This question may have been asked before, if so I’ve missed the response. About two years ago my hair started falling out. I’d been in hospital with blood clots in my lungs so I put it down to ill health at that time. Sadly, it has continued and worsened. I’ve spent a small fortune on lotions and potions to no avail. My GP tested my bloods for pretty much everything and the results were normal. That in itself was reassuring in one way as I thought I might cop some flak for SI.
I’ve never been so glad I was born with a mop of curls as it hides the problem well. Could upping my B12 help with this problem? I know hair loss comes with age but this is more than that I’m sure. Any advice will be gratefully welcomed. Thank you x
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When my symptoms were at their worst, I was losing hair. This stopped after several months of getting enough B12.
Might be worth posting any thyroid results on Thyroid UK forum on HU as hair loss can be associated with thyroid issues and it's possible to have thyroid issues with normal range results.
Many on here have thyroid issues as well as PA/B12D.
"My GP tested my bloods for pretty much everything and the results were normal. "
Have you checked all your blood test results yourself?
I’ve never been given a copy of my blood results but intend to go to the health centre and ask. If anything looks low, I’ll know where to come and ask for info. Thank you so much x
I went to the health centre today and was given a copy of my results. Some of them were no surprise, my red blood cells are too big, my white blood cells aren’t quite high enough due to AI conditions. I know I have a compromised immune system. However, my B12 was 1328 and my Ferritin was 64, thyroid TSB 1.70, Free T4 13.4.
Is my B12 level unacceptability high? Should I take a Ferritin type supplement? Are there any other results to be concerned about. I’m incredibly tired at present, unable to think things through properly and still worried about my hair☹️ Any advice will be gratefully received x
My understanding is that your levels would be expected to be high as you're on regular B12 injections.
Watch out for health professionals who don't understand this...there are forum members who have had their injections stopped because their levels were high.
Why were they testing your B12 level?
My understanding is that there is no need to test B12 levels once treatment has started.
Sadly I too have hair loss. Although most of my other B12 symptoms have resolved my hair isn't getting better. I now have to wear my hair in a ponytail with a large hair band which helps conceal my hair loss. On the up side I am saving a fortune on hairdressing.
I’m not saving money on hairdressing as I’m buying really expensive items that are supposed to help hair loss. I’m not a great lover of hair salons at the best of times. Thank you for your reply, it helps to know I’m not the only one. I’m going to step up my SI’s too, it might just help x
I tok had significant hairless mainly crown and back.I'm left with a very irritableitchy dry scalp but the hairdresser said today the hair growing back is doing well .
(I did well going ,noise bright lights!!
Didn't cycle though . That's how i used to get there )
I've alot of hair which is helpful.
My hairloss seemed triggered not only by b12 def. But ferritin level dropping.
This also happened to one of my daughters that doesn't have b12 / folate deficiency .
So although your blood in range which is great .
Look at your ferritin level.
Again thd bottom of range is very low ? 10.0-307.0 ug/L
I wax told to keep it above 50 ,better still 70 ug/L
My daughter was told the same .
We both felt better when reached nto the 40's
Inflammation in the body can raise ferritin levels do doesn't exclude iron def.
Thank you for your response and the info. it contains. I will pop into the health centre and ask for a copy of my blood results. I don’t know what they’ll say but if you don’t ask you don’t get. Like you, I’ve lots of hair but it’s very fine. I’ve only got half the volume I had two years ago though and it’s continues to worsen. I’m fed up having to unclog the hoover, shower drain etc.
Well done on attending the salon, I find that stressful too.
Hi sorry to hack your thread but can relate completely too this as I too had/ have hair loss .. my ferritin was 7 and like you with tablets always got back up to just above range however would always drop again shortly after !! I have however noticed that since I’ve been si eod my ferritin has stabilised .. I don’t know the logistics of it but it seems to me that without the correct amount of b12 my body doesn’t seem to be able to hold onto the ferritin
Thanks for your message. I have just had more bloods taken and straight after I bought myself some iron tablets which I will stay on for a while and increase my b12. Cheers 😊
It sounds like you need a full iron panel, if you've not had one already, to get a complete clinical picture. Significant iron deficiency in my opinion. I recently had an infusion and my ferritin was 30!
I had more bloods taken two days ago which I believe was a full iron panel. Waiting on results.After lots of research it is clear based on my symptoms that I am iron deficient.
My ferritin was abnormal last year but no investigation was done and I was told to take ferrous sulfate for a month and once levels increased told I was OK. Obviously I wasn't OK as those levels have dropped again and this time round I'm more symptomatic. The chest pain and breathlessness was the final straw for me.
It really makes me sad how a Dr can ignore symptoms and go off a range when we are all different.
I honestly thought I was going to die this past few days.
I have started taking iron tablets before my results come back in as it's obvious I am deficient and I now need the help of the Dr to find out why.
I have also asked for my folate to be checked and ordered new b12 ampoules in case what I have is not working properly
I also have hair loss and also have wasted money on lotions and potions which do nothing. I received the same advice as you, which was, get your ferritin above a certain level (some say 50, some say 100) and thus far I haven't managed to get mine above 27. If you do find that low ferritin is behind your hair loss, there is a useful blog from another Healthunlocked member on iron supplementation here: helvella.blogspot.com/p/hel...
Along with PA I also have Coeliacs, Type 1 Diabetes and Pancreatic Exocrine Insufficiency, so a lot going on that affects my digestion of nutrients. Once I am started on digestive enzyme supplements for the PEI I am hopeful that I'll be more successful in getting my Ferritin level up and that my hair will grow back. Best of luck to you.
It took about a year for me to maintain ferritin levels and hair growth better. Scalp remains dry and itchy though.Like you tried alot of treatment shampoos ,oils and moisturising shampoos.
No dandruff . Nothing to see . Just random lumps under the skin that itch .
May be scalp nerves ??
My most irritating but minor complaint.
Seems alot worse though if head pains or vestibular problems worse.
So all part of it .
Doctors over the past few years don't seem to think this.
One prescribed ? Bettercap then a dermatologist seen for something else said be cautions and try everything else first ?
For me this is one of the worst symptoms. A couple of years ago I was experiencing alot of shedding and Endocrinologist arranged to have my Zinc level checked and I was below range. After a short course of Zinc prescribed by my GP. Hairloss greatly reduced.
More recently though my hair loss has become much more extensive especially on my scalp. I had to resort to wearing a hair topper. Surprisingly none of my friends or family even noticed. At the same time my Ferritin was just in range.
I then arranged to see a private Trichologist who suggested I might have Lichen Planopilaris! However following a review by private Dermatologist and scalp biopsies he diagnosed female patterned hairloss??? He requested that I take 3 months of Ferrous Sulphate and my treatment options were Minoxidil or possible hair transplant.
The Naturopath is not convinced, feeling that once my ferritin level improves and I am successively treated with NDT (currently titrating dose), my hair growth will also improve.
Currently I am waiting for my appointment with my Gp to have my Ferritin, Zinc, Copper and selenium blood levels checked. My Zinc level is now over range? I have Hashimotos and Pernicious Anaemia ( self inject eod). Definitely worth checking your thyroid status.
Like you I had alot of curly hair and after a couple of months using daily Minoxidil (initial hair shedding was a bit scary) I no longer need the hair topper and my hair loss is back to 'normal'. I style my hair differently and fill in any areas where you can see my scalp with a little hair fibre. I have spent alot of money getting to this point!
Thank you Divine. There’s something about losing your hair that is very worrying. I’m sorry you had to go through so much. It’s never easy with AI conditions, never a straight forward answer. I’m definitely going to investigate all the different blood levels and not just accept that they are within normal range.
B12 needs folate to do its work so will use up folate levels in your body. Folate is essential for hair, nails and skin so you probably need some folic acid. Its not going to give you cancer either - that was a scare caused by a bad bit of unscientific reporting.
My hair is thin and fine anyway, but when I was first diagnosed with B12 two years ago I noticed it was coming out in handfuls. This improved with injections from the GP and then SIs. At the beginning of the summer I went through a very stressful experience, and even though I hadn't reduced my injections, all sorts of symptoms started to return. I immediately increased the frequency with fairly quick improvements, apart from the hair loss which started a few weeks later and hasn't yet stopped. I'm thinking that we need extra B12 when we're under immense physical or mental stress, and stress can also directly cause hair loss. Because of the growth cycle of the hair, this symptom is delayed.
In the meantime, I've changed my hairstyle and am finding Toppik hair fibres very effective at disguising thin areas on the scalp. There are a lot of cheap fakes that don't work (I know, because I've tried them) so I've got a bottle from the Toppik website which should last me a good few months.
I take a multi vitamin with iron, but reading these posts, I wonder if I need extra iron, as my iron serum levels tend to get low anyway. I am NOT going back to my GP unless I absolutely have to. Fed up of being patronised by people who know less about it than I do, and try to persuade me my self-injecting is just a placebo. I honestly don't know where I'd be now if it weren't for this forum and the PAS.
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