More results and still losing hair :( - Thyroid UK

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More results and still losing hair :(

Abbychaya profile image
13 Replies

Hello all

So, a year or so later, I'm STILL struggling to get diagnosed with Hashimoto's and stop my hair falling out

My latest results:

TSH 1.50 (0.35-3.5)

T4 14 (8.0-21)

Ferritin 41 (down from 49 in Jan!) 23-300

They didn't test my antibodies (doh!)

but they were 78.4 in Jan

I have been taking Nutrithyroid for months and felt so much better.

However, my hair has drastically thinned, so much so that there is hardly anything in the crown and huge patches around the parting the hair itself has got so fine and thin and I am devastated, used to have a thick thick mane of glossy hair, now just wispy shreds :(

I've asked for another B12 and D3 test and the antibodies again

Can anyone help? should I be on a trial of Thyroxine now? will my hair ever grow back? Or is the hair related to something else? should I be seeing a dermatologist?

My energy is so much better can get through the day and exercise, although still a stone heavier than I'd like to be

The doc's have said categorically I do not have Hashimotos and that a lot of people in the general population have raised antibodies are are fine!

Advice?

I've got the name of a private Endo who has said she will see me without a referral so have written to Doc's informing them that if they aren't happy to trial me on thryoid meds, then I'll see the private doc and take it from there

I'm gluten and dairy free btw... and yes feel much better, eat loads of protein and take SHED LOADS of supplements

Biotin, high strength

2 x 1000 evening primrose oil

selenium

zinc

multi vit

Iron (floradix)

Yet have struggled to get anywhere with my levels of anything

Help!!

Abby

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Abbychaya profile image
Abbychaya
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13 Replies
greygoose profile image
greygoose

The hair-loss could be from your low iron. You should really be supplementing that. Your FT4 is only mid-range - should be higher - so you probably have low T3 and that would be causing symptoms.

Which antibodies were 78.4? There are two that should be tested : antiTPO and antiTg. Some Hashi's people have one, and some the other. And some have both. I have both, but the antiTg is the highest.

Doesn't sound like your doctors know much about thyroid, I'm afraid. They Don't know that some people can have Hashi's without any antibodies! And if you have got some (what was the range, by the way?) then they should start treatment sooner rather than later. With Hashi's, you should have a suppressed TSH.

Personally, I would go with the private endo!

Abbychaya profile image
Abbychaya in reply togreygoose

my T3 was 5 in Jan

TPO antibodies 78, they didn't measure the others but have asked now

am supplementing iron with Floradix.. will go back on the Ferrous fumerate now

ranGE for antibodies is <34 so 78 not far over, but still

thanks

Abby

Abbychaya profile image
Abbychaya in reply toAbbychaya

sorry T3 (range 3.1-6.8)

greygoose profile image
greygoose in reply toAbbychaya

Well, you FT3 is only about mid-range, low enough to give symptoms. On the basis of your Frees alone, I would think you need treatment.

And as for antibodies, over is over! If they will insist on sticking to the stupid ranges, they should also stick to the rules! Doesn't matter that it's only 0.4 over, if 78 is the cut off, you have Hashi's!

Besides, levels of antibodies vary. They're not set in stone. Your blood test could have been done on their day off. Doctors should never rule out Hashi's on the basis of one negative - or almost negative - blood test. Insist on getting it done again in a few months time.

Abbychaya profile image
Abbychaya in reply togreygoose

Thanks a lot greygoose. Yes, they said having antibodies of this level (68 - 78 <34) was no biggie!! I have written insisting trial of thyroxine... again, conflicting advice as was told Ft4 of 14 (and previously 12!) was 'normal' nothing to worry about!

So where should I be shooting for with FT4 and 3? upper part of range?

just to be clear <34 is the cut off for TPO antibodies and mine were 78 time.. up from the previous reading so something is up!

greygoose profile image
greygoose in reply toAbbychaya

Ah, OK, I thought you said... never mind. lol

Yes, they say that all antibodies are no big deal. My Tg was 1500 and the endo didn't even mention it! It was Dr Dalle that said wow! Look at those antibodies! I didn't even know I had Hashi's for 7 years! So, no surprises there, then!

12 and 14 for T4 are 'in range', and therefore 'perfect' for most doctors. They just Don't understand ranges.

I would want my FT4 in the upper third of the range, at least, and the FT3... well, I have to have mine over-range to feel well, but most people need it at the top of the range.

The FT3 should be higher in its range than the FT4 in its. If the FT4 is higher, that means you're not converting well. Ignore all statements about 'you must be converting OK because you do have some T3'!!! That is totally irrelevant, what counts is how much T3 you have.

In my opinion, you have Hashi's and should start treatment straight away - for what it's Worth! lol

Abbychaya profile image
Abbychaya in reply togreygoose

yes I feel the same, I thought that having ANY antibodies over the accepted range <34 was not good and that over 70 was an indication of Hashi's but the doc's I am at do not think so...

My TSH has been has high as 3.0 (0.35-3.5) and consistently above 2.50 until this year (and I changed diet, took nutrimeds, supplements etc)

I really want to try NDT... but doc's will not prescribe, have bought some off the internet.. should I just give it a go? what about next time I have my levels tested and I've probably got a suppressed TSH lol! that will confuse them!

I think better to go see private endo and get her to prescribe and liase with my stupid docs and see how that goes

thanks again Greygoose x

greygoose profile image
greygoose in reply toAbbychaya

I agree with you whole-heartedly! They are so dumb you Wonder how they manage to walk and talk at the same time. Not one iota of knowledge about thyroid.

Do start low on the NDT, though, 1/4 grain for two weeks. Then up by 1/4, etc.

Best to see a private doc if you can afford it, you're never going to get anywhere with your GP!

vgam profile image
vgam

Hi

for hair I have been advised that ferritin levels must be 70 and above.

Unfortunately this hasn't really helped my hair loss but I suspect mine is as a result of levothyroxine

greygoose profile image
greygoose in reply tovgam

In which case start taking Evening Primrose Oil and Borage Oil, they negate the effects of synthetic T4 on the hair.

Abbychaya profile image
Abbychaya in reply togreygoose

Yes, Im taking Primrose oil, but not Borage oil, thanks Greygoose will look into that

greygoose profile image
greygoose in reply toAbbychaya

:)

Abbychaya profile image
Abbychaya

of course the standard reply I have received to ALL of my visits about symptoms is

ITS YOUR AGE!!! (51)

menopause etc

But losing hair and gaining weight and high cholesterol are typical hypo symptoms no?

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