Hi all - I'm new here and am grateful to have found this site. Following a several years of symptoms and various tests and treatment for other things, I was diagnosed with pernicious anemia (B12 was 134) seven weeks ago and have been doing cyanocobalamin injections since. The initial plan was to do injections weekly for the first four weeks, then every other week for a month, then go to monthly or perhaps less frequent depending on how the monthly injections helped. I didn't feel any change until after the 4th shot - I felt pretty good and was amazed at how much pain, fatigue and discomfort I'd adjusted to over the years. Best of all I could take a full breath without pain! My fatigue eased greatly, my sleep improved and my thinking cleared up a bit too. I found that during conversations I could access words that I'd been 'missing'.
Long story short - a day or so after the first skipped injection things went downhill in a hurry. An email to my doctor got me the OK to do another jab ASAP and stick with the weekly jabs until I felt I could stretch out the time between, so now I'm back to weekly. I haven't felt the same relief that I felt after those first 4 injections since and I'm feeling really discouraged.
I'm again struggling with terrible back pain that had been greatly reduced after those first 4 weeks of injections and there's literally not a moment of my day or night that I'm not in pain. Breathing is difficult again, feeling like my ribs and upper/middle back can't expand, and it's migrating up to my neck and shoulders as well as feeling like it's 'come through' to my chest wall below my collarbone on my right side. I added in a daily B complex vitamin as well as D3 (4000 iu) to try to round things out, and also to try to knock down any possible inflammation I got back on a daily Fish Oil for omega 3 (600 mg) and Turmeric (2000 mg) hoping they'll eventually help.
There's a huge amount of really helpful info in all your posts here, but I haven't seen too much about this level of pain and I'm looking for your input on this from your experiences. Could this still be related to my low B12 and (hopeful) recovery from it? I'm seeing an acupuncturist to try to cope with the pain and he seems to think that this kind of pain is not due to the low B12 - or at least to the low B12 alone. Talking to a friend brought up other things to consider - costochondritis, fibromyalgia, Lyme - but I feel like I'm floundering (and I feel like a bit of a nutty hypochondriac) and am almost hoping to hear that others out there have been through this (not to wish pain on any of you!) and came out the other side feeling good.
My long story short seems to have gotten a bit long, so I'll wrap it up. Thanks in advance for any advice/input you might have.
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sweetmaddie
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Hi Sweetmaddie. I too am suffering severe pains for a long time and am about to start self injecting as it is the only option left to me. I have several autoimmune conditions. Diagnosed hypothyroidism in my late 20s by chance. I had been to the GP with cold hands,feet and nose several times since around the age of 23 when I was newlywed. My hair started to get very thin and began to fall out. I just put up with "bad circulation"!!! for several years . One day I was getting dressed to go to a funeral and had a bleed mid-cycle. A different Dr in the practice ordered blood tests and an app with a gynecologist, who after examination said I had a large ovarian cyst which he wanted to remove. We had no children at this stage. Very quickly I was admitted to hospital (about 10 days) and after a scan the gynecologist stood back as if shocked and said that I was pregnant, no cyst but a baby. OMG we were delighted as we had been married quite a few years. While in the hospital the results of blood tests came back. Grossly under active thyroid was the words they used and I was put on Eltroxine straight away. They kept me in to monitor things but baby wasn't growing and eventually I miscarried. They would have taken me to theater for a D&C but I felt it was better to let nature take it's course and went home. I feel had I been diagnosed earlier that episode in my life maybe would not have happened , as knowing what I know now about autoimmune deficiencies I was running on empty and my body could not support the growth of a baby.
That was in the early 80s I think. No big problems regarding thyroid just the usual tweeking of levels every now and then. Went on thankfully to have 2 sons who are now in their 20s.
Early 2014 I began to feel terrible. Sweetmaddie, this post should be in a different place I think. LOL I am relatively new to this fantastic forum and am just finding my way around it. Sorry this is long drawn out, and not of any help regarding your issues, but I am running out of space and battery power and will finish this when I have more energy and less brain fog.
iPad recharged. Wish That I could plug into something to get a bit of a lift as easily. Anyway I will try to fill you in with the rest of my health issues. Jan '14 I started to get severe pains,especially at night time in my middle toe on right foot. Quite sharp pains that progressed to the outer side of foot. A few days later it travelled to calf and hip. Visited GP. Blood tests for thyroid ordered. Here in N Ireland it is Tsh and T4 only that is tested. Actually is that the same on the mainland?
In the next year and 3 months I had 7 blood tests for thyroid. All normal apparently. In that time Dr changed levo from 100mg per day to 125mg on alternate days. I cried, pleaded and begged to see an endo. There was no need to see one!!!
She told me there was no private endo within 40 miles!!!! I truly was so ill and in a fog that I did nothing about it. My personality changed dreadfully, I wanted total isolation, no tolerance for anything or anyone, pains everywhere, irritability, and a host of different ailments appearing every day.
March '15. Another App with Dr. Young locum. At last I got referral to endo.
Saw her end of May. "Your pains are nothing to do with your thyroid ". She ordered blood tests and an app to see someone in Mental Health.
A few weeks later B12 results. 120 and Vit D def. Relief was immense. It is difficult to explain that you can initially be so relieved to have yet another autoimmune disease.
45 years ago I was walking around like a Zombie and had test after test done by my the GP Doctor Rosemary Wool.
Following a second "Schillings Test" I went to the surgery for the results.
"Do you want the good news or the bad news?" she asked
I said "Give me the bad news"
"You're going to die - and you're going to die within the next 2 years"
"So - what's the good news?"
"You're not going to die if a) you eat raw liver, three times a day or b) have cyanocobamalin B12 injections every four weeks for the rest of your life"
I left the surgery "walking on air". I was still just as ill with P.A. but it was such a relief to know that at last something could be done about it.
43 years on from that conversation I'm still "clivealive" at the age of 74 and still get my injections done at the same surgery.
Doctor Wool went on from being a "humble local GP" to become head of the Prison Psychiatric Service and has been honoured by being made a Dame of the Order of the Bath.
I hope things start to improve for you Jose651 and wish you well
Thank you clivealive for your kind words and good wishes.
That is some story and luckily you have come out the other end with the help of a great GP.
As they say in the part of the country where I come from, "your as tough as aul boots" That's a compliment by the way. I have read your profile and know your strong. I have eventually updated mine this morning.
I am also relatively new to Pernicious Anaemia, having been diagnosed in March of this year. There will be some very well informed suggestions coming your way shortly.
My guess is that you should be injecting daily until your pain symptoms dissipate completely. I understand that you are beginning to feel neurotic because nothing adds up. Many of us have been referred to counselling/psychiatric assessment and prescribed anti-depressants. Hang in there as I think your symptoms sound like a classic B12 deficiency.
You can buy sublingual sprays over the counter and these will help until you receive more regular B12 injections.
Eventually, you will need a biopsy and endoscopy to investigate why you are deficient. Check for Intrinsic Factor and Gastric Paretial cell antibody. You will need to consider if your diet is a contributing factor? Are you vegan/vegetarian? Then, your treatment can be sorted.
Thanks Jose651 and BethattheBeach... I did have my thyroid checked and it was fine. My MCH and MCHC were both normal too. I've started sublingual cyanocobalamin (liquid) daily and will continue the injections too. It's curious that the protocol for loading doses varies so much.
BethattheBeach - Endoscopy and biopsy didn't come up when talking to my doctor. What does info from a biopsy and endoscopy help me with going forward? Will that be a factor in determining a different course of treatment? There's so much I don't know! I'm not a vegan or vegetarian, but not a red meat eater except on rare occasions. I've been a healthy eater for ages - lots of fresh fruit and veg, very little dairy (except my homemade yogurt!), lots of legumes, beans, nuts, seafood. No packaged/processed food, very little sugar, white flour, etc etc. It doesn't seem that diet is a factor from the little I know.
My doctor wants me to have my B12 checked 3 months after starting the injections but otherwise hasn't suggested and additional testing. I guess it's just a wait-and-see kind of thing for now...
I'm new too, I was only diagnosed in July. I stuck with the doctor until I had my 6 loading doses (got 4 then a month later had to ask for another 2) and my blood test was taken a month after that. I felt much better after my 4th shot, then not so much! It wasn't until I started self supplementing with b complex sublingual and a multi vitamin with minerals AND a skkin patch twice a week I felt better. You need to make sure you have enough folates, minerals and iron. I plan to cut back on these a little at a time to see how much I need and I will go back to the doctor to get my hydroxo shots but I'm going to argue my case for 2 monthly rather than 3. Cant understand why they're so hooked on blood test numbers!
Interesting that we had a similar experience after the 4th shot. I felt amazingly better (well... it's all relative I suppose!) and then after trying to skip a week it all went downhill. Quickie update again here - I just did my 8th shot on Tuesday and two days after that, once again I feel a clear improvement. My pain has subsided, I can breathe more fully more often, also without pain. Nights are still pretty pain filled, but I expect like many illnesses/conditions, symptoms increase at night.
So I'm three days past my 8th injection and am feeling quite optimistic about things. I also ordered the book "Could it be B12?" and am interested to read it.
I stopped the extra vitamins for now (D3, B complex, 5000 mcg sublingual B12, Fish Oil, Turmeric) to see how I fare with just the B12 injections. I'm my own human lab rat at this point! But... I feel more in control of my treatment too.
Thought id give you an update. I've gone downhill and am still taking the supplements. Looks like they either gave me a quick boost or I was desperately needing the magnesium etc. Cant get an appointment at the doctors so will have to keep trying. My 2 month point isn't until the 16th and I know there's little chance of getting another injection until then. Self injecting is looking highly likely now!
Can you get B12 to inject yourself? I've found self injecting is very simple and painless - and being in control of when you get your injection is empowering. My doctor watched me self-inject two times, and after that I'm completely comfortable doing it.
I'm not sure where you live; I'm in the US and from what I've read on this forum, it's easier for me to get my B12 (I'm taking cyanocobalamin) here than it is in other countries. BethattheBeach queried about injecting daily initially and I'm reading how varied other's experiences are with different loading doses. Such trial and error, no?!
Truly though, don't sweat the idea of self-injecting. It's not scary : )
Hi again. A gastroenterologist will be able to do a check of your digestive tract to ascertain what is causing you to have B12 deficiency. Ask that a biopsy be taken and that they look for celiac disease. You will need to eat wheat for 6 weeks before this endoscopy to allow them to see the effects of wheat. The state of the small intestine, (the ileum's wall) is significant. My ileum is practically destroyed and this could only be found through taking a look. Therefore, I know what I am dealing with.
As soon as my B12 result came back (175) my GP rang the pathology and had them do a couple more tests... Gastric Paretial Cell Antibodies and Intrinsic Factor. This will give the Dr some idea of the cause of the deficiency and allow her to direct the gastroenterologist what to look for. Otherwise, they are neglecting the most important part of the treatment - getting to the root cause.
Hi back - Thanks for the details about the endoscopy and associated tests. I'll run that by my doctor. At this point I'm injecting weekly and am monitoring how I feel. I'll do an injection today and I'll be interested to see how I feel over the next few days. I've added in daily 5000 mcg sublingual B12, as of about a week ago.
My instinct tells me there's something going on in addition to the low B12 and I'm going to press for a chest x-ray to rule out anything there. There's a specific area that's painful that I'm concerned about and it seems like pain is radiating from there.
Hi i have B12 injections 3 monthly but have also been diagnosed with fibromyalgia. Got to say my dr has been brilliant which seen to be a unusual comment on this site. Have started pilaties which helps with pain. Also take B vitamin complex and vit D .
Hi sueps - I'm curious how your fibromyalgia was diagnosed. Any insight into that would be really helpful. B12 is helping after two months, but I'm not sure that's the only thing at play for me either. Thanks in advance!
Hi i have lots of muscle pain and days of exhaustion which was what i first went to drs with. Dr did lots of blood tests including B12 and Lupus, she had suggested Fibromyalgia before hand. When my tests came back as B12 defiency she said although symptoms can be similar to FM they would improve with injections, but it would not improve FM .waiting to see neurologist to have pain blocks. Ask your dr about FM tests which include testing pain sites around your body good luck.
A chest x-ray sounds like a great idea to eliminate that concern. That is the problem - it is hard to pin down B12 deficiency symptoms. My GP constantly reminds me not to ignore the possibilities of other problems.
Brief update: I had chest x-rays and a gallbladder ultrascan (since referred pain from gb can end up in the upper back/chest) and both are normal, so good news there, but no more idea about this pain.
I like your GP's advice, and I'm cautious about trying not to pin all my symptoms and pain on the low B12. I've thought about fibromyalgia too but know it's hard to pin down a diagnosis. I'm pretty frustrated at this point and feel sort of foolish going back to the doctor again and again saying "It still hurts... a LOT" and am thinking I'll try to wait it out and see if the B12 injections start to help. I feel like I'd be 'giving in' to take ibuprofen or naproxen or the like to get a break from the pain, but I need some relief. I find that a heating pad helps, at least to relax the muscles I'm holding so tight against the pain. Maybe a massage is in order next?
Thanks so much for the supportive words - it helps!
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