Pernicious anemia b12 and vitamin d deficiency

Hi I was diagnosed with pernicious anemia aged 25 I'm now 28 I have b12 injections every 3 months and do not feel any different after haveing them! I'm always extremely tired, always have colds, flus, chest infections just constantly run down and never 100% I always tell my nurse this each visit but always get told my levels are within range, I've just also been told I'm also vitamin d deficient, it's so frustrating and feel like I'm not being listened to seriously! I have 2 young children and never have the energy to do things with them it gets me so low, just wondering if there's anyone with any tips to boost energy is there any supplements, diets ect. to help, I'm petrified of the thought of self injecting so that is a no go lol would be so grateful for any tips 😊

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  • Have you got any blood test results you can post then it may help to point you in the right direction. Eg Ferritin,folate,vit D, B12 etc.

    Regards Mark

  • Thanks for replying, no I haven't do I request them of my doctor? Not to sure about any of it to be honest only recently started to browse about my condition i haven't really got any knowledge of my condition at all the doctors and nurses dont seem to be bothered about it so neither have I its only now I've realised I can't actually live like this and need to do something about it, also I've read it usually occurs in an older women is it normal for my age to have this ?

  • Ask your receptionist for print offs of your blood results - she will probably say she will have to ask the doctor, at this point I said "Sure, that's fine, go ahead", and leaned on the counter, prepared to outstay her.

    Post all of them on here complete with ranges eg. vitamin B12 103 < (180 - 1000). The figures in brackets are the ranges.

    B12 deficiency can happen to any age, even babies.

    My apologies if you know this but when I was new I didn't.

    More knowledgeable help will be along tomorrow I'm sure.

  • Hi Laurenazz

    If you have a definite diagnosis of P.A. and you have neurological symptoms then according to the B.N.F. and N.I.C.E guidelines you should be getting your injections (at least) every eight weeks per the following:

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

    Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

    "

    N.I.C.E guidelines (telling doctors how to treat you)

    Click on "Scenario Management" and scroll down.

    google.co.uk/url?sa=t&rct=j...

  • Unfortnately the 3 month injections seems to be firmly entrenched in UK medical mythology though there doesn't actually seem to be any good solid evidence to support it.

    The levels of B12 in your blood are only a part of the picture. It needs to get from your blood and into your cells and then it needs to be processed by your cells. There are things that can go wrong at all three stages - and using serum B12 as a single guide without evaluating symptoms etc is problematic as a result.

    People who are being treated with B12 injections for deficiencies caused by absorption problems tend to report needing much higher levels of B12 in serum to feel healthy - generally at the top if not above the normal range on average - but GPs aren't aware of this and would rather still go by ranges rather than listening to what their patients are telling them.

    Suggest that you join the PAS and contact them - the first step will be writing to your GP and there are materials in the pinned post and on the PAS website that you can use to do this

    pernicious-anaemia-society....

    it would also be an idea to keep a symptoms diary as it may be that your symptoms do improve when you have an injection but that the effects are quite short lived - a month or so or even a couple of weeks.

  • I have read that take a B complex containing Folic Acid or Folate ( B9 ) is also helpful when having B12 injections. B12 and Folate work together in the body . Low VitD could be the cause of so many of your colds as it is more than a vitamin - it is an anti-inflammatory pro-hormone and needed in every cell of your body.

    Do you know your VitD result ? - and what did your GP prescribe ? They often prescribe too low a dose which will take ages for you to reach a good level. It is not expensive to purchase - try to find the gel capsules that contain olive oil with the D3, VitD is fat soluble so the olive oil overcomes having to take it with fatty foods. I buy mine on Amazon. I would suggest that around 4000/5000 IU's is a good dose for the winter and a reduction in summer if you have plenty of sun. Re-test at the end of the summer. 100 is considered a good level.

    vitamindcouncil.org

    grassrootshealth.net

    Both the above sites give you well researched information about VitD and the conditions that are linked. They are American sites so be aware the measurements differ ....

    Having two young children is demanding - so there is a lot to take in here on this thread/forum - so take small steps one at a time.

  • I have been given colecalciferol vit D3 4000u tablets ?

  • Thanks everyone I will ask Monday morning for my blood test results and let you know hopefully will be abit more help I literally have no idea about any of it so hoping I can get some knowledge of here and start feeling abit better thanks so much !

  • Please join the facebook support groups for b12d/pernicious anemia it has over 14000 members. Also the vitamin d UK support group. As they do not recommend taking the vitamin d the doctors prescribe as they believe it dose more harm than good and recommend natural more easily absorbed forms. You will get will be able to learn allot and get extra support. I was 28 when I was diagnosed all tho I believe I had it since I was very young. There are also even younger people in the groups. Yes it is a big misconception that it happens to the elderly. Also you can take 5000 not sure of the unit. Of b12 tablets that go under the tongue. So bypasses the stomach. Solgar sell them you can get them on amazon. Hope this helps X

  • Thank you I have been doing my research the last few days it's fascinating what other people are telling me compared to my doctor and nurse I felt like a nucience everytime I mentioned to them how I'm feeling they just smile and say I'll be dancing after my injection which I am not! Thank you so much for responding reading everyone's comments I feel like it is not just me anymore xx

  • I was like you. I was basically told all I needed was injections for life and that was it. For the first six to nine months I was okay. Then I started to realise quickly I was going down hill. Wasn't til I found the facebook support group that I realised just how bad it could get and that it after all wasn't in my head and I wasn't going mad or insane. I'm so glad I refused all the anti depressants I was prescribed. It's only since I started to self inject that I realised how much better I could feel. I was like you also didn't want to self inject but I got to the point where I had to as I was really loosing the ability to function. If you can afford it there are revive clinics around that give shots for £29. I did when I was really desperate and pretty much begged my the boyfriend to take me. As I was still another month away from the doctors shot. Sadly it didn't make me feel much better it was then I decided I'd had enough and with my mum watching me I managed to do my own subcut so just under the skin and by the fifth time it was like brushing my teeth just another daily chore. If you can I'd try and get some one willing to do it for you til you could maybe do your own. But only you can decide that. I wish you well. If you need anymore help you can always message me. X

  • They tried to give me anti depressants also!! I'm so glad I never took them as I had not long given birth to my daughter so we're trying to make out I had post natal depression when I knew it was my body but they wouldn't listen to me I totally refused I needed anti depressants and now so gla I made that choice, can't believe there is actually similar stories out there! I think my main fear of. Self injecting is will I order the right things ect my partner is a diabetic and injects twice a day so he would do it for me I just don't like thought of buying things online and putting it into my body 😬 I may look for the revive clinics do they just give b12 injections for £29 whenever you want? At the moment this is the lowest I've been I look frail, pale, dark circles round my eyes, full of cold (AGAIN!) aches and pains and only had my b12 injection last. Week! So am willing to try anything, other than self injecting have you changed your diet or take any supplements ? Xx

  • if you were on injections before giving birth its VERY IMPORTANT to know that gas and air will render your b12 useless as it inactivates it. so you should of had top ups to protect you from what you would have lost. You do need to take folic acid and a bcomplex to support your jabs also there are other vitamins. if you join the facebook group they have a pinned post which tells you everything you need to know they also have a where to source supplies with direct links to what it is you need to buy. all these places have been vetted by admin so there is no need to worry your buying something dodgy. they also have videos on how to self inject. you can just do subcut which is just under the skin which I started off with but after a while I wasn't noticing much so I then switched to intramuscular. which of course is in the muscle I do all of this into my thigh and find it a lot less painful than the arm which the nurse does.

  • yes anyone can have them done whenever they like,, strangely tho doctors still think you can have to much., but there have been no known cases of toxicity. b12 is a water soluble vitamin meaning what your body doesn't use it pees out in your urine. if we were to live in say Germany we could just pop to the chemist and buy it whenever we need it as they don't have a prescription only law. its also worth knowing it is not illegal to buy or self inject b12 as it is a vitamin and not a drug. so many off us like myself order from Germany pharmacys I get mine from a company called versandapo take a look if you like there should be a transltion button somewhere on the screen. I buy a 100 ampules and cost about 60pound with export charges in total.

  • Hi Lauranazz, I self inject and at first found it little awkward. I persevered and now it's a doddle. Don't give up on self injecting, you will reap the benefits and feel much better!

  • How often do you self inject and were do you purchase them from?

  • if that was aimed at me I self inject every other day as I have neurological symptoms and I will have to do that until there is no further improvement which could take upto two years or more dependant on if it is permanent damage or not. they say that if you have a symptom for more than six months it can be permanent but not always the case. someone once told ne on here that they spoke marytyn tom cooper I think his name is who runs the PA society that its a case of treat yourself or wait for it to get worse and I think ortho that is really not nice to hear it is true because there probably isn't if very few that actually manage on three monthly. and from experience I was only first hand getting worse the doctor even thought I had ms because my symptoms kept worsening..but she failed to realise that a lack of b12 mimics ms in symptoms because they follow the same path. can I please ask what your symptoms are?.

  • I always get pins and needles in my feet and up my legs and they ache really bad, I'm very short of breath all the time (doctor prescribed an inhaler) which I think is pathetic! I get palpitations, I go dizzy quite often, my body feel very heavy all the time, I struggle to gain weight and muscle, I told the nurse I would like to gain abit of weight and could she help she laughed and said she usually gets people wanting to lose weight and didn't offer me any advise I felt so stupid, I can literally fall asleep if I close my eyes! Headaches, I feel as though I used to be really bright now I'm very forgetful I even feel like I struggle to get my words out sometimes like abit of a stutter ? Not sure if all this is related this is why I feel like I'm going insane! When I speak to my doctor or nurse about these problems they just smile and inject and say I'll bo ok, I know my body is telling me something x

  • Sounds like your worse off then when i started to treat the pins and needles are neurological symptoms and should be on alternate day injections. Yes these are all symptoms of low b12. The muscle weakeness is why the doc suspected ms, but i know otherwise. I would really advise starting to self treat asap.. as i soon learnt the doctors dont know much and are unwilling to listen. I was offerered cognotive behavoural talking to learn how to cope with my symptoms as he did not believe i had a disiease of the brain he turned round and basically said i dont know whats wrong with you i get many patients coming to me with the same symptoms and id imagine there under treated b12 patients or yet to be diagnosed. Since then i never went back because i thought im getting no where fast here. And i started self treatment mid november so of course by the time i went to see neurologist mid decemeber i had somewhat improved but i havent told the doctors as i knew they would never agree nor understand.

  • I've give up telling them how I feel now also because I know they don't listen you have been an absolute great help and am gunna look into self injecting ASAP it's so frustrating and scary to think what problems were going through without any help, all I get told is that my b12 levels are in range ! 😡 I don't have Facebook so can't join that group but definatly going to take ure advice on board thank you for taking the time to talk to me X

  • I would really advise signing upto facebook just to join the support groups you would need to send admin a message to state that is why you dont have any friends ect and that it was from the advice off of one of your memebers told to me in healthunlocked, just because if they see nothing on your profile they may not acept. If this is what you would like to do you could tell me your name and i could validate what your saying. So they dont just think its a random perosn joining.

  • Also you must never be retested once on injections as they will always be falsely high your doctor should know this nut not all do or follow that guideline. Also your levels NEED TO BE OVER A 1000 for healing process to begin. You can always by an at home test to see the levels yourself. If you want i can give you a link to it.

  • I must also stress that altho the under tongue tablets help they will NOT REPAIR neurological symptoms. And they do not do anything for some people.

  • One last thing i see that your given 4000 vitamin d well according to the vitamin d support group you need at least 5000-10.000 to safely raise levels and some members take much more. You also need to take vitamin k2 and magnesium to get the the vitamin into the bones otherwise it wont be as effective and you can end up with calcification which is not a good thing either. This is why i strongly advise joining the groups as they know alot more than i do and you can keep refering to the pinned posts to make sure its all clear in your head. Also you would do well to read.

    Living with pernicious anemia and vitamin b12 deficiency by Martyn Hooper.

    Pernicious anemia: The forgotten disease by Martyn Hooper

    The b12 deficiency survival handbook by Dr Aqsa Ghazanfar and Regev Elya

    You can get these all on amazon and maybe ebay. All the best x

  • I only started to feel better when I did the following:

    1) Bought b12 bikes on Goldpharma

    Bought needles on Amazon to inject myself daily

    2) Took high iron for 6 months

    3) I take (1000 measurements) Vit D every day

    4) Take multivitamins- Performance Centrum

    I got my life back to normal after about 3 months

  • You should get both B12, folate, ferritin and vitamin D into optimal level, before you can expect any real improvement. I also had a B12 deficiency, which I treated for 7 months, but never really recovered - until I found out I was also deficient in vit D and low ferritin.

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