Hair Loss getting worse: Hello, I was diagnosed... - Thyroid UK

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Hair Loss getting worse

Lrden profile image
31 Replies

Hello, I was diagnosed in Oct17 with hypo thyrodism tsh was 5.1.

I was put on levothyroxine 50mcg then tests showed tsh down to 1.4 FT4 was 13.3.

GP thought could increase as FT4 could be higher so put on 75mcg end Nov17.

Latest test in Feb 18 tsh 0.19 and FT4 at 14.

Hair loss just continuing to get worse. Would I have been better to stay on 50mcg?

Thanks in advance I’m so depressed.

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Lrden profile image
Lrden
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31 Replies
Kitten44 profile image
Kitten44

Hi, have you had your ferritin tested? I saw a thrichologist earlier in the year who said it must be at least 100 for hair to grow.

Hair growth is also influenced by vitamin D, and other vitamins and minerals need to be optimal for the Levo to be effective and indeed the iron to be absorbed. I'm sure someone more knowledgeable will come with more advice.

Lrden profile image
Lrden in reply toKitten44

Thanks for your reply but no it’s not a ferritin problem, that was 230 I was told it was too high and to stop the supplements with high iron. I have just started taking biocare one a day plus and eat quite a lot of red meat so unfortunately ferritin levels are not the cause

Judithdalston profile image
Judithdalston

Look to the right of your post in bit headed 'related posts' and click through them. Lots of suggestions for causes, and possible remedies.... 'weather related', supplement related from 'ideal T4 or T3 dose', evening primrose oil, ferritin, folate, zinc.... My hair is falling out now,by the small handful, fortunately have lots of fine head, but only about 50% left all over my head. I do remember when the same thing happened following septic shock it took 3/4 months to recover.

Lrden profile image
Lrden in reply toJudithdalston

Thanks will do but I’m hoping someone has experienced similar. I wonder if you can pay a specialist at thyroid UK for specific advise?

Judithdalston profile image
Judithdalston in reply toLrden

There are so many causes for hair loss. But I see you have already seen a specialist at St Thomas' Hair clinic who suggested it was inflammation and poor thyroid hormones. Inflammation might be a result of thyroid autoimmune antibodies, have you been tested for Hashimoto's; it is characterised by poor gut absorption resulting in low vitamin and mineral levels. Many find the antibodies can be improved with gluten - free, and even dairy-free diets. Firms like Medichecks do hair lab tests, but I have no idea how useful they are. I take zinc... but remember it can take 3/4 months to notice the difference re hair improvement.

Lrden profile image
Lrden in reply toJudithdalston

Thanks as per my post to SlowDragon I thought the TPO and TTG tests meant I didn’t have hashimotos. As far as my hair consultant was concerned the inflammation he refers to is the sarcoidosis I have had which developed sometime pre to 2016 but no one knows how long and not finally diagnosed until early 2017.

SlowDragon profile image
SlowDragonAdministrator

What about your FT3 level and do you have high thyroid antibodies?

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

Did you stop any supplements containing biotin before test?

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Do you have Hashimoto's? If so are you on strictly gluten free diet?

Lrden profile image
Lrden in reply toSlowDragon

Hi thanks for your reply. I have posted here before and thank you for all the information but my question really is my tsh level too low at 0.19 and would it be better at 1.4?

In answer to your questions yes I’ve had lots of tests

TPO 28, range 0-60

TTG negative

Folate 17, range >5.4

Ferritin 230, range 10-291

B12 470, range 160-820

Vit D done by medichecks 56, range 50-200. I keep reading conflicting advice on Vit D. I take Adcal D3 for osteopenia. This forum generally seems to advocate higher vit d levels but I have read articles that say too much vit d is bad for you.

I’ve not had the FT3 checked and don’t really understand what that part means or what medication it would involve.

Recently I was referred to the hair clinic at St Thomas’s hospital. The consultant said I have chronic telogen effluvium which is secondary to inflammation in the body and fluctuating thyroid levels.

He quite vaguely said my GP should monitor the free thyroxin levels and TSH to get it to remain stable for 4-6 months.

I have had pulmonary scarcoidosis (auto immune disease) currently in remission but a source of inflammation, so that leaves the thyroid.

My CRP inflammation marker is also high has been 18-22 and range is < 10.

The hair consultant did said my zinc level was low at 9.7, should be mid range 11-19.

I do not take thyroxine before tests and take after, always early morning.

I don’t take biotin but started taking multivitamin biocare 1 a day plus, should I not take any supplements before thyroid tests?

I am considering adding evening primrose but it contains omega 6 and again I’ve found conflicting info as to whether omega 6 or 3 is better.

Sorry for the long story and thanks for your help

SlowDragon profile image
SlowDragonAdministrator in reply toLrden

Low zinc is common with Hashimoto's

thyroidpharmacist.com/artic...

hypothyroidmom.com/the-4-be...

Would suspect you may have Hashimoto's despite low antibodies, as you have other autoimmune disease

Not everyone has high antibodies with Hashimoto's

thyroidpharmacist.com/artic...

Your vitamin D is very low. Needs to be at least above 75nmol. Most find around 100nmol better

vitamindcouncil.org/for-hea...

Low vitamin levels, especially low vitamin D may be cause of low TSH

Vitamin B12 is also on low side

SlowDragon profile image
SlowDragonAdministrator

Multivitamins are not usually recommended on here as too little of what we do need and stuff we don't

Iodine is not recommended when autoimmune thyroid is suspected

drknews.com/iodine-and-hash...

greygoose will possibly give her views on this multivitamin

Lrden profile image
Lrden in reply toSlowDragon

Thanks for your reply, I’m a little confused. I thought the low TPO antibodies and the TTG (this shows coeliac disease test on my results) being negative meant I definitely didn’t have Hashimotos disease.

Is the TTG test the same as the TG test you refer to?

I see a qualified nutritionist who also has thyroid disease and she put me on these vitamins the iodine content is 151 ug.

She has recommended a food intolerance test and gut tract test but I haven’t gone down that route yet.

Is there any definitive test to say whether or not you have hashimotos? If I had to give up gluten and diary that would be very hard indeed for me.

Lrden profile image
Lrden in reply toLrden

I’ve read through test results again and see now that the coeliac test TTG is not the same as the TG antibody test, hopefully GP will now test for that. Is it possible to have a low TPO result as I do and have a high TG result? Is it also possible to have normal results for both and still have hashimotos disease? Thanks in advance, this is so complicated.

SlowDragon profile image
SlowDragonAdministrator in reply toLrden

Yes you can have Hashimoto's and never have raised antibodies. The fact you have have other autoimmune disease suggests it might be.

An ultrasound of thyroid can reveal more. If it Hashimoto's it may look granular. See if you can persuade GP for one.

You could try just a zinc supplement, e.g. Zinc picolante

Plus a daily good quality vitamin B complex, one with folate in, not folic acid.

Trying strictly gluten free diet is always worth considering. 3-6 months should be long enough to see if notice any improvements

Only make one change or add one supplement at a time and wait for at least two weeks to assess

Lrden profile image
Lrden in reply toSlowDragon

Thanks, so the coeliac test which came back negative is supposed to mean I’m not gluten intolerant. Yet you think it is possible I might be? In that case the food intolerance testing I’m considering would be a waste of time.

I’ve just spent money on 2 months of the one a day plus its got zinc 15mg but not folate it contains folic acid 400ug.

This really is a minefield.

Do you have any thoughts on whether tsh 0.19 is better than 1.4 or vice versa?

Lrden profile image
Lrden in reply toSlowDragon

Why is folic acid no good and you think folate is better? Thanks

SlowDragon profile image
SlowDragonAdministrator in reply toLrden

Many people can't process folic acid

chriskresser.com/folate-vs-...

Gluten intolerance is never picked up by coeliac test. Many coeliac patients are not picked up with coeliac testing either, it's very unreliable

Many many thyroid patients have leaky gut. This allows gluten to cross from gut into blood

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms and help gut heal.

You won't know if you don't try it

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

My own experience is negative tests for Coeliac twice, endoscopy revealed extremely gluten intolerant. DNA testing on NHS after, suggests "probably" not coeliac, definitely gluten intolerant. It's not necessarily a clear cut yes or no situation

Low vitamins suggests gut is impaired

Lrden profile image
Lrden in reply toSlowDragon

SlowDragon thank you so much for your help. I thought the coeliac test meant that I wasn’t gluten intolerant I had no idea it could be incorrect.

I think I will go ahead with the stool/gut analysis and the food intolerance testing I think it is approx £500 but it might be money well spent.

SlowDragon profile image
SlowDragonAdministrator in reply toLrden

Personally I would just try strictly gluten free diet. You do not need to have gut symptoms at all (see my profile on how gluten can be such a hidden issue)

If you have leaky gut I am not sure that gets picked up with stool analysis.

You may be better considering getting TSH, FT3 and FT4 plus both TPO and TG antibodies tested. Low FT3 is extremely common, essential to test

via Medichecks or Blue Horizon - only £59 - sometimes on offer even cheaper

medichecks.com/thyroid-func...

Or improve vitamin levels and in 2-3 months do ultra vitamin plus test £99 also measures CRP - inflammation marker

medichecks.com/thyroid-func...

DIO2 gene test is worth considering

thyroiduk.org.uk/tuk/testin...

Lrden profile image
Lrden in reply toSlowDragon

Thank you, I’ve started digestive enzymes which I think is what I would be prescribed if I had a gut problem.

What meds would be given for low FT3?

SlowDragon profile image
SlowDragonAdministrator in reply toLrden

Extremely common to have poor conversion of FT4 to FT3 if gut issues, low vitamins and/or gluten intolerance

Correcting all these can often be enough of improvement

But if FT3 remains low on retesting after making all these changes then, you may need addition of small dose of T3

Especially if have DIO2 gene variation (16% approx on levothyroxine test positive for heterozygous or homozygous variation)

But first step is full testing, then correcting low vitamins

Incredibly difficult, but not impossible, to be prescribed T3 on NHS due to current outrageous price being charged- hopefully soon to be dealt with in court by C&MA

Read posts everyday you will soon learn more

Lrden profile image
Lrden in reply toSlowDragon

Thanks again I just asked if greygoose would assist when I get results would you please give your thoughts too?

greygoose profile image
greygoose

You shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate, or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. :)

You many have osteopenia (is that even a real thing, or just a made-up disease by Big Pharma to sell more drugs?) but calcium supplements are not the answer and not a good thing to take. If you are taking vit D3 - enough of it, that is - that will increase your absorption of calcium from food. So, you really ought to be taking vit K2 - MK7 with it, to make sure that calcium goes into the teeth and bones, rather than build up in the soft tissues where it can cause problems like kidney stones and heart attacks. We have been brain-washed into believing that all bones need is high levels of calcium, but that is not true. Over-dosing on calcium is a terrible thing to do. And, actually, magnesium is far more important for bones that calcium. Bones also need good levels of T3 - which is the active thyroid hormone, needed by every single cell in your body - T4 (levo) is just the storage hormone. So, if I were you, I'd drop the adcal and take more vit D3 and magnesium - with vit K2, of course.

As to your hair-loss, well, it could be due to all sorts of things… You said that the hair clinic said it was due to inflammation. People on here say it's probably due to low iron - and I would second that, from personal experience. You say your ferritin is high. BUT ferritin can be high due to inflammation, and when the inflammation goes down, the ferritin turns out to be low. So, did you have any inflammation markers tested? Did you have an iron panel done, or even serum iron?

It's possible that levo itself can cause hair-loss due to causing testosterone to convert into bad testosterone, of which I can never remember the name! But, that is only temporary, and taking Evening Primrose Oil and Borage Oil can counter-act that. Don't worry about the omegas. It's not that 3 is good and 6 is bad, it's the balance between the two that counts. And EPO is OK. But, of course, in any case, you do need optimal FT3 - T3 being the active thyroid hormone and source of life. TSH is just a messenger hormone. It doesn't make you feel anything and it doesn't make your hair fall-out. It's just a vague indicator of whether you've got enough thyroid hormone circulating in your blood. If it's high, you haven't. If it's low, it's irrelevant, because it's too vague. So, a TSH of 0.19, overall, is better than a TSH of 1.4, because it means you have more thyroid hormone.

But, worrying is also bad for hair. So, stop doing it! :D

Lrden profile image
Lrden in reply togreygoose

Thanks greygoose, wow what a lot of info.

I’m seeing a qualified nutritionist she put me on the biocare one a day plus.

It contains iron 7.5mg

Calcium 30mg

My CRP has been 18-22 which I believe is high.

I will check to see if I had serum iron tested.

Is there one supplement that includes all the vit minerals you recommend?

greygoose profile image
greygoose in reply toLrden

Well, she may be a trained nutritionist, but she didn't do chemistry at school, did she! It your put iron and calcium together, they bind together, and you can't absorb either of them. Goodness me! That's basic! Also, as I said above, the iron with block absorption of all the vitamins, so you might just as well throw your money down the drain! Remember, everyone has their own axe to grind - including nutritionists!

Your CRP is very high. It should be below 5. So, that explains your high ferritin. Therefore your ferritin is probably low. But, get rid of the inflammation before even thinking about taking iron. Have you tried turmeric (curcuma)? That's very good for inflammation.

No, there is not one pill that contains… Forget one pills, and start taking your vitamins and minerals individually. That's the way they do the most good. :)

Lrden profile image
Lrden in reply togreygoose

Lol thanks, im sure you are right funny chemistry is the one subject I failed. I’m seeing GP on Wed and ask for all thyroid tests. I doubt she will let me do vit tests so will go to medichecks I guess I’m better to stop all supplements now before testing. I’ve been taking apple cider vinegar for inflammation not sure if it’s doing me any good. Have heard of tumeric is there a preferred form? I don’t know how else to get the inflammation down and if the CRP marker is the one that should be tested. I know I’ve had the ACE inflammation marker tested but understand that is specific to sarcoidosis.

Once I get results would you please help me with guidance afterwards?

Thanks again

greygoose profile image
greygoose in reply toLrden

I doubt she'll do the FT3 - and even if she orders it, the lab will probably refuse.

I've never heard of taking ACV for inflammation, but it might help indirectly by raising your stomach acid, making absorption of nutrients easier. So, keep on with it.

I just use the ordinary ground turmeric and put it in a drink or make turmeric gummies. You could also try high doses of vit C.

Of course I'll help you with your new results. But, if you put them in a new post, lots more people will also help. :)

Lrden profile image
Lrden in reply togreygoose

Thanks :)

Lrden profile image
Lrden in reply togreygoose

Serum iron not tested since Oct 15 level was 17 range 11-25

greygoose profile image
greygoose in reply toLrden

Well, that was OK. Who knows what it is, now!

SlowDragon profile image
SlowDragonAdministrator

Read up on importance of magnesium and vitamin K2 Mk7 with vitamin D for bone health

Loads of info on here also lots on the net

nutritionaloutlook.com/join...

betterbones.com/bone-nutrit...

Lrden profile image
Lrden in reply toSlowDragon

Thank you

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