I was diagnosed with PA 18 months ago( not by my GP - I had to consult a private GP because my GP thought that serum result of 150 was ok) To cut a long story short after the usual 3 monthly injections proved inadequate I had to resort to self-injecting. My symptoms improved no end and I was much better. Even the numb feet have just turned into burning feet. Great . Now, all of a sudden I get times when I fall sleep very suddenly (whilst sitting down!)at any time during the day. it is a bit worrying .I haven't got the exhaustion like before . Do any of my fellow members get this happening, bearing in mind that I have been pretty well symptom free for so long, and I haven't changed anything? Would be pleased to hear if anyone has thoughts on this phenomenon . I suppose it could be a separate issue and have nothing to do with P A .GP took blood test, but as I haven't heard back I assume that it is normal
Whilst typing this, I have 'dropped off ' at least5 times. I wake with a jerk.
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wedgewood
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Do you think it's chronic fatigue? I got diagnosed a month ago but the dr thinks ive had it for years. I have the antipariatel cell antibody. I'll get so tired out of no where I'll get flu like symptoms and dark circles start forming I look like a corpse. It might be a different thing maybe chronic fatigue. Maybe you need some testing done... I'm constantly tired since I was a teen. Exhausted
Or do you, Ladyawkward, think your "CFS" is actually B12 deficiency??! It seemed it was for me and I feel I've lost lots of life that treatment 20+ years ago could have given me back.
Please, don't let them fob you off with a dx of "CFS" when you need B12 treatment tailored to eliminate your symptoms to stop your body sustaining more long-term damage.
Well I was diagnosed with chronic fatigue and fibromyalgia at 16 and from an mri it showed I have psoriatic arthritis although no rashes...
I told my naturopath dr this and he said fibro and cfs are often "lazy" diagnosis. So he ran tests and found the antibody cell in my stomach and is treating me with magnesium and b12 IVs twice a month and I'm doing self b12 injections twice weekly. It's been a month and I still feel bad and on high iron. So meh maybe this will all take a while
True :/ on the plus side my mom who has mom instincts (haha) has told me I don't look as ill anymore from the other times I'd come over having such dark under eye circles despite the makeup I piled over them. So it's a start! Probably going to take a year minimum
I find 2 steps forward 1 step back (sometimes 2 or 3 on a bad day). Subtle improvements won't be so noticeable on a daily basis but keep a diary of symptoms and look back a year from now and you'll probably be surprised ☺
You are right, but it's the fact that it's suddenly come upon me that's disconcerting.Someone suggested looking into thyroid problems .Thanks for your thoughts
Can anyone tell me a good source to buy self injectable B-12? My hematologist refuses to give me more than once monthly injections and insurance won't approve more often. I feel SOOOO tired.... My IF (intrinsic factor) antibody level was 13, which is 13 X normal!! So basically I cannot absorb any B-12 I ingest orally. My symptoms were severe--- numb legs and arms, feet asleep, electrical jolts every time I moved, lots of pain that all went away when they finally diagnosed me and started the shots. I even developed swelling in my cervical spine called SCD (subacute combined degeneration) which can only be seen with high res 3T MRI.
I was hospitalized for high dose prednisone IV (before they knew diagnosis) and developed DVT And multiple blood clots in my lungs... It's been a nightmare...
Please advise on where I can get injectable B-12... Thank you so much.
You have to get it through a dr. Go to a naturopath with your lab work showing you need b12 and they can send it to your pharmacy to pick it up and depending if your insurance covers it youll get 6 to 10 shots basically a month. Mine only gave me 6 vials last month but 10 this month not sure why it changes but you need to see a naturopath
I have been studying the whole b12 thing for over a year...day in, day out...when I am not asleep!
I am a fellow sufferer and have a complex medical history which was initially diagnosed as Fibro and Chronic Fatigue Syndrome/ME.
Nine times out of ten if you are found deficient in B12, you will also need to supplement on Vitamin D and Folic acid daily. Very recent studies have shown that now, instead of 5mg of folic acid a day to aid the ingestion of the supplemented B12, folate supplementation is better.
You also need to check ferritin levels and often, also thyroid function but wven after all of this...if you are one of the few lucky ones who manage to get a doctor who will take the deficiency seriously, you will struggle to get the required adequate protocol of treatment as set out in medical guidelines.
Many B12 deficient sufferers end up self injecting as one injection every three months will not be enough to reverse some of the damage done by the deficiency being left untreated, misdiagnosed or under treated for so long.
The PAS or any B12 groups on Facebook will help you get your life back. Xx
Yes they need to all test ferritin! My hemoglobin was normal but ferritin is 7! 15 is considered the really low end. My naturopath said around 60 70 or 80 is what you should be. He's testing it again this week it's been a month of iron and b12 treatment
You say you have anti-GPC antibodies. That means you probably have gastric atrophy and achlorhydria (lack of hydrochloric acid).
Iron is absorbed a lot better in an acidic environment, so achlorhydria will greatly inhibit absorption.
Taking iron with a combination of citric acid and ascorbic acid (vit C) helps with the absorption, by making the stomach acid and because those two grab hold of iron atoms and take them into solution - which is required for absorption.
I take my acids in the form of lime juice - with tonic water (and a bit of gin on weekends).
Thank you too for info! I take any supplements with a 500 mg vitamin c. So I take iron twice daily with one 500mg vit c also! Yeah he said I domt have much stomach acid at all and it's making it hard to get nutrients when I eat he said that's why I might always feel hungry because I didn't absorb what my body needed. Usually when I eat a fortified cereal after eating dinner or something I won't be hungry anymore
I take Solgar's Gentle Iron. It's 25 mg of elemental iron as the bisglycinate. It's much less disturbing to my gut than the iron sulfate I used to take.
I think that sounds like a good idea wedgewood , however it might pay to have a full blood count and your Vitamin D levels checked in case there is something else going on.
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Thanks for that! I've picked up this computer business without any tuition. So I don't know all the niceties.Very useful. My children and grandchildren are all far away New Zealand and Germany ,so no help from there
Mine was thyroid related. But it was lack of T3. They rately test for it in UK so as test they did do was within range they said ot was not thyroid. I had to have private test to find this out but GP wouldnt prescribe it. So had to get T3 privately but it worked and still does.
Diabetes can also do that if your blood glucose is very high, but you would have other symptoms like being very thirsty and going to the toilet a lot. If you can get them to do tests other than TSH it should be Free T4 and Free T3 (not total T4 or T3). They should also do antibody tests TPO antibodies AND Tg antibodies. If they do them at all they only do one but it should be both. This will tell you whether you have Hashimoto's. It is likely you might because it is auto immune and so is PA so often go hand in hand.
Don't think it's diabetes,as I don't have the symptoms and I occasionally do urine dip-stick test.Thanks for the tips regarding thyroid tests. THANKS VERY MUCH INDEED!
Diabetes can also do that if your blood glucose is very high, but you would have other symptoms like being very thirsty and going to the toilet a lot
I was diagnosed with diabetes back in April (Blood Glucose of 12 mmol). I was quite surprised as I didn't have any of those symptoms. I'm famous for going out all day and not needing the loo (8 hours and two beers). If I'm on a booze-free day then I'll stay in bed for 9 or 10 hours before I need to get up.
I was hoping it would explain my fatigue, but that's just the same - and still needs B12 to prevent it.
I would recommend getting an Hb A1C test done for a definitive decision.
wedgewood I have exactly the same problem at times. I just can just unexpectedly fall into such a deep sleep at any time of day (even an hour after getting up) and wake up a couple of hours later feeling totally disoriented and wondering what on earth happened. I also feel it coming on at work but have to fight it so hard.
I still not sure if it is due to PA or my autoimmune thyroid disease but it is definitely worse if I've forgotten to take my supplements for a few days and had disturbed sleep.
Do you think that there could be another underlying autoimmune condition. Once you have one you are likely to be susceptible to others and they do seem to hunt in packs
I would definitely get your iron and vit d tested and probably thyroid could do with a check. TSH, FT4, FT3 and thyroid antibodies.
Also ask your doctor to consider sending you to a sleep clinic.
Sleep apnea can also be to do with the thyroid. I was sent to sleep clinic. Given CPap machine. Got T3 (privately as NHS would have nothing to do with it) and stopped dropping off during the day (one minute awake, next asleep, then woken up suddenly having dropped off for several minutes or just one second), and was discharged from clinic. So mine was obviously to do with the thyroid not the P.A.
I refused referral to sleep clinic as I knew mine was down to thyroid. It's just started happening again lately as I think I need an increase in T3 (self medicated too) just waiting for blue horizon blood test.
Thank you for all your help and encouragement over the past year.
I used to get what you describe and wondered if I had narcolepsy! I found it quite frightening. This was in addition to the fatigue. Since I have been daily SI it hasn't been a problem unless I have got my cofactors out of balance so that could suggest there may be a link in me.
Only a couple of weeks ago I had a couple of days when I could NOT keep awake. It's a bit like someone has hypnotised me and with a click of the fingers I'm asleep! Again! And again! I'm not sure what got me over it but I did use a few squirts of B12 Boost Spray (methylcobalamin) and that seemed to work. I would try that if I found it happening again.
As it has suddenly affected you too could it be a virus that is going about and we're two that have mentioned it?
You have been so good for so long I'm sure you have got all your cofactors sorted but just wonder if your body has changed it's absorption rates of things and maybe additional supplementation might be worth experimenting with?
I've had to change my folic acid to methylfolate and I constantly top up my dietary intake of potassium and magnesium with potassium chloride from LoSalt and magnesium chloride flakes.
I take a couple of tablets of a broad spectrum multivitamin and mineral supplement per day but occasionally I can't get things to work and find taking an extra one of these helps. It's rather "shooting in the dark" but it suggests something gets low!!
I also take one iron bisglysinate capsule and try to follow it with fruit juice for the vitamin C boost that it requires for metabolism, as I'm aware of the possibility that my iron levels, although blood tested OK, might drop if I don't.
What about vitamin D (and K2 to go with it?). That's another one that can stop you in your tracks.
As someone who ethically choses to eat meat but doesn't like it, I have had to increase my meat and fish (which I used to hate! ) intake to keep my B12 metabolising. It appears that I get short of essential amino acids without doing that.
Selenium with vitamin E can be a problem, causing "ill thrift" and failure to live after birth in animals but I'm not sure of the practical implications in people.
What about calcium too? I've needed that a couple of times but have found a few Rennies (which have additional magnesium) have been enough to iron out the odd glitch. That's more linked to automatic control mechanisms (like not biting your tongue when eating and finger-thumb connection) but I'm just trying to think through everything! It does help regulate heart rate so can interrupt normal "living" suddenly.
Please can I add a word of caution to everyone: I am just saying what I have found works for me and I am NOT recommending anyone takes additional supplements WITHOUT carefully researching them thoroughly as many things do have upper limits above which harm can happen AND all things interact so increasing one thing can unbalance other things.
Good luck Wedgwood! Please let me know what you find.
Thanks so much Deniseinmilden for your well composed reply. It is so useful to have input to mull over .i know that you are not suggesting that I should try exactly what you did, but you can't believe how constructive I find the possibilities. Thanks again, Mary
I occasionally have days when I feel really tired and just want to sleep - always seem to have a cough or something going on at the same time. A colleague at work who doesn't have B12 problems recently experienced a 24 hour bug that left her unable to do anything but sleep for 24 hours ... and I had the same a couple of days later.
The other thing I've noticed recently is that the days when I feel really good are those when my blood oxygen levels show up as 98-99 ... and if things drop to 96-97 that's when I start to feel out of it. This is a much smaller change than would be taken as being indicative of a pulmonary infection causing problems with oxygen exchange in the lungs but it obviously only takes that much of a drop to make my brain feel that things aren't right.
I had something that sounds very similar - I've never entirely got to the bottom of it but I've managed to (mostly) stop it happening.
After being diagnosed with PA seven or eight years back (at roughly same level as you) and on three-monthly B12 jabs, I still used to have points where I just lay down and slept for several hours, usually in the afternoon or evening, as if I was drugged. I'd go to the GP and they'd give me tests and say I was fine.
I resolved it by accident - I went on a low-carb diet to lose weight as part of which I gave up bread and pasta. Pretty much immediately my general lethargy lifted and I worked out through trial and error that the drugged sleepiness only came back when I ate wheat - and can last a few days: I feel a bit like I've been anaesthetised.
I now live strictly gluten free and it only happens once a year or so, if I get it wrong. I suspect I'm coeliac but never got satisfactorily tested. GP wasn't interested at the time, then I had a negative private test but was already mostly off gluten.
It might very well be worth looking into coeliac, but you do need to make sure you keep eating it until you've been properly tested. I've also wondered if it was blood sugar related (as I also get thirst and sugar cravings if it happens) but all tests have been OK.
High doses of B12 can cause a drop in your potassium levels which leads to chronic tiredness. Suggest you research "low potassium levels" and if other symptoms apply then of course have your levels checked out.
I hope it turns out as simple as this as it must be both worrying and inconvenient.
Low B12 and underactive thyroid often go together, so do ask for your thyroid function to be checked. If our T3 levels are inadequate we often feel very tired.
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maybe this will all take a while
) intake to keep my B12 metabolising. It appears that I get short of essential amino acids without doing that. 
Going Round in Circles - ???
Help with B12 and PA diagnosis? In UK
B12 injections discontinued
