I found out that I was very anaemic a few months ago having various symptoms and overall fatigue. My doctors thought that it was iron deficiency anaemia, due to my low iron levels. After this, I have been working on getting my iron levels up and I also started oral b12 supplements due to my semi-low b12 levels.
A little over three weeks ago I then was diagnosed with pernicious anaemia based on PCA and chronic gastritis. At that time, I got one 1 ml b12 injection and was told to continue with the oral supplements. Since I am “young” (I’m 29), my doctors say I probably do not have any serious symptoms due to my PA.
Now my doctor’s say that my blood and b12 levels are normal, but I really haven’t felt much better yet. I still feel very fatigued with a lot of paresthesia, numbness, concentration issues, blurred vision etc.
So my question is - did your overall health/symptoms improve quickly after you started treatment? How long did it take for you to feel better?
Maybe I am just being impatient, but I appreciate you sharing your experience.
Written by
Emoe
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i inject weekly and i started to feel better at about the 2 month mark and continued to improve over the course of a year. i still inject weekly and and its been a few years now and i feel good but the symptoms still show up every now and then, especially if i overexert myself.
If you have been diagnosed with PA then NICE guidelines say that you should be on 1mg B12 injections every 2-3 months for life. If he measured your B12 again after your single injection then of course it looked fine, but he should also know that because you have PA it is either very difficult, or for some, impossible, to maintain your B12 level with tablets. Have a look at one of Sleeybunny's excellent posts for a gold mine of information on your condition.
I felt better immediately. I was able to get by with just supplements for many years. But then I had tingly painful toes and had to start injections. I had a quick improvement then too. Many people with PA do not absorb enough B12 from supplements. It would be good to try loading doses of B12 injected every other day to see if that works better for you.
The reason I'm asking is that treatment patterns for B12 deficiency and type of B12 used in treatment can vary between countries.
Knowing which country you are in can help forum members to post relevant info. I'm in UK.
"did your overall health/symptoms improve quickly after you started treatment? How long did it take for you to feel better?"
I was left for many years without treatment despite over 50 typical B12 deficiency symptoms including dementia type and spinal symptoms. I don't have a PA diagnosis. Oral supplements did very little for me.
After B12 injections started, it took many weeks to start seeing improvements...I think this was because I had been left untreated for so long. I improved for eight years running after injections started.
I need far more B12 than NHS will give me.
Other test results
Have your doctors checked folate, iron and vitamin D levels?
It's common for forum members to report deficiencies in these.
It's common for forum members to also have thyroid problems. Might be worth putting any thyroid results along with an outline of your story on Thyroid UK forum on HU.
Have you considered joining PAS (Pernicious Anaemia Society)?
PAS is based in Wales, UK and has overseas members.
Published a few years ago so some bits may need updating.
"What You Need to Know about Pernicious Anaemia and Vitamin B12 deficiency" by Martyn Hooper
Martyn Hooper is the former chair of PAS.
"Could it Be B12" by Sally Pacholok and J.J. Stuart (US authors)
Also found this one interesting
“Vitamin B12 deficiency in Clinical Practice” (subtitle “Doctor, you gave me my life back!”
"I still feel very fatigued with a lot of paresthesia, numbness, concentration issues, blurred vision etc."
You mention several neurological symptoms.
If you're in UK, I'd expect you to be on this treatment pattern....
A B12 loading jab every other day for as long as symptoms continue to get better then a maintenance jab every 2 months
I left detailed replies with UK info in thread below eg suggestions of UK B12 documents to read, links for those struggling to get adequate treatment in UK.
Some links may have details that could be upsetting.
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