Does anyone have any recommendations for good private b12 or PA specialists in the London area or South East of the UK?
For context I am 33 years old and undiagnosed but have suspected for a long time that I have a b12 deficiency or perhaps even PA. sorry for the long post but I wanted to give context if anyone can offer advice as I am determined to get some definitive action.
Blood tests always come back with high MCH (around 33) and MCV at the high normal end of the scale (96 or 98ish recently though I have had over 100 in the past) Recent blood tests have shown my b12 at 180 which was flagged as below the lowest benchmark of 189, but the Dr won't do anything for another 4 months and only if there is a low score in my next test, as he says I am "borderline". My grandmother was diagnosed with PA in her 50s and my mother also has had similar quirks in her blood tests though no diagnosis of b12 or PA.
The symptoms I've had on and off for about 8-10 years are wide-ranging but main ones are fatigue, sore throats and pains in mouth, tingling in foot, hand and sometimes face, headaches and face pain, tight chest and breathlessness, racing heart, chronic constipation, tender pain in middle of my chest, ringing in ears, flickering peripheral vision, dry eyes and mouth. I've tried to explain these symptoms to many doctors but get told they can only deal with one thing at a time in appointments, that it's silent reflux (was prescribed PPIs but just made it worse), migraines or that I'm anxious. Which I probably am because I feel terrible all the time!
I want to go private as I am being referred from department to department while the NHS investigates individual symptoms, and none of them seem to have any interest in the b12 angle. So I want to see someone who understands b12 once and for all. If anyone has any suggestions I would be so grateful, and I'm sorry if this is covered elsewhere or not appropriate to ask on this forum.
Thank you!
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franrose
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Thanks so much for your reply, it was really helpful. Some answers below.
"Has folate iron ferritin vut d l been tested": yes on my last CBC in September I had 6.7 ug/L for folate, ferritin 31 ug/L which are both in normal range. I had another CBC in November but annoyingly the Drs wouldn't print out the full scores just a comment saying normal (everything else) or satisfactory (the usual MCH). In any case apparently they didn't test for b12 in that test. My doctors is absolutely awful for putting anything online but I'll try to get hold of more comprehensive medical records. Vitamin D hasn't been tested recently but I did have a deficiency about 10 years ago which I took supplements for and it was never tested again.
"IFAB test ? Thyroid": not sure about IFAB but Thyroid was tested in above September test, TSH was 1.6 mIU/L and serum free T4 was 14 pmol/L. so again, both look inside normal ranges.
"Do you eat a b12 rich diet?" Yes I'm not a veggie or vegan, I don't eat a huge amount of red meat but not averse to it and eat dairy/fish/chicken/eggs daily
"Have you tried oral supplements ?" Yes but haven't had much success, I find the symptoms kind of come and go though which I'm not sure is common for b12 sufferers/people with PA? I've been keeping a diary and I have at least 2 symptoms every day but not always the same thing? No idea if that tallies with functional b12 deficiency/PA.
Re referrals: I had a referral in May to colorectal dept about my digestive problems but after one examination, he said I was "healing" and referred me back to the GP... problems still ongoing there. Last month GP referred me again this time to Maxillofacial on an urgent 2-week referral due to inflamed tonsils/sore throats since July, the doctor there said my tonsils were inflamed and she thought I had a red stripe on my tongue, but not really her remit so sent me on to ENT which took place today. ENT Consultant said my tonsils were actually perfectly healthy and he had no clear reason for my sore throats. Put a camera up my nose and said he could see some congestion so now I'm being sent for allergy blood test and he will call me in 6 weeks. Suggested it was anxiety or remnants of a virus which I find really frustrating because it feels like a get out clause for everything. Every time I mention b12 they brush it off or say that my MCV scores look within range so it's unlikely. I don't get that though as my MCH is high and that seems to be an indicator too. I take your point though that once they have exhausted other options they might take that more seriously.
Thank you so much for the suggestions on how to push this further, I will definitely take your advice. Especially the letter idea. My plan had been to continue NHS investigations and pay for some private investigations alongside, but maybe I can hold out til this latest allergy thing is ruled out.
Just becareful in low ferritin MCV can't measured correctly and it shows normal but it's not. Before any B12 taking first do all of the tests first. MMA ,homocysteine can't measured correctly after B12 injection. Low active B12 and low d vitamin go hand in hand.
Thank you, that's really helpful to know re: the ferritin. I didn't take much notice of the last blood test score for ferritin as it was over the benchmark of 5 but looking into it, 31 sounds quite low. Also thinking about it, I had a blood test years ago that said my iron was high so it's quite surprising that it is on the lower end now. I will try and get the tests done first before taking anything, thanks for the advice.
when active b12 is low feritin can't be kept high even if you eat meat all the time or take even iron pills and unfortunately doctors mostly don't notice that. This b12 deficiency and feritin is gray area for most doctors.
Thank you, your symptoms sound similar to mine - in the past I suffered more from neurological things like the headaches and tingling but the past few months my most prevalent symptoms have been oral things like these sore throats, a feeling of something stuck in my throat, a ring of red spots on the roof of my mouth, sore gums and dry mouth. I will definitely write a letter to my GP. Thanks again for your advice.
I’m afraid that there are no such specialists that I’ve ever heard of . When I was desperate , and was just sent on my way when I knew that there was something very wrong , I went to see a private doctor at my local Nuffield hospital , who diagnosed Pernicious Anaemia ( Positive Intrinsic Factor test ) This test is the only one for P.A. Unfortunately about 50% of P.A. patients test negative . Do read what our scientist says about this( FlipperTD ) Any how this positive test forced my GP to start treatment - firstly 5 injections over 2weeks then 1 injection every 3 months . This was much too infrequent to keep the symptoms at bay , but my GP refused to budge . Luckily I came across The PAS ,and this forum , I found out where and how go get B12 ampoules, as here in U.K. , they are a prescription item . We get them from German online pharmacies . They are not expensive . Needles and syringes are obtainable in U K . Many of us on this forum are forced to self-inject to keep well . At least you know that now. .
Thank you it's interesting to know that a general private doctor would be able to explore this, I've never used private healthcare before so have been a bit baffled about how it all works. You've also given a really useful summary there of what might happen if I do get a diagnosis. It seems such a misunderstood and misdiagnosed thing, every doctor I speak to is completely dismissive, doesn't even entertain it as a possibility - and I'm not sure if it's because I'm barking up the wrong tree or they're just not familiar at all with how it presents. I'm so glad I've found this forum to arm myself with more info - it's not that I want it to be b12 issues but I just want it to be properly explored. Thank you again for your advice.
It’s quite significant that your grandmother had P.A. , because there is definitely a genetic link . Also your B12 is low and your symptoms are indicative of P.A. .Do read the Question of 2days ago put by Sparklingsunshine “ HOW DO YOU KNOW IF YOU HAVE PA” and see what Flipper TD, who is a scientist who has worked in the field of blood testing , says on the subject .
Thank you, I've gone back to have a read of this and it's very helpful. I too think my family history is signficant. My mum had a bone marrow test when she was pregnant with my sister aged about 39, as her MCV kept coming back as high in blood tests and they said she had macrocytosis. She says it's always been like that but has never had a b12/PA diagnosis. She does have a genetic blood condition called haemochromatosis that causes iron overload and has some crossover symptoms with PA, so that might have skewed some of the testing by the sound of things. I was tested for that and I'm a carrier but don't have it myself.
Thank you very much for these resources. I have been thinking of going via a gastro doctor as some of my symptoms are very much digestive system related. Will have a good read through those links.
Hi - I can't recommend a private GP sorry, but I wondered if you'd considered a private B12 blood test?
I had the same difficulty as you with "not low enough" blood tests, despite strong long-standing symptoms. In case you're unaware, the NHS tests Serum B12, which is the total active (useful) + inactive (useless) B12 in your blood. So if you have a majority inactive B12 but a lot of it, you could still show as a relatively "normal".
I took a private Active-B12-only test (Superdrug Online Doctor do an at home kit for ~£40), and lo and behold, I was very definitely B12 deficient! It's been harder for any doctors to argue with me since.
There is also as mentioned above a blood test for Intrinsic Factor Antibodies (available on the NHS or Superdrug) - a positive result can confirm PA, but importantly a negative result does not rule PA out. Also important: this test is only realiable if done before starting B12 supplements (or waiting so many weeks until they're out of your system again, but that's unpleasant).
Also it may not be surprising if PPI use made your symptoms worse. B12 from food (not tablets or injections) requires an acidic environment to break it down before it's absorbed, so PPIs are known to cause problems for B12 and a few other vitamins.
Thank you! I actually ordered this test back in September but the sample haemotylsed en route back to the lab, so I've literally just done the replacement test they sent. I will be interested to see the outcome! thanks very much for the advice.
I got my results back from the Superdrug test and I'm more confused!
Active b12 : 45 pmol/L (normal range 25.1-165.0 pmol/L, so this looks fine)
Intrinsic Factor Antibodies were negative
Folate: 4.5 ug/L (no range or comments given for this which I will clarify, but on a GP blood test I had before the lower limit was 4.8 ug/L)
On the Superdrug sample I took in September that haemolysed, my b12 was given and was supposedly 83 pmol/L which was well within range, so if that was accurate it has declined quite a lot but is still considered "fine".
If anyone has any thoughts, would be greatly appreciated!
I'll admit, I'm a bit confused as well! With your Serum B12 borderline, I was anticipating a much lower Active B12 result. I'm afraid I'm not familiar enough to know whether 45 could still be considered low in practice with respect to symptoms (as opposed to just strictly following normal range guidelines).
There are other, generally less common things that can effectively cause B12 deficiency - e.g. you may not have a problem absorbing it into your blood, but you may have a problem utilising it. I think a Haematologist is where you would go next for further investigation, but I'm sorry I don't know as much about that or what else to recommend.
Some people are diagnosed with high levels of stomach acid ( hyperchlorydia) when the problem is actually low levels of stomach acidity (hypochlorydia) or achlorydia (no stomach acid).
The symptoms are similar whether it's high or low levels of stomach acid.
UK GPs/specialists are unlikely to accept private blood test results but a significant result in a private test may be enough to nudge them into ordering the same tests.
PAS website has useful leaflets. Some PAS members print them out for their GPs.
There are many possible causes of B12 deficiency eg diet, PA, Coeliac disease, internal parasites eg fish tapeworm, damage to terminal ileum (part of gut where B12 is absorbed), H Pylori infection, exposure to the gas nitrous oxide, some medicines/drugs etc.
Seeing a specialist is no guarantee of better treatment and understanding but fingers crossed you'll find one who understands PA and B12 deficiency.
Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg more on causes/symptoms of B12 deficiency, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
It is free for your GP to join PAS as an associate member.
PA can run in families.
Has your mum been tested for PA?
Maybe she would find some of the info I posted useful.
Getting a GP to take notice...
Might be worth pointing out to GP in any letter you write that untreated or under treated B12 deficiency can lead to permanent neurological damage including damage to spinal cord. See link to PAS info on SACD, sub acute combined degeneration of the spinal cord.
I'm not saying you have SACD, I'm not medically trained but I am saying your GP and any specialist you see should be aware that SACD is a potential consequence of B12 deficiency.
Blog post from Martyn Hooper's blog, mentions SACD
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
Proof a letter was received can be useful in case a formal complaint is needed in the future.
I included a request in letters that a copy of my letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but keep them short.
Keep copies of any letters sent or received, screenshots of emails if appropriate.
Self treatment
Some forum members feel they have no other option but to self treat. I was forced to when all possibility of getting NHS treatment ended.
Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
"It seems such a misunderstood and misdiagnosed thing"
Don't be shocked if they try to stick labels such as ME/CFS/Fibro on you or they suggest it is depression/psychosomatic/FND - Functional neurological disorder/ hypochondria/GAD Generalised Anxiety Disorder etc etc.
If you get a label such as ME/CFS it's possible that any efforts to find out what is causing your symptoms come to an end.
Misdiagnosis of B12 deficiency as ME/CFS and other conditions
Thank you so much for this and your other messages, it is a gold mine of information! Thanks much for taking the time to send it to me. I believe I was tested for coeliac and no action was taken beyond the negative result.
As you recommended I will take some time to read through your suggestions, but the things you've mentioned about the other misdiagnosis really ring true for me. Every time I feel I am getting somewhere, someone mentions stress. About 5 years ago I went through about 5 months of back-to-back tonsilitis and chest-related illnesses, along with some of these symptoms I now suspect are b12/PA related, such as temperature changes, fatigue, even a "bright" liver on an ultrasound. I kept trying to push further investigations, but was told I needed CBT for health anxiety - I finally managed to see a different doctor and it turned out I had severe untreated asthma causing many of the recurrent illnesses.
Because of this health anxiety diagnosis and CBT referral, I think doctors see it in my notes and write me off as a hypochondriac. I've mentioned b12 in every appointment I've had since the summer, and my grandmother's diagnosis, but the closest I have got is a recent clinician said "we'll investigate that if we draw a blank elsewhere." I think your guidance on how to write to the doctor will be invaluable because I struggle to condense everything into the rushed appointments, and obviously unless you are concise it's hard to get the point across.
I am absolutely determined to get this investigated, and really appreciate the advice you and others have given me to help push this along. Thanks again.
I hit many setbacks during my fight to find out what was wrong with me and at times I used to get so upset with the response from medical professionals but eventually down mainly to my own detective work, I worked it out.
I suggest you think about other conditions they might think are causing your issues and then try to get tests etc to eliminate these possibilities.
Thank goodness for Dr Google although I'm sure a lot of GPs won't agree with that comment.
I googled every symptom I had and narrowed the possibilities down to three conditions then had tests to eliminate two of the possibilities, leaving me with B12 deficiency.
I got hold of all my test results over a few years and at this point remembered a previous below range result for B12 for which I only had 5 or 6 loading injections then nothing more despite me having 40 plus typical symptoms. The GPs I had at the time, saw that my B12 level had gone up after loading injections and thought that was the end of the story, no more B12 needed, despite my multiple neuro symptoms and me pointing out as politely as I could that they had not followed the treatment recommendations in BNF.
I tried so hard to get treatment and referrals and mentioned B12 at virtually every appointment, got shouted at and snapped at by GPs and neurologists and had a huge file of research and correspondence with GPs but was refused treatment on several occasions. In the end my GPs put pressure on me to leave.
I was left with no alternative but to self treat because I could see myself heading for dementia and permanent spinal damage due to their ignorance. I already had dementia type symptoms and spinal symptoms.
I had to cope with most of this process on my own as I had no-one who was willing or able to help me fight the GPs to get treatment.
I do hope you have someone supportive to help you. Even better if they have read about B12 deficiency and PA and have some understanding of what you're dealing with.
When pandemic restrictions allow, I suggest taking someone supportive with you to face to face medical appointments especially if the GP/patient relationship is under strain.
Maybe have someone supportive in the room if you have a telephone/Skype etc appointment.
My impression is that doctors are sometimes kinder and more careful about what they say if there is a witness present.
Consider asking permission to record your appointments. GPs and specialists are likely to be reluctant to do this but you should be able to argue your case on disability grounds if you have concentration issues, memory problems, confusion or fatigue.
Some people go to the Press or other media about their struggles to get adequate B12 treatment. This is not an easy option and can permanently affect GP/patient relationship.
Newspaper article about patient struggling to get B12 treatment in Scotland
I had most if not all of the diagnostic labels I mentioned in my previous reply.
"I believe I was tested for coeliac"
I recommend you access your medical records and check. If coeliac disease is caught earlier enough, a strict gluten free diet may allow the gut to heal enough for absorption of B12 to improve.
If you are happy for people to know which is your CCG or Health Board, I can try to locate the local B12 deficiency guidelines for your area but please be conscious of your privacy. Posts from Health Unlocked can appear on other websites such as NHS website.
Sometimes GPs are constrained by what local guidelines say or by finances and feel they cannot offer the treatment they would like to.
GPs are allowed to use their professional judgement to prescribe treatment that is off licence so if a GP says they are not allowed to prescribe more B12 than local or national guidelines in UK suggest, as far as I know that is not true.
Some forum members manage their B12 deficiency by using high dose oral B12.
Personally I found this ineffective.
Sometimes low dose cyanocobalamin tablets (50 mcg) are prescribed or recommended for dietary B12 deficiency. In UK, my understanding is that B12 deficiency with neuro symptoms is supposed to be treated with B12 injections even if the cause is dietary.
Be warned that there are moves across UK to put more people onto high dose oral cyanocobalamin (1000 mcg) as an alternative to B12 injections. This is often promoted as easier for the patients but cynical me suspects a cost incentive.
Hi everyone, I just wanted to give an update. Following your advice, I did a lot of research on the links provided and wrote a balanced letter to my actual doctor (who I can never get in to see) explaining my case for why I thought I should be investigated for PA/low b12, including my family history, blood tests, previous diagnoses etc.
Honestly I wasn't expecting a good outcome but felt this was a last ditch attempt to get something done by my NHS GP before going private. Anyway the doctor rang me this morning and said that he had read my letter in full, agreed that I needed to be treated for low b12 and would immediately be putting me on b12 injections. He will also be investigating me for PA and various potential gastric causes. He said I should've been investigated from the first low b12 result and apologised for the other doctors who didn't action that. He seems to understand the condition, that different "active" levels are satisfactory for different people, and that it is difficult to absorb a good amount orally. I almost fell off my chair.
I realise this is the start of a long road, there may be other knock backs, and it shouldn't really be a relief to find out you have a condition, but I've waited 10 years to get to this point (since my first low b12 blood test) and to say I'm relieved is an understatement. I guess it is unsurprising to be relieved after years of being told I was stressed, a vegan (I'm a meat eater and always have been) - one even suggested I drank too much based on no supporting information whatsoever.
I don't want to make this sound like an Oscars acceptance speech but I do want to recognise the value of stumbling across this forum. It is all thanks to this forum that I have got this new opportunity - it would not have been possible without everyone who responded to me. Without your advice and kind replies I wouldn't have thought to write this letter and get a step closer to feeling well.
I am so relieved that this forum of supportive people exists, I hope all of you find solutions to your health troubles and have a happier 2022 xx
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