Grrrr doctors! : After my 4th blood... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Grrrr doctors!

wongy215 profile image
11 Replies

After my 4th blood test b12 was 160,this was just before first jab.I've had 2 now and Dr says he will give me 3. Luckily I'm seeing locum for 3rd so I'll raise my concerns .First 3 tests were 126,84 then 144.he disbelieved results and kept retesting , I have loads of symptoms which have improved with the 2 jabs .He has confirmed with lab results were correct and asked if I'd taken supplements and didn't seem to believe I hadn't. Worried he won't agree to carry on treatment and I'll go back to square 1.

Written by
wongy215 profile image
wongy215
To view profiles and participate in discussions please or .
Read more about...
11 Replies
clivealive profile image
clivealiveForum Support

Hi wongy215 do you have any idea why your B12 is so low and did you have your Folate level checked as this is essential to process the B12 you are having injected?

wongy215 profile image
wongy215 in reply toclivealive

Think my foliate was ok

Intrinsic factor and parietal cell antibodies were negative and b12 seems to fluctuate wildly week to week.a year ago it was 250.really don't know what to do next

clivealive profile image
clivealiveForum Support in reply towongy215

Read through the following and see if you can "identify" yourself from any of the "people"...

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

Hope this helps a bit.

wongy215 profile image
wongy215 in reply toclivealive

Only surgery was gall bladder removal.can't say any of the others apply. Puzzled as to why it goes up and down 😣

clivealive profile image
clivealiveForum Support in reply towongy215

I'm not medically qualified but this might explain "Life with no Gall Bladder":

google.co.uk/url?sa=t&rct=j...

csnjek profile image
csnjek

I am not a medical expert by any means just have been suffering with PA for several years. It took a long time for anyone to think to do the correct blood test and find the B12 Deficiency. I would think my neuro would say your fluctuations are common. Yours have really only ranged 80 points total. For example, my B12 was 85 when I was finally diagnosed! My neuro wants it always between 500-1000 which is quite a range. My last test was 645 so huge variations. That number was three weeks after an injection so you can imagine how much higher it is right after. Of course that is with a lot of injections!

Compare this to Vitamin D levels which has such a smaller range. When they found that deficiency, my level was 8.3 and they would like me to be at 50. I have only made it to 39 taking 50,000 units a week! Although one test after going Gluten Free was 49!

I would think your numbers after injections should jump up a lot. Your previous numbers are very, very low! Hope you feel better soon! Keep taking the injections until you feel better and keep them going! Good luck!

wongy215 profile image
wongy215 in reply tocsnjek

I'm hoping my Dr will give me more .he said only 3 as level was "normal" 160 before first injection

Apparently D3 must be accompanied with K2 and Magnesium for optimum usage.

clivealive just read your post on risks of b12, could of tick nearly everyone off. Have just finished my b12 loading injections wow what change in me I've called them my magical shots

clivealive profile image
clivealiveForum Support in reply to

I am so pleased for you Hidden - you could almost consider yourself as unique in this country as one who is getting the treatment you need. :)

Clivealive yes I feel very lucky, but it was only with the help of PA society that I found out what was wrong with me. Thyroid UK and the PA society have been a life line for me.

Not what you're looking for?

You may also like...

Doctors have stopped my b12

Hi All, I am seriously fed up. I was diagnosed with B12 deficiency back in 2013 but not PA. My...
alison687 profile image

Doctors

Hi I am new on here, but have been reading the Forum on and off for a several weeks now after...
AngelaJG profile image

Doctors app today

I’m seeing my daughters gp Today . I have the information re children and b12 deficiency off the...
Andypandy30 profile image

Meltdown at the doctors office

About 2 weeks ago I left a voicemail for my naturopathic doctor to call me back, explaining that I...
KimberinUS profile image

update on the doctors appointment

I posted my Blue Horizon results on here last week. With some help from this forum and the thyroid...
Cazzie91 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.