Why is my hair falling out? Was diagnosed with Graves in November, meds have now been reduced to 5mg Carbimazole. Feeling ok otherwise
Tsh is now 1.41
T4 12.1
T3 3.7
Have not seen endocrinologist yet only a phone call saying I will need
RAI drink or maybe op
Any advice appreciated
You have had a period of hyperthyroidism and now your thyroid hormone levels are rather low so you are hypothyroid. After hyperthyroidism TSH can take a long time to recover so you must go by the fT3 and fT4 levels which are low.
With these hormone levels there is no question of needing RAI or a thyroidectomy. I'm shocked that they are saying you need this at the moment.
You absolutely need copies of all your blood test results. There's no point speculating without the results. It is still not clear whether you have Graves'. Doctors get these things wrong, you need copies of the results. You can request them by telephoning your surgery.
I have now got a copy of all my blood tests. I just posted the recent levels.
Here are my results
Thyrotropin Receptor Antibody 14.0
Positive TSH receptor antibody
TSH range 0.35-5.0
<0.01 nov 2019
<0.01 Dec 2019
<0.01 Jan 2020
1.91 Feb 2020
1.41 March 2020
FreeT4 range 9.0-21.0
32.0 Nov 2019
20.3 Dec 2019
12.1 Jan 2020
FreeT3 range 3.0-6.0
>46.1 Nov 2019
9.1 Dec 2019
3.7 Jan 2019
Does this explain my Graves?
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(0)
Very helpful results. The high TRAb (14.0) indicates Graves' and you were very hyperthyroid in Nov 2019. Your latest results suggest you are hypothyroid as a consequence of too little TSH.
After a period of hyperthyroidism your 'axis' can become down-regulated. This means your pituitary does not produce enough TSH. Sometimes this self corrects, sometimes it doesn't.
I'm a patient not a doctor but perhaps they could start by discontinuing your carbimazole.
It's quite exceptional that your hormone levels have come down so rapidly from very high levels. You may be lucky, they may become normal in the near future, or they may jump around.
I would ask for another TRAb test to see if the Graves' antibodies have gone (down to normal levels). You definitely should reject any surgery or RAI at the moment, your Graves' may have finished - it usually takes much longer.
Thanks jimh111, I will have to talk to GP re Carbimazole , but don’t think he has a clue. I have also been feeling tired and sweating more too.
Sweating is usually a sign of hyper but can happen in hypo. I suggest you keep a daily record of your pulse, it might be useful.
You are on a low dose of carbimazole but if your doctor isn't sure I'd say my thyroid hormone levels are rather low now so why don't I discontinue it and see how I go. I will monitor my pulse and if it starts to go up I will resume the carbimazole and contact you. Or something like that. With doctors who have little knowledge on the subject (lots of them) you have to take charge of your care. If he starts to dither ask him to contact an endocrinologist for advice based on your latest results.
If your levels should start to jump around wildly I would press for block and replace - levothyroxine with carbimazole. Stopping carbimazole is the preferred option because 1. the fewer medications the better and 2. most important, you will get more T3 from your thyroid than from levothyroxine.
Hair falls out because of being hyperthyroid & a side effect of anti thyroid medication and when nutrients are deficient such as ferritin.
You do need to confirm you have Graves by way of antibody test. You might have to obtain past results from GP and from your hospital specialist. I phoned my endocrinologist department secretary and asked mine. Be prepared for them to try and get out of providing them in some way but Persist politely.
As per both previous posts
It’s absolutely essential to find out EXACTLY what thyroid antibodies have been tested
healthunlocked.com/thyroidu...
Your results could suggest Hashimoto’s...not Graves’ disease
We see many Hashimoto’s patients misdiagnosed as having Graves
Your thyroid levels are now low
Extremely likely to have low vitamin d, folate, ferritin and B12
Low ferritin causes hair loss
Suggest you get FULL thyroid and vitamin testing
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin (doesn’t include folate)
medichecks.com/products/thy...
Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
Here are my results
Thyrotropin Receptor Antibody 14.0
Positive TSH receptor antibody
TSH range 0.35-5.0
<0.01 nov 2019
<0.01 Dec 2019
<0.01 Jan 2020
1.91 Feb 2020
1.41 March 2020
FreeT4 range 9.0-21.0
32.0 Nov 2019
20.3 Dec 2019
12.1 Jan 2020
FreeT3 range 3.0-6.0
>46.1 Nov 2019
9.1 Dec 2019
3.7 Jan 2019
Does this explain my Graves?
Reply
(0)
Your thyroid Lee have dropped dramatically
How long have you been on 5mcg Carbimazole
How much were you on before that?
Important to test vitamin levels.
Ask GP to test vitamin D, folate, ferritin and B12 ...plus coeliac blood test
We need the ranges with those results, because they vary from lab to lab.
And you need to know exactly how you were diagnosed with Grave's. Were the antibodies tested: TSI or TRAB? With a positive result for one or the other, you do not have Grave's. And if you do not have Grave's, you shouln't be pushed into RAI or a TT. Doctors do indeed get it wrong. We see that here all the time. They don't know the difference between Grave's and Hashi's and often misdiagnose.
So, do check up on those antibodies. It is your legal right to have print-out's of your blood test results, giving both results and ranges. And, if they refuse to give them to you, there are step you can take to force them. 
Here are my results
Thyrotropin Receptor Antibody 14.0
Positive TSH receptor antibody
TSH range 0.35-5.0
<0.01 nov 2019
<0.01 Dec 2019
<0.01 Jan 2020
1.91 Feb 2020
1.41 March 2020
FreeT4 range 9.0-21.0
32.0 Nov 2019
20.3 Dec 2019
12.1 Jan 2020
FreeT3 range 3.0-6.0
>46.1 Nov 2019
9.1 Dec 2019
3.7 Jan 2019
Does this explain my Graves?
Yes, it does. The positive Thyrotropin Receptor Antibody - TRAB - say that you do have Grave's.
But, you seem to be responding very well to the anti-thyroid medication - in fact, you are now hypo, which is probably why your hair is falling out - so I don't see why you should have your thyroid destroyed or removed. But, some doctors want to do that because it makes life easier for them! But rarely the patient.
Thanks greygoose, do you think I should now be taken off Carbimazole and given thyroxine? I also am feeling tired and sweats are back too.
Here there again Boaby
RAI is not the answer to your health issues at this moment and should not be considered, or talked about, and have you now the medical evidence of a positive TSI / TR ab antibody ?
I can only repeat what I 've written to you before on both your previous posts.
This has to be your first question and you are now with low levels of thyroid hormone - does your endo suggest Block and Replace whereby you also take some T4 Levothyroxine to stop you falling further into hypothyroidism ?
Graves Disease
Graves disease 
Graves' disease ???
Graves’ disease 
Graves disease 
