I was diagnosed with PA a year ago and have just had my 3rd top up injection. 3 months ago after my second top up I told my doctor I was not feeling any better, I still lacked energy, was very tired (I also have ME) but I wasn't "the new man" his nursing staff I would be. He just snapped at me stating that B12 isn't given to give me energy.
I originally went to the doctor as I was no longer managing my ME and was unable to do things as I had struggled to do before. After many blood tests, PA was diagnosed.
Will I ever be able to return to having the still restricted but better life than I am having now? I am now 67 years old and was diagnosed with ME in 2000.
Wish I could offer some advice but I can empathise as I am in exactly the some position. I was diagnosed with ME and under active thyroid 8 years ago and have been going down hill in the last 18 months.
I got diagnosed B12 and vitamin D deficienct in February only beacuse I asked for the tests having found out that this, amongst other things must now be excluded before a referal to the ME service. I noticed a slight improvement at the end of my loading injections but am now back to where I started and won't get another b12 injection till June.
I also found that the once every three months injection of B12 was insufficient . So eventually I had to self-inject B12. I have improved enormously .So many P.A patients have to choose this route to keep well. Why don't you? It may sound daunting, but you will have help from this site. It is simple and honestly painless. You must also make sure that you have plenty of folate(vitamin B9) Or better still take a vitamin B complex. If you have M.E maybe Methylcobalamin would be the best sort of B12 for you(You get Hydroxocobalamin with the NHS) I need to inject once a week' Methyl is a step nearer to being absorbed. If you decide to do this, come back here to get information. G,P.s have no knowledge or understanding of P.A. You need to get onto Dr Sarah Myhills site. She has also written a book called "diagnosis and treatment of Chronic fatigue syndrome" which is another name for M.E. I believe.(Amazon). She is a most fantastic doctor. A good probiotic could also help you. Or you can make your own(Sauerkraut) Very best wishes
I have become very cynical about doctors since getting the diagnosis of P.A.(I had to go to a private GP in a Nuffield Hospital to get the diagnosis as my GP had told me that my B12 was a bit on the low side---150-- and that I should eat plenty of green veg and come back in 6 months --got the Bs mixed up. I was really exhausted,giddy,confused and my feet were totally numb) Iis it a coincidence that B12 is a natural product which therefore cannot be patented which means that the pharmaceutical companies cannot make the huge profits from it. Therefore no research done on P.A. Doctors are not courted to prescribe it. The doctors will tell you that extra B12 will be toxic(not true. There are scientific papers to proove it.) I hope that you are self-injecting jillc39. It changed my life. Thank God for the Pernicious Anaemia Society and Martyn Hooper!
After reading many of the comments, and having been diagnosed recently with PA, here are a few thoughts. Best to be seeing a hematologist instead of a GP. PA is a blood disorder. Find a doctor willing to recognize that how you feel, not just your B12 levels, is important. Also, I highly recommend a good probiotic, the kind that is refrigerated, not just off the shelves. And I had to get shots every week for six weeks before switching to monthly. Even with monthly, I have had to make some adjustments, getting them every three weeks when needed. I try to monitor changes in how I'm feeling so I don't wait until I feel terrible by the time the next shot is due. When I find I am sleeping later than usual or getting a little pale, that is usually a sign that I am going to take a real dip, and get a shot before I am bone tired. And finally, looking into autoimmune food choices has helped a lot. There are certain foods that are very useful to avoid with autoimmune disorders. I also have a thyroid condition. Good luck. I hope this helps!
I couldn't get B12 injections so started self-injecting. I felt wonderful after the first six loading injections but have gone back a bit since. I currently inject every two weeks.
K, and remember it is just as important to get plenty of folate (B9) so that the B12 can do its'work. Also make sure you have enough of all the minerals and vitamins. If you have P.A you sometimes have thyroid problems as well(auto immune conditions seldom come alone) All the very best to you
Yes, I keep an eye of folate and iron levels as well. I do have thyroid problems, and self treat that as well. If they tell you that you have ME, it is best to investigate everything yourself as chronic illness comes bottom of the priority list on the (rapidly sinking) NHS.
Thanks. I've had ME (what ever it is) all my life, was diagnosed in 1988, and spoke (as a sufferer) at the first ever public conference on ME in 1989. I've counselled quite a number of other ME/CFS/Fibromyalgia sufferers over the years.
Dr Myhill is one of the more knowledgeable doctors on the subject of ME.
My cousin was diagnosed with ME way back. She had to retire from her work as a Physiotherapist in the 60's. When I was diagnosed in 2005 with Hashimotos here in Crete - she too decided to be tested and found she had it too. All those precious years wasted.....
I am a great fan of Dr Myhill and her latest book - Sustainable Medicine - is a great read.
The recommended treatment for those with B12 deficiency with neurological symptoms includes loading doses for an extended period and then injections every two months. How many loading doses did you have? If you have neuro symptoms were you referred to a haematologist?
Info on UK B12 treatment can be found in
1) BNF (British national formulary) Chpater 9 Section 1.2
2)BCSH Cobalamin and Folate Guidelines
I read the whole BCSH document and gave a copy to my GPs. I was told the NHS should be following this.
3) Management section in following link contains similar info to the BNF.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Could it be B12?: An Epidemic of Misdiagnoses by Sally pacholok and JJ. Stuart
Do you get copies of all your blood test results? I look closely at folate, ferritin , B12 and the full blood count (FBC) I learnt that what I was told was normal face to face or over the phone was not always normal when I got the copies. Some people with b12 deficiency develop macrocytosis (enlarged red blood cells).
I neither am a medically qualified person but believe me, seahamlad, there is life after P.A. as I've had it for 45 years and am still "clivealive" coming up to 75.
It may take several months for the b12 to complete its task and in the meantime it may be painful but be assured this can be a sign during the healing process that it's working.
Firstly, you may not be getting as much B12 as you need to make any difference. Secondly, when you are, you may need to increase other nutrients/vitamins as well.
Thirdly, you may not have ME? Although I have heard it can now be diagnosed with a brain scan, which perhaps you have had.
All your ME symptoms may be down to a lack of B12. I too have had a mystery illness for years - which an osteopath told me was 'probably' ME - but I have improved so much with very frequent B12 that I believe this was what it was all along. Some of the effects are permanent following long term deficiency. Now that I'm fully aware of all the symptoms and effects, I have looked back to when my illness developed and the symptoms are identical (with some thyroid symptoms thrown in - told thyroid 'borderline' at the time and dismissed).
If you can't get more frequent injections, you can get patches, sublingual lozenges, mouth sprays and nasal sprays, assuming you can afford them.
Please note, this is just my personal opinion, not medical advice.
I can relate to your situation totally. I think ME is also known as chronic fatigue? If so and you have PA as well, I strongly suspect you are gluten intolerant. Pernicious anaemia is a auto-immune condition and it is well known (even in medical circles) that gluten is responsible for auto-immune diseases. I suffered from chronic fatigue for 3 years and doctors could not give me any reason for it. I turned to the internet and by a sheer fluke found a site that linked chronic fatigue to gluten. I was totally skeptical but desperate to feel better, so I went gluten free cold turkey. I could not believe it when after 2 days completely gluten free, I woke up feeling alive again! Then B12 deficiency struck and like you, I couldn't get enough help from my GP. Blood tests for a B12 deficiency are unreliable once you take B12. You will get a normal to high reading yet still be deficient. By the time I could hardly walk (and I definitely did not feel perky) I took matters into my own hands and started injecting daily. It was nearly 6 months of daily injections before I felt I could start cutting them back a bit and the weakness in my arms and legs had disappeared. I believe you can return to a normal life, but it will probably entail going gluten free and self-injecting. Best of luck!
Do you have any references to gluten causing autoimmune conditions? Because it's the first I've heard of it.
Most people who believe they are gluten intolerant aren't. It is thought that other substances, called FODMAPS, are responsible for most of the symptoms people get when they eat wheat.
Thank you all very much for your time and experiences. I have made notes about the various comments made and will look up what I don't understand.
I was diagnosed with ME by a Professor Daymond and he was an experienced medic but has since retired. Although I appreciate the comments of self-injecting, that will never happen for me. I only just manage to let the medics do it. Had a phobia of needles since I was a hospital patient when 5 years old (can't even put eye drops in myself!)
I may not regularly be on this site but I am genuinely grateful for your time and comments.
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