B12 deficiency, PA or something else?

[TACCT]

Hello, I am new here, 35 yrs old and have a history of stomach/gastro issues and had severe gastritis multiple times during last 10 years.

However, my current issues started November last year. I started having shortness of breath and then back muscle pain. Then tingling/pins/electric sensations in back which progressed to neck area. I saw an orthopedic who did a back x-ray and Vit D test. My Vit-D at that time came out very low and he put me on pain killers + Vit-D injections. I took them for like 3-4 weeks.

In January, I retested my Vit-D levels and they were good, but I started developing other symptoms including anxiety, numbness in hands and sometimes feet. Pins and needles in hands/back or neck. Feeling tired and out of energy throughout the day. At the end of January I was having headaches, brain fog, dizziness, balance problems.

Later on I developed very weird visual/eye problems. First, it felt like my eyes were unable to focus properly as if things were vibrating around when I tried to focus, night vision was impacted and distant vision started blurrying. Then became noise sensitive, light sensitive. I saw a neurologist who checked for my reflexes etc. and attributed these problems to depression. He advised me to take an anti-depressant for some time which I refused because it didn't felt like I was depressed.

Being worried about vision issues, particularly the shimmering effect, I saw an ophthalmologist who did a thorough examination of my eyes. He told me that my eyes are good but there is some swelling behind eye nerve (probably because of irritation of eye nerves). At that time he could not find any conclusive reason for it but he told me that stress or some medication could be the cause of this. He gave me eye drops and asked me to see him after 2 weeks.

Things didn't improve and I was having more head pressure, and it was becoming difficult to balance myself. So I saw another neurologist who also attributed it to stress and gave me some oral Vit-B tablets.

It was not until the mid of March that a neurologist advised me to have brain/cervical spine MRI and checked my Vit-B12 and Thyroid Levels. He could not find anything in MRIs but my B12 levels were low. It was 181 (reference range of lab was 223-925pg/ml).

Thyroid levels were

TSH 1.40 (0.34 - 5.60 range)

Free T4 0.80 (0.61 - 1.12)

Same neurologist told me that the root cause of my problems is this B12 deficiency which I may have bee having from last couple of months. He asked me whether I was a vegetarian, which I am not. But I told him that I have not been taking meat from last few months and virtually no red meat.

He put me on loading dose Methylcobalamin inj 500mcg/day for 7 days then 1 weekly for next 4 weeks.

After first week of injections it seemed like my symptoms got worse. I was having severe headache/balance issue. Lots of pins and needles. Now after three weeks I am having 3 injections/week. It seems like some of the symptoms have started improving like balance issue and head pressure is slightly reduced. There is less problem with light and noise sensitivity but other symptoms are still there. Is it normal to have some symptoms coming back during injections?

Also is there a possibility that I am having PA or is it just B12. I had a Complete Blood Count on 1st march and it showed slightly lower values for MCV, MCH and MCHC. At the same time my RBC count was above normal. I suppose this is an indication of iron deficiency anemia but I am not sure.

I am taking a multivitamin with my B12 injections and also try to take some iron and folate.

[fbirder]

Yes, it sounds like iron deficiency anaemia. That will explain some symptoms and can be easily corrected with iron supplements (I take Solgar Gentle Iron, four times a week - but I’d start with one a day),

Most of your symptoms are almost certainly caused by the B12 deficiency. It doesn’t really matter if it’s caused by PA or not. If you’re not vegetarian then it’s is probably caused by PA, but there is no reliable test. The treatment is the same anyhow.

Having some symptoms get worse when treatment starts is quite common. clivealive puts it well when he says that your synapses between nerves turn the volume up to 11 when the nerves stop working. When the nerves start working again the volume is still at 11. It takes a while for it to settle back down.

Some of the nerve damage can take months to years to recover. Sometimes it never does😟

[e66--]

Just to add, I definitely had some mad symptoms when starting injections. The most scary was a terrible giddiness and high pitched whistling noise in my ears. I also had lots of headaches which I never had before. And also my arms and legs felt so weak it was ridiculous and I began to wonder if I was doing more harm than good. Happy to report, the dizziness is now gone completely, arms and legs coming back to normal, but I am still tiring very easily and have to pace myself. I often wonder if I will ever get days of sheer vitality but I will persevere and hope for the best and rest and accept I am slowly healing. I've also had some weird visual symptoms, but this was before injections, like vibrating patterns when I looked at my radiators! I hope you find relief, little by little, and the people on here are simply fantastic when you need advice. Best wishes.

[Gambit62 Administrator]

a) some people don't tolerate methyl very well so may be worth asking about other forms of B12

b) the low MCV and MCH are indicators of iron deficient anaemia. If you also have B12 deficiency then you can have a mix of macrocytic (larger rounder red blood cells - associated with high MCV and MCH), masked by iron deficient anaemia (smaller red blood cells) and vice versa.

c) PA is the most common cause of B12 deficiency - it is an auto-immune gastritis in which your body attacks the mechanism that allows you to absorb B12 from your food.

It also lowers stomach acidity and can affect other vitamins and minerals - notably iron and folate

d) B12 levels i your blood are regulated using stores in your liver - this means that B12 levels tend to be pretty constant but if you have an absorption problem then this mechanism is bust and your B12 levels fall - this generally takes years so not having had much meat for a few weeks is unlikely to have any significant impact on your B12 levels unless you already had a B12 absorption problem and your levels were getting low.

Please discuss iron supplementation with a pharmacist and, if possible your doctor - it is possible to overdose if you take too much.

[Jackiemary]

Very good advice given above. I can understand your symptoms well, as it was gastric problems and similar vision problems, plus fatigue, that led me to ask for B12 tests and score was 189, two years ago. Despite regular 3 monthly injections I started to have awful giddiness recently and am now wondering if it’s iron. I hope you can get things sorted and do feel

better. Jx

[TACCT]

thanks everyone for your replies.

Gambit62 unfortunately in this part of world (south asia) hydroxy is not available. And even cyano is to be found at very few pharmacists. Methyl is available everywhere and thats what doctors prescribe here.

About Iron I am taking 100mg tablet on alternate days. At this dosage could it still cause overdose? And is there specific test I can ask for which will better describe iron levels.

thanks

[Hidden in reply to TACCT]

At that dosage it is highly unlikely to overdose. The body is not able to absorb the full iron content in any event which is why you may notice a change in your stool colour / it can go black - that’s unadorned iron. You’d be much better taking a gentle iron product as Fbirdet has suggested. I also do this. I take two sachets of spatone with apple every day. I have done this for 6 months and it has improved my serum iron and ferritin. I have had my iron checked and my TSats, Ferritin and Serum Iron are all mid range. I get it checked quarterly. Ask your GP for an iron panel blood test. People with PA often have difficulty absorbing iron due to a lack of stomach acid which is needed to absorb it. I’m not a doctor but have discovered these things by managing my Pernicious Anaemia. Best of luck.

[TACCT in reply to Hidden]

thanks I will try to get it checked.

[Sleepybunny]

Hi,

Some B12 deficiency websites that may be of interest.

I am not medically trained.

PAS (Pernicious Anaemia Society)

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

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

[Cb1963]

The pins and needles are classic symptoms, and I have got all the same problems, I've had stomach problems for years and I'm on lifetime omeprazole, which always causes absorbtion problems, I take a antidepressant at night time, now don't get confused with that medication as the title may feel like you are depressed, it actually helps as it's classed as an epileptic drug, but for some reason it works on the pins and needles, or neuropathy, don't be feared of taking this drug as it can help you sleep slightly better, I was in the same frame of mind like yourself regarding this tablet, (mitrazapine) it's a nightmare this condition but I'm sure you'll get loads of advice, and welcome to a great forum, non of us are medically trained but pass good intel onto each other, thanks again.

[Hanneke12]

I agree with all that has already been said. I would like to add that the vit D and gastric problems also make me wonder if you might have a gallbladder issue (which could be B12 related, though I do not how, for bile reflux may erode your stomach to the point of not absorbing B12, but also a lack of B12 (e.g. due to PA) may cause your gallbladder to function less well, and decrease vit D absorption - which is fat soluble). Not medically trained, just a hunch.

I have the exact same thing...and am in the midst of finding out what is going on, and what helps. But vit B12 injections surely do give them time though.

Be well!

[Nackapan]

I've just seen your earlier post. I was ill when you posted it. The time frame is very similar to me. I collapsed and then had virtigo on 1/10/18. The every other day b12 injections were restarted after advice on here. The dizziness stopped. Cawthorne pysio exercises helped too with this. The electric shocks and Jerry spasms stopped too. I got worse before better with those symptoms. The noise and light sensitivity is still with me but I've got heavily tinted glasses and a hat that helps. I hope your symptoms improve very soon with the more frequent injections. Take care. Thank you for the taurine advice . I'm looking into it as hate this tight skull feeling. Makes sleeo hard.