Pernicious Anaemia Society
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B12 deficiency but doctor now suggests it's Parkinsons because symptoms are no better in a year.

Writing on behalf of my husband. He has been unwell for about 3 years after a difficult gall bladder operation requiring a 24 day stay in hospital. Since then has been gradually going further down hill. He had 4 blood tests in about 18 months with Drs saying there was nothing wrong. Until in April 2017 he had a blood test with Blue Horizon. Thinking it was a Thyroid problem he had the 11test. Thyroid, Vit D, B12 and folate. All within range with exception of B12 which was 51 optimal is 725. He saw his GP who excepted the test and arranged for 2 injections a week for 3 weeks. Then one every 3 months. Since then he has got progressively worse. Now walking is difficult and he is stumbling, and depressed and shakes a lot. I know there is no test for Parkinsons but it appears to me that the symptoms (which is how they diagnose Parkinsons) seems very similar to low B12 symptoms. So any advice would be greatly appreciated. Sorry it's a long post. Thanks Pam

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Hi, I have very similar symptoms. Mine were a combination of Pernicious Anemia depleting my b12 prolonged and Gentimicin toxicity syndrome. It gave me Ataxia (took my balance away) I can’t hear hardly any more it messed with my eye sight perception, messed with my Proprioception so walking and balancing in the dark is impossible, I have tremors especially in my legs. Antibiotics of two family class has destroyed my health. Liver and kidney damage .... it has been progressive.

While your husband was in the hospital did he receive any antibiotics? I inject twice a month b12 to keep my levels up.

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your husband obviously has neurological symptoms so the correct loading regime would have been B12 shots 3x weekly until symptoms stop improving followed by maintenance shots every 2 months.

Do you notice any improvement after your husband has the shots and then it disappears - could be quite quickly?

Serum B12 isn't going to be a good guide to what is happening now that he has had B12 shots as a fair number of people react to high serum levels in a way that makes the mechanism that allows B12 to go from blood to cells (where it is needed) much less efficient ... and it also seems to slow down the rate at which B12 is removed by the kidneys - so the worst of all worlds - leaving your cells deficient but your serum levels really high.

Your husbands levels were extremely low, so under-treatment is a possibliity.

However, it is also possible that there is something else going on. Has your husband been referred to a specialist to confirm the alternative diagnosis?

Would you be in a position to talk with your husband's GP about the treatment regime and trying a more aggressive regime (redo loading doses) to see if that helps? - if not you do have the option of trying this yourself - some people find high dose oral can work well for them and it is possible to source injectible B12 from on-line pharmacies (eg in Germany, where B12 isn't a prescription only medication).

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Hi Gambit62 thanks for your reply. He initially for about 24 hours very tired after injection. Then enthusiastic for maybe a day or two then dragging himself about again. (This has got worse since Christmas) I think the only way to get Drs to listen is to do another blood test via Blue horizon which am thinking of doing. I have bought some cyanocobalamine from France which he was taking orally which I think helped a bit last year, but need to get more and not sure how much to take as he having an injection once every 3 months. Think the problem with dr is they only accepted the B12 cos of B.Horizon blood test. No dr doesn't think it's necessary to go the line of neurological, although maybe could insist by going privately as things are not improving and upto 3 years ago approximately he was very very active, doing things on the house etc, now he struggles to lift a shopping bag. Don't know what to do for the best or which way to go with his health. Or should I say lack off it. Thanks for your help though, much appreciated.

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Oral - you would need doses of at least 1000mcg a day - possibly much more. You can also get these in the UK - it's only injectable B12 that is covered by the prescription rules.

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Oh I didn't know that. Will look to see where I can get them and thanks again

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injectable B12 used for medical purposes comes under a blanket requirement for all injectable medicines to have a prescription before they can be dispensed. Use for cosmetic reasons isn't covered and in other instances B12 is classified as a vitamin supplement

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Thanks again Gambit62 every bit of info is usefull.

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Jarrow Methylcobalamin B12 lozenges are available on Amazon - 1000 & 5000 mcg.

I noticed a year ago you posted on Thyroid UK and it was mentioned that hubby's TSH indicated it was struggling. A year is a long time in thyroid health so may be worth testing again.

As hubby is having injections his B12 result will be high - so not so helpful. Is he taking a good B Complex to keep all the B's in balance and to provide Folic Acid or Folate ? It works with B12 in the body in an important way.

I would obtain your own B12 and inject. I live in Crete and can buy OTC - 3 phials plus syringes for around 3 euro - so why the NHS are so restrictive is beyond understanding. The suffering and treatment of other conditions of course costs far more .....

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Hi Marz. Yes you are correct on the Thyroid and no dr not interested or even prepared to look and he had the whole blood test from Blue Horizon with all the info I put on last year. No not taking any B bits will get onto that straight away. I thought it might be a low Folate because of his symptoms but doc don't think so. Husband got to have a blood on Monday, whether that includes Folate doc didn't tell him. But if it the same blood tests they did originally it won't show anything that's why had Blue Horizon test. Thanks for helping and suggestions very kind

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clivealive always mentions the importance of Folate Testing and supplementing as B12 & Folate work together in the body in a very important way. Did you ask to see the Folate result with range that GP thought was OK ? We are legally entitled to have the copies of our OWN test results so we can monitor our own health and see what has been missed.

Sadly very little money to be made prescribing B12 & Thyroid meds. They earn far more by prescribing anti-depressants - Statins - Blood Pressure pills etc. It's all very sad but all the more reasin to take control of our health and not let the Medics keep us so unwell.

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Yes think that is the only way sometimes taking control but you do think and hope Doc knows more than you do, but not always the case. Thank you so much for all your help

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Hope all goes well for you both ...

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Oh thank you that's very very kind. Will post again when I have some further info. Thanks again. Pam

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Hi!

It's could easily be a folate (B9) deficiency too - and sometimes you get a good response from supplementing without an obvious deficiency showing up in blood tests and there is a wide safety margin with it so often worth trying.

It is wise to make sure you have the B12 deficiency dealt with before supplementing with significant amounts of B9 though because B9 supplementation can mask a remaining level of B12 deficiency and it is essential that our bodies get enough B12.

It is a balancing act as you must allow for the fact that B12 needs all sorts of supporting vitamins and minerals to work, including greater levels of folate (B9) , potassium, magnesium and iron, hence why a multivitamin and mineral supplement plus extras, at least from your diet, is often effective.

It sounds like you have the opportunity for a lot of progress from the suggestions you have received this morning and I am heartened by your positive approach!

Go for it!

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Yes have thought of the Folate and that is why got him to go to doc in the first place and he came back with possible Parkinsons which shocked me greatly I can tell you and it seems as If the B12 has vertically gone out the window. But there you go. That's life. But thanks again for your help and your support it means a great deal I can tell you.

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If his levels were that low, I bet he has an absorbtion problem so sublingual is the only way without shots. I use Nature's Bounty 5,000mg once daily and do well that way.

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sublinguals are not the only possiblity - there are also nasal sprays and skin patches and even high dose oral tablets.

unfortunately they don't always work for everyone.

There are numerous studies on the effectiveness of high dose oral - though not many large scale studies. sublinguals seem to be marginally better absorption wise than high dose oral - with around 1% being absorbed. Nasal sprays have also been evaluated for absorption in a few studies and seem to be around 3% absorption.

I'm not aware of any studies on the effectiveness of skin patches.

/The studies I refer to can be found by searching on pubmeds - though I will admit that it can be difficult to get the search right.

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

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Is there any way you could do the injections yourself?

More information is available in Wedgewood's posts and replies and mine.

It is possible to buy hydroxocobalamin ampoules from sources including a German pharmacy with a website and online ordering facility versandapo.de.

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Hi denisinmilden will search for Wedgewoods posts. Yes maybe I could do the injections for him, will search the website also. Thanks for info.

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I totally agree with others here. Your husband's B12 is very low and this would cause neurological problems with balance and walking, tremors, etc., very likely to have been brought on by difficult operation on the gall bladder and nitrous oxide, which inactivates already low B12.

Sleepy Bunny's suggestion to join the PAS is a good one as this would enable more support to obtain treatment with more frequent injections as soon as possible, as they also have printed information for professionals.

It is not the length of time treated that is important - everyone is different. I personally have treated myself with injections every other day for a year but, only recently, felt hugely better after injecting every day - stress, overdoing things, gut health, can put things back.

This link might also help convince your surgery:

stichtingb12tekort.nl/surve...

"The shorter the symptoms existed prior to diagnosis, the greater the chance for a recovery.

The sooner the treatment was started, the greater the chance for a recovery."

stichtingb12tekort.nl/surve...

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Hi Polaris thanks for info. Everything you say resonates with me. Thanks for the link to. Am very grateful for your help. Everyone been very helpful, it's nice to know there are nice people out there. Thanks

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Did you mean 3 x weekly until symptoms stop improving - in your post above ?

Gambit62

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thanks Marz - have edited response

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Hi,

I'm assuming you're in UK. Some info below may not be relevant if you're elsewhere.

I am not medically trained.

"B12 which was 51 optimal is 725"

That is a very low B12 result.

I'd suggest it may be worth joining and contacting PAS soon.They may be able to intervene and at very least can pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from a round the world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone so messages can be left.

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

Link about What to Do Next if b12 deficiency suspected

b12deficiency.info/what-to-...

Unhappy with UK treatment?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment. think they use a network of specialist doctors across UK.

hdapatientcaretrust.com/

Misdiagnosis of b12 deficiency

B12 deficiency is sometimes misdiagnosed as other health conditions.

b12deficiency.info/misdiagn...

Neurological Consequences of B12 Deficiency

PAS news item on Neuro Consequences

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

"He has been unwell for about 3 years after a difficult gall bladder operation requiring a 24 day stay in hospital"

Did he have nitrous oxide as part of the anaesthesia?

Nitrous oxide can inactivate B12 in the body. It has been known for nitrous oxide to trigger SACD, sub acute combined degeneration of the spinal cord.

See link below for more info on nitrous oxide.

gov.uk/drug-safety-update/n...

UK B12 documents

If you're in UK, I'd suggest reading all of these documents/articles.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Does your husband get copies of all his blood test results? Some people on forum get a set of complete medical records.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Other Referrals

With neuro symptoms, has he been referred to a neurologist?

NICE CKS link further up post recommends that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

UK B12 treatment

For B12 deficiency without neuro symptoms

6 loading b12 jabs over 2 weeks followed by a jab every 3 months

The above pattern of treatment seems to be what your husband has had.

My understanding of UK B12 documents eg BNF link, NICE CKS link, BSH Cobalamin and Folate Guidelines is that

For B12 deficiency with neuro symptoms, the recommended pattern of treatment is

A b12 loading jab every other day for as long as symptoms continue to improve (this could mean weeks even months of loading doses) then a b12 jab every 2 months.

Has his GP explained why he is not on the UK recommended treatment pattern for B12 deficiency with neuro symptoms.

If GP is unsure about treatment, they can look in their copy of BNF Chapter 9 Section 1.2

Info for Health Professionals

Pas have a section on PAS website for Health Professionals

pernicious-anaemia-society....

Health Professionals can join PAS for free as associate members.

There is a document available to PAS members "An Update for Medical Professionals: Diagnosis and Treatment" which your GP may find helpful.

pernicious-anaemia-society....

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Such severe symptoms, if caused by a B12 deficiency, are likely to involve Sub-Acute Combined Degeneration of the Spinal Cord. Sleepybunny mentions it in her post.

Has your husband had an MRI of his brain? That should pick up SACD.

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No I don't think doc has mentioned that. He seems to be ignoring the B12 issue, he just thinks is Parkinson. End of. Not even sure what blood tests are for tomorrow, but have asked my husband to ask the nurse and request a copy of test when done and then make an appointment with doc again to talk about all the things that have been suggested here and to see a consultant, which will probably have to pay for as he wasn't keen to go down the neurological line, but I think this would be a good idea. Thanks fbirder for your help and suggestions.

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Hi again,

I gave my GPs a copy of following

1) Copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

2) Copy of PAS Symptoms Checklist with all my symptoms ticked plus I added other neuro symptoms not on list.

3) Copy of BSH Cobalamin and Folate Guidelines with relevant passages circled.

Also had a copy of PAS article on SACD in my bag.

A word of warning...some GPs may find it hard to cope with assertive patients and GP/patient relationship can be affected.

There is a very useful summary of mainly UK B12 documents in third pinned post on this forum I'd suggest looking at.

My personal opinion is that it is best to put queries about treatment, diagnosis, results etc into a letter to GP. In UK, my understanding is that letters to GPs are filed with a patient's medical notes so are a record of issues raised and I think GPs are more likely to take notice of a letter than something said in an appt.

Link about writing letters to GPs about Under Treatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

When I was trying desperately to get GPs to consider possibility of b12 deficiency, I wished I'd had someone with me. It was very difficult to argue my case when dealing with brain fog, other neuro symptoms and pain. Think it's even better if person accompanying patient has read up about B12 deficiency/PA/SACD.

I'd recommend talking to PAS before next appt.

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Hi Sleepybunny thank you again for your help. Husband got blood tests tomorrow then wait for the results. Have suggested he asks what the what blood tests are for and asks for a copy of the results and then make an appointment to discuss the results and then ask for an appointment to see a neurologist. Thanks again.

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Your husband may need to put request for copies into a brief formal letter which he has signed. Other people can collect results for him but they may need to have his written permission to do so.

Some UK GP surgeries will have on-line access to a summary of results/records. Details will be on GP surgery website. He would need to register for on-line access.

Important to remember that on-line access is to a summary and may not have all info that is in a patient's medical files. UK GPs can only refuse to give copies if they feel that to give copies would harm patient in some way. Maximum charge for copies of blood tests is £10 in UK.

Has he asked GP if GP has written to a haematologist for advice? See NICE CKS link in one of my posts above for more info on this.

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Just a small addition to the excellent comments above:

a) Folate must be taken with B12 supplementation to ensure maximum cellular uptake.

b) Worsening symptoms after starting a B12 supplementation regime is a good sign. It's called' Reversing-out Syndrome', and it is where systems requiring B12 come slowly back to life, throwing everything else out of the poor balance already attained.

c) With such potentially catastrophically low levels of B12 your husband started with injections of 1000mg of B12 should be given every other day, until improvement following the reversing-out stops and maintenance can begin.

d) It would be impossible to overdose on such a regime; B12 is given in massive doses for carbon monoxide poisoning - at 5000mg a time repeatedly.

e) You will need to administer the injections yourself since the ignorance around B12 supplementation within the NHS is staggering.

f) Have a look at the site B12d - Dr Chandy is the expert who will advise you.

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Hi Schenks I will look at the site you have suggested and thanks for your information. Learning all the time which is a good thing. Thanks again

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Hi I'd ask for b12 injections 3 weekly , due to neurological issues , also try taking it with folic acid , and maybe get iron and folate checked .

Keep a diary of the symptoms and take this to doctor and advise him of them all . Good luck X

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Yes thanks and it seems that everyone thinks it's necessary to look to the neurological issues which is my thinking to. So now need to persuade doctors and get more help on the B12 issues if I can as my gut feeling is that it's B12 and not Parkinsons as that showed initially even though the Drs didn't pick anything up on their blood tests and when Blue Horizons test came back with his reading at only 51 when the ideal reading was 725 I thought that everything would be ok. But reading all the comments that people like yourself have posted, it seems that so many of you are experiencing what my husband is. His getting a B12 injection once every 3 months and that's that. The fact that he is no better and in fact than a year ago on his one injection evert 3 months doesn't seem to interest them or needs to be persued. So I see why a lot of people end up having to sort theirselves out as there is no other choice. Thanks again for your help.

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I had no detectable B12 when they finally tested for it. I was put on 1 shot a day for I believe a month, then 2 shots a week, for a month, then 1 shot a week, then one shot a month. I have done very well. Nerve damage from lack of B12 which causes subacute combined degeneration can be permanent if it goes on too long. Make them test the levels again. It may be his levels never did reach normal. Good luck and God bless.

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Hi Susan this has been my thinking all along that he used up the original loading dose of 2 injections for 3 weeks then an injection once every 3 months. But because originally they accepted the blood test from Blue Horizon which was only 51 where optimal is 725 doc did his own blood test and it obviously didn't match up and said um it's a bit low and that was that. So clearly as I've been reading here that often the NHS do a different less accurate test. Also as he not anaemic they tend to think you can't be low in B12. Hence the diagnosis it might be Parkinsons. But my thinking with everyone's help here is that first it's necessary to get to grips with the B12 issue as his B12 was so low in the first place. Thank you for your information on how it has worked for you, it's very encouraging and I hope you continue to do well Susan.

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Hi,

"Also as he not anaemic they tend to think you can't be low in B12"

Think following links/articles all say patients with b12 deficiency do not always have anaemia.

stichtingb12tekort.nl/weten...

stichtingb12tekort.nl/weten...

healthunlocked.com/pasoc/po... See Summary document (last link in list)

Perhaps GP would like extracts/copies?

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