I was diagnosed with PA using the schilling test back in 2002. I have been having 3 monthly injections up till 5th June last year when it was stopped because my b12 serum test was over 450, it went up to 550 that September and still no injection.I have now convinced the doctor to start up again. The question is, do I need to redo the loading doses (ferritin of 12.7 IFA was negative full blood count all ok. Nothing else tested). Main problem is RLS and, itchy legs and very tired.
Thanks for all advice from you all so far
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Tonyworks
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My b12 was 380 on 5th Feb. They test my b12 each year because of type2 diabetic. Stated it was high so I did not need my b12 injection when I went for one in 5th June. Thyroid tested ok last March.
I don't think the doctor will give me anything more than the standard 3 month injection even though my last one was 9 months ago.
When I was diagnosed with PA. I was given an endoscopy and told that I had a lack of pariental cells with Antropic Gastritis (2002).
I am having difficulty in persuading the doctor that I have PA!
The guidelines have changed and now say you can have im jabs every two months. That might be enough to keep you level. It did not me and I bought more and as I have always injected myself dosing so every month was no problem. However I only had two weeks of loading doses and I never believed it was enough leaving me with severe neurological pain.
Recently after three years of feeling exhausted, depressed, lethargic etc, etc. I have now been injecting every other day and after 3 weeks I am feeling much, much better. I have lost 3 years of life and I am pretty angry about it yet relieved that I am now feeling much better.
Your doctor should have read the protocol for the treatment of Pernicious Anaemia . It says you need TREATMENT FOR LIFE ! And that testing thereafter is a waste of time . You will always have a high reading for B12 whilst you receive injections , but it does not mean that it’s getting to where it’s needed -namely the cells . Good that you have convinced your doctor to restart the injections . They must NEVER be stopped again. . As you have been without injections since last June , yes , you should have the loading injections again . Best wishes .
If you have neurological symptoms and have been untreated for a year then you may be at risk of developing permanent neurological damage so I hope they treat you according to the guidelines.
Do you mean that your ferritin level is 12.7 ug/L or 12.7 ng/mL?
That seems very low, probably below range.
A typical range for men would be around 30 - 400 ug/L
Have you got the reference range for that test and can you see what units of measurement were used?
What has GP advised about your ferritin level?
Have they suggested taking iron supplements?
It could partly explain your RLS and fatigue although these can also be associated with B12 deficiency.
Sometimes tests are measured in pmol/L or other units so helpful to know which units are used.
When you say Full Blood Count is okay, have you seen the actual results or have you been told that by GP surgery?
Best advice I ever got was to always get copies of my blood test results. I was told everything was normal/no action on more than one occasion and I found abnormal and borderline results when I got copies.
My advice is to always check for yourself.
Low iron can lead to small red blood cells (microcytosis).
Low B12 and low folate can lead to enlarged red blood cells (macrocytosis).
It could be that low B12 (and/ or low folate) is masking the effects of low iron on your red blood cells and vice versa so MCV and MCH on FBC appear to be normal range and therefore you've been told Full Blood Count is okay.
I can see and have copies of all the test I am in the UK and can log in to my results. My full blood count is all within the limits. The report from my doctor said all is satisfactory and no further action is needed, including the ferritin! I am seeing him on Tuesday and ask him to explain and also see if I can have a folate test
If you can see all your results, have a look at your ferritin result again and see if the reference range for ferritin is quoted next to your results.
I strongly suspect that your result of 12.7 ug/L is below the lower limit for men's ferritin levels in your area.
In UK, most men's ranges for ferritin start at roughly 30 ug/L up to 300 ug/L (sometimes different units of measurement are used).
If you can't find the reference range for ferritin when you look at your results online, you could
1) Ask practice manager what ref range your GP surgery is using for men's ferritin.
2) Search online for " ferritin reference range (insert name of your area)"
3) Submit a FOI Freedom of Information request to local NHS website asking what is the local ferritin ref range for men.
"My full blood count is all within the limits"
You could have FBC tests all within normal limits and still have B12, folate and iron deficiency. The effects of iron deficiency can mask effects of B12 and folate deficiency on red blood cells.
Have a look at how close your FBC test results are to the upper and lower limits of the reference ranges.
Personally I think if you have a lot of borderline results that could be significant.
Despite a good multivitamin and mineral tablet daily, my folate and ferritin were both low, but never out of range. Still worth checking.
Because I was getting B12 injections, and still had symptoms (hair loss, bleeding gums) GP looked at raising levels of folate and ferritin. For quite a while, they would drop back down after additional supplements. It has taken me a good couple of years to get them both up and stable, whatever I take and despite my diet. But I seem to be there now .
My ferritin was about 30ish and GP told me that ferritin should be above 60 ug/L to stop any symptoms, Oral Medicine consultant would prefer 80 ug/L - but was not concerned when I just couldn't get there- said I'd probably reached my natural level, which is around 60 ug/L.
Folate was 5.5 ug/L, but now finally stable at around 20 ug/L.
It does seem to make a difference to general health.
Sleepybunny has advised getting a printout of your blood test results. This will help you to keep an eye on what is happening, good or bad, and whether your supplements are making a difference. Otherwise, low within range (even very low) might come back as "Normal - no action" from your local practice.
It's just interesting that the doctor report just gives the following line
Test result Full blood count;FERRITIN;VITAMIN B12 Report, Satisfactory, No Further Action (Patient Informed)
I have an appointment this Tuesday and I will be asking why does he think it is all satisfactory and to confirm my diagnosis of PA and Atropic Gastritis back in 2002. Its been 9 months since my last b12 injection. I am having it start up again this Friday.
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