Continuing hair loss 15 months after starting injections

[A-A1]

Hi Everyone

I was diagnosed with PA back in 2012 after a few months of extreme tiredness, mental fog, forgetfulness and hair loss. I was started on injections and my GP has been really supportive with this. I have been having regular injections since and all my symptoms apart from the hair loss have gone. I feel back to normal however my hair is still falling out and getting worst. I used to have very thick hair and now I am beginning to be able to see my scalp. My hair has really thinned out.

My GP has carried out various tests Thyroid, Zinc, Selenium and they are all normal.My ferritin levels were on the lower side of normal (15) therefore I was started on Iron tablets which I have been taking religiously for 5 months now. I was referred to a dermatologist, but they have just said to continue with the Iron tablets and didn't suggest anything else. My B12 levels are now >1000.

I was just wondering if anyone else has had a similar experience and whether there is anything else I need to look at. I have never had my folate levels tested so I was thinking of asking my GP to do this when I next see her. Is this just the PA and there is nothing I can do about it? I am a 32 year old women so it is quite distressing.

Any help would be much appreciated

Thank you

[engels]

How frequently are you having the injections and which form of B12 are they?

[A-A1]

I am having injections 3 monthly in the form of hydroxocobalamin. Do you think I might need more frequent injections?

[engels]

It's quite possible. Many of us do not cope well on 3 monthly hydroxo injections. Unfortunately the only way to find out is to try more frequent injections and see what happens but most GPs are extremely unwilling to do that. I have read that low folate can also cause hair loss so I would push your GP to test your folate level. It should really be checked as a matter of course whenever B12 and/or ferritin are tested.

[Hidden]

Hi,

Taking a good multi (B) vitamin may help as all B vitamins need each other to be metabolised. I have to say that in my case B12 treatment has improved my hair. But other B vitamins are good for hair I believe, giving loads of one vitamin can deplete other vitamins, so its important to try to keep some balance, getting folate tested very worth it as often after B12 treatment has started the folate supply is "used up" say. Iron def gives me dry brittle hair, so all vits and minerals can be playing a part if deficient.

I hope this helps,

Kind regards,

Marre.

[Krealan in reply to Hidden]

I took a multi vitamin b-complex once and my skin got insanely bad, is there a danger with supplementing lets say 28mg of iron a day .. in the process of having my ferritin levels checked and my folate.

What would be a normal range for ferritin and folate?

I've recently purchased 28mg tablets and I read that an adult male only needs about 8mg per day .. I think this is very much overkill and I'm a bit worried to take them.

Do you think its common for a person with pernicious anemia to be deficient in iron and folate? .. I heard that b12 uses your body to absorb food so theoretically if low b12 wouldn't you have low of most vitamins due to lack of absorption?

[Hidden in reply to Krealan]

Only take what you need, what you are deficient in. A normal simple over the counter multi vitamin will never have to much of anything and there fore is safest option. Getting vitamins out of balance will not help, and to much iron (and or B6) is as bad for you as to little, same counts for some other vitamins.

You can read up on all vitamins in here see:

merckmanuals.com/profession...

[A-A1]

Thank you. I will get my Folate levels checked and trial more frequent injections. I was taking a Vitamin B complex but stopped so I will restart this too.

[Polaris]

I found supplementing with Biotin (Swanson) really thickened my hair up again. Good for skin and nails too.

[Hidden]

Is your thyroid really normal? Ask the surgery for a copy of your blood results with the reference range and do a bit of research. For thyroid they should test TSH FT4 FT3. Most GPs just do TSH and declare you are normal! Have you looked on tpauk.com? It's worth a look and might explain your continued hair loss.

[A-A1]

Thank you I will try the Biotin.Thanks Fredapain I thought the same thing so asked for a copy of my results. I have had TSH, FT3 and FT4 checked and looked at the results they are all within the reference ranges. I have also had Vitamin D and and Coeliac Screen which are all normal too and within the reference ranges.

[Coastwalker]

I too have hair loss problems and Thyroid Uk member's on here - (Health Unlocked,) told me I needed to get my ferritin blood level up to 90 to help with hair loss, (ferritin is the stored iron in your body,) my ferritin blood level was low at 45, but on my blood 'print out' and their 'range's (I requested,) it showed I was 'within range' (you can be quite ill with symptoms, but your bloods can still show you are 'within range' and Doctors will say there is nothing wrong with you,) my Doctor offered me no treatment, which is what I expected, I am now self medicating and taking Ferrous Furmate to get my ferritin blood level up to 90 to see if there is an improvement with my hair loss.

[Krealan in reply to Coastwalker]

Isn't that dangerous to have too much iron? .. I am also suffering with really thin lifeless hair, I'm recently in the process of self injecting b12 (hydroxo) so I'm hoping that will help .. I heard that too much iron can also cause hair loss so be careful.

I see you wrote this 5 months ago so I would like to ask how your hair is now?

[Coastwalker in reply to Krealan]

No not too much iron for me as my range was ( 15-200)

Just checked, by looks of it Blood ranges for ferritin, have changed at our local Doctors my Daughters bloods are now showing a different range.

(since I wrote 5 months ago.)

I cannot stomach iron pills much so rarely take them.

I am swapping my thyroid medication from Levothyroxine to NDT (Natural Dessicated Thyroid,)

They say that will improve hair, only been a month on it so far, fingers crossed. I do hope your B12 shots will help you too Krealan.

This hair loss/thinning is no joke.

[Krealan in reply to Coastwalker]

Yeah it destroys your confidence ... we already have to feel run down inside and to have this added problem that we *look* run down in many ways ... sometimes I feel like I am being too vain, but then I realize why can't I just have healthy hair like everyone else without this stupid condition

[A-A1]

Thank you. I was told the same thing by my GP and started the ferrous fumerate myself. I have been on them for 5 months now so hopefully they are working. I am going to get my levels checked. Have you noticed any improvement since taking the Iron? I am yet to notice any but then I guess my levels were a lot lower than yours. Thanks

[Secondchance]

I had quite bad hair thinning and loss which is resolving on B12. I had had it a few years before discovering B12 deficiency. It is really upsetting seeing huge hair loss. I empathise.

[pollianna]

I had the thinning at the front, even bangs couldn't hide the balding. Derm said nothing to be done..

It transpired after 10 years of misery and disability very like MS that I have Lupus. My immune system was attacking the hair follicles.

Have they tested you for anti nuclear antibodies?

Apart from that I have found the only way to help myself is huge doses of vitamins and iodine when needed.

B3 Niacin which gives a flush should help get more blood to the extremities.

I use 4oomg daily.

Take vitamin C with the iron and if the iron pills are rough on you try "Floradix" I cured anemia with that.

If all else fails then try some eyesbadow on the balding patches. I m brunette and used a brown eyeshadow. It covers up and removes the shine on the skin.