Weird symptoms- B12 deficiency? - Pernicious Anaemi...

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Weird symptoms- B12 deficiency?

El10 profile image
El10
20 Replies

Hi,

I'm a male 26 y.o. In the last year I started to suffer from unexplained serious symtpoms. The first one was hair loss. Hundreds of hairs are falling each day from all over the head including eyelashes and eyebrows(diagnosed by my derm as Telogen Effluvium). Then, came muscle pains, stomach pains, GI weird sounds,unexplained weight loss, memory problems, concentration problems, weird white smooth coating on the tongue, white ridged nails(always been smooth and uniformly pink) ,fatigue,vision problems(it comes and goes. Blurred vision), tingling in hands and feet,anxeity, tinnitus and really bad insomnia. Blood test are all good(thyroid hormones are optimal, no antibodies for TPO or Thyroglubulin, vitamin D, zinc,iron, ferritin,no liver issues or diabetes ). My B12 was 300(I was vegetarian for 10 years) and I have atrophic gastritis diagnosed by gastroscopy. I got 35 cyanocobalamin injections over two months by my dr and some of my symptoms improved but some still persists even after months of treatment. Before the shots I took B12 methylcobalamin sublingual but it didn't help at all. My B12 is now above 2000. My dr stopped the injections but I still have symptoms. My nails are still ridged and white. I still have hair loss, tingling in feet that comes and goes and memory problems. Do I need to insist getting B12 shots? maybe other form? Do MMA and homocysteine are necessary in my case? and do they very relaible detecting B12 deficiency? B12 level is very good now. I'm adding example of a nail that looks exactly as mine. They are white with red strip at top(maybe Terry's nails?) and have ridges. P.S my father has some of my symptoms, he eats meat everyday and he has b12 of 210. I would really appreciate if someone can help.

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El10
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20 Replies
Emmers5 profile image
Emmers5

Welcome to the forum. So sorry you are feeling so awful. There is a lot of very good information here and some very smart folks so do search through the posts. I can tell you that my PA has been treated for 2.5 years now and many symptoms took a full year or more to resolve. My fingernails look just like that, I didn't know it wasn't normal. I'm always learning from people here.

El10 profile image
El10 in reply to Emmers5

Thank you. A full year? I thought the recovery is quicker when you treat it quickly 😕 Your nails are still like that even with treatment? I also don’t have any lanula on all of my fingers.

UFC80 profile image
UFC80

I will comment on the image of your fingernail. Some people and "Google Searches", will say that the lines in the fingernail are a sign of a disease or illness. I have seen this on many, many peoples fingernails, and they are perfectly healthy. Some doctors and websites would like to instill fear into people so that unecessary prescriptions and visits are made.

El10 profile image
El10 in reply to UFC80

I get what you’re saying but all my life I got compliments on how healthy and fast my nails grow. They always have been pink and smooth. Because the changes to the nails occurs alongside other symptoms I don’t think its benign. My derm thinks something is clearly wrong and said that what causing my Telogen Effluvium affects my nails too

UFC80 profile image
UFC80 in reply to El10

The lines can also be caused by aging in general. If you want to call that a disease! Have you regular blood tests done and if all check out ok, i wouldn't be too concerned. 😊

keith1954 profile image
keith1954 in reply to UFC80

My nails are the same but I think this started after taking calcium tablets as now my nails grow fast I'm going to ask the doctor the cause of this but at the moment I feel great.

Bellabab profile image
Bellabab in reply to UFC80

El10's dermatologist is absolutely correct - these symptoms are due to B12 deficiency.

El10 profile image
El10 in reply to Bellabab

Thank you so much for your comment! The derm told me that its not relavent which vitamin/mineral is missing because either way it causes the body to enter a shock state and hair and nails are the first to suffer from this. He told me even if the deficiency is corrected it will take 4 months to hair to stop shedding and the nails about 8 months for seeing noticeable improvement.

Bellabab profile image
Bellabab in reply to UFC80

Fingernails that are ridged and with no lacuna, also toe nails that are similar and susceptible to physical and fungal damage are not found in healthy people.

El10 profile image
El10 in reply to Bellabab

Thank you again! I don’t have any lanula on all fingers. On the toes alsi. I checked my thyroid so many times and T3 and T4, TSH are great. can I assure myself that B12 is the culprit here?

Sleepybunny profile image
Sleepybunny

Hi,

There is some useful B12 info in pinned posts on this forum.

Have you or your Dad ever been tested for PA (Pernicious Anaemia/US spelling Pernicious Anemia)?

Coeliac disease (US spelling Celiac)?

H pylori infection?

There are many other causes of B12 deficiency besides the three I've mentioned.

Useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members from other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring. Overseas members can use an online contact form.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

I wrote a very detailed reply on another forum thread with links to more B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I'm in UK so some of the info may be specific to UK.

I am not medically trained.

El10 profile image
El10 in reply to Sleepybunny

Hi, Thank you for all the info. Neither I or my dad have tested for PA. my doctor doesn’t think the cause for B12 deficiency is important. I tested negative for ceoliac disease. I tested negative for H pylori. If the diagnostic tests are not so reliable how one can be diagnosed? :(

JanD236 profile image
JanD236

My nails look the same and B12 injections haven’t improved them. However, it seems to be purely cosmetic so is not a worry.

However, the tingling in your feet and memory problems do need to be addressed. At the very least, as the B12 injections improved your other symptoms I would be pressing your Doctor for them to continue.

Once injections have started any B12 blood test result is fairly meaningless (unless it gives a low result). Many of us on continuing injections will have similarly high levels but it is not a reason to discontinue.

Have you had folatevtested?

El10 profile image
El10 in reply to JanD236

Yes, the injections got rid with most of my symptoms but now some are starting again. I got so many injections every other day for two months and only after this period I felt significant improvement. My doctor not willing to keep injections because of the elevated serum B12. My memory improved but not to 100%. The tingling comes and goes especially in my feet. The hair loss is crazy. how I convince him to keep with the injections? My folate actually is very high above 24(I took a supplement also. Just recently I’ve read it can aggravate the B12 deficiency).

Showgem profile image
Showgem

My nails were really bad, no half moons, very ridged with white spots and broke off all the time. After 14 months of treatment they look like the ones in the photo, still ridged but not so much, half moons now back on most of them, not many white spots and stronger.

I was severely deficient in b12 and vit D, low on folate and ferritin so I don't know which deficiency caused it or all of them together.

El10 profile image
El10 in reply to Showgem

Thank you! this gives me much hope. Can you please let me know how was your ferritin ,B12 and vitamin D in the first place?

Showgem profile image
Showgem

My b12 was only 58. I don't recall exactly what my vit d and ferritin were but they were in the teens. My ferritin has been below 4 in the past with severe anaemia but my nails were never quite as bad as they were before starting b12 injections.

babylock profile image
babylock

Best thing to do is arm yourself with information. I read a lot. Become familiar with how PA is diagnosed. B-12 levels testing is not enough. Did they do intrinsic factor test? I am surprise how little is know about B-12 levels and diseases associated with this condition.

Best of Luck

BrendaSmith profile image
BrendaSmith

Your finger nails are fine. Your tummy can rumble that’s natural. Regarding hair loss take organic beef liver capsules. I take NXGEN Beef Liver Capsules because it’s freeze dried raw undefatted and has heat sensitive minerals in tact. It’s all about the minerals. You need minerals which most primal muscle meats lack.

Angelcat123 profile image
Angelcat123

Hey el10, it's been a good while but I'm hoping you've recovered? Reading your post was like I had written it, so similar right now. If you see this and have any advise that would be great :) thank you.

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