long term hair loss : Having been on... - Thyroid UK

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long term hair loss

Suesuzz profile image
84 Replies

Having been on levothyroxine for more than 10 years I have gone from having very thick hair to continually losing handfuls over the years and now having thin hair. I've asked GPS a few times but had no help.

I take iron, biotin, selenium, magnesium, zinc, collegen and multi vitamins. Has anyone found anything that works. I'm interested in Ayurvedic help if there is any.

84 Replies
Buddy195 profile image
Buddy195Administrator

As this is your first post Suesuzz, I’d like to say welcome! You will get lots of excellent advice & support from forum members.

So we can better help…… Do you have any thyroid blood tests (TSH, FT3, FT4) to share? What dosage of Levo are you taking? Have you tested key vitamins (ferritin, folate, B12 and VitD)?

Suesuzz profile image
Suesuzz in reply to Buddy195

Hello and thank you, my last result last December was 1.8 TSH, the GP won't do any other tests. I'm on 100mcg at moment, it tends to vary between 75 and 100 every year when I get retested and my results are abnormal so the GP changes the dose and retest.

bluepettals2 profile image
bluepettals2 in reply to Suesuzz

yes that sounds like me, i had a great Endo until he went private, welcome by the way to tuk, keep us posted.

Regenallotment profile image
Regenallotment

Hi Suesuzz,

Sorry to hear about your hair.

What multi vit are you taking alongside the individual supplements?

What is your diet like? GF? veggie? vegan?

What is your Levo dose?

Sorry more questions than answers but hopefully these answers will help with some ideas on the forum.

🦋💚🦋

Suesuzz profile image
Suesuzz in reply to Regenallotment

Hello, I'm on 100mcg now but every 12 months when I get a blood test the result is abnormal, sometimes too high, sometimes too low (only TSH of course) then the dose is changed for the next 12 months.The multivitamins are just a general one. I eat a healthy general diet, pulses, mung beans, veg, fish and white meat.

Used to have a very stressful life + menopause which I think caused the thyroid problems but fairly stress free now. Lots of yoga, fresh air but still dropping hair all the time. I found the other day that my scalp had gotten sunburned which was a pretty upsetting moment.

Ziburu profile image
Ziburu in reply to Suesuzz

I would ask ( insist) that you’re referred to an endocrinologist, without delay.

Thyroid probs are complicated and above the pay grade of most GPS. Sounds like yours is just tinkering and doing nothing useful to help you.

You are entitled to insist upon a referral and I don’t think there is any reason to refuse. 🍀🍀🍀

Wua13262348 profile image
Wua13262348 in reply to Suesuzz

You say your scalp got sunburn the other day.Back in 2013/2014 I was losing feeling in my right hand and asked for vitamin b12 to be checked. Turned out i was deficient despite a diet full of b12 and a daily supplement via a multi vitamin at that time.

I was given 25 mcg or 50mcg cyanocobalamin b12 to take daily. Think 25.

My scalp was beetroot red and burning hot, to the extent that when showering and the water hit my head I expected to hear sizzling!

My hair dresser asked what on earth I'd done to my scalp, and I told her it was the effect of taking a very small amount of b12, when found to be deficient. She also remarked that I had grown a fringe of baby hair, previously not there.

I believe you need to get your folate and vitamin b12 checked asap. Ferritin, too. And vitamin d as always recommended on the forum.

Hope this helps.

SlowDragon profile image
SlowDragonAdministrator

Just testing TSH is completely inadequate

Suggest you get full thyroid and vitamin testing yourself as next step

EXACTLY what vitamin supplements are you currently taking

Multivitamins never recommended on here

Most contain iodine not recommended for anyone on levothyroxine

GP should NOT be changing dose by TSH

ESSENTIAL to stop biotin a week before all blood tests

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Do you always get same brand levothyroxine at each prescription

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

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

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...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning

Watch out for postal strikes

Come back with new post once you get results

bluepettals2 profile image
bluepettals2 in reply to SlowDragon

i meant to ask you S.D, who does the blood tests on the private ones?

SlowDragon profile image
SlowDragonAdministrator in reply to bluepettals2

You mean where can you get private blood draw?

Medichecks or Blue horizon both have list of private clinics if you don’t want to do DIY finger prick test

bluepettals2 profile image
bluepettals2 in reply to SlowDragon

oh right thankyou.

bluepettals2 profile image
bluepettals2 in reply to SlowDragon

morning S.d, i have got my results here from the gp surgery, well my results from the Professor,

not sure what he professes in but hey.. he is a professor!

and tells me my t4 is too high as opposed to my WONDERFUL precious Tsh,

i hope greygoose is watching this as she loves the TSH... how do i tag GG?

i am going to bundle her up with her doggy and take her with me so she can use that sharp tongue of hers...and tell the professionals exactly what is wrong!

now, the PROFESSOR, phoned me with my results to tell me that my t4 was too high but he DIDNT mention the things that obviously DIDNT matter like my kidney function has gone down, and low vit d..

kidney Below average, i have been stage 3 chronic kidney for years now

so gfr is 52ml/min ( 60.0- 250.01)

vit d , obviously NOT important at 39nmol/ ( 50.0-150.0) BUT he never mentioned THAT!

urea above at 8.4 ( 2.5- to 7.8

creatine above 94.umol/ ( 45.0 -83.0)

ferritin is 147 ng/ml ( 15.0 - 300.0) but that is only half way?

TSH below 0.02-) 0.3- 5.0 I used to be so spot on with these hormones but i had burn out so now left it all alone aan dnow i cannot remeber what i learnt, does this make me Hyper , because i am not hyperactive.. i am stressed due to family issues and finace aand the shitty world changing today, and the mess we are all in,

everything else looks normal here, as normal goes..

SlowDragon profile image
SlowDragonAdministrator in reply to bluepettals2

Low Ft3 leads to low GFR and is reversible when thyroid levels are OPTIMAL

tandfonline.com/doi/full/10...

Just testing TSH and Ft4 is completely inadequate

Highly likely you have low Ft3

Vitamin D is insufficient

Next step is to get FULL thyroid and vitamin testing done yourself via Medichecks or Blue horizon

Meanwhile working on improving low vitamin D

How much vitamin D care you currently taking

Likely to need at least 3000iu per day

What vitamin supplements are you currently taking

bluepettals2 profile image
bluepettals2 in reply to SlowDragon

which firm is the simplest to get thrroid tests from, i used to use genova via tuk but then they changed it to haaving to have a professional sponser type to getthe tests. i just want to get the tests done without having to involve medical people, so any do saliva tests for t4 t3 etc like they do adrenals?

SlowDragon profile image
SlowDragonAdministrator in reply to bluepettals2

You need blood test

Always test thyroid levels early morning just before 9am and last dose Levothyroxine 24 hours before test

Medichecks is usually cheapest

Watch out for postal strikes

Only do test early Monday or Tuesday morning

Suggest you take to post office and pay for guaranteed 24 hours delivery

Stop any vitamin supplements that contain biotin week before test

What vitamin supplements are you currently taking

bluepettals2 profile image
bluepettals2 in reply to SlowDragon

thanks slow D aka fast dragon/ :)

SlowDragon profile image
SlowDragonAdministrator in reply to bluepettals2

For full Thyroid evaluation you need TSH, FT4 and FT3

(plus both TPO and TG thyroid antibodies tested)

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Recommended on here that all thyroid blood tests early morning, ideally just before 9am 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

List of private testing options and money off codes

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

bluehorizonbloodtests.co.uk...

bluepettals2 profile image
bluepettals2 in reply to bluepettals2

thankyou for the taylor francis, my sister is stage 4 kidney, she is anxious tired , alswys falls asleep, is slow in everythng she does,

has osteoporosis, hair falling

stressed ( that is due to her late partners situation that he has left her in,

but she wa s stressed anyway before he died,

she is low in vit d

low thyroid=low vit d,

on statins = high cholestorol

but low thyroid is high cholesterol,

she was given bone wrecking meds,

so my homepath has given her boron and magesium,

BUT i know damn well she is hypothyroid, but she made the mistake of saying to her gp,

my sister says i am hypothyroid to which the doctor got annoyed, and said there is nothing wrong with your tests,

i think her t4 was about 4.4, i cant remeber her tsh, i wil have to ask her, and she has no eyebrows either but she will not stand up for herself at the doctors but she does elsewhere.

SlowDragon profile image
SlowDragonAdministrator in reply to bluepettals2

Suggest you get her to do full thyroid and vitamins via Medichecks or Blue Horizon as well

bluepettals2 profile image
bluepettals2 in reply to SlowDragon

i will do my best, she is not like me, she is dead scared of the doctors!

FAB-jellybean profile image
FAB-jellybean in reply to bluepettals2

Hey bluepettals2 , you might find this new research paper interesting. I posted on the main forum this morning. I wasn't aware of the link between hypothyroidism and kidney function, but it's not surprising given how thyroid hormones affect every system in the body. Hope this helps.

cureus.com/articles/108609-...

bluepettals2 profile image
bluepettals2 in reply to FAB-jellybean

thankyou i will have a read of that, now as i am low od vit d3 and so is sister i bought some vit d 3 an dvitamin k2, SHE THINKs vit k2 clots blood, i say it stops calcium from cloggong arteries, answers on a postcard please or better still aswers on here.

FAB-jellybean profile image
FAB-jellybean in reply to bluepettals2

You're both right bluepettals2 . Vit K is needed for your blood to clot properly and it is involved in the bone health through the activation of osteocalcin which transports calcium and minerals to the bones and teeth. See this: mybodykitchen.com/blogs/new... for a more scientific take, check this: cambridge.org/core/journals...

To tag you use @ followed by the name and you'll get suggested names so you can find the right person.

bluepettals2 profile image
bluepettals2 in reply to FAB-jellybean

thankyou @Febjellybean just checking... but that didnt work?

bluepettals2 profile image
bluepettals2 in reply to FAB-jellybean

how do you tag people here?

bluepettals2 profile image
bluepettals2 in reply to FAB-jellybean

blimey that is scientific , i am going to print it off and leave in the doctors postbox!!!

SlowDragon profile image
SlowDragonAdministrator in reply to FAB-jellybean

Low Ft3 and poor kidney function

ncbi.nlm.nih.gov/pmc/articl...

bluepettals2

Did kidney issues start after T3 was withdrawn

Essential all four vitamins are tested at least once a year

Aiming for

Vitamin D at least around 80nmol minimum and around 100nmol maybe better

Serum B12 at least over 500 (Blue horizon and NHS test)

Active B12 at least over 70 (Medichecks test)

Folate and ferritin at least half way through range

High cholesterol levels linked to being hypothyroid

greygoose profile image
greygoose

So, your ignorant doctor has got you on the TSH seesaw. You increase the dose, and of course, the TSH goes down; reduce the dose, the TSH goes up; increase the dose, TSH goes down... and so on ad infinitum. He's never going to get you well like that.

The TSH is a very bad indicator of thyroid status. It's not a thyroid hormone, it's a pituitary hormone. Just because it's low in-range/below-range/suppressed does not mean that the thyroid hormones are necessarily in the right place. The pituitary reduces production of TSH when it senses that there's enough thyroid hormone in the blood. BUT when there's hormone in the blood, the pituitary is the first to be served, so the pituitary may be satisfied, but the rest of the body could be starving for thyroid hormone, and the FT3 and FT4 be very low on testing.

The most important number is the FT3, and you are only over-medicated if the FT3 is well over-range. So, refuse to lower your dose unless that is tested.

Multi-vits are really not recommended for many reasons: poor quality ingredeients - cheapest and least bio-available - nor enough of anything to treat a deficiency, things you don't need and could be dangerous in excess... But, most of all, supplements should not all be taken together like that, because a lot of them cancel each other out, and you end up absorbing very little or nothing at all. They're just money down the drain.

Far, far better to get your principle nutrients tested - vit D, vit B12, folate, ferritin - and just take what you need. More is never better.

Welcome to the forum. :)

Suesuzz profile image
Suesuzz in reply to greygoose

Goodness, thank you, so much information. I'll stop the multivitamins then. She won't test for anything else and will just issue a different dose levothyroxine so I can't really refuse to change dose as she will just change it. She was angry last year when I got a cholesterol test added to the blood test because it was a year early even though my cholesterol had increased a lot and another doctor picked it up as a problem. I can't change doctors as one large practice management run all the GPS in this area.I've only been taking the supplements this year and yes, I knew a out the biotin.

The levothyroxine is whatever they have in stock.

Will look at getting the tests privately. Thank you.

greygoose profile image
greygoose in reply to Suesuzz

If your cholesterol is high, then your FT3 is too low. The two are linked. That used to be how hypothyroidism was diagnosed, before they invented the wretched TSH which has wrecked so many lives.

She sounds awful! Pompous, ignorant and self-opinionated. If she were my doctor, she'd get the rough edge of my tongue and I'd set about self-treating - no-one could be blamed for self-treating with a doctor like that!

Suesuzz profile image
Suesuzz in reply to greygoose

That's really interesting. I've read so much over the years on this and never come across the FT3 / cholesterol interaction. Will get that tested. Would explain a lot.

greygoose profile image
greygoose in reply to Suesuzz

It would, indeed! :)

CoeliacMum1 profile image
CoeliacMum1 in reply to greygoose

greygoose Sorry to butt in does that always happen, the cholesterol/FT3 connection?

I have always had low cholesterol and triglycerides but my FT3 has never been above 3.9 which is relatively low given many ranges go up to 5 and beyond.

I’ve started Liothyronine and it’s hardly budged but suppressed TSH now.

I will do my own post but would love more information on that connection please if you have it. 🙂

greygoose profile image
greygoose in reply to CoeliacMum1

Same here. My cholesterol is naturally low, even when I was very hypo. And when my FT3 got very high, my cholesterol got dangerously low! And no-one can tell me why - liver checked out OK. But the only response I get from doctors is that cholesterol can never be too low! Which is complete and utter nonsense, of course! But, that's doctors for you - they know nothing!

CoeliacMum1 profile image
CoeliacMum1 in reply to greygoose

They hardly bother to test mine now, we need cholesterol, that’s madness. Absolutely no faith in medical/medicine/pharmaceutical things I question all but it’s tiring and limiting.

The last 3weeks my mum went into hospital!

4 consultants many other staff varying from ward Drs ACPs and nurses and a pharmacist.

All tried to give a drug that is known problem (although not life threatening)… when in A&E they gave her a this drug we know it was life or death situation, but triggered a reaction so once in high dependency area I took photo of her list of meds.., and straight away alerted them, as did my sister and once conscious my mum many times but think as she’s 80 they thought her mind wasn’t with it, she’s sharp as a knife.

They wonder why people question them or have health anxieties 🤔

Like you get in law/police situation appointed an appropriate adult if young old or mentally not with it, so should you for medical matters! I could see some poor lonely person not able to fight their corner.

The total disregard for a person to feel how they want to feel just tunnel vision in one specific area… this has to change.

They were all ok about not giving it her but why so many attempts is beyond belief.

Apologies for bit of rant, it triggered me as so recent…the days of common sense have completely gone in medicine, it’s too reliant on pharmaceutical.

Marvellous they can do what they do today, which many of us are thankful but the on going areas of long term health is dire.

greygoose profile image
greygoose in reply to CoeliacMum1

Totally agree with you! I don't trust any of them. I've had so many bad experiences.

Timetraveler67 profile image
Timetraveler67 in reply to CoeliacMum1

That’s terrible and I can sympathise with the situation with your mum in the hospital as I was recently in a similar situation and I really believe if my son hadn’t questioned the meds they put me on I wouldn’t be here today. Hope your mums doing ok now x

CoeliacMum1 profile image
CoeliacMum1 in reply to Timetraveler67

Thanks for kind words Actually my mum is coming out of hospital today.🥰

jgelliss profile image
jgelliss in reply to greygoose

🤣🤣🤣👏👏👏

bluepettals2 profile image
bluepettals2 in reply to greygoose

Grey goose, lovely to see you after all these years, i would like you to come with me to my next appointment please! its the way you tell 'em! fantastic!

greygoose profile image
greygoose in reply to bluepettals2

I would love to, Blue, but I'm a long way away. :)

bluepettals2 profile image
bluepettals2 in reply to greygoose

i know GG, i was coming out to you to sit in your garden with strawberries, do you remember?

greygoose profile image
greygoose in reply to bluepettals2

Yes, I remember. I don't have a garden now, I have a rubbish dump come builders yard! My house is not a fun place to live, at the moment. :'(

bluepettals2 profile image
bluepettals2 in reply to greygoose

oh , are you extending? best come to me then GG..

greygoose profile image
greygoose in reply to bluepettals2

No, not extending, the work is exterior - mainly to stop the balcony falling down! But also exterior insulation. I'd love to come to you, but there's the old dog to consider. :(

bluepettals2 profile image
bluepettals2 in reply to greygoose

oh bless, what is he, ?my son is heartbroken right now, his beloved spaniel who was his former gf, she had to have him put down, he was in a lot of pain, they are both unconsolable.

greygoose profile image
greygoose in reply to bluepettals2

Oh, he's a weird mixture of Spanish dogs. But, he has a lovely shiney coat, black fading into chocolate. He's hypo too! And he has arthritis, poor lamb.

bluepettals2 profile image
bluepettals2 in reply to greygoose

bless.

jgelliss profile image
jgelliss in reply to greygoose

Many of us can use you at Dr's appointments to set the Dr's straight.

greygoose profile image
greygoose in reply to jgelliss

:D

Buddy195 profile image
Buddy195Administrator

If you can afford the cost, I would look to test your thyroid bloods & key vitamins privately as your GP appears inept. I use Medichecks, who are often discounted on Thursdays, so maybe worth checking out. It’s so important to get your thyroid & key vitamin levels optimal. Low levels will definitely affect your hair.

Suesuzz profile image
Suesuzz in reply to Buddy195

Thank you, had been thinking about private tests but didn't know how to go about it.

greygoose profile image
greygoose in reply to Suesuzz

Details of private testing:

thyroiduk.org/help-and-supp...

Charlie-Farley profile image
Charlie-Farley in reply to Suesuzz

Hi Suesuzz

Your doctor is frighteningly ignorant. I took forum advice as mine is too and am now well thank to the forum Ali e no contribution from the GP.

My hair was falling out when under medicated . I have been plagued this year by loads of little hairs on my head, about a years worth of growth - which I am extremely grateful for. Please read my journey on my profile. I’ve written it’s an insight for others. I’ve also written some posts - one on my hair. I’m just under 15 stone and , using NHS guidelines calculated the POTENTIAL optimal dose as 150 µg of levothyroxine. It is a guide I cannot emphasise this some enough. I was luck it worked for me.

We are all different. Need to look at your own situation and you also need to understand your GP knows absolutely ‘nack all’.

Re the tests- so important to getting well.

I’d you but discounted and actually carry out test beginning of the week so samples don’t end up sat during weekend.

SlowDragon gives good advice and her massive post with all the links marked Ty he start of my journey. Hope it does for you as well.

😊👍

Suesuzz profile image
Suesuzz in reply to Charlie-Farley

I'll have a look, thank you. I feel my doctor isn't so much ignorant more that all the doctors in the area have been taken over by a big management company and she's terrified of spending any money on patients. It's also difficult to change doctors within the group. Hopefully things will get better but surgeries in nearby areas have closed down so you feel lucky to have a GP at all.

Charlie-Farley profile image
Charlie-Farley in reply to Suesuzz

Hi Suesuzz

I know it might be comforting in a way to blame market forces for medical decisions, and they do play a part as in trying to constantly fob people off with whichever is the cheapest brand of a given medication rather than aim for consistency in care. However it really is a bad situation with lack of education on thyroid at all levels- dread the Endo who happens to be a diabetes specialist.

I’ve been reading heart breaking accounts for nearly two years in this forum- initially finding it hard to believe, until one experiences it.

GPs get one day on the thyroid. Most are not up to date with NHS guidelines- most will not know that under treatment of hypothyroidism can raise cholesterol levels, that taking statins when hypo can damage body tissues.

Even when some scientific papers are produced to refute these things - please follow the money. Not to say all literature is biased to big bucks, but when you start delving 😱.

Also GP (general practitioner) clues in the name. Sadly they think everyone who walks through their doors knows less than them. I did until I realised my GP’s ignorance had made me extremely ill. That’s when I found this forum and started getting genned up. I have (surprisingly) been able to tie several GPs in knots at our local surgery, with my still relatively meagre knowledge. Some have just given way to my requests and others tried to ‘tell me all about it”. I’ve still got my way every time and am now on optimal dose of Levothyroxine for me and I’m so lucky because I convert.

I would encourage you to read lived experience as well as a book and the odd paper. It really does not do to put one’s total faith into the GPs. The best we can hope for is one that is open and receptive or one who hasn’t the time and can’t be ar$ed to read your results and some useful scientific references you have dug up, with a summary of interpretation of results.

If it takes more than ten minutes to read and digest and looks halfway knowledgeable they might just rubber stamp and file. 😉

waveylines is on point below . The Peatfield book will be my next bedtime read I think.

Suesuzz profile image
Suesuzz in reply to Charlie-Farley

Charlie-Farley, yes, love your response, it is so true. The first I knew about Hypothyroidism was years back when my doctor said "The good news is, we know what's wrong with you, you have Grave's disease. You just have to take this tablet daily and it will be sorted...". She gave me 50mcg, the next day I nearly crashed the car on the way to work and felt so out of it I had to come home again. Then she lowered the initial dose. Several months later after feeling so much worse I kept a diary. I went to a doctor again saying I felt really bad and showed him the diary. He said very accusingly "why are you keeping a diary?" Then he said no one's making you take the tablets, you don't have to. Hence I hate seeing a doctor and get really stressed beforehand.I've read a lot on it, would so much rather go with a natural or herbal way. My GP recently offered me statins but I refused. I thought I don't need another tablet making me feel bad. 😏

Sandiij profile image
Sandiij

Anecdotal I know but I've been hypothyroid for 30 years. Hair coming out everywhere and brush full. Diagnosed b12 deficiency in July. Following loading doses of b12 hair loss is much improved. Worth getting it checked.

Suesuzz profile image
Suesuzz in reply to Sandiij

Thank you, glad you found the reason, hope you feel better it's very upsetting. I found even doing yoga my mat would have hair on it within a few minutes. Try not to let it stress me as that makes things worse, I know.

csj113 profile image
csj113

Hi and welcome to the forum. Hair loss can be caused by menopause and plummeting hormones, not sure if you take HRT? It can also be caused by low Ferritin with or without anaemia (anaemia is low haemoglobin). Ferritin needs to be over 80 to support hair (you might be told it’s “fine” over 15 but that’s an outdated view - under 50 is deficient. I’d get this tested too, the combo of thyroid disease / not consuming red meat makes it very possible you’re deficient.

Sounds like you need to get everything tested - as suggested above by greygoose .

Btw even if your GP practice is managed by a large group- can you see a different GP within the practice? Another option is to see a trichologist but tbh if you get the above tests that have been recommended done then I suspect an answer will emerge.

waveylines profile image
waveylines

Suesuzz sorry to hear of your hairloss. Hairloss is very upsetting and is linked to low thyroid levels. Given you have Hypothroidism it males sense to get that sorted first & ensure you have optimal treatment. Your GP clearly doesnt know what she is doing. Its not unusual sadly as they are taught to prescribe by the TSH. This has been proven to lead to under dosing. So its extremely likely this is happening to you. I would definately see a different GP in the practise or consider moving GP surgery. Your current one sounds like a bully. In addition I would do as Greygoose wisely suggested pay for a private blood test for TSH Ft3 and Ft4. In addition get your B12. Ferritin, folate and vitamin D tested from your GP.....make sure you get a copy of the results with the ranges (figures in brackets) you have the right copy of blood tests. These need to be well into the ranges are important co factors for effective treatment of hypothyroidism.

Male sure you have stopped taking biotin for a week before testing as its known to give false results. Ensure you do your thyroid tests first thing in the morning, fasting and take your thyroid meds AFTER the test.

Secondly you need to gain much greater knowledge around hypothyroidism. Knowledge is Power and seeing as GPs have such a low base of knolweldge around optimal treatment of hypothyroidism it will also help to arm you when you need to politely challenge back. A good book is Living with your Thyroid by Barry Durrant Peatfield.

In reality you need to take control of your health as am afraid your GP is clearly failing you. There are very knowledgeable people on here who can support you in this process.

When you get your results post back on here.

Jenonnet profile image
Jenonnet

Hi, as has just been suggested by csj113, I'd let the practice know that I don't want to see that GP anymore and I'd like to be reassigned to a different one. You don't have to see any GP you don't want to see. Good luck. 😊

annnsandell profile image
annnsandell

Hi Suesuzz, You obviously need to get to the bottom of why you are losing your hair, it might not be because of your Thyroid and there are quite a few suggestions here. A referral to a dermatologist would be good. Is this a mixed practice where you can see another GP? Or change GP perhaps? How has she reacted when you have said about your hair?

Suesuzz profile image
Suesuzz in reply to annnsandell

I've brought it up a few times over the years. She said tablets are never going to be the same as the thyroid working correctly, it's just one of those things. But it's true that it may not be caused by the thyroid, I guess, may even be post menopause as I still get hot flushes 15 years after the menopause. I'll get as many things checked by GP as possible and go private for the others.You've all been so helpful, think I'm getting a bit teary now 😔

M1ssmolly profile image
M1ssmolly

Hi, I’m sorry to read about the hair loss. As well as the advice from the other girls I do know that a Ferritin level higher than 70 is essential for hair growth and health. This is above way above the “medically normal” level. I take a supplement called Florisene from Lamberts Healthcare. It has miraculously improved my hair and my Ferritin levels. It also contains Biotin so you won’t need an additional supplement.

I hope that this helps 😊

Suesuzz profile image
Suesuzz in reply to M1ssmolly

Thank you. Will get tests done but that sounds so good.

Bhattinsami profile image
Bhattinsami

hi there , im suffering from same issue of hairloss and i have used this ayurvedic produvt ehuch help me grow new hair . i masssge my head with this oil before sleep and then take shower next day so basically befire washing your hair massage your scalp with this hair and keep it on for 4 hours . Hope this helps ..ebay.co.uk/itm/233696052671...

Suesuzz profile image
Suesuzz in reply to Bhattinsami

I'll keep that one in mind. I occasionally take ashwagandha for stress (not that I have much now apart from this!) and massage my head with rosemary oil and use sesame oil. Trying to follow an ayurvedic type diet as I'm typically high Vatta-Pitta. The whole person approach to health is so good. Have seen an ayurvedic practitioner on video read 3 lots of information from someone's pulse where our doctors just count the beats.

Hypohappy profile image
Hypohappy

Hi, hair loss is very distressing! It’s what drove me to get medical help from NHS GP. I was eventually diagnosed with borderline hypothyroidism. Was on LeVo for years. I didn’t like it, sorry it didn’t like me. I just got more and more unwell. Eventually I moved to NDT (a natural desiccated thyroid powder from pigs or cows). Although I don’t think the state of my hair has improved everything else has. Almost back to my best weight after years as a bloated mess. Good luck on your journey to good health.

Snqanq profile image
Snqanq

Hi, I got same issues since taking levo 5 yrs & half my hair has gone.. half of them, had fine thick hair before now... Frustrating 😞

Prepare for wigs 😑

Suesuzz profile image
Suesuzz in reply to Snqanq

😔❤️

Duckydoodle profile image
Duckydoodle in reply to Snqanq

Can I ask, how was your hair before starting treatment but (assuming) in a hypo state?

Suesuzz profile image
Suesuzz in reply to Duckydoodle

Hi Duckydoodle, mine was so thick the hairdresser used to always complain about how long it took to cut and dry. It was very wavey and curly as well. Now I've been putting off going as I know handfuls will come out. Now it's very fine and thin. I was lucky to start with it so thick or it would be much worse now.

BonnieG123 profile image
BonnieG123

Hi, Sue. I have no help to offer except to tell you I’m in the same boat. I use a biotin shampoo as well as take the supplement. It’s worrisome. My hair had grown long from no haircuts during Covid and I’ve just gotten it cut very short thinking less would fall out, but it’s still coming out quite a bit.

Suesuzz profile image
Suesuzz in reply to BonnieG123

It has been fobbed off in the past by some male GPS I've had. They really have no idea, because it's not life threatening they think it's not important but it causes so much anxiety.

TPOAB profile image
TPOAB

Try a liquid zinc in addition to your supplements...Lambert's Zincatest

Petalrugbaba profile image
Petalrugbaba

I agree with some others here that it may not be entirely thyroid related although it plays a part as it affects hormones. I suggest that you get your hormones tested and Sex Hormone Binding Globulin (SHBG). It could perhaps be androgenic alopecia and balancing hormones may well be helpful and using a shampoo that contains ketoconazole. Good luck.

Knip profile image
Knip

Hi Suesuzz, ask your GP for a referral to a dermatologist. It's their domain. Kx

Topes009 profile image
Topes009

Hi Suesuzz Sorry to hear about your hair loss. Something I also suffer with. I found it is caused by lowering oestrogen with the peri menopause. I was losing lots of it until taking HRT, it took a while but then it stopped falling out and started to grow baby hairs. I had to come off the hrt for a while and as soon as I did the hair loss started again. I am back on it now and it is slowly stopping again. I realise you are further along the menopause path however if you’re still having hot flushes etc then maybe worth considering HRT. The transdermal and body identical type are very safe to take. Worth a look into along with the vitamin and iron levels (I’m also low in ferritin, always am…ongoing problem with Hashimoto’s and being a veggie). Good luck with it all 🤗

Suesuzz profile image
Suesuzz in reply to Topes009

Hi, thank you, I am wondering if it is a menopause thing as well although I still have no eyebrows either, 10 years on ☹️. I put an econsult into my surgery to speak to a new Dr they have that specialises in the menopause, that was last week and they say they will contact me by Thursday. I'm hoping it won't be my normal Dr that phones me. I get very stressed around doctors so it's not a good wait. I'm guessing you can only get these on prescription, I was never given hrt as it was at the time that they wouldn't issue them due to cancer fears. Fingers crossed I can get the blood tests done otherwise I will go down the private blood tests route.

Topes009 profile image
Topes009

ah eyebrows are interesting! Have you lost all of them or just the outer areas? Losing the outside thirds is a classic Hashimoto’s symptom but you probably know that. Mine went from there at the beginning of my lovely autoimmune illness. Doesn’t really bother me as can fill in but the hair loss is something else! I did find using rosemary oil in a carrier and massaging my scalp a few times a week and leaving the oil on for a few hours helped slow the loss. Good luck with the menopause specialist. It’s maddening how many women were denied HRT due to the incorrect information around cancer risks. Thank goodness we’re back on track now.

Suesuzz profile image
Suesuzz

The out side third of eyebrows went before I was diagnosed but the whole lot went shortly after starting levothyroxine and have never grown back. Yes, I've tried rosemary oil, I'm always keen on natural treatment if possible. Sadly it doesn't seem to help me, I have heard Castor oil is supposed to be good but very difficult to wash out.

I have a daughter and 2 daughter-in-laws in their mid forties who are feeling the 1st effects of approaching menopause and I'm so glad women are getting some help now. Hopefully their experience will be much kinder.

Charlie-Farley profile image
Charlie-Farley

Hi Suesuzz

I kept meaning to add to a comment but kept forgetting- been a very taxing few weeks (won’t bore). I used NHS guidelines of 1.6 µg per kilogram of levothyroxine to work out the guideline therapeutic dose for me (now just under 15 stone, but at the time a few pounds over). It came out around 150 µg. I must emphasise- it is a guide and there are lots of factors that could interfere, conversion issues, tissue resistance, poor vitamin and mineral levels etc etc. BUT I was one of the lucky ones - it worked and those guidelines enabled me to argue to full therapeutic dose even though in range (as per my profile story).

Have you been able to establish if you are under medicated? It’s a starting point and then a process of elimination there after.

Hope all goes well 😊👍❤️

Suesuzz profile image
Suesuzz

thank you, that's interesting, mine works out right at 100 dose that I'm on. Eventually got a reply from the doctor today by email, she agreed to some of the blood tests (a barrage of test requests) that I asked for so will get them done next week. Foliate, ferritin, B12, Vit d, kidney, liver, bone profile (never had that one) diabetic, cholesterol and of course TSH. She also suggested anti anxiety tablets for the hair loss, so I'll still have hair loss but I guess I won't care 🤔. Anyway it's a start. No hormone tests or hrt but I didn't really expect them.

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