Everyone here has been so helpful since I was diagnosed with hyperthyroidism in February.
An update re: my thyroid… it’s almost better. My TPOAb antibodies have reduced to ~50s. TSH and T4 in normal range. About to have a follow up blood test this week and I am presuming everything will be ok and will be taken off carbimazole.
However, there is a sting in the tail.
My hair is falling out. Big time. It’s diffuse but mostly around my temples. My hair is a huge part of my life as I’m sure it is for most people but I will not be able to cope easily with baldness. I have my wedding in October so obviously this is just fantastic timing.
Would anyone have any suggestions what I can do to prevent it falling out any more? From what I have read I believe this to be telogen effluvem, most likely as a result of my body coping with the stress of Graves’ disease.
My vitamins were low and I’m supplementing with iron, b12, selenium, vit D.
I’m really desperate and would appreciate any guidance as NHS won’t listen to me.
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TSH and T4 in normal range. About to have a follow up blood test this week
Make sure you get FULL thyroid and vitamin testing
Exactly what vitamin supplements are you taking
Stop any supplements that contain biotin 5-7 days before test
How much levothyroxine and which brand
VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
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
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
Be aware that lots of articles suggest that biotin is good for hair and nails. I'm sure they are right but biotin supplements can have some drawbacks you need to be aware of. Lots of testing protocols use biotin as part of the testing process, and if the sample being tested contains high, or higher than normal, levels of biotin it can make results unreliable.
So, when taking any supplement containing biotin remember to stop taking it for 2 - 7 days before testing, the higher the dose, the longer you should give it up. After blood samples have been taken you can start taking biotin again.
Two months ago your T4 was under the range - and as mentioned then -
your bloods were / are a positive for Hashimotos - a thyroid Auto immune disease that is not medicated with an Anti Thyroid drug such as Carbimazole.
Your metabolism has been blocked for too long by the AT drug and your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D - may have fallen through the ranges compounding your ill health further -
and low iron of which ferritin is just one bio marker - is common when with hair loss -
please get these blood tests run and come off the Carbimazole as I'm not aware there was ever a positive antibody reading for Graves Disease - close yes - but not over range.
Hey - the consultant gave me a diagnosis of Graves based on a slightly elevated thyroid uptake scan… my TRAb wasn’t positive but was 3, out of range 0-3.3.
I really don’t know what I have but I do know I was hyperthyroid and quite poorly with it but I no longer have that.
My consultant said because my TSH has been in range I’m not hypo???
I don’t get the positive vibes from the NHS and I don’t agree with the diagnosis but I’m not qualified in this. I believe I had a horrible bout of postpartum thyroiditis, as my TPOAb levels were associated with this but for whatever reason it was delayed. But the nhs discarded my thoughts. I don’t mean to sound combative, I’m as confused as you! I appreciate your interest as I feel like it’s a very lonely place x
Yes I totally understand and have been in similar circumstances and part of the reason why this patient to patient open forum exists as most forum members have found little help nor understanding in the system and why we are here trying to help each other when we face that NHS brick wall :
If you are being treated for Graves - which you shouldn't be - please do not get roped into having definitive treatment - as that's generally the next step offered when you come off the AT drug if your T3/T4 start to spike again.
Please read these are 2 links you may like to consider :-
Hypo symptoms start appearing when the TSH creeps over 2 and years ago when a TSH reached 3 - a diagnosis of hypothyroidism was made and a prescription for thyroid hormone replacement administered.
Ranges are guidelines and the TSH the least reliable measure of anything once taking any form of thyroid medication including Anti Thyroid drugs.
Thank you for sharing these. I am truly dammed if I do and dammed if I don’t stop taking the carbimazole!
Let’s see how this week’s blood test goes. Currently waiting in the queue for the NHS to reschedule my blood test and to request additional forms for the test to make it worthwhile. Wish me luck.
Labs came back for my thyroid only. T4 and TSH in range, boom!
Happy about this as I have a stomach bug and was worried this might have set things off in a bad way!
Revisited my Ferritin, which unsurprisingly was low last time it was checked out. So I’m on the Vitabiotics iron, b12 and folate tablets. Do you have any recommendations for increasing ferritin quickly? I’ll be getting steaks next time I go shopping…
Labs came back for my thyroid only. T4 and TSH in range, boom! Thank you for sharing your stories about your unfortunate experiences. I find you to be an inspiration how you dedicate your time to help others in this mess.
Happy about this as I have a stomach bug and was worried this might have set things off in a bad way!
Revisited my Ferritin, which unsurprisingly was low last time it was checked out. So I’m on the Vitabiotics iron, b12 and folate tablets. Do you have any recommendations for increasing ferritin quickly? I’ll be getting steaks next time I go shopping…
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