I was diagnosed with Hyperthyroidism in Nov 2018. It was only when I asked doc for blood pressure check due to dizzy spells that I was taken off carbimazole. My blood pressure was high- been on bp tablets ever since but still go dizzy when I lie down. I had been on carbimazole for 1year 11 months. I didn't know I should have been only on it for 18 months. I also developed thyroid eye disease, which now seems to have run it's course and Graves . Shortly after stopping taking carbimazole I noticed my hair was thinning and it still is. I have lost over half my hair and wondered if anyone could advise me on what I could do. Thyroid levels are now stable.My appointment with Endocrinologist is in December. Keeps getting postphoned. Thank you.
Hair Loss Due to Hyper thyroidism: I was... - Thyroid UK
Hair Loss Due to Hyper thyroidism
Was Graves’ disease actually confirmed by testing TSI or Trab antibodies
Many people stay on Carbimazole for years
Bloods should be retested 6-8 weeks after stopping or changing Carbimazole dose
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
plus testing both TPO and TG thyroid antibodies for autoimmune thyroid disease also called Hashimoto’s
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or with Graves
Low vitamin levels common as we get older too
Low iron/ferritin often linked to hairloss
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Thank you very much for your reply. As far as I am aware no test was done for Graves. I have had full blood test for thyroid in past but test in October only was done for Serum TSH level- this was 0.6 - this was done at a walk in surgery not own doctors and concerned me. I will ring my doctor tomorrow and ask for a vitamin etc test. The eye doctor did suggest taking immunace which I took regularly for several months - this coincided with a stop in further deterioration of my eye. I do still take them, but do forget at times and not the extra strength which I first bought. I have never been told not to eat before having my blood test. Will not in future.
Hair loss can be due to high or low levels and low nutrients eg low ferritin.
First step get a hold of all your previous blood test results, see what has & hadn’t been tested. & if Graves was confirmed.
You can obtain printouts of your blood test results via practice reception (don’t ask doctor) or arrange online access for GP records of available, which is extremely useful.
Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist just say they are for your records. You are legally entitled to them.
How much carbimazole were you taking?
Usually a higher starting dose is taken eg 40mg and this is reduced eg to 20mg and then lowered as levels allow. 10mg then 5mg daily even 5mg every 2 or 3 days until a tiny dose until you stop. Was this not done? Where you monitored regularly while on carbimazole?
TSH is not reliable measurement dose adjustments should always have been by FT4 & FT3.
Did you see a specialist for your TED? Preservative free eye drops and 200mcg daily of selenium supplements are recommended. Check the label for absorbable forms, selenium l-selenomethionine and yeast bound selenium are best, avoid selenite and selenate.
Is an excellent site for information on TED?
18 months on carbimazole is the aim, doctors recommended either thyroidectomy or radioiodine treatment (definitive treatments ). Remission can take longer for some, Monitoring hyper is expensive and doctors view it easier to treat hypo. hypo levels are safer than the risk of hyper levels but some do struggle to get adequate replacement treatment.
Many stay on carbimazole longer the risk does not increase after 18 months it remains the same. I also was diagnosed hyper in November 18, I still take carbimazole, I started on 20mg currently on 10mg 5mg alternating daily.
Thank you for your reply. I have just started going to get my results from the doctors. I only wish I knew I could get a printed copy 2 years ago. I was down to 10 mg when I was told to stop taking carbimazole - was told to take a 10 mg tablet every other day for 2 weeks and then stop. Yes I saw a specialist for my eye disorder. Still under hospital for this. I noticed my eyes were changing about 5 months after being diagnosed with hyperthyroidism. I aske for blood tests every 3 months. I was given eye drops - this helped ease the gritty feeling in my eyes. I can't have operation on thyroid as swelling is very small- it would be Radioiodine for me if it can't be controlled. Seems ok at mo so that is good. Just struck me I went vegetarian 8 months before I became Hyper. I wonder if that has caused vitamin defeciency?
So the reduction was a little quick, but If the timing is right & the levels do not begin to rise, then it was right for you. Do you still having regular test to monitor?
Many report fluctuating levels worsen TED and is often triggered when thyroid levels drop low / under range.
Immunace does includes selenium at a fairly high dose, which is good for eye issues. Also a low dose of l-cartinine which can lower FT3 but usually in higher doses. Extra iodine is not necessary and can worsen hyper (when taken in excess). Iron should only be taken if deficient, many vegetarian do need supplemental iron.
Most multi are not recommended as they contain low quantities, & the cheapest, least absorbable type of supplements.
I doubt being vegetarian or any nutritional deficiencies caused Graves. It’s being hyper that depletes nutrients. It’s said generics can contribute and it’s often found Graves occurs soon after a traumatic / stressful event.
You won’t have to consider next steps if your levels remain stable but if they do rise again you have 3 options, RAI, surgery or long term medication.
If you have TED, RAI should be taken with caution, you will need a course of steroids to protect eyes which has their own sets of risks.
Why does a thyroid have to be swollen to qualify for surgery? The more swollen the thyroid greater the complication for the surgeon.
Having a thyroid which is hyper active does qualify you for surgery. Medics will always recommend RAI over surgery as It’s very easily administered.
I’m not against any option if it right for the person receiving the treatment. unfortunately doctors do not fully discuss all the options & implications and imply there’s no other way.
Only proceed if you above done your research a comfortable with you decision.
Hello Maxmillian and welcome to the forum :
There are two auto immune diseases that could have caused your hyper health issue, and the only way to tell them apart is to have your antibodies checked so to see which antibodies are positive and the medical evidence.
The antibodies unique to Graves are expressed as either a TSI ( a thyroid stimulating ) or a TR ab ( a thyroid blocking ) antibody.
However Graves Disease can wax and wane throughout one's life so currently nothing may show up if you had the special Graves antibody blood test run now,
Graves Disease is said to be stress and anxiety driven and once triggered you will likely be prone to further attacks throughout your life.
Hashimoto's disease starts with transient " hyper " type phases but Carbimazole isn't prescribe as your T3 and T4 levels drop back down into range by themselves. Longer term with every transient " hyper " phase the thyroid gland becomes further damaged and thyroid hormone replacement is prescribed to maintain and support the disabled gland.
Carbimazole blocks your thyroid hormone production and this in turn can lead to low levels of essential vitamins and minerals such as ferritin, folate, B12 and vitamin D as hair loss can be associated with low levels of iron stores.
I think it would be sensible to run a full thyroid blood panel to include a TSH, T3, T4, inflammation, antibodies and core strength vitamins and minerals. so we can rule out some possibilities - viz; especially Hashimoto's and low ferritin.
When you say your thyroid levels are now stable do you have TSH T3, T4 results and ranges to share with forum members ?
Thank you for your response. In July 2021 T4 was 16.7, T3 was 4.7, TSH was 0.42
So, presuming the ranges are 3.10 - 6.80 for T3 and 12 - 22 for T4 your metabolism is coming in at around 3.5 which looks good.
It must be very distressing for you loosing your hair like this.
Do you have any other symptoms ?
No - just hair loss at present, although do get dizzy when I lie down but that may not be related.
I'm sorry - I've no other suggestions, my knowledge is limited :
Good morning to you :
Can I just add I deeply regret having RAI thyroid ablation for my Graves Disease back in 2005.
I think first and foremost you need to know what thyroid AI disease you are dealing with.
RAI is not recommended if you have TED.
TED runs independently, whether you have Graves or Hashimoto's.
Please dip into the Elaine Moore Graves Disease Foundation website.
Elaine has Graves and went through RAI thyroid ablation and finding no help with her continued ill health started researching this poorly understood and badly treated AI disease some 20 odd years ago.
She has written several books on thyroid AI disease and the website offers a whole section on the AI component on thyroid disease, for which mainstream medical have no answers.
P.S. ncbi.nlm.nih.gov/pubmed/306...
Thank you so very much for your advise. RAI was suggested over a year ago, as my only option, but I asked to continue taking carbimazole to see if it would right itself. So glad I did. I will take a look at Elaine Moore's Graves Disease website.
Yes, I wasn't even given a treatment option and told at my very first endo appointment at the hospital that I was due to have RAI the following year.
I knew nothing back then, and there was no information forthcoming from the endo but I was given a leaflet which I know now to have been obsolete and biased in it's content.
Long term AT medication has to be the most sensible option, the thyroid is the victim in all this and not the cause, as the cause is with your immune system response and it's something you can learn to live and adjust to, as it's for life.
It's a question of degree, of course, but I was well on the Carbimazole and this solved my problem
Obviously some people's Graves is extreme and if not controlled well by AT drugs maybe something else needs to be considered.
I do think these blanket, drastic actions of surgically removing the thyroid or worse still drinking a toxic substance ( that is also taken up by other glands and organs within the body ) to burn out the thyroid in situ - short sited and not in the patient's best interest.
I now have to self medicate and buy my own full spectrum thyroid hormone replacement and run my own private blood tests as routinely in the NHS there are currently no medication options in primary care and doctors are reliant on just TSH blood test results which are a waste of time and money when on any form of thyroid hormone replacement, if you want to be well and get on with your life.
Hair loss
Hair loss - everywhere! 
Hair loss due to thyroid dysfunction?
Hair loss
Hair loss continues 
