How long for recovery

[magirose]

Hi...so I am not diagnosed with pernicious anaemia but had 2 borderline blood tests. My gp wasn't going to treat me but I pushed for treatment. I was suffering peripheral neuropathy and other symptoms. I am currently having an injection every other day. No one really seemed convinced the pn was due to low b12. So 3 weeks down the line the pn has massively improved. So does that mean I can assume pr is being caused by b12 deficiency? Has anyone else had pr with borderline test results? I had a level of 202 and 212. Thanks

[magirose]

And I also wondered how long did it take for others to get rid of pn symptoms if they did go finally.

[sputnik]

sputnikangi

hello magirose, Reading your question, I am sure you were right to push for treatment for your low B12. I had a viral cold which lasted far too long, and my younger daughter has hashimoto's thyroiditiis (low function throid) As it's an autoimmune disease, I had an NHS test which was normal. Then I had a private blood test with blue circle lab(used by Thyroid.UK) and it was again in normal range, but it showed my B12 as being low - 197.

I wrote to my GP as I have all the symptoms of B12 deficiency and asked for an urgent appointment. Got a phone call from secretary who said it was not urgent, but got an app. for March 7. This may not directly help you, but symptoms of both conditions are very similar. ( e.g neurpathy, exhaustion, vertigo etc.etc.) I am quite a bit older than you (just 70), but wonder if this has been a problem for a long time. I am pleased you are getting the necessary injections and that your health is improving. I hope I can persuade my GP to give me treatment. Is there a knack? This is the first time in my life I have EVER Had A B12 check, despite years of anxiety and depression, and m uch Stress over last 3 years due to worry about my late husband and two house moves in 2 years! Antidepressants always been the treatment for more years than I can remember.

Don't worry about anything else - I am sure you are now being treated correctly for the low B12. Even if it was pa - your treatment would be continued for life. thanks

[magirose in reply to sputnik]

Hi. Yes it is sad that you were mever properly diagnosed or treated before now. My thyroid has been checled so that is fine

I do have an autoimmune disease and it seems quite common when you have one to get another.

Your GP should certainly treat you. Good luck with that. If they don't it may be worth speaking to the pa society. They can give you something to send to your doctor. Good luck.

[clivealive Forum Support]

Hi magirose please get your Folate level checked as this is essential to process the B12.

"How long for recovery?" No-one can answer that and it may be that you get to feel worse before you get better as the B12 starts repairing the damage done to your nervous system and a lot will depend on how long your were low of deficient.

Well done for pushing for treatment. You may well have helped the next patient along presenting the same symptoms to your doctor.

[magirose in reply to clivealive]

Thanks Cliive. Would it be an idea to just take a supplement for folate? I have now been seen by a haemotologist who did a lot of blood tests and I am wondering if folate was checked. Go back there on March 28th and will ask. Thanks.

[clivealive Forum Support in reply to magirose]

I personally have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember and my level when last tested was in the upper two thirds of "normal". My B12 injections are every three weeks and I'm also on permanent iron.

Folic acid can be bought cheaply over the counter at any pharmacist. It is now being fortified into breakfast cereals. Try it at a low dose until you can get tested.

"Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine".

Vitamin B9 (Folic acid) University of Maryland Medical Centre

[sputnik in reply to clivealive]

sputnikangy to clivealive

Hello Clive - I have read a lot of your posts, and I am learning so much from this forum. I have posted before in response to magirose, because I have only just had a private thyroid test with bluehorizon. Although my thyroid was in normal range, my B12 was 196. They said itwas insufficient. I have been trying to eat all the right foods for B12 and folate, but not tried supplements yet. I wrote to my GP weeks ago saying it was urgent, but a secretary phoned me back and said it was not urgent, but I got an appointment with the doctor on March 7, next week. I have all the symptoms of low B12 including vertigo and severe neuropathy. Had symptoms of anxiety and depression most of my adult life, a severe depression in my 20's (Iam now 70) when I had ECT. It worked, but with many side effects. It was at Withington Hospital Manchester, but the psychiatry department has been long gone for decades.

I have had a veryy strssful time since October 2013, when my late husband was first diagnosed with rectal cancer. Chemo etc. but no surgery - it was too late. He fought it to the end - September 2014. This was fiollowed by me making a series of irrational decisions - I moved house into a flat - a disaster, and I have now been waiting for 5 months for solicitors to complete on my second move.

Supposed to be next Friday, but still not certain.

Needless to say, my symptoms have escalated severely with all the uncertainty over my health and my move.

Clive - Have NEVER BEEN TESTED IN MY WHOLE LIFE FOR B12 before this accidental result.

What would you advise? On my own and feel as if I am on the edge of a nervous breakdown, so crippled do Ifeel, and exhausted.

Thank you

sputnikangy

n.b. I live in Northwich Cheshire - is there a postcode lottery.

Also over over last 12 months have had tests for bladder and rectocele dysfunction, and now know I have nerve damage due to childbirth damage. Been offered surgery, but trying physiotherapy first - don't want to die but feel about 90!

[topazrat]

Mine was diagnosed when my serum B12 was 250 last year. But I had been taking high dose supplements for ten years, after a bout of severe anemia. Nobody bothered checking for a deficiency at that point because I was 'too young', despite me telling them that I was eating well. So the Doc told me to take supplements if I was going to continue to be silly and not eat properly - her exact words.

The penny dropped as to the cause of my feeling crap constantly for decades after speaking to my parents, who both have P.A. I had to really push to get tests for Intrinsic Factor and Parietal cells (both positive) because my G.P. said that my neuro symptoms and constant fatigue couldn't be caused by B12 deficiency because my levels were normal, I was just stressed and depressed. It's amazing how a simple vitamin can 'cure' depression and stress

[Hidden]

I had pn, which initially I couldn't work out how to describe to the GP. Eventually went and he did blood tests but just said nothing had showed up. After I discovered my sister in the US was getting B12 shots, I looked on NHS choices and there it was. Went back to GP who had done B12 test without telling but said I was in the normal range. 148. The range in our area is 110-900. Wouldn't do anything. After a bout of Iron deficiency amaemia my B12 was 118, Another GP said I was still in the normal range. Iersuaded him to give me loading doses but would only give 2 wks of 3. It had little effect on my pn, and now pf course my levels are high they say that my symptoms are not B12. I am waiting for a neurology appt and hoping he knows more than GPs.

[Nataliej66]

I suffer from vitamin deficiency it took the drs ages before they realised what it was. I was very ill for a long period of time. I finally got my injections for the first week I had one every day and then now every 12 weeks I didn’t automatically feel better straight away but by the time I had my next injection the symptoms had and my health was improving and made me feel a lot better however the week before your next round of injection is due you do tend to become more tierd . I don’t absorb b12 so I have to have the injections forever now which doesn’t bother me so if I was you I’d just talk to the dr because if your not absorbing it in a couple months time your just going to be ill again.

[CW12]

That is low. That is the level I am and I have same symptoms. Your dr is VERY MISINFORMED!! So glad you are getting treated!!!!