Can it be PA when the Dr says no and the results are inconclusive?

[LeighW]

Hi All,

I am looking for some thoughts to my PA/B12 deficiency journey. Having an engineering background sometimes makes the grey areas that surround PA difficult and not having a full 100% conclusive diagnosis is difficult for me to know how to progress.

I have read most if not all the information shared on this site and wider.

33 year old male who consumes animal products and eats foods fortified with B12.

Circa 2018 blood test due to number of different symptoms:

- Low vitamin D (32 raised to 64 over the following 3 months, ongoing supplementation to maintain)

- B12 312 (ref range 211-912 (circa from memory)) thus considered normal

Historic blood test from 2004 I made the doctor go back to:

- B12 circa 195 (ref range started at 190 so never flagged up at the time)

Family history of B12 Deficiency (all negative IF results):

- Mother

- Sister

- Aunt (mother’s side)

- Cousins x 2 (different aunts from mothers side)

Doctor wanted to give me Vit D and anti depressants and send me on my way. Was not interested in trying B12 or doing other tests.

Due to my persistency with the doctor I was referred to a gastroenterologist. Endoscopy, colposcopy, mri of small intestine and further blood test later:

- B12 237 (ref range as above)

- MMA - cannot remember value but was elevated above ref range

- Mild gastritis (no mention of this being autoimmune)

- IF negative

- All biopsies ok

- No other physical indications of ‘issues’ from physical exams

Although I understand the reliability of the IF test I would have expected more from the physical exams to flag up it could be PA.

Due to low level of B12 and elevated MMA he advised GP to trial B12 and monitor for improvements.

Loading dose and multiple 3 monthly injections later I am generally better but still up and down. Worse weeks are 2-3 weeks before and after injections. With the weeks after being the worse with a number of symptoms exaggerated with main impact being psychological.

Re-test of bloods have shown my B12 levels do drop from over 1400 to circa 400 between injections (I now know this should not happen).

Main symptoms are fatigue and tiredness, irritability that goes up and down, depression and anxiety that also goes up and down. Since injections I have developed others such as paresthesia (formication mainly), disturbed vision (like eyes disconnected from brain) and a number of other things.

Ultimately I suppose due to a Dr, professional, someone in a lab coat not telling me I have PA / need to have B12 injections and all the test results being inconclusive there is this niggling in my mind if I should be looking into self injecting.

With the knowledge on this site do people think I could still have PA and do need to have injections for life and should take administration into my own hands due to the poor understanding and treatment from GP’s.

I appreciate anyone that reads this due to the length but also hope anyone else just finding out they may have PA can see all of the above and maybe not go through the same drawn out journey.

Thanks in advance for any advice.

[SunnyWorld]

You got me at the offering of antidepressants. Thats usually the first thing on offer from the doctors. It's a long and difficult journey. There are many more wonderfully helpful people on here who are much more experienced than myself. You need to take care of yourself is what I have experienced as doctors either don't really know or don't want to know. You will get some positive advice from more experienced members shortly. Good luck to you.

[Martin_12]

Hi Leigh

Neither serum B12 nor active B12 is reliable for diagnosing B12 deficiency.

pubmed.ncbi.nlm.nih.gov/208...

MMA is the most reliable test, although also not perfect

pubmed.ncbi.nlm.nih.gov/154...

If you have symptoms of B12 deficiency, raised MMA and gastritis, you should be getting 1000 ug hydroxoB12 jabs every 2nd day until your symptoms stop improving. Then jabs as often as necessary to keep your symptoms from reappearing. The longer you delay the longer it will take for your symptoms to resolve, and the more likely some symptoms will become permanent.

After you start regular B12 jabs your symptoms can get worse before improving.

Finding out what is causing your B12 deficiency is (in my opinion) of secondary importance. I still don't know what is causing mine. I have had 2 negative IF antibody tests.

[Gambit62 Administrator]

"Re-test of bloods have shown my B12 levels do drop from over 1400 to circa 400 between injections (I now know this should not happen)."

Actually the drop in levels is exactly what you would expect to happen - but it doesn't mean anything, and levels being 400 post loading doses and whilst on maintenance doses doesn't mean that you are okay.

Serum B12 test is only accurate to 20%.

You could try sublinguals or nasal sprays, starting just after an injection, and see how you go with those.

You could have PA and an absorption problem - see if you can find out more about the gastritis and if it affected the ileum/terminal ileum.

Getting a firm diagnosis of PA can be nigh on impossible.

[LeighW in reply to Gambit62]

Thanks for your response. I had biopsies from the ileum / terminal ileum and all was fine.

Main problem with the gastritis was it being describe as ‘gastritis he would expect to see in most individuals from a sample of the population’.

[fbirder]

PA sounds a distinct possibility.

I would ask for two things -

Injections every 8 weeks, not 12. The guidelines in the British National Formulary were changed and the doc probably doesn't know that. They are now allowed to prescribe every 8 weeks.

A referral to a neurologist for your paraesthesia and other neurological symptoms.

[LeighW in reply to fbirder]

Thanks for your reply. I have managed to achieve them agreeing to every 8 weeks although they are making me have a blood test to check it’s not getting too high. Will be printing the guidelines and taking with me next week stating this should not occur.

The referral is probably something I should explore further. This has been discussed with the GP but he almost had nothing to say to me talking about suffering from formication.

[fbirder in reply to LeighW]

There is no such thing as 'too high'. stichtingb12tekort.nl/weten...

[Sleepybunny in reply to LeighW]

Another article to show GPs

"Misconceptions about a B12 deficiency"

stichtingb12tekort.nl/weten...

See section 6.

"although they are making me have a blood test to check it’s not getting too high"

There is something in the BSH Cobalamin and Folate Guidelines about retesting once treatment has started being irrelevant. Perhaps you could show this to GPs?

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Has your GP seen above flowchart?

Have you thought about joining and talking to PAS? They can hopefully suggest information to pass on to your GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

There is a useful leaflet/article you could print out for GP if you join PAS.

"An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

[Cherylclaire Forum Support]

….However it seems there is such a thing as "too low" when it comes to MMA :

"Raised" and "high" being very different in terms of a secondary confirmation, it would be interesting to know exact results: mine, at a regular 350-400 nmol/L (range: 0-280 nmol/L) over 5 tests, was said to be "raised" -but decided it was likely to be "my normal".

I was told that B12 deficiency indicators would show at several times higher than this.

Renal problems also need to be ruled out.

I was checked for small intestine bacterial overgrowth (SIBO) - a hydrogen breath test. Results "inconclusive" and could have indicated either SIBO/ IBS. Since it was SIBO they were checking for, GP put me on a course of antibiotics which apart from adverse reaction (vertigo, headaches) did nothing at all. [ SIBO can rob you of several vitamins, B12 being just one. ]

The strong family history, the "mild gastritis" and the symptoms are sufficient indicators, I would have thought.

Regarding B12 deficiency: I was deficient in 2016 at 196 ng/L, because local range was 197 ng/L- 771 ng/L. Glad, because I wasn't able to stand up straight by then.

[Sleepybunny]

Hi,

Not sure if you've read this article before but perhaps your GPs would find it interesting.

B12 article from Mayo Clinic suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful B12 treatment should not be stopped

ncbi.nlm.nih.gov/pmc/articl...

I am not medically trained.

[Bummed]

Here’s my story. I’m from east coast United States. 63 year old male. My deficiency reared it’s ugly head 5 years ago. Woke up to a snapping shock when my hand brushed over my chest. I was stunned. Never happened before. Ran to the mirror and saw nothing Went about my business and a few days later I felt a wave crossing my chest. As the next few weeks unfolded I experienced shocks in my feet arms legs Tingling all over culminating in nerves in my back feeling like it was creeping. The last phase was my tongue and roof of my mouth burning.

Needless to say I was consumed with the internet looking for a diagnosis. At the same time I started my incredible journey of navigating through the oblivious doctor appointments. Started with my gp testing me for thyroid Negative. Symptoms continued.

I thought it was MS but didn’t have symptoms. Everything pointed me to b12.

Asked my doctor for last 15 years of labs. Luckily he did b12 testing all those years. Saw it go from 575 to the most recent result at 205. Saw under the b12 result that 5-10% of people who are under 400 and symptomatic most likely are deficient. Told the doctor that I wanted to take b12 shots and he said how did I know it was b12 and not one of the other B’s. I said that I did enough research to believe that it was b12. He reluctantly gave me a shot. Knowing that I would need much more I decided to find an internist that would be up to speed on b12. I asked around for the very best in the area and found one highly recommend. Initial appointment I explained my symptoms and he said it was within the range of where b12 should be and said what I was experiencing would resolve on its own in time. Unsatisfied I made him test my blood once again and it came back at 1200 This was right after I had gotten the shot. I called his office to explain and asked for a call back but nurse called instead and said it was fine and to retest in 6 months. Frustrated and with no relief I went to see numerous other doctors and finally I ended up at the university of Pennsylvania with what I was sure to have a diagnosis with a top neurologist.

After an examination and explanation of my symptoms she discounted b12 much to my dismay. She sent me for bloodwork and and mri of the brain and cervical. All negative. Told me if symptoms came back to come and see her in 6 months.

While all of the was going on I was taking 20000 mcg of sublingual methyl cobalymin daily trying to navigate my way through this nightmare.

I know this is extremely long winded but I know there are people out there that can’t get enough of others experiences to help them figure out what’s going on with them. Everyone has a little different story.

I finally stumbled across a doctor who was a wellness doctor. She happened to have an office at my gym. I sat down with this young woman doctor and poured out my story. She got it!!!! And she was all over it!!!! I finally found someone who was fluent with this insidious disease. She sent me for extensive blood work and low and behold I lacked intrinsic factor. She put me on methyl shots that she showed my wife how to administer. 1000 mcg every other day until the symptoms resolved. After that shots once a week. My greatest fear was permanent nerve damage. It took 98 days to find a resolve.

Read “could it be b12”. That was the book that saved me.

Fast forward four and a half years. Cut back dosage to 500 mcgs every week and then to same dosage every two weeks. Was scared into doing this from everyone telling me my b12 was too high always in excess of 2000 and reading about negative health affects and possibly increased chances of death.

Symptoms reared it’s ugly head once again. Five months ago everything happened at once on the same afternoon. There was no slow progression this time. I was in full deficiency. So aggravated with myself for listening to uninformed people who were CLUELESS about how this consumes your ability to live normally.

It took about four months of reduced dosage to have symptoms return. And return they did. Started the every other day for about a month and then once a week again. Always 1000mcg. It took another five months for the symptoms to slowly dissipate again. I was so relieved!!

Three weeks have gone by now and had some reoccurring symptoms are back so I guess once a week is not sufficient. Will try twice a week. Hopefully I will figure this out and stick with what works.

Had to say that I went to 2 internists 3 neurologists 1 hematologist and had numerous mri ‘s. If I wasn’t my own advocate I shudder to think of the potential permanent damage that I would have had to live with.

By the way the hematologist confirms that I lacked intrinsic factor but said I shouldn’t need more than one shot a month. He also insisted that what I was feeling on the second bout was in no way the b12 again! Because he also didn’t get or understand how the deficiency really works.

I am now waiting to see if I can reign this in. I told my wife that I would rather take the b12 and live a shorter life if it kills me than suffer with the symptoms!