I've just this week head my first B12 injection yesterday. But I can't help wondering if the symptoms I've been suffering for forty five years may be related. That I have put Down to things like depression. Is there any real difference to the symptoms or is it a case of I'll never know?
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IzzyMadd
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Reading the signs and symptoms of PA and B12 Deficiency in the above links - could possibly reassure you that you are right ! Are you taking any other medications for other conditions that may also be related to PA or B12D ?
How often are you having your injections ? They should be more frequent if you have neurological symptoms.
Hi Marz,
I've literally just had my first loading injection yesterday. I've been diagnosed as having fibromyalgia for five years depressions for forty five years and a back injury for twenty. All of which have come with various medications especially the depression.
Hi IzzyMadd - you mention further down that your thyroid was normal - umm ! Did you actually see the result ? What was tested ? Normal after all is an opinion and not a result.
I have a thyroid issue and like you was diagnosed with Fibro in 2000 and the auto-immune thyroiditis in 2005. LOW T3 is often the cause of Fibro and should be ruled out. GP's often ONLY test the TSH which tells you very little about thyroid activity.
TSH is a Pituitary hormone that stimulates the thyroid into producing T4 which is a storage hormone. This has to convert into T3 - the ACTIVE hormone and which every cell in your body needs.
Also being on the Thyroid Forum for over 4 years it is apparent that people suffering with Fibro often have thyroid anti-bodies - called Hashimotos. This is the MOST common thyroid condition in the world. So this needs to be ruled out.
Auto-immune conditions do come together - I have Crohns as well as the Hashimotos ..... so yes PA and thyroid are quite common.
thyroiduk.org.uk/tuk/testin...
When I was diagnosed with FM. I was with a different doctors and went through a full range of about twenty different blood tests. Also thyroid issues are a big problem in my family and as such it's something I keep a close check on
So do you have your Thyroid results with ranges ? - as you are keeping a close eye I expect you have recent copies of results .
Are you also on the Thyroid UK Forum here on HU ? There could be lots of interesting information for you .
clivealiveForum Support
Hi IzzyMadd and welcome to this community and as Marz says there are many symptoms of P.A and B12 deficiency which are easily misdiagnosed by doctors - one of which is "depression".
Can you explain why (at last) you are getting injections and what diagnosis has your doctor given you?
Hi Clive Alive,
On the 5th of March this year I caught influenza which went on for 7weeks five of which I was bed bound. And since I've been so incredibly weak sleeping twenty hours a day. Very nearly suicidal. So breathless that I'd get out of breath answering the door. And as I've been living bed since March that's just six feet I'd move.
Then I had a review of my meds due at which they took the normal blood tests. Followed by a worrying second set. These showed low folic acid and PA. But also indicated normal thyroid and lowered cholesterol.
Welcome!
I was diagnosed with PA as a young woman shortly after the birth of my second child. I had very obvious signs of stomatitis and glossitis which means inflammation in my mouth, mouth ulcers and a swollen tongue. I would fall asleep at the drop of a hat and I didn't have any energy. I was not depressed, I was struggling to stay awake and function as a human being. My arms would tingle as would my toes and I was lost as to what could have been wrong. Only because my child was born anencephalic ( failure of the neural tube to form) did doctors investigate further. They found folate, zink and B12 deficiency which prompted invasive investigation with sternal bone marrow aspiration followed by a Schilling's test (24 hour urine collection after radioactive B12) which conclusivly diagnosed me as PA and not just B12 vitamin deficiency.
In my opinion, if you had PA for 40 years, I think you would have had very definate symptoms of a life threatening anaemia. Like me you would not be producing healthy red blood cells, instead they would be swollen and bursting before the standard 120 days life cycle was over therefore severely reducing your oxygen carrying capacity making you very symptomatic.
I hope once your B12 levels increase to the therpeutic range you will feel much better however, keep an eye on the trace elements too as another deficiency can severly rock the boat.
Hi Grany56,
I think you are probably right as my crash so to speak was the 5th of March this year and I showed no signs of recovery even after two doses of antibiotics which unusually for me knocked me out. As I'm normally unaffected by them. Like you though I'm a little early as I'm only 49
PA is an auto immune disorder, unfortunately once you have one auto immune disorder, you are more likely to get another. However, since you are in the younger age bracket, doctors are unlikely to keep an eye on you the way they should. Therefore, you need to become your own expert, keeping a copy of all blood results, a journal of symptoms and monitor any new symptoms carefully for the possibility of new illness.
Due to lack of intrinsic factor in your gut, you will be more susceptible to other malabsorbtion issues. For example, I have lactose and gluten intolerance ( but not celiac disease...yet). My iron levels are low ( recent problem) as are most trace elements despite supplements.
In my case, doctors put everything down to PA even when I resembled a gargoyle which was finally diagnosed hypothyroidism (subsequently Hashimoto's).
I don't mean to frighten you but I cannot emphasise strongly enough how important it is to keep yourself informed and not be afraid to challenge decisions of some ill informed healthcare professionals.
Due to lack of intrinsic factor in your gut, you will be more susceptible to other malabsorption issues.
IF has just one job to do - transport B12 across the gut wall. It is not involved in any other absorption process.
However, the condition that causes low IF in most people is AMGA (Autoimmune Metaplastic Gastric Atrophy). This destroys Gastric Parietal Cells which, as well as producing IF, make hydrochloric acid. The lack of acid (achlorhydria) caused by AMGA can cause many other problems - especially with iron absorption.
I have wondered this too, and what you say about blood cells reminds me....despite supplementation, and b12 serum of 700, my red blood cells remain enlarged, too few, and too much iron in each one. Does this mean I should see a specialist beyond my GP, who is happy as long as my b12 levels are high enough?
Hi,
I think the size and nature of the red cells are part and parcel of the condition and don't change but the B12 levels are apparently kept artificially high which is so the body can produce more cells overall. Meaning that while it's still making a percentage of Large cells there is the right number of normal cells. There's never any harm getting extra checks though. I also suspect the percentage part varies from person to person which is why some need more injections than others
My rbc *count* is always low and the size is enlarged, the iron in each is higher than normal. I'm thinking about doing a schilling test again. It was negative in 1995 but I wonder....
If your iron levels are too high this could be toxic. I would ask for a referal to a haematologist.
If each cell is larger but there's a normal amount of iron in the blood, then the amount of iron in each cell must be higher than normal.
Sorry but I have to disagree - I can trace back my symtpoms over 40 years. And they went when I started to get the levels of B12 that I actually needed.
A B12 deficiency can take decades to develop - because the liver is so efficient at storing and malabsorption does not mean non-absorption. What tends to happen is that symptoms snow-ball towards the end - say over a 5 year period as the absorption problem becomes so severe that the ability to store and recycle in the liver is severely effected.
People vary a lot in the point at which different symptoms kick in. I had anxiety and depression for over 40 years, and neuro symptoms (carpal tunnel for about 30 years and tarsal tunnel for about 20 before I finally started to experience severe fatigue and balance problems in my late 40s/early 50s - and was diagnosed as a result of a blood test in hospital after I broke an ankle falling down the stairs in the middle of the night.
The acid test is really whether the symptoms are alleviated by B12 ... and to add to my story - things got a lot worse in the 18 months until I figured out that i needed a lot more B12 than I was being given and started taking it in the doses that I actually need.
At no point have I ever had any visible signs of anaemia.
I was first given B12 20years ago as they refused to accept the truth about how I was then. And it had no effect at all it's only been the last few months that my condition has worsened and unsolicited I was told that a friend was concerned because I'd been look so gray and I'll leading up to now.
when I was finally diagnosed I didn't really notice any benefit for at least 9 months ... ie my 3rd loading shot - and then it was very short lived. Wasn't until I started treating myself with levels that I really need that things really started to get better, ie another 6 months later - so I still wouldn't rule out it having been B12 all along - just that you never really got enough B12 for long enough last time round
That's odd because I had first loading shot on Friday and I get my second tomorrow then about every two days after that for six shots. And the nurse was saying that once the twelve week shots get going then I shot have a level through the roof. I understand the paint things Rosie but I wouldn't have thought that false. Especially here as they tend to air on the less is better side. And with me having six shots in two weeks? Apart from feeling like a dart board if the trend carries on it looks good. Perhaps I'm just feeling the placebo effect. I'll have to wait and see but fingers crossed I hope.
The level in your blood will be through the roof - and then it will gradually go down as your kidneys remove the excess B12 - but it isn't the level in your blood that counts - its how much is getting through to the cells. Unfortunately some people - myself included - have an auto-immune response that means they create a protein that binds to B12 keeping it in the blood and preventing it getting to cells when the levels in their blood are high - leading to a functional deficiency - you are okay if there is more B12 in your blood than the body can bind but once the level drops below that you end up with loads in your blood but none available at the cell level where it is needed - functional B12 deficiency. For me that point is reached within 24 hours of a B12 shot but I'm at the extreme end of the scale.
Hello granny 56,
I had most of your symptoms, along with, continuous, colds, flu, tonsillitus, week after week, then my doctor had a brain wave & decided to test my blood. P.A. I was not tested earlier than 6 weeks because I was showing symptoms outside of the medical reccomended age of 60 & 75yrs then, 20 yrs ago. I think.
IzzyMadd in reply to
Hi Vala,
I to was showing signs similar such as depression but reading these comments I think my PA. in new on top of the other problems I already had. But I to was younger than average at 49
Granny56 in reply to
Hi Vala,
If my son had been born healthy, then I would probably not have been diagnosed and might even have lost my life. I was a healthy looking 28 year old whose symptoms of extreme tiredness was put down to pregnancy. Even in the later stages of my pregnancy when I began to vomit during the night and could only describe my baby's movements as erratic, as if my baby was epileptic...no one took notice.
I delivered my son one month early, live at 36 weeks gestation and he died when the umbilical cord was severed. The attitude in those days was that I was young and more baby's would follow. The only thing I was told was that anancephaly was a severe form of spina bifida. It was only later through my own research that I found that it was related to low folate and B12 both of which I had but was unaware. In those days, folate supplements were not given routinely to pregnant women.
I understand that financially, doctors cannot screen everyone for every disease and that the symptoms for many illness overlap but I had very specific symptoms which could indicate PA which were ignored.
I knew instinctively that something was wrong as I am sure many of you on this forum do too. The only way forward in my opinion is too keep ourselves informed, gain strength in numbers, and collectively challenge the misconceptions.
Thanks to you all for your comments and any more that come along. Hopefully I will feel better at least and perhaps back to pre March condition at least. Soon as the injections settle down. At the moment the folic acid tablets and diffundox are making me a virtual zombie. But I'm used to that with the first few days of any new meds after forty years. So hopefully things will be better soon 
in reply to IzzyMadd
Of course you will. Can't be any worse, surely? We are here for you. Good luck.
IzzyMadd in reply to
To be honest I'm feeling "different" already as it seems to have been picked up very early. Other than the parenthesia which has just worsened somewhat I think most of the symptoms should improve. Fingers crossed
I hope you feel better soon however don't assume the parasthesia is PA related. If it doesn't resolve soon look for another cause. Nerve impingment for example due to a slipped disc can cause parasthesia as can many other issues.
I had problems before from my fibromyalgia but since at least March it has been profoundly worse. Which in the PA literature they refer to it a neuropathy which is in line with what would happen with low oxygen levels and the blockage that would be caused by larger than normal blood cells trying to enter capillaries only big enough for single file normal sized blood cells. And as the damage can be permanent I assume due to necrosis of the nerves endings then it would be more in keeping with the sudden onset of PA rather than a more gradual condition such as carpal tunnel. And the issues in my lower extremities I know is caused by a back condition which the doctors have dismissed for twenty years as not capable of such effect. Yet as the sufferer I know it to be the case. But I intend to follow your advice and more closely monitor my ongoing conditions thanks
Peripheral neuropathy caused by PA hasn't got anything to do with lack of oxygen because large blood cells can't get through the capillaries.
It is caused by the inability of the body to create enough myelin. Each nerve is surrounded by a myelin sheath that acts like the insulation on an electric wire. It cushions the nerve fibre and helps with transmission of nerve signals.
One of the processes that B12 is important for is the production of methionine - which is required for myelin production. Low B12 means low methionine means not enough myelin.
Luckily the myelin sheath can be repaired when damaged by a B12 deficiency, so the neuropathy can (slowly) be resolved.
Diabetic neuropathy is caused by a lack of blood to the nerves. This prevents nutrients reaching the nerves and they die off. This is much less likely to improve with treatment.
clivealiveForum Support
IzzyMadd if you would like to read my P.A.. story just click on my blue name (above) - if nothing else you might drop off to sleep.
Age has little or nothing to do with P.A, as I was 17 when I started on my journey, it wasn't diagnosed for thirteen years and I am now "clivealive" coming up to 75
Age wise I was thinking of the literature I've read which quotes an average age of 50 ish but I realise age ranges are far from true
I was 25, and I tested negative on the schilling test. I've kind of rocked along with supplementation but now that I'm 47 I see memory problems - specifically with proper nouns- and it makes me wonder if I need to look deeper. My b12 serum levels are always good so my GP says she's happy with that.
Ashweb901 as you know any serum B12 test will be skewed as you are supplementing and of course your "GP says she's happy with that." she doesn't have to do anything.
You could of stop supplementing for several months to see if you levels drop dramatically, but that would possibly be dangerous and damaging to your health, so it's a bit of a "catch 22" situation.
I'm not a medically qualified person but how much B12 are you taking? Could you take more and see if there's any improvement? It's quite safe and you can't "overdose" on it as any excess is excreted.
Your Schilling test 22 years ago said you didn't have P.A. so why are you thinking you have the P.A. symptoms? Have you been re-tested for P.A. since?
I had a Schilling test in 1968 which, like yours was also negative. and had another (unheard of) one in 1972 which confirmed that I did have P.A.. Mind you, there was good cause to suspect it as I'd had gastric surgery 13 years previously.
That's a good point! I did stop b12 supplements for a month and the scores held high. I don't have symptoms of PA but I wonder about the neurology given my blood cells are still enlarged even when supplementing. Maybe I will have them schilling test me again. I had two csections and a tummy tuck since my last test and I learned that my sigmoid colon is extra long and "redundant" so that could be at play related to absorption.
Hi,
I'm VERY new to all this but a fast absorber of facts. And from what I've seen the neurological symptoms seem to be the slowest to return sadly if ever. Which fits in with the large cell size as the point of issue are all fed by the smallest of capillaries which can't cope with the enlarged cells which may well get stuck meaning some problems may have a temporary reprieve as the cells break down but then another enlarged cell starts the process of again.
As for this Shilling test the only shillings I know of as yet are those that were worth twelve pennies. But if it's a test that can answer a question either way go for it. I have hearing tests every five years hopefully they will have come up with something for my deafness type. But without the tests I'd not know. So perhaps yours is the same. So go spend a shilling or two
Lol! Love your sense of humor. Not sure what they'd even do differently if I tested positive. Supplements are the treatment regardless, yes? That makes so much sense about the large blood cells. Now when I have CRS )"can't remember shit") I'll blame it on my large RBCs!
Welcome to my world as I've got a memory dyslexia that means i have a short term memory of five minutes tops. Then two weeks later remember every word. Try explaining that to people. Also I have fibromyalgia which causes what's called fibro fog which means that even the simplest of tasks like going to the toilet. I have to stop and think "what was I going to do?" When I've managed to stand up. And now the PA so it's just a case of pass me another beer and perhaps I'll wake up and remember rather than forget ;-). I'm so bad I don't even know what day of the week it is half the time. I think... So while it's a bi**h it saves a fortune on presents 
If you are in the UK Ashweb901 I doubt you'll get another Schilling test because of the problem getting the radioactive B12 so the test is no longer available - at the moment..... but who knows? It was supposed to be more accurate that the modern test.
However if your "two csections and a tummy tuck" (or any dental treatments) were carried out using nitrous oxide the gas "inactivates" and "depletes" B12 per Martyn Hooper's book "What you need to know about Pernicious Anaemia and Vitamin B12 Deficiency".
bummer about the schilling test. I don't have PA symptoms like I had when I was found to be deficient (extreme fatigue, some neuropathy) back at age 25. just memory issues with proper nouns at age 47. Could just be my depression meds. I don't know. Red blood cells are (still) macrocytic, too few in number (not radically low) and each cell has more than a normal amount of iron (otherwise I'd be anemic). I gave up wheat several years ago and have noticed I don't get anemic nearly as easily. Have had a celiac test with endoscopy, and I tested negative twice for that. I do have hypothyroid, but I take synthroid for that. I know my testing for thyroid has been less than comprehensive, but since I'm not fatigued, I think I'm okay.
The sigmoid colon does not absorb nutrients, that's the job of the small intestine.
From what you describe, I doubt that you have PA. may I ask what tests did you have had which described your blood cells as macrocytic with excess iron?
Hi Granny56, sorry to highjack this thread but do you happen to know what kind of deficiency/anaemia comes from macrocytic blood cells AND excess iron? I have this combination along with low b12 but reasonable folate.... thank you. 
That's my case. Serum Folate is always reasonable. Serum b12 is skewed high by supplements, naturally. Size of RBCs is high, number is low, amount of iron PER CELL is high (total - both serum ferritin and also the stores - is just passable for normal), but that's my body compensating for the too few cells....at least that's the way I understand it.
Thanks ashweb, it's always interesting to know other people's experience. Do you consider you have some kind of b12 anaemia or PA?
My b12 "issue" (no longer deficient because I supplement) is "idiopathic," meaning they don't know why. I'd love to do further testing than B12 serum, but I've already had my checkup this year.
Past biopsies for Celiac are negative. The GPs and the GI doc are uninterested in figuring out why my RBCs are still larger than normal, fewer than normal, higher per-cell iron than normal. They just shrug and say my serum levels are fine. It seems that my mind is sharper when I supplement with both b12 and iron. I lean a little anemic on the serum ferritin side and once when I trained for walking a half marathon my stores were down to 20. Now they're about 50. I would love it if they were 80.
My great-grandmother's RBCs were large, too, and they had to hand-count them b/c the machines didn't pick up on the accurate number (or something like that). So it could be genetic.
I have an extra-long sigmoid colon, but as someone else pointed out, that's not where nutrients are absorbed.
Is your iron situation that your serum levels are higher than normal, or just the iron-per-cell?
I guess if granny had it there must be some predisposition that way... And if you can manage the problems then that's all we can ever do. Blood is complex. I had helicobacter pyloris a few years back so that's one that can upset b12 and cause large cells... Apparently they like iron too so high iron store is another indicator ... I'm just awaiting a proper iron test as my ferritin was a bit high... Ho hum.. Best wishes 😜🍀
Have you had your thyroid function checked?
Thyroid issues are rampant in the family and as such I have it checked every time I have a blood test. And it came back fine. Thanks
Hi Izzymad
The PAS has members from age 2 approx through to those in their 80s plus.
pernicious-anaemia-society.... 01656 769 717
Another useful website
Link about nitrous oxide
Blumming heck. 17yrs old. No wonder you are 'CLIVEALIVE'.
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