I know there are some brilliant thyroid experts on here from what I’ve read and I’d be so grateful if anyone can give me a bit of advice!
I’ve suffered hair loss ( very thick curly hair previously) and fatigue for 13 years, which worsened at aged 30 ( I’m now 43) as soon as I stopped taking combined pill, Yasmin. Since then I’ve been on a long quest to find the cause of my symptoms. The most awful one being my hair loss.
I had previously very low everything until about 3/4 years ago but have in the last 1-2 years visited a trichologist who has helped me get the levels up so these are now:
Ferritin ;74
B12; 344
Folate; 24
Zinc: 16
Vitamin D: 103.
My TSH was 3:61 and free T4 was 10.6. ( March 2020)
Back in November 2019, I had a full thyroid panel done privately through my trichologist which showed no antibodies, TSH of 2.11, free T4 of 12.9, free T3 of 3.3 and reverse T3 of 1.6
What I’m interested to know, is if it significant that previous thyroid readings from around 2010 showed a lower TSH ( it ranged from .99 to 1.5) but also free T4s that were between 8.5 and 11.5. I’m not quite clear about what I’ve read, but whether this pattern indicates a pituitary issue rather than thyroid itself.
I’m also anxious to know if the levothyroxine is going to help my situation ( and cure my hairloss!)
Thank you so much in advance everybody!! X
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Supermisshelen
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To be able to interpret your results, we need the reference ranges that come with them. Cany you please add them. If you have a print out of your results they should be at the side, possibly in brackets.
Also, what is the unit of measurement for B12 - pmol/l or pg/ml or ng/L?
B12 - 466 ng/L. (130-800) ng/L is the same as pg/ml
This would be better higher. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
I have since been taking b12 on empty stomach to get it up.
What form of B12 are you taking? The recommended form is sublingual methylcobalamin and as it is absorbed sublingually it bypasses the stomach so it can be taken any time (although no later than lunchtime is suggested because B vitamins can be stimulating).
When taking B12 we also need a B Complex to balance all the B vitamins. Your folate level is over range, do you take a B Complex?
Zinc - 16 umol /L (11-24)
This might be better a little higher. I believe zinc should be half way through range.
Vit D is OK, the recommended level is 100-150nmol/L and ferritin isn't too bad, although it is recommended to be half way through range. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth and the optimal ferritin level for thyroid function is between 90-110 ng/ml.
I’m also anxious to know if the levothyroxine is going to help my situation ( and cure my hairloss!)
I have been taking levothyroxine only for the past 7 days, 50mcg
Has your GP prescribed Levo? In the UK GPs generally wait until TSH reaches 10 before diagnosing hypothyroidism and prescribing Levo.
Your results do show that you are on the way to hypothyroidism (some countries diagnose it when TSH reaches 3).
It takes about 6 weeks for the full effects of Levo, you should be retested at that time and your dose increased then another test 6-8 weeks after the increase, then repeat until your levels are where they need to be for you to feel well. The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
If your hairloss is caused by hypothyroidism then it may improve when thyroid levels are optimal.
What I’m interested to know, is if it significant that previous thyroid readings from around 2010 showed a lower TSH ( it ranged from .99 to 1.5) but also free T4s that were between 8.5 and 11.5. I’m not quite clear about what I’ve read, but whether this pattern indicates a pituitary issue rather than thyroid itself.
It's not possible to comment on that without the reference ranges for those tests at the time. If there is a pituitary issue (Secondary Hypothyroidism) the TSH can be low, normal or minimally elevated with low FT4, i.e. below range or at the very bottom.
Thank you this information is really good and the article about deficiencies as well.
I am taking a b12 of methylcobalamin 1000mcg which I just take with water first thing in the morning ( I take the Levo last thing at night to ideally help me wake up more in the mornings but no luck so far but as you said, I have to wait a few weeks).
The b12 are very small-should I just put them under my tounge instead?
I’m also taking a good strength multivitamin by brand inessa and that does have Around 30mg-50mg of B vitamins B1, B2, 3,5 and 6, looking at it.
I do realise that I’ve been prescribed the levothyroxine quite early on but I did have the discussion a while ago with this very helpful doctor, passing on what my trichologist ( that TSH of over 2 with hair loss should be looked at more closely) had said and also there was a pattern with my blood tests of TSH creeping up and T4 staying low and recently going lower.
Incidentally, my neutrophils very often come back as below range, which the doctor just monitors, but I am in no way someone who picks up bacterial or other illnesses easily. I take a pre/probiotic each day now too.
I’m guessing from things I’ve read you would feel the T4 is low? I’m going to keep getting the other levels raised a little more but if there’s anything else I should do, I’ll get on and do it!
The b12 are very small-should I just put them under my tounge instead?
That sounds like a sublingual lozenge. What brand are they and does it say sublingual on the bottle? If so you should let them dissolve under the tongue.
I’m also taking a good strength multivitamin by brand inessa and that does have Around 30mg-50mg of B vitamins B1, B2, 3,5 and 6, looking at it.
Multivitamins are not recommended for a variety of reasons, typically because they include things that we should be tested for first and only supplement if found to be deficient. This one isn't the worst I have seen, at least it doesn't contain calcium and iron, but it does contain iodine and this definitely should be tested before supplementing. Iodine solution used to be used to treat hypERthyroidism and can make hypothyroidism worse. It also contains 30mg B6, as well as 2.5mg of activated B6, and for regular use the maximum amount of B6 is said to be 10mg.
It also contains 500mcg methylcobalamin and together with your separate methylcobalamin this gives you 1,500mcg daily. For someone who has a high B12 level, you don't need to supplement with a separate B12. As you already have an over range folate level too I would now stop both this multivitamin and the B12 supplement and have a break for a couple of months. I would then restart just a B Complex with just maintenance doses of the vitamins and I would consider Igennus Super B complex and just take 1 tablet a day, this will give 200mcg methylfolate and 450mcg methylcobalamin and I think this will be enough.
I’m guessing from things I’ve read you would feel the T4 is low? I’m going to keep getting the other levels raised a little more but if there’s anything else I should do, I’ll get on and do it!
You have been on Levo for one week, it hasn't started to be effective yet. As I said before, the aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Ensure that your GP follows the protocol, retest 6 weeks after starting Levo, dose increase of 25mcg, then another test 6-8 weeks after the increase, then repeat until your levels are where they need to be for you to feel well.
I have been through two lots of extreme hair loss and the last time I had to have hair extensions to make my hair look thicker. If your thyroid levels are not right you will continue to shed hair. Most people feel well when their TSH is 1 or lower and their T4 and T3 are in the upper third of the range. Also I was told that ferritin needs to be above 80 for hair growth. I do know how stressful this can be and at one time I was losing hundreds of hair a day and I thought I would go bald. My hair has now been growing back for a year and although it is not as thick as it once was it looks ok. I am 60 btw and when this first happened I was 47 and my GP said it was because of my age which was rubbish! One of my elderly relatives is in her 80s and has thick hair. Just to add I now lose about 3 hairs a day which is a normal amount for me. A dermatologist once told me I had female pattern baldness and told me to use Regaine. I feel like going back to her and asking for my £150 back because she didn't spot I had thyroid disease. To be fair not a lot of doctors know a lot about it and that is why I went undiagnosed for over 2 years.
Hi Lora7again! Thank you so much for telling me about your story, as it’s really interesting; I’ve had similar, never been told I have pattern hairloss but just about everything else and that I just have to live with it etc etc. The doctors just don’t know about the hairloss connection at all do they. I don’t understand why in my connection at bothbs Trichology training clinic years ago and a trichologist I went to 2/3 years ago, why thyroid wasn’t mentioned. Or would have been very useful , as I dismissed thyroid problem years ago with the standard ‘normal’ response back from The GP.
Do you continue to take levothyroxine to keep your levels correct? I know exactly what you mean about a few hairs a day.. nobody ever believed me when I said that used to be normal for me too. I’m hearing that too about T4 ( and T4) levels needing to be in the top quarter of ref range and along with getting vitamin and mineral levels up, I’m going to aim for this now. I wish I knew what my levels had been before taking the pill all those years , just to compare!!
I don't take anything at the moment because I am in remission. The first thing that happens if my levels are not right is my hair starts to drop out and my nails lift off their nail beds. I was actually was losing hair for about 3 years continuously and it was very everywhere. I would be constantly sweeping and vacuuming it up. In the end I paid Lucinda Ellery a lot of money for hair extensions because it was so distressing. When it happens again because I know it will I will probably not pay as much as I did (£800) but get my hairdresser to put some extensions in. Whenever I see a middle aged woman who has thin hair I always look at her neck to see if she has a goiter like me. I know low vitamin D can make it worse so I use the BetterYou vitamin D spray. You can read my story on my profile page if you are interested. I think once you have your levels right your hair will grow back but some people with thyroid disease can have other autoimmune conditions which can also cause hair loss and they unfortunately never grow their hair back. I think hair loss is one of the most depressing symptoms of this horrible disease.
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Thanks slowdragon.. I wouldn’t have known that. I don’t know if it’s relevant, but my WBC has increasingly with age come back a bit out of range, it's the neutrophils mainly. The doctor can’t explain it but does like to monitor ( retest).
Would the treatment for Hashimotos still be the levothyroxine?
High WBC could be due to inflammation of Hashimoto’s or other autoimmune disease like arthritis
Do you smoke?
Apparently can also raise levels
Hashimoto’s (Autoimmune thyroid disease) is by far the most common cause of primary hypothyroidism
Frequently starts with transient hyperthyroid results and symptoms when thyroid initially comes under attack and cells break down releasing excess thyroid hormones
Also I am virtually dairy free and on advice of trichologist and also try to eat more good proteins. I eat organic chicken maybe once a week but do still have soy products maybe 2-3 times a week. Fish once a week
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
As someone who has Hashimoto and Alopecia Areata (patchy hairloss) I can tell you unfortunately that taking T4 probably won't stop the hairloss I am taking levo 13 years now and I get hairloss on and off throughout the year constantly. What I will say as stated above by other posters is that when you vitamin and mineral levels are low particularly Iron and Vitamin D it seems to make the hairloss.
Alopecia is autoimmune so sometimes there is no reason or cure for it as I have unfortunately found. when my levels are good my hair is better but I can't control the hairloss. f your hair is thinning rather than falling out in patches it may regrow with treatment. fingers crossed it all grows back for you
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes 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, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Hey SlowDragon I've been tested for cealiac as my sister is one but mine was negative also did gluten free for a year but didnt improve anything in terms of Thyroid or hairloss unfortunately.
I don't eat alot of bread and things that contain alot of gluten in general but I've never felt it had any affect on me either way.
I wish you good luck with this Supermisshelen! I had a sort of opposite experience with hairloss. For me, hairloss happened from levothyroxine overmedication. It came out in bunches until I decreased my dose. When a doctor increased it again, the same thing happened. Then, even though after some days I decreased it again, the hairloss continued for a few months until I eventually switched to NDT and the hairloss decreased significantly, even though I'm still not optimised. Not everyone responds to levothyroxine in this way, but I thought you might want to have this in mind.
I have been hypothyroid since 2005 and on levothyroxine ever since. I was initially tested because all my hair fell out and it has not reappeared: so I have now accepted that it is highly unlikely my hair will re grow and in some ways my acceptance of this, has made me feel a lot better. This doesn’t mean to say that will be your experience as it seems from this forum that everyone is different
I’m so sorry to hear that. I think you’re right and acceptance is important too. I’m going to try a few other things as don’t want to give up yet, but it’s certainly a life changing thing I have found
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Hashimotos/Hair loss
Alarming hair loss happening
Levothyroxine hair loss
Losing my mind - please advise!!
