I was diagnosed as b12 deficient in august 2016 and started 5 injections over 5 weeks and then 12 weekly intervals. I have been experiencing very bad hair loss over the past year or so and it is brittle and a different texture than before same as my nails. I don’t know if this is related or not to the b12 so would appreciate if anyone else has experienced this. I asked my doctor last week if I was pernicious anaemia and she checked the records and said no you were just deficient as the test for that was negative. My diet is good so that wouldn’t be the cause so what else could it be? I had asked last year after explaining I get brain fog and tiredness around week 7 or 8 if I could have the injections at week 8 and she did this once but then when she ran bloods after 8 weeks before the next round they were ok so changed it back to week 12. I am just really frustrated with everything, I have other neurological symptoms as well as some gut issues and I just keep thinking everything relates back to b12. Any help or advice would be most appreciated.
Best wishes,
Cathy
Written by
MCkit
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Your doctor should know that around 50% of Pernicious Anaemia patients test negative to the unreliable test for Intrinsic Factor antibodies ,which is the only test that can be used to test for P.A. - A positive test means that you have P.A. but a negative test does NOT mean that you don’t have it . .
.When you say that your diet is good , does it include modest amounts of meat , fish , eggs and dairy products ? These are the only foods that contain B12 . A good vegan diet will not provide you with any B12 . If you do eat modest quantities of those B12 containing foods , then the most likely cause of your B12 deficiency is Pernicious Anaemia ( P.A. is the most common reason for P.A. . The 100% proof of that would be a course of B12 injections . If your symptoms start to disappear then, you have P.A. Tablets will not work for you .
If your injections initially relieved your symptoms , then it sounds like you have P.A. . If they have started to return , then you need more frequent injections . Although very cheap , for some reason ( I’ll leave that to you to work out why ) GPs are reluctant to give extra injections , even though they are remarkably cheap . You have a battle on your hands to convince your GP. to give you more regular injections .
I didn’t have the symptoms that you mention , but B12 deficiency has many many symptoms
Once you are on B12 Injections, then blood tests for B12 are a waste of time -they must always be high . If your GP doesn’t know this , then he or she hasn’t read the latest guidelines . ,
Thank you wedgewood. I do eat meat and eggs though not fish or a lot of dairy now but definitely not vegan so I do think it is PA. Will ask again for more injections !
Yes at the start my hair was falling out and my nails dry and splitting. Unsure if low b12 or falling ferritin levels or both caused this. I had/ have so many symptoms I forget some that have improved or gone away.
I like you have a good mixed diet. The timing for me goes with the menopause like alot of women when your stomach acid reduces.perhaoz knocks toh over the edge ? I have not got a PA diagnosis either. The Gp says its dietary. It is not . Shd does prescribe b12 injections.
Tablets sublinguals sprays do nothing for me . I have tried many .I wish they did.
I've had many a battle with various Gps getting the treatment I need. I'm on no other medication they can blame my symptoms on
Have no other diagnosed complaints. They always try and push antidepressants on me and various other drugs. I did trial 2 for a few weeks . Made me worse. Very hard then to stop even after 2 weeks!- I did though.
I'm presently on a prescription for 2 weekly b12 injections. I also bought some b12 as at one point my Gp was getting me on tablets to wean me off injections??or reduce them. I was losing my trust in her which is a shame. I also did not know with covid19 what my surgery would do. My Go has had alot of opposition from peers . I thank her for standing up to them at times.
They continued my Injections and eventually agreed to let me self inject so i could go less often to the surgery. Some say I'm lucky. I dont think that as everything has been a struggle to obtain and there had been copious letters written in to the surgery. It wouldve been easier to have just bought my own I now realise.
I personally want it on my medical notes. Still waiting for more medical guidance. I'm currently doing an extra injection to see if I can improve as no way functioning even with lowered expectations enough to get on.
Everyone up for reviews soon? There is definitely some directive going o at present. When I see the Gp I will ask.
Seemingly covid19 making the surgeries review things. Still think it disgusting the post code lottery of what treatment is given with local guidelines to us. At the end if the day each Gp can decide on their patients best interests and do prescribe' off licence' also even working within bnf guidelines so many are not.
So do fight your corner if you are able. So its transparent how devastating PA /b12 deficiency can be. Writing in is good as should be scanned on your notes. I 7always include current ongoing symptoms. How b12 injections affect me. What b12 tablets I've tried each.
I hope you get more b12 treatment to see if if addresses your symptoms. As you say ig all seems to come back to b12 if they have found nothing else wrong.
Your GP should treat Your symptoms, start loading injections until you feel no further improvement then level out your injections to frequency that suit you. As almost no GP works this way you might consider taking charge and go the self help route. A lot of info to be found here and on PAS website.
Hair loss and brittle nails can be B12 deficiency symptoms, but also can be related to other deficiencies. These visible signs are useful ones for GPs and consultants to easily determine general health condition. Having said that, my fingernails have only been checked once in five years - by a haematologist. This can also be a useful way of checking your own progress, when these symptoms start improving. If you bring these symptoms to your GP's attention early on, she can use their condition as reliable indicators.
At worst, nails can delaminate- and then layers can overgrow. More usually, there is weakness, brittleness, loss of moons, vertical ridges including splitting (dark lines of dried blodd vertically) and/or cobbling. Never heard anyone complain about this in relation to toenails yet - but I probably will now !
Didn't get my moons back. except for thumbs- which I probably never lost (can't now remember).
Hair often loses strength, goes very wispy and flyaway, then sheds. First noticed having to hold hair down in a light breeze, then getting sunburnt parting, then temples getting further and further back.... and ignored it all.
At first.
Bit more concerning when partner won't get in the bath after you've washed your hair because it's like "sitting on a nest" - !
Once B12 is working, hair can grow back. Some have experienced regrowth in original colour (no grey!) - have seen the results on a video on Pernicious Anaemia Society website. ! My GP believed that my hair loss was more to do with my ferritin and//or folate also being low. Both hair and nails improved - hard to tell whether through B12 injections or ferritin and folate 3-month supplements.
You said you are waiting for blood test results: hope they included folate, ferritin, vitamin D and thyroid. The first three can be below range or low within range, so ask for a copy of results just to check. Thyroid can struggle if trying to cope with all this.
People who have pernicious anaemia can also have other autoimmune conditions like vitiligo, psoriasis and some thyroid conditions like Hashimoto's or Grave's disease. These may also be present in other family members.
B12 deficiency treatment frequency of 2-3 months is recommended in guidelines. Where a rare genetic functional disorder at cell level is found to exist, the frequency needed can be as much as 2 injections a week.
If you have neurological symptoms, you should be given injections every 8 weeks - after being treated with a loading dose every other day, which should continue until no further improvement can be gained by this. Usually this means reviewing after 3 weeks.
This rarely seems to happen in real-life though.
I was failing to respond well to an injection every three months, and was in fact deteriorating. Once my methymalonic acid (MMA) was found to be still raised by my GP, I was given reloading injections at a 2 per week frequency for 6 months as her diagnosis was "functional B12 deficiency". After this time, I was given 1 injection a month, which again was a struggle for me. My cousin gets an injection every six weeks and is fine with that.
We are all different in terms of symptoms and effective treatment- even within the same family.
Your hair and nails are telling a story about your body that your GP needs to hear.
The blood test results will hopefully be giving more clarity.
Try not to get disheartened meanwhile. Start by keeping a daily record/chart of symptoms: frequency and severity -and include when injections occur. A pattern might emerge that will help later to bring in a frequency that is effective treatment for you as an individual.
Thank you Cheryl. I have been checked for coeliac and thyroid over the years but allegedly all ok but I know something is amiss. They won’t check vitamin D in my surgery or zinc so I may go and get those privately as how are you supposed to know how much supplements to take if you don’t know the levels! The doctor does not seem to want to try and look at the full picture but merely treat the symptoms separately. I am being checked for thyroid again but I doubt they will check for antibodies which I have been advised is necessary and they are checking ferritin and b12 so will see what they say.
So folate should be checked too as a matter of course if B12 on the list.
You can get full thyroid test : TSH, FT3, FT4, free thyroxine, anti-TPO, anti-TG - blood test by post from medichecks. Think there's a special offer on Thursdays (?)
I have gone along with everything that consultants have suggested in terms of tests, even where I felt that they have been treating myopically: single symptoms in isolation. It has taken me a very long time to exhaust all alternative possibilities. The only thing (test/treatment) I have refused was anti-depressants- over and over. That was just a first hurdle. I know I'm not depressed. Should've been at times, perhaps, but wasn't.
Thank you Cheryl. I think I will get a full thyroid test done and will check out who you have suggested but really I shouldn’t have to do that but that’s another vent lol. Thanks again , it’s nice to feel like you aren’t alone
Have a look at my replies in the thread I linked to below which has links to B12 deficiency symptoms lists, causes of B12 deficiency, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might be useful.
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