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.
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Suesuzz
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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)?
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.
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.
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.
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.
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.
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!
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 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. 🙂
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!
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.
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
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.
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.
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.
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.
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. 😏
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.
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.
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.
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.
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. 😊
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?
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 😔
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.
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...
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.
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.
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.
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.
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.
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.
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.
Try a liquid zinc in addition to your supplements...Lambert's Zincatest
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.
Hey Hidden , 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.
You're both right Hidden . 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... or 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.
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 🤗
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.
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.
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.
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.
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.
Sorry Hidden (You use @ then the person's name to tag and as you're typing suggestions pop up, you click on the right name) That's the link sorted now.
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