your reply, Yeah, only once a day for some reason, the doc told me that my numbers were not that high, but I see that my TSH a very low. 🤔
Don't worry about the low TSH. It is the high T3 that has the impact - and you have high T4.
Even with low numbers, I think it folly to single-dose to start with.
The statement below is from the Summary of Product Characteristics for one make of carbimazole in the UK:
Adults
The initial dose is in the range 20 mg to 60 mg, taken as two to three divided doses. The dose should be titrated against thyroid function until the patient is euthyroid in order to reduce the risk of over-treatment and resultant hypothyroidism.
Subsequent therapy may then be administered in one of two ways.
Maintenance regimen: Final dosage is usually in the range 5 mg to 15 mg per day, which may be taken as a single daily dose. Therapy should be continued for at least six months and up to 18 months. Serial thyroid function monitoring is recommended, together with appropriate dosage modification in order to maintain a euthyroid state.
medicines.org.uk/emc/produc...
Your treatment is not within that advice.
Welcome to forum
Did endocrinologist explain that with carbimazole treatment to lower thyroid levels and there is a fair possibility the over activity can be controlled and will go into remission.
In the UK doctors try to limit it to 18 months but really If you are well & respond well to medication there’s no reason you can on it stay on longer, there’s lots a research to say longer treatment gives good outcomes.
Did drs explain why they are recommend treatment so early on?
Were you stated on higher doses of carbimazole? As 5mg is really low dose & will only lower levels a fraction.
Are these test results total levels? as what you need to know are the “Free” T4 thyroxine & T3 triiodothyronine this is what available for body to use & more useful measurement. T4 converts to T3.
T4 2.31 pmol/l (Range 0.78 - 1.8) 150.00%
T3: 6.25 pmol/l (Range 2 - 4.4) 177.08%
Typically with Graves levels can reach 3x normal. Which is likely why dr is Saying “not that high”. Not helpful comment.
I was started on 20mg (10 x 2 daily) my FT4 was fractionally over range & FT3 not quite double. (Nodule not Graves) In 8 weeks I was scrapping hypothyroid levels. & dose halved. So 5mg far too low. I think 3x 5mg would be better.
Unless they want to see how you respond & intend to test very soon. Or expecting it to drop naturally and don’t want to risk driving it down. In which case RAI wouldn’t have been advised.
Are these the only results you have had?
Has other antibodies been tested? TPO, TG
TSH is suppressed. It’s a pituitary hormone which signals thyroid to produce new hormone. You levels are high so drops this is usually with over active thyroid.
Were you also offered surgery as an option?
Please add country to profile so we can make sure the advice is applicable.
Hello PurpleNails ,Thank you.
Yes , the doc told me that the treatment will be around 12-18 months, and it could go into remission,
I also talk to her about the surgery it’s then she said the I might have Graves and that I need antibody tests which showed ( TSI - 7.48 UI/l ( <1.75 norm)
TPO and Tiroglobuline are fine.
PS, I live in Spain
I see from your reply to another you have a toxic nodule. I have a 5cm nodule (no antibodies) and treatment is often offered early on as hyper nodules are not expected to remit. It is expected to go on over producing. That might be causing sub clinical ie causing a low TSH and higher FT4 & FT3 but not clinically out if range.
Having positive TSI shows autoimmune is also involved and that component can into remission but there no predicting by what extent.
I’ve taken carbimazole for 3 years & intend to continue. I’m against irreversible treatment unless absolutely necessary.
I might feel differently if not under good control on low dose or If it was before having a family. So you have to weigh up what’s best for you.
Yeah there’s a nodule, and antibodies,
I found it strange too to be honest, I was reading about Carbimazol earlier and indeed it did say to start with the higher doses, now what do I do ?
Hello Romeo and welcome to the forum :
You made the right decision :
Please read the following 2 links :
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
In normal circumstances the anti thyroid drug is prescribed for a period of around 15-18 months - why is there this immediacy ?
If the Carbimazole doesn't suit you there is an alternative PTU - Propylthiouracil :
What symptoms were you suffering and which ultimately decided you to go to the doctor ?
Hello Pennyannie. Thank you .
It’s a long story,
I had some tingling sensations in my hands and feet for a while , last September I went to see Neurologist, she run some tests, they were all fine, except for my TSH level was then 0, 01 mcUI/ml ,
So she sent me to see endocrinologist,
When I had my next blood test in November TSH was 0,03 mcUI/ml,
All others were normal then- FT4 and FT3 , but TSI was 5.24 UI/l
Then later I had test with Iodine isotope, it showed hot nodule ( 22%) on the left side ,
And then the latest blood results 16.03.22. showed an increase in FT3 and FT4 ( 6,25 and 2,31)
And TSI is 7.48 UI/l now .
I have a few symptoms now - tiredness, high pulse, my emotions are all over the place.
Ok - your emotions will be all over the place - so please " save " those 2 links I've sent you as you may not even be in the right frame of mind to read and understand everything right now.
Ok. so we are looking at a nodule and high Thyroid Stimulating ( TSI ) antibodies.
With Graves there are also TRab antibodies which are Thyroid Receptor Blocking antibodies.
Over this first phase of the disease you can experience both stimulating and blocking antibodies as they compete for control of your thyroid and there is also a middle ground when they tend to offset each other and your symptoms minimal.
Graves can burn itself out, given time, and it's very much a question of how inconvenient it is for you to live with it in the meantime.
Graves is said to stress and anxiety driven auto immune disease and your thyroid is not the cause of your illness but the victim of an attack by your immune system and quite why your immune system has been triggered to attack your body, is the question.
With Graves there's generally a generic predisposition and maybe there is someone a generation away from you with an thyroid health condition.
The most all encompassing website on all things Graves is that of Elaine Moore :
Elaine has the disease and went through RAI and finding no help with her continued ill heath started researching this poorly understood and badly treated AI disease at the turn of the century.
I too have Graves and have had RAI and deeply regret this treatment option, and I was very well on the AT drug, but told at my very first hospital appointment I was to have this toxic substance the following year. I knew nothing and simply trusted the doctors knew what was best for me back in 2004.
You might like to read around the alternative and more holistic treatment options used around the World and also about what you can do to learn to relax, understand your stresses and be selfish with your time and do what gives you some pleasure.
Ok, thank you for all this information, appreciate it .
I had (have ?) Graves, I’ve been in remission since 2012/13. All I would say is to try to hang on to your thyroid gland for as long as you can.
Also 5mg a day is a very low dose. I was started on 20mg a day and after a month it had made very little difference. I got a letter from my endo telling me to double up to 40mg a day for the next two months until I got to see her for my first hospital appointment, I know we’re all different but 5mg is a very low dose. I really can’t see it making much difference.
Some people are ok without their thyroid glands but many regret killing theirs off and when it’s gone, it’s gone. Once you no longer have a thyroid you are discharged inti the care of your GP who may or may not be experienced in looking after patients without a thyroid gland.
RAI was mentioned to me every single time I saw a consultant for the whole year I was treated and I kept telling them I didn’t want that option. To be honest I would on,y have considered it if I had bern unable to take carbimazole or PTU or if I had had thyroid cancer and needed to be rid of the gland.
On the other hand I didn’t have and don’t know anything about hot nodules. Plus in all the time I was being treated I never ever had my T3 levels tested so I was not impressed that they could even consider killing off my thyroid without knowing every last thing it was possible to know about it.
Hi Fruitandnutcase, Thank you for your reply and support,
Much appreciated,
I’m glad that the treatment worked for you,
Now I have to convince my doctor to change my dosage, not sure how easy that will be, my next blood tests should be in 6 weeks, and then I will see her , not easy to reach them on the phone
I’m new here
I’m new here, my first post
I’m new here so here is a bit about myself.
Update to my post ( I’m new here) Just been to see my GP !
