Got diagnosed with Hashis in June 2020. Thought I’d gotten away without hair loss, but I didn’t realise that my parting getting bigger and bigger and the back of my head hair getting thinner and thinner was hair loss. More fool me. I put a mirror up to the back of my head today and just crumpled. I never thought it would effect me this much put I feel like it’s just tipped me over the edge. The fatigue, the muscle and bone aches, the brain fog and now this hair loss.
To have doctors telling me I’m subclinical and if I didn’t have symptoms they wouldn’t have treated me, and there’s me with my flipping hair falling out. It’s like they don’t think it’s that serious but it’s effecting my work, by life outside work, and now my pride.
I am so tired of all the mixed messages. “Just wait for the medication to work and then if you still have symptoms we’ll test other things”, and then there’s doctor Wentz saying I have to stuff myself full of pills and her complete system costing around $200. I can’t afford to pay for tests and then pay for all these supplants. And there’s the NHS saying supplements don’t work. If I’m strapped for cash I can’t be paying for something that does nothing, I can’t even pay for it if it does something 😥.
Here are my tests so far. I asked for B12, folate, ferritin and Vit D but they said no because I was in range in all the last tests. They also don’t test T3 because apparently the healthy range is not proven and if they over medicate it can cause heart problems. So they won’t do that one for me either.
17 June 2020
- Ferritin - 56 ug/L - normal range 15 - 445
- Vit D - 89 nmol/L - normal range not known
- TSH - 13.4 mlU/L normal 0.27 - 4.2
- T4 - 15.1 pmol/L normal 12-22
10 Aug 2020
- Anti thyroid peroxidase - 256 iu/ml normal <34
- TSH - 7.53 ml/L normal 0.27 - 4.2
- T4 -16.2 pmol/L normal 12-22
17 Sept 2020
- Anti thyroid peroxidase - 288 iu/ml normal <34
- TSH - 1.84 mlU/L normal 0.27 - 4.2
18 Dec 2020
- TSH - 11.5 mlU/L normal 0.27 - 4.2
- B12 - 579 ng/L normal 18 - 900
- Folate - 12.6 ug/L normal 2.5 - 19.5
- Anti TTG - 1 U/ml normal not known
- T4 - 17.2 pmol/L normal 12-22
Medication:
June - 50mg Levo
Aug - 75mg Levo
Dec - 100mg Levo
Also take the contraceptive pill Yasmin and this month started taking a Vitamin D supplement after watching a BBC documentary that said the NHS recommends we all take one as we don’t get enough sunlight.
I am gluten, dairy and soy free. I don’t drink alcohol often but if I do the plan is to stay within my units cuz then I feel fine. Whereas if I go over and toxify my liver I always feel horrific. Like not a hangover but almost like I’ve brought a Hashis episode on. So I’m wary about drinking now.
I tried doing the Dr. Wentz AIP diet but I’m just not comfortable eating that much meat. I’ve been vegan and vegetarian for so many years it just doesn’t sit right with me. But I am eating pescy now with the odd bit of chicken and I do eat plenty of eggs so am getting complex proteins and B12 and what not. I’m also going to try and eat one steak a month to get what I need from that. In Dr. Tim spectres book he says pescy with one steak a month is sufficient to give us what we need.
I do slimming world which has helped me lose two stone and counting. That diet reflects the NHS guidelines.
I am hoping that if I get TSH in normal range and keep it there everything else will fall into place. I’m willing to try things but I just can’t afford to spend much money 😬.
Has anybody had hair loss and then had it grow back after getting TSH in range, without going on the paleo diet and taking loads of supplements?
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Flowerpot108
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I am so sorry that you are going through the mill. The hair loss is awful, isn’t it? The short answer to your question about hair, from my own personal experience and nothing else, is no. But let me caveat. First, you sound like you’ve been doing a lot of research, so apologies that I am probably going to tell you some things you already know... I hope that is OK!
So, hashis causes low stomach acid and therefore poor vitamin uptake from food. Going DF, GF and SF like you have done is an excellent plan for remedying this. I’m no expert on vitamins, but once I went GF my absorption seemed to get better. Iron is one of the key vitamins for hair. So, having your ferritin above a certain level will prevent it falling out and having it higher still will promote regrowth.
So, my experience. I saw that ferritin was within range but low and worked hard at supplementing it. I read responses to other people’s posts and learned to take my iron supplement at a different time to any other medication. Finally, my hair has stopped falling out after about 6 years. The last couple of times I washed my hair I didn’t get this awful web of dead hair around my hands. Hopefully it will start to be the unruly thick heavy ponytail-band breaking mess it ever was at some point!
I did it wrong, mind and was a bit reckless adding iron without doing a more comprehensive test! So, the advice would be to do a full iron panel test privately before supplementing. You can get a customised test on Thriva, so that you could just pay for this and a full thyroid panel to get T3 whilst you are at it, or whatever combination of vitamins best suits where you are. This way, at least you getting value for money. I have ordered iron, vitamin d and the thyroid stuff for my next test. I don’t have any affiliation with the company, but like that I can customise the test as I am a skinflint and don’t want to pay for things I don’t need.
There are also a number of secondary illnesses which can cause hair loss (PCOS springs to mind). Obvs my GP tested for all of those and and looked a bit confused when they all came back negative, and looking at your ferritin and recalling my own experience, I suspect this may be your culprit. If you search around there have been a few threads on this specifically in recent days, so you might pick up some ideas and information. And hopefully, if she hasn’t appeared whilst I have been typing, SeasideSusie may be around. I have been particularly paying attention to her advice on other threads regarding vitamins, as I find it all a bit of a minefield!
Thank you very much that’s really helpful!I suppose it’s more expensive at first when you’re testing lots of things, and then once you get to the right levels on things you just have to do a test every so often to make sure you’re within range still.
Yes, the way I see it the NHS can test vits once a year and I will use private testing on the ones which they felt were in range, but I felt were low and am busy taking in larger quantities to get to an optimal level. I guess I’m worried not to over do it on iron and vit d, as it is possible, and need to test TSH, T4 and T3 anyway...
I think your Ferritin is too low and when I had extreme hair loss I was told on a hair loss site that it needs to be over 80 for hair growth. I ate pate twice a week and took Spatone to bring my levels up. Also the hair you are losing now is from what your levels were 3-4 months ago because of the hair cycle. I found that when my levels were either too low or too high my hair fell out. Hair can also fall out when thyroid levels are moving either up or down so once you are on a established dose the hair loss should stop. I have had two lots of extreme hair loss both lasting a couple of years and I lost about 50% of my hair both times. Luckily both times my hair has grown back and I now lose about 3 hairs a day instead of 100s. I do know how distressing it can be and the last time it happened I had some hair extensions put in which helped me cope with the loss of my hair.
To be honest I might get extensions if this continues that’s a really good idea. I just can’t handle feeling ugly at the same time as feeling sick 😅 used to have a such big curly hair, and I noticed it was limp and fine now but very shocked to see such a large amount of scalp!
I got my extensions at Lucinda Ellerys which was very expensive and I think you can get them a lot cheaper from other hairdressers. Of course all of the hairdressers are shut at the moment unfortunately. I have just done my own roots and cut my own fringe with help from my son 😁
Yeah that’s the problem isn’t it! I could do with a cut to give my hair more volume, my mum did mine last time and it got rid of the split ends but she can’t really feather and layer 😂 fair play on your son, and on you for doing the fringe, oh my gosh. If I tried to do that goodness knows what is look like! 🤣
Were you taking 100mcg Levo when this test was done, or 75mcg and you were increased to 100mcg on the strength of these results?
Your TSH result of 11.5 shows you are very undermedicated, pity they didn't include at least FT4. That result points to an immediate increase of 25mcg and retest in 6-8 weeks, and because it is so high I would expect at least a couple of further increases in Levo over the next few months. Make sure that you are retested 6-8 weeks after any dose change to see how your levels have altered and whether any further adjustment is necessary.
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.
Looking at the very big difference between your September and December results, I imagine your Hashi's is possibly affecting things and you maybe had a Hashi's swing.
Do you by any chance take Biotin or a B Complex? If so, did you leave it off for 7 days before testing? Biotin can cause false results when the lab also uses Biotin in the testing procedure (most labs do).
B12 - 579 ng/L normal 18 - 900
This isn't too bad but I'd want mine 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 (or ng/L) 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 (or ng/L)."
Taking a good quality, biovailable B Complex will help raise your B12 level if it has a decent amount of methylcobalamin, have a look at Thorne Basic B or Igennus Super B.
Vit D - 89 nmol/L - June 2020
This month started taking a Vitamin D supplement after watching a BBC documentary that said the NHS recommends we all take one as we don’t get enough sunlight.
It would have been a good idea to retest before supplementing.
How much D3 are you taking and which supplement, i.e. brand, tablet, capsule, softgel, etc? I like Doctor's Best D3 softgel, it is oil based which aids absorption and is a good, clean supplement with no excipients, just D3 and extra virgin olive oil. Some people with Hashi's use the BetterYou spray, I don't like this as it has a lot of excipients.
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L.
The amount you take should be based on current level (which is usually lower in winter than summer) with the aim of achieving the recommended level. We should retest 3 months after starting to supplement and once we have achieved the recommended level then we change to a maintenance dose and we should test twice a year to ensure we maintain that level as we very likely need more in winter than summer.
There are important cofactors needed when taking D3.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
I like Vitabay or Vegavero K2-MK7 and because it's cheaper I tend to buy the 200mcg dose tablet and take one alternate days (I take D3 daily), as 90-100mcg K2 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
As for your hairloss, I'll paste below a reply I made to another member yesterday:
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. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
Vitamin deficiencies can lead to hair loss so maybe worth checking them out:
Oh gosh there’s such a lot to look into! One thing at a time is good as you say for checking about reaction but also is a bit by bit hit on the purse and more manageable mentally.
I only take levo 100mg (they upped after results in Dec) Vit D3 1,000 IU and the contraceptive pill at the moment.
as it can reduce the amount of levothyroxine in your body. If this is the case you should speak to your doctor, you may need to increase your dose of Levo. In any case, take it them 4 hours apart at least.
When I run out of my current VD3 I’ll buy this one which is the one you found was good right? I need to spread out the cost a bit so putting this one in pending will help 😅.
Calcium Supplement Vegavero® | Natural | for Bone Health* | with Vitamin D3 + Vitamin K2 MK7: The Best Combination | Vitashine™, vitaMK7®, Aquamin™ | 180 Capsules | NO ADDITIVES | Vegan amazon.co.uk/dp/B07WH1HVJC/...
I also ate a steak 🥩 tonight and will try and find some liver to have this weekend.
Magnesium hydroxide is not a good choice. It is magnesium oxide mixed with water. It is used as a laxative, poorly absorbed and not for long term use.
The links I gave you previously go through the different forms of magnesium and what they are suitable for, make sure that you go for one listed under the "best" forms.
The Vegavero supplement that you have linked to is a calcium supplement with added D3 and K2. You definitely don't want calcium. You want D3 and K2-mk7. I use a separate D3 softgel with either Vitabay or Vegavero K2-mk7.
Oo yeah I searched magnesium malate but didn’t clock that that one wasn’t. How about this one?
Magnesium Malate Capsules (420 Count) - 1,500mg Per Serving (Magnesium Bonded to Malic Acid), Third Party Tested, Vegan Friendly, Non-GMO, Gluten Free, Made in The USA by Double Wood Supplements… amazon.co.uk/dp/B083QPN3DR/...
If magnesium malate is the one you think is best suited to your needs then that seems OK.
However, note that the "serving size" is 3 capsules which gives 225mg "elemental magnesium".
The amount of elemental magnesium suggested is usually between 350-450mg. Not all brands declare the amount of elemental magnesium, we have to be careful about that.
You may want to stick with the 3 capsules if you decide to buy that one, it's up to you.
FS Magnesium Glycinate Capsules | 1250mg of Glycinate Providing 250mg of Pure Elemental Magnesium Per Serving | 90 Vegan Caps | Magnesium Supplement | Non GMO, Dairy & Gluten Free | Made in The UK amazon.co.uk/dp/B07MZXN9V5/...
If I took two of these and got 500mg would that be bad? Struggling to find one on the good list with the right amount of elemental.
Well originally malate because it’s good for fatigue and I definitely don’t need a laxative effect, but I can’t seem to find the right dose of elemental. So I looked at the list again and thought glycinate looked good because it’s the least likely to induce diarrhea and is good for long term deficiency...
Ah ok so separate K2 gotcha! This is why I’m running them past you sorry 😅 who knows what I’d end up buying left to my own devices. So is this one of the ones you take?
Yes, Vitabay is the one I use. It's a very good one and has the correct form of K2-MK7 (all trans form and zero cis form, not many brands use the all trans form).
Low iron and/or low ferritin frequently linked to hair loss
Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia
Never supplement iron without doing full iron panel test for anaemia first
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.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Thanks for all your help with the nutrients SeasideSusie ! If you get a chance to look at these that would be great. I suppose looking at them myself I seem to be lower range for some. Probably as a result of not eating red meat or liver for instance whilst being on a pescatarian diet. If I eat those once a week each that should crack it right?
Yeah I guess i need to look into T3. My GP won’t. I’m getting a second opinion through my work healthcare (which is minimal and doesn’t cover testing) to see what they say on tests, treatment and diet, but if they don’t reccomend anything, I’ll do what everyone says to on here and I’ll bite the bullet and divert some of my savings to tests and treatment.
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Hashimoto Question
Any idea what’s going on?
Results back, GP says 'normal' and no increased Levo needed, gutted... 
Thoughts on recent hypothyroid blood results, please!
Mulling over latest results - do they suggest poor conversion?
