Pernicious Anaemia Society
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Really concerned for my husband bloods reveal really low vitamin B12 and D3

Hi everyone I'm very worried about my husband who has been suffering with muscle joint pain numbness in his hands and swollen joints. my question is regarding my husband who's had low folate and has been treated with folic acid for the past year his last treatment ended two months ago. The other day He had his folate vitamin d and b12 was checked Yesterday his gp rang to say he needed to see him asap today it turns out his B12 was very low so he has to have a 2 x weekly 5 week course of B12 injections and his vitamin d3 was low too and was given a course of vitamin d3 I asked the stand in doctor for his numbers and was told we didn't need to know! Does this mean he has PA? Will he have to have injections for the rest of his life. He's had these symptoms for two years he suffers with fatigue and sometimes mood changes. Thanks in advance

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Tell them that it doesn't matter if you 'need' to know your results. You want to know them and it is your right to be told them.

You could ask for a test for IF antibodies to see if it is PA. But the test gives a negative result in about half of those with PA.

No matter if it's PA or not, injections will almost certainly be for life.

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Wow thank you for answering me I thought as much! I will ask the nurse who's doing his blood tests before his first b12 injection to put a request in for the IF antibodies and yes I know the doctor has no right to refuse his results he will get a print out of his latest test results. Do you know if there's a good chance that he will start to feel better?

Thanks again for the reply xx

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You might find this interesting, if you haven't already seen it. Interesting and important information on B12 and folic acid.

healthunlocked.com/pasoc/po...

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Thanks I will have a read of this xx

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Interesting film you and your husband can watch about Sally Pacholok's battle to have PA/B12def. recognised as a common but serious disease and how she was inspired to write the books which are now widely recognised as the B12 bible all over the world. 🤗

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Hi GillyGangGong. I can't believe the doc refused to say level amounts after doing a "come right in asap" call. My doc gave me a printout and explained it to me. I would go to the office and request a printout and also for all labs in the last year(or sign up for patient portal and always have access to results) That way you can see how all levels have risen or fallen and maybe see a pattern busy docs can miss. Im fairly a newbie with having PA, but know they ran the IF before was diagnosed. Best of luck

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Thanks for the reply he's on his way to doctors surgery for a blood test and his first b12 injection I have asked him to ask the nurse for a printout of his past tests and a request to test IF for PA how do you feel now you have had these injections as I've heard they make you feel fantastic I really hope so as he's been off it for a few years.

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Hi GillyGangGong. I'm so glad he's getting his injections. Everything had bottomed out for me and was in a bad way. I started getting almost immediate relief from some of the major symptoms, but took a few months to feel leveled out and better. I did daily shots and now weekly. I didn't feel euphoric or really good when injections started, just one by one, my symptoms started easing.

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I hope he gets immediate results too and hopefully then his health balances out. I'm glad your feeling much better it's terrible I'm sure I was im deficient in folate according to my consultant nurse which is she says is due to a recent bout of gastritis. i was thinking if they work for my husband they might work for me as I've felt like rubbish for years with joint muscle pain and dizziness xx

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Thank you he got his results and his B12 was 193 xxx

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In a way, this is good news, because one of the best possible explanations of muscle pain, fatigue, etc. is low b12, in the sense that b12 replacement gets really good results for most people with a very low risk of adverse effects. (I'm comparing here to other possible explanations like mental health, Lupus, MS, parkinson's, etc.) It's still a serious condition though, requiring a long period of healing for some, and for some the damage does not heal 100%. Once you are out of b12, damage can happen rapidly so it's important to address right away and always keep up with the treatment. In retrospect I wish I had just bought myself b12 injections earlier to see if they helped - it's not free but is sooo cheap and easy compared to the benefits achieved if b12 is the explanation of your symptoms.

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Can you buy the injections in the UK I don't mind paying do you need to see a private doctor xxx

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I am not in the UK, but I think some diet and health clinics sell over the counter b12 injections as an adjunct to weight loss, remedy for fatigue, etc. If he hasn't been tested for Intrinsic Factor yet, a b12 injection might cause a false positive on that test, maybe something to research first. Many posts on here have lots of information on UK doctors who specifically understand pernicious anemia/b12 issues. Good luck.

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He will get better very fast just make sure he gets methylcobalamin injection every day for 7 days then 2 weekly for 5 weeks then 1 weekly for 8 weeks then monthly 1. The doses GPS give are very low so learn to self inject. He will get better within a month. As far as vitamin D is concerned give him ampoules to drink weekly for up to 8 weeks. Make him sit in the sun for 40 mins without his shirt on and change his diet. He should exercise abit also once he gets the strength after some of the jabs. Don't give folic acid with b12 as it causes nerve damage so wait until his b12 gets high and give him 6 months to heal more than 80%. Vitamin b12 and vitamin D including other fat soluble vitamin deficiencies coexist together so make sure to Check them also. They don't get absorbed because bile dosnt get secreted from the gallbladder due to low stomach acid and some other reasons as Well so make sure your husband takes apple cider vinegar also by mixing two tea spoons in water before eating proteins this will also help not only digest proteins but also absorb all the nutrients from it which will give him b12 and secrete the bile completely from the gallbladder and thus help in absorbing fat soluble vitamins as Well. You should apply the same for yourself also as every single one of us is deficient in b12 and D. Prevention is better than waiting for complications to get apparent. Hope this helps.

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So when do you supplement with Folic Acid as on this forum you can read the advise to take 400 mg daily of over the counter folic acid when you receive the B12 injections regularly. ( every 2-3 month) or have I got that wrong?

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Wait until b12 heals your husband's nerves otherwise you will damage his nerves. Once b12 is repleted in about 2 to 3 months then start folic acid.

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Hi thanks for the reply I look forward to seeing a big change in his health. He has just finished a 3 month course of folic acid just two months ago, his folate was within normal range but B12 wasn't xx

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Many thanks for this information this is very interesting as his vitamin D is low too xxx

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Hi there he has only been prescribed 2 x weekly and it's called HYDROROXOCABLAMIN 1mg injection is this another type or another name for the one you said thanks a lot xx

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Another type. Hydroxocobalamin is an inactive form. Get the methylcobalamin which is an active form of b12 and more safer.

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Thanks I have taken a snapshot of this for him to take to the doctors when he goes back as his GP put a stop on the injection until he gets the latest IF blood test results XX

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The gp dosnt know because he hasn't experienced b12 deficiency. Only those doctors who went through this problem can understand and will never put a stop like that. Serum b12 may be raised by the injections but you need to check it on his tissue level as it takes time to replete the tissues so hopefully you don't misjudge.

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Where did you get this info about the folic acid causing damage until B12 restored 80% as its the first time I've heard it and it got me slightly worried!!!

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Google it you will find out. Every gp knowe this but those who don't shouldn't be co sidered safe doctors.

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I have, and can't find any sites to the effect perhaps you can post up a link to source your info please? It'd be very helpful to Us newbies lol

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Hi everyone thanks so much for the replies xx himself went to see the nurse and his main doctor had put a note not to give him the injection the other doctor had already prescribed until he got his second blood test back apparently the other had acted prematurely giving him the 5 x B12 injections so he has to wait now he was very disappointed 😔 his B12 was 193

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Get the injection and learn how to inject. It's very simple. Don't Wait!

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Just a quick update his results still aren't back a week later is this a special test that takes much longer xx

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Hi I thought I would update everyone who answered me. Himself didn’t get his IF results back for about a month after. He had he had a few 1mg injections 5 I think? With little improvements however two months later and the fatigue has set in, we are going through a lot of worry with our son but I think he’s drained of B12 again x

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