I am a 60 year old male, I don’t know if I have PA, B12 deficiency or other. I have a number of symptoms which lead me to believe it is at least a B12 deficiency. Having asked my GP for an “active” B12 test I received a full serum test which came with normal levels and apparently that was me cured, my persisting symptoms were irrelevant, hallelujah!!! After a contentious telephone call where I was informed that they don’t have access to active B12 tests, homocysteine or MMA tests, I offered to go private and got a referral for paraesthesia and possible B12 deficiency (which was worded as “patient believes”).
Having contacted my insurance company they had no clue where to send me and didn’t think they could cover blood tests and eventually suggested an endocrinologist, however after a little more research, and finding information on the British Society of Haematology, I approached a consultant haematologist who turned me down for an appointment because it is not in his specialism.
I have discovered companies like Genova Diagnostics who do a methylation panel, genetic testing etc, thyroid panels, and I realise that I can get an active B12 test at a pharmacy or online, but I was hoping to get either the NHS or my insurer to pay rather than pay out of pocket for things we already pay for twice. Also if I am deficient I want to actually know why and hence choose the right form of treatment and not just guess.
So my question is where do I go? Who do I approach? In Holland for instance there are specialist B12 clinics, is there anything similar here in the UK. I am around the Bracknell, Berkshire area but I don’t mind a bit of travel to see the right person.
thanks in advance.
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Thanks Jilly I have ordered a home active B12 test from medichecks. My problem is with two forms of health insurance (NHS & private insurance) I am not sure why you should have to pay more and do your own diagnosis (that is what doctors are meant to be for. Also this test just tell you yes or no and not why. But it could be a start, who knows I might be wrong but in that case symptoms still exist.
What doctors are suposed to do and what they actually do these days is very hit and miss to say the least. I think us older generation are still living in bygone days.
Once you get the results post them on here if you need further advice or guidance. At times we have no other option than to take our welbeing into our own hands.
What was your B12 level?. GP's can be very black and white about levels. 1 point above the baseline and you don't have B12D. Which we all know is nonsense.
I don't think there is much help out there for you. Most GP's think that B12D is a 'fad', an imaginary illness.
I know it is really frustrating but the most important thing is getting the diagnosis. One thing at a time.
Record your symptoms in a diary. The next step is treatment and then when you are feeling better you can start putting things together. Working out root cause can be a bit of a jigsaw.
Just wondering did you also have your Folates and Ferritin and Vitamin D tested?Your GP can order these tests , it's often a good idea to rule out Folate deficiency because this can cause similar symptoms to B12 deficiency.
Low Vitamin D can also cause a number of symptoms.
I have a blood test very soon & I will speak to my gp & ask them. I have felt for a long while. That I heed b12 .. so many tests & appointments booked as Jillymo knows. We have been having lots of conversations about the lack of care & neglect that we all receive from the nhs. It's taken months for me to get treatment I have been tearing my hear out. I now have a gp at this new surgery investigating why I was treated & spoken to lik e I was absolutely shocking. I had emergency appointment yesterday with this Dr. Who checked my legs out as I was in excruciating pain in my right leg Wednesday/Thursday morning. I was treated with respect from the moment I stepped through the Entrance of this very big surgery. The Gp I saw was thorough, polite, respectfull. She was impressed when I told her what I done to get out of this excruciating pain. She said you did everything right. I replied well I have been dealing with all this for many years & do my research on nhs website & its my body. I know what it likes& what it doesn't better than any dr specialist ect.
When appointment was over I got my stroller with 2 bags of shopping on the seat & then the banter began between us. We both laughed so much
She then said its been a absolute pleasure to meet you & I replied the same back to her. Wow a Dr with a sense of humour now that is unusual
& very refreshing. It's such a relief that this surgery & all that work there is listening. Thank you for posting this & I wish you good luck on your journey. Where there is a will there is always a way. Big virtual hug x
Have you looked at the ‘Cambridge Iron Clinic’? I haven’t used the clinic, but I’ve heard other people say it’s good. It is a private clinic, based in Cambridge. They have a website you can check out. Hope you get the answers and treatment you need. All the best.
What was the B12 result in your recent blood test? Plus other results such as folate, iron panel results, etc? Were you on any B12 supplements before the test?Make a full list of all your symptoms- I suggest looking on the PAS website whilst doing do, plus other sites like B12deficiency and B12D.org, to help you in doibg this- I had many "a-ha" moments over things that were/probably symptoms that I had just ignored, put down to aging or lack of sleep etc etc. I had almost 3 pages of symptoms once I had done a thorough exercise in this!
Go back to your GP armed with your list and ask them what they think could be causing your symptoms. If they think it is not B12 deficiency, what do they think it could be?
They won't do an Intrinsic Factor test if the B12 result is showing normal. Though it is unreliable anyway.
As for getting to to an actual diagnosis and the cause of B12 deficiency, my experience is that that doesn't really happen if you get a negative IF result.
thanks for the reply, I have been to websites you suggest and b12d suggests 75% chance of B12 deficiency and that was me being cautious with the answers on their calculator. I approached listed out major symptoms for doctor and the haematologist I approached, no interest
No B12 supplementation before tests.
I have included results below.
18/07/2023
Total white cell count: 4.7 10*9/L (normal range: 4 - 11)
No B12 serum result? It's not the best indicator of deficiency but if it does come out clearly low or borderline thats important. A doctor telling you the result is normal or ok doesn't mean very much - you need to see the actual result and ranges since many will ignore a result that is only a point or two into the "normal" range and tell you everything is fine. There are even cases where clearly low results were present but people were given assurances for years that everything was fine, sometimes resulting in permanent injury. Do not trust. Verify. Your doctor won't have to live with the consequences of an untreated or undertreated deficiency.
"Well into normal range" - I know it seems pedantic but the actual level is useful to know and whether you have been supplementing with b12. Ditto detailed symptoms.
One of the best diagnostics for b12 deficiency, where there is reasonable suspicion of deficiency, is whether the patients symptoms start to resolve with treatment.
I totally get your frustration with the NHS and having to pay twice; however, many of us only have sufficient "bandwidth " to deal with managing our b12 and possibly other related issues.
For completeness I have included my last full serum B12 result.
I won’t list a full list of symptoms here only to say that when looking at many lists and B12Ds own checklist it shouts B12 deficiency.
As much as appreciate some of the comments I didn’t come to this forum to be diagnosed, but to get some idea of a specialist or specialism I should be looking for and I think it says something about the state of the recognition of this problem that no one has been able to say “go see this group/person/specialism”.
I have now got an Active B12 test which I will perform and send back on Monday, and depending on the result I will possibly start self treating in some way or order more tests.
However I would like to see a specialist as although B12 deficiency is a problem in and of itself, it is also likely to be a symptom of a deeper underlying problem which I would like to identify for many reasons.
I am in the U.S. and I'm including a bit of detail here because I know you probably need it. I know I did.
If you will buy a box of cracker jacks and look for the prize inside, it will provide as much information about your problem as a GP will or any doctor for that matter. I was recently diagnosed with Pernicious Anemia (PA). It took about a dozen doctors including some specialists, but now I finally have a diagnosis. Last year my labs revealed that I was folate deficient. I've had nothing but healthy physicals for the past 20 years or so, but I had all the symptoms of vitamin B12 deficiency during that time.
3 weeks ago, my wife and I went to a hematologist. He said he would order an IF test, but said it was a waste of time because I appeared too healthy to possibly have PA. He told my wife that I was a hypochondriac and said that I had wasted her time and his time because I was a self-referral and was not referred by a GP. He said he only sees "sick people". He said I had gotten on the internet and confused myself with a little bit of facts and that he knows I am perfectly healthy because he is a specialist. He would be shocked if I tested positive for the IF test, he said. Well, I did test positive. On a follow-up visit to discuss the results, rather than eating his words in front of us, he sent his Physician Assistant in to break the bad news to us. She was wearing a plague mask when delivering my diag. of PA. Ok, enough of my story.
So here are some suggestions. Find somewhere to give you an IF test. That's the Intrinsic Factor antibodies test. You can ask your GP to call in the request for the test to the lab or he(she) can write you a prescription and take it directly to a lab yourself (any lab should do).
Once the results come back, you will know the following:
1. if you have pernicious Anemia or not.
2. if you are vitamin B12 deficient or not.
Another test that is also helpful is the homocysteine test. This test lets you know if your homocysteine levels are high or not. In people who have PA, 80% or more have high homocysteine levels, so high homocysteine levels is a good indicator for PA.
As for vitamin B12 deficiency, if you have PA, you are B12 deficient. If you test positive for the IF test, it means you have one of 2 conditions, either blocking antibodies or binding antibodies. Both of these antibodies attack your intrinsic factor not allowing it to bind with B12, so it keeps you from absorbing B12 from any meat you eat (the main source of B12 ).
PA is an autoimmune disease, so those antibodies attack your own body not allowing you to absorb any B12.
You can just test for your B12 which means the lab would draw your blood and see what your B12 levels are, but over here in the U.S. at least, the range for B12 is 200 to 900. However, if someone has a level of 300 for instance, they are in bad shape. Mine last year was down the 308 and of course, now I know I have PA.
So if you have the IF antibody test, you sort of answer 2 questions with one test, again because if you have PA you are B12 deficient, but if you are B12 deficient, you may not have PA. My diagnosis of PA means that I can no longer absorb B12 by taking oral tablets, or liquids, or absorb B12 through what I eat. I must have B12 injections for the rest of my life. Eventually, hopefully, I will see how many per week I need, but for now, I am hoping to have at least 3/week.
So, once you know you do not have PA, then you should be able to take B12 pills, sublingual, patches, or other types. That's why I say have the IF test to rule out Anemia or you will always be wondering and PA is no insignificant disease.
I hope this helps. Do all the self-research you can.
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B12 active test for P.A?
B12 injections stopped by gp after 5 years treatment on nhs 
Am I wrong?,
Serum B12 levels compared to active B12 levels 
I don't want to go down the rabbit hole again...
