I was hesitating to write. First of all, English is not my native English. Secondly, I have discovered my IFA last week and it is a completely new thing for me. I would love to hear from you AS suffers if my symptoms are like yours. I know it can vary but on Tuesday I have an appointment with a neurologist and I would like to be sure (?) about my symptoms.
I struggle with my symptoms for years (around 12). I was getting sick very easily. I had to avoid places with crowds. I had to give up public transportation. The other symptom was fatigue. Which grows very slowly. Year by year. At the beginning, it was only just being little more tired. I had less energy. Going to sleep earlier. I am also very sensitive to cold. I need much warmer clothes than other people. I started to have chronic sinusitis. I went to laryngologist a few years ago and he could not find any real reason for me to have my problems. I had my tonsils out. It helped a little. I started to have pain all over my body. I had/have chronic pain in my neck. Started to have migraines. I also developed histamine intolerance. I am on a quite strict diet. A have almost every day low-grade fever which makes me even weaker. I started to accept my situation. Maybe because of my Hashimoto and advanced endometriosis I have to suffer from chronic fatigue. I had a little hope in me and I was testing one new supplement a month. For years nothing helped. And I tested magnesium citrate. It worked after one tablet! I got rid of my fatigue. I was so happy! Started to live my life fully! But it lasted only for 3 months. I couldn't find the reason. But after this event, I knew that my body is able to be more strong. That gave me hope and strength to start diagnosing myself again. I found fantastic rheumatologist (I suffer from Hashimoto so I thought that it is a good idea to rule out other autoimmune diseases). The rheumatologist was the first doctor who believed me and didn't want to send me to a psychiatrist or give antidepressants. We made a huge amount of blood tests - all negative. She thought about fibromyalgia but was not sure about it. And she did not give up. The other doctor (orthopedist !!) by coincidence found neurological symptoms in me. Numb left leg. I did not notice that. At that time a had an incidence of itching all over my body, antihistaminics and even steroids did not help me. I was so miserable. The itching lasted 3 weeks! I took one painkiller and my main itching was weaker. I started to suspect that it is neurological. I went to neurologist she gave me Neurontin which helped me!
So at the moment I have neuralgia and numbness and tingling in my left leg and mostly left hand. My left hand is weaker when I write on the keyboard. I also have Chvostek sign. New symptom tetany. Tingling in my face. Usually, the symptoms are stronger in the evening or after tiring day. I have also weaker muscles in my face. I can't smile as much as before. Also, stress makes me weaker. I made a test which ruled out hypoparathyroidism. And my endocrinologist suggested some kind malnutrition or digestive problems. I ended with a positive IFA.
I wonder if anybody can relate to my symptoms and give me a piece of advice what the neurologist should prescribe or test.
Sorry for such a long story. I needed your support. So happy to find this forum! Wishing you all well.
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Kosakosia
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So many symptoms that I forgot to add that I have difficulties in speaking and remembering. It is much harder for me to think, to listen and to focus. I know it is hard to distinguish it from the side effects of Neurontin.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
As Hidden says If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
I am not a medically trained person but have had P.A. for 46 years and I'm now over 76 years old.
Older test before suplementing orally B12 (methylocobalamin) and methyl folate. And at that time I took steroids which I think helped me to absorb B12.
MCV 92,0 fL 80,0 — 97,0
Ferritin 31,2 ng/ml 10 — 291
Homocystein 19,06 μmol/l 3,70 — 13,90
After supplementing orally B12 (methylocobalamin) and methyl folate. And at that time I took steroids which I think helped me to absorb B12. I have no results from before.
My Folate 11,34ng/ml3,89 26,8
B12575,4pg/ml197 771
That's all. I cannot find a lab which tests active B12. B12 seems high .... do you think it is too high to start supplementing?
Hi Kosakosia...just a quick comment here (I'm also going to leave a longer, seperate reply)...steroids can impede the absorption of vitamin B12, calcium, vitamin D3 and folate, (and perhapsmothers) rather than help absorption 😖.
So whilst the steroids may have made you feel better, they won't have helped with absorption.
Also - is your doctors exploring the reasons why you improved while taking steroids?
I took steroids for my very strange sudden attack of allergy symptoms like itching all over the body and contact allergy which now I haven't even stop using steroids... Strange.
The positive IFA result means that there is a 95% chance that you have pernicious anaemia so a positive result is almost always interpreted as a firm diagnosis of pernicious anaemia (which is an autoimmune condition).
The symptoms you described, including the neurological ones, are all symptoms associated with B12 deficiency.
Once pernicious anaemia has been diagnosed, it is usual (in the UK) to begin treatment with B12 injections (because those with absorption problems don't usually respond well to oral B12 supplements).
When neurological symptoms are present, UK guidelines advise treating with intensive B12 therapy, immediately. That is, 6 x loading doses of 1mg hydroxocobalamin on alternate days, and then injections every other day until there is no further improvement. (Not sure where you live but treatment regimes do vary according to country).
When neurolgical symtpoms are present, it's important to begin treatment as soon as possible. When pernicious anaemia is present, treatment should begin immediately rather than wait for serum B12 / active B12 levels to fall below the reference range, since the levels WILL inevitable fall lower and lower. This is especially important because you have symptoms now.
Have your doctors started you on B12 injections? Or at least some sort of high dose vitamin B12 treatment?
About the Hashimoto's - this is also an autoimmune condition, like PA, and autoimmune conditions do tend to come in clusters, so it might be worth asking your doctor to do a full antibody screen to see if you have any other underlying autoimmune conditions.
As others have said, because you have absorption problems, it's important to keep an eye on folate, ferritin, and vitamin D levels (in particular). If you are still on steroids, you may also have to monitor calcium and potassium levels (since steroids can - but not always cause these to become low or deficiency. Low levels of any of these can make you feel very ill and also cause some of the symptoms you describe.
About the methyfolate - just wondering why your are taking this. Most people do better on folic acid and it has better bioavailability. Methyfolate can have some quite nasty side effects. The folate levels you quote below look okay so if you do supplement, suggest you use folic acid 400mcg as a maintenance dose. But be aware that some people don't need to supplement at all and over supplementation with folic acid can, again, cause side effects.
If you take vitamin B6 - B6 is Neuro toxic in high doses so take care that you don't over supplement (multi vitamins often have 300%+ of the RDA - and that's too much if you don't need it). Too much B6 can cause irreversible neurological damage, so best keep an aye on it, if you take it.
About your neurolgical symptoms. These can be caused by B12 deficiency, but also by many other things (including Hashimoto's). So,it's good that you are going to see a neurologist. The neurologist should be able to rule out any other causes.
Apart from a full neurolgical examination, here in the UK it would be usual to do and MRI scan of the head and spine (the spine is important since this is where neurolgical damage from B12 deficiency can be seen - though I'm not suggesting you have this). It would also be usual to do nerve conduction tests to look for what's called large cell neuropathy (again, not suggesting you have this - just that it would be reassuring to rule it out).
Back to the steroids - if you improved while taking these, there's a possibility that you may have an unruly inf inflammatory condition (perhaps autoimmune, perhaps not). It would be a good idea if your doctor did a blood test to check CRP and ESR (so called inflammatory markers).
If you have raised inflammatory markers (or raised antibodies from the antibody screen) these would suggest that further investigations are necessary. Here on the UK that would require a referral to a rheumatologist (a specialist who deals with autoimmune or inflammatory conditions).
I'm going to paste some links below that will give you more information about B12 deficeny and pernicious anaemia. But note, the treatment regimes are for the UK and these might be different where you are. The underlying principles about B12 deficeny and anaemia are the same so,will be useful for you (I hope 😉).
It looks like a lot of links but most are to one page documents - and most are quite easy to read. The longer one (the BSH guidelines) is a bit more complex but it has summary sections, which are a bit easier).
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
Thank you for such a long reply! Foggymy, you are a precious person on that forum! I really appreciate that. And I am lucky there is such a forum.
I think I really have to dig it by myself because the doctors seem to treat it in their own way. I am in Poland now. There is only cyanocobalamin injection available. I read hydroxo is a better one. I am going to buy it through the internet. I live in Cyprus. Pharmacies there are have a very small variety of medicines because that country is so small.
I have shown the IFA to GP and he, as a very young doctor, told me that b12 does not cause neurological symptoms(!!!!), really hard to believe! Then I received b12 and folate results and because they look OK I resigned to go back to him.
Tomorrow I will see a neurologist.
I started to take B12, folate and B6 for my homocysteine level.
I wonder what folate I should take. Why is ~the methyl one dangerous? Very interesting.
My CRP and ESR are always OK.
I have already printed the list of symptoms of B12 deficiency with points. And I have 61!!! I have also printed the BH Guidelines.
I am going to show it to the neurologist.
' 6 x loading doses of 1mg hydroxocobalamin on alternate days, and then injections every other day until there is no further improvement.'
As I understand (little lost in translation) I take 1mg every other day and if there is no improvement I continue until improvement.
My only concern is that the doctors will not prescribe injections because of my high serum B12 level. I am ready to try B12 because I have suffered for such a long time of my life. And there is a hope I will feel little better.
Thank you for all those links. This is very helpful!
I will keep informing you about my farther diagnosis.
Can you just clarify...you quote your serum B12 result as 12575,4 pg/ml (197 - 771 pg/ml)? Just asking because the comma seems to be in an odd place, so it's a bit difficult to interpret properly.
However, it does look very high. Did you have any B12 supplements prior to this blood test?
High serum B12 can be due to other underlying health conditions (liver or renal problems, certain blood conditions, in rare cases, cancer) so your doctor should want to investigate the cause of your high result (if what you typed in is correct).
If your serum B12 level is this high without taking supplements, it might be better to ask your doctor to investigate the reasons for this before you take more B12.
Also consider stopping the methyfolate and vitamin B6 to see if this makes a difference (over supplementation can give side effects that are the same as the symptoms of B12 deficiency).
Methyfolate - it's not so much that it is dangerous - more that most people don't need it, it's more expensive, has less bioavailability than folic acid, and can give some very unpleasant side effects (especially if taken in to high a dose).
If you're are taking too much vitamin B6 and methyfolate, that could be one reason for your symptoms (including the neurological ones).
Many people do take cyanocobalamin. Hydroxocobalamin is not 'better', just a different form of B12 - and different things suit different people. Cyanocobalamin is okay if that's what you can get.
Your interpretation about the frequency of B12 injections is correct. However, if your serum B12 is as high as you say, and you had not had any B12 supplements, it really would be a good idea to try and go through all this with your doctor before you start to self-inject with more B12.
And yes...it's difficult to believe that a doctor does not know that B12 deficency does cause neurological symptoms. We get that response here in the UK too. All too often. Sadly.
I think it would be a good idea to make a list of questions (based on some of the things above) to go through with the neurologist tomorrow. Also be sure to tell them what supplements you've been taking (many forget to mention these).
You mentioned earlier about allergic reactions and rashes and taking steroids for this? Was this diagnosed by a doctor? Perhaps mention this too as sometimes rashes and what feels like an allergic reaction can be down to other underlying medical conditions.
Sorry that there aren't any easy answers here. I think if I was you I'd:
A) stop all supplements
B) make sure your doctors investigate the reason for your very high serum B12 level (if what you've typed is correct) to rule out potential underlying medical conditions
C) ensure that your Hashimoto's thyroiditis is under control (because that can also produce the symptoms you describe)
D) because of your history of autoimmune conditions, rule out any other underlying conditions.
E) be aware that because you have Pernicious Anaemia, you will (eventually, if not immediately) require some form of B12 supplements (you should investigate your high serum B12 first)
Something not yet mentioned. The serum B12 level only tells you how much B12 is in the blood - not what's happening to B12 at a cell level - that is, if,you body is processing it and using it,properly.
It possible to have high levels of serum B12 and still have B12 deficiency - this is what's called functional B12 deficency (there is something about this in the links I left you).
There are other things that might be going on that you can think about first (as discussed above) but do ask your neurologist if this is a possibility, when you see him to tomorrow.
This is all quite difficult Kosakosia because you have quite a lot going on and it's all potentially interconnected, with the potential for many cross-over symptoms, between conditions.
It might take a while to sort it all out and I do think that finding a good doctor who will work with you is key to getting the right answers.
Best of luck tomorrow...post and let's us know how you get on.
thanks again. I am sorry I copied the result not checking spaces. The result is 575,4 (the 12 is from b12!). Is it still too high?
I was supplementing B12 200 mcg (methylo) orally with B6 and folate (methyl) 400 mcg for my elevated homocysteine. The b6 (25 mg daily) was activated the only one I tolerate. Others give itching. I have stopped it because I wanted a neurologist to check me without them.
My pruritus is mainly because of my histamine intolerance, but it was very unusual. It was like having more allergies than ever. BTW My liver and kidneys are in perfect condition. At that time the blood test confirmed it. I had very high level of eosinophils. I had this incidence after 7 days of the intensive conference (which was tiring but fantastic on the other hand).
I love your list of aspects I should check!
My hashimoto is very stable and under control!
My rheumatologist made a huge number of tests towards autoimmune diseases (all negative). We suspected that because of my symptoms, Hashimoto (low-grade fever for example). And at last, I found IFA.
Yes, my symptoms are complicated and I really need a good doctor to connect them. I think my endocrinologist was really close sending me to the test towards IFA and APCA test (negative). She was suspecting malnutrition or malabsorption or both ;). It is also so hard to find a doctor who knows what histamine intolerance is!
I have checked h. pyroli as well. But want to make gastroscopy to check it out.
Most of my tests are in ok. But others which are little out of range are:
little low albumines
Little to high globuline beta 2
The doctor told me that it is because of my sinusitis (inflammation).
My vit D levels are high (not too high) both forms.
Thank you again for your attention, substantial help and support. I will keep you informed!
Hi again Kosakia. Do you mean a serum B12 level of 5754?
Yes, that's high...but that could be because you have been injecting with high frequent doses of vitamin B12.
Unfortunately, there is no way to tell whether this is due to another cause, though that's unlikely as you've your liver, kidney and all other tests are normal.
Given that other tests have revealed nothing and that the rheumatologist is suggesting malnutrition/malabsorption, and that you do have a positive IFA test indicating pernicious anaemia, that would, indeed, point in the direction of B12 deficiency.
And your doctors may not know that injecting frequent high doses of B12, does lead to high, or very high, levels of vitamin B12.
And once B12 injections have commenced, testing serum B12 levels is meaningless (unless looking for low levels), because the injections will inevitable mean that levels are high.
And high levels do not indicate how successful the treatment is, or whether injections should be reduced or stopped. (Some doctors mistakenly stop B1/ injections on the false assumption that levels are to high - this is wrong).
There's information about testing serum B12 levels in the links I left above. You could print anything relevant about high levels / not stopping treatment and take it along to show your doctor.
Once you have started B12 injections, the thing that you doctor should be assessing is your symptoms, not your B12 levels. If your symptoms come back before your next injection is due, it's a sign that you need more frequent injections.
We're all different, have different symptoms, and different needs in terms of frequency of injections.
The right amount of B12 is the amount you need to get and keep well.
There's lots of information about this in the links I left above. Again, you could highlight the relevant bits and take them along to share with your doctor.
After taking supplements it takes three to six months for B12 levels to drop so although a GP would consider 575 ng/L to be within the 'normal' reference range, this level is most likely due to the supplements you have been taking. It's also likely that your B12 levels were considerably lower before you took the supplements.
As you have been diagnosed with pernicious anaemia, you should be treated with B12 injections and these should begin immediately, irrespective of what your post supplement B12 levels are.
As discussed above, treatments vary in different countries - here in the UK those with neurological symptoms receive intensive every other day injections (as discussed above).
B12 levels don't matter once injections have started - doctors should look at symptoms, not serum B12 levels.
My B12 levels are always over 2000 (the reference range used only goes up to 2000) and we have seen them here at 5999. You can expect them to be over 1000 once injections start.
If your level was 575 ng/L once injections had started, that would be considered low and indicate that more frequent B12 injections were needed.
So...after all this...looks like B12 injections are indeed that answer.
Good luck Kosakosia...will be keeping every thing crossed that all goes well...and that your doctors start you on treatment for your pernicious anaemia...at last 😉
I have 'diagnosis' fibromyalgia. Without examinations. After few symptoms, I told (!?). I can take few injections and I will see I have fibromyalgia. My neuralgia is caused by fibro. Everything is explained by fibro....
Kosakosia. I'm so sorry to hear this. Reading your reply below, it appears that the neurologist made this diagnosis?
Was the neurologist aware that you have a positive IF antibody result and therefore a positive diagnosis of PA (which causes B12 deficency - as you know).
Dreadful that a neurologist is not aware that B12 deficency causes neurological symtpoms.
The fact is...you have PA, which causes B12 deficiency.
And the treatment for B12 deficency caused by PA is lifelong treatment with B12 (in the UK, that would be with injections).
Not sure how the health system works where you are but are you able to visit a general medical practitioner.
Any general medical doctor should know that pernicious anaemia is treated with life-long B12 thearpy. And that is should begin immediately on diagnosis (because your B12 will inevitably / eventually run out.
This is especially important because you already have neurolgical symptoms.
Your serum B12 is only 574 ng/L because now because you have previously had injections - and this is low following injections...and will just get lower.
If you are unable to find a general medical doctor to treat you for your pernicious anaemia, then you one option is to consider self-injecting with vitamin B12.
Can't quite remember if B12 is available over the counter in Cyprus...but I think Hidden is right.
If not, we can advise on safe suppliers if this is a route you are forced to go down (like many here).
Unfortunately, B12 deficiency is often misdiagnosed as fibromyalgia. It happened to me too, so I know how angry and upset you must be feeling.
You may (or may not) have fibromyalgia too (some do)...but...
Surely the first logical medical step would be to treat what you have been proven to have...your pernicious anaemia.
And then investigate other possibilities if necessary.
So...hope.you manage to find a general medical doctor who,will treat you properly.
Good luck...and oh how I wish I could say something that fix it for you.
More I live more I see that the diseases treated by simple supplements (not licensed by farmaceutical companies) are neglected. Not a surprise that not many years ago we started to see the much bigger than was thought importance of vit D, which was discovered a century ago.
I will inject myself. My husband will continue (he knows how) when I'm back to sunny (!!!) Cyprus. Cannot wait.
I have a plan to find a doctor in Cyprus (in public healthcare). I am very curious what will happen. I have little hope for a nice surprise. I would love to have supporting doctor who will take care of my folate levels and ferritin levels.
I will go back and I will thank and hug and show my gratefulness to my rheumatologist who never gave up on me and orthopedist who also had a great knowledge and curiosity and he first discovered my neurological symptoms.
I went yesterday to another neurologist. She examined me very carefully. And didn't say anything about fibro. She gave referrals: mri head spine. EMG od limbs, ultrasound od neck veins. She suspects demyelination. I think ms. I have hope of course that it b12 related.
Hi Kasokosia. Demyelination can also be caused by untreated or undertreated B12 deficiency and this is sometimes misdiagnosed as MS - as you know.
It’s good that your new neurologist is doing the right tests to check for demyelination and identify the cause.
Incredible indeed...how two neurologists can come up with completely different possibilities!
Awful as it is to say, hope that this turns out to be B12 related...and still wondering why on earth they won’t treat you for your PA and subsequent B12 deficiency!
Update after my appointment with a neurologist. After hearing about my few first symptoms the diagnosis was ready. Fibromyalgia. I showed her the list of symptoms. She said it is typical for fibromyalgia. Everything was fibromyalgia. Something which was not like fibromyalgia was easily explained. It was in my head..... I have no words.
beginner1 thanks for your support. I really need it.
Yesterday I was hesitating maybe it is all in my head?
But today I am sure the doctor was arrogant giving diagnosis after hearing few symptoms. (she writes an article about fibro at the moment). Who cares?
I have shown her a list of symptoms of B12 deficiency. But her mind was closed. I agree maybe I have fibro but everybody in my situation would like to try to rule out other causes. Treatable ones!
And the funny thing is she prescribed injections but she said It will not work! How? Does she travel in time?
But I have met doctors who never said it is in your head. If the doctor knows better than patients what is happening to their bodies it means it is not a good doctor. End of the story ;).
I will keep you informed about my adventures with injections. The will come in 4 days. I hope. Cannot wait and on the other hand, I am afraid to be excited...
BTW Does anybody know about the connection between B12 and malnutrition? (my albumins are low).
I took my first injection. Self-made. I have the referral for injections but it seems easy to do it by myself. Little proud of myself! Next time I am going to use a longer needle (I am not sure if I reached my muscle) ;). If I made the injection to my fat tissue is it really bad?
Waiting for my reaction. I hope I am not placebo sensitive.
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Also, stress makes me weaker. I made a test which ruled out hypoparathyroidism. And my endocrinologist suggested some kind malnutrition or digestive problems. I ended with a positive IFA. 
long time Pernicious anaemia sufferer!
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