Pernicious Anaemia Society
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Very high homocysteine shown on private blood test denied by GP! Scared but vindicated 😤

So ...after many years of symptoms, a massive decline after general anaesthetic 9 weeks ago,a family history of PA, being diagnosed with numerous things....ME, tri geminal neuralgia, functional neurological disorder, anxiety, depression, heart damaged by radiotherapy in the past etc etc.....

FINALLY I got some news!!!! I chose to have a private homocysteine blood test ( GP refused..he doesn't believe me as pre op B12 was 402 and Intrinsic factor was 1) and it came back as high (19) bordering VERY high! And what is the suggested treatment ? B12 supplements !!! I am shocked and disgusted I had to persue this avenue myself as it means I am high risk for heart disease, alzheimers, stroke etc now. 😨

Thank heavens I took the decision to SI 12 days ago! I feel some slight improvement already.

I rang my GP straight away and said I wanted lipid testing immediately. .to which he agreed, I wanted them to fund my treatment, I wanted an apology and I would be putting it all in writing over the weekend.He also said he didn't know anything about homocysteine at all ! (Nor did I mate until I was forced to do some research) He has agreed to a meeting next week after he and his partners and the practice manager have "digested" the letter!

I am scared now to be honest that I have such a high risk of coronary artery disease and stroke, and hope the SI will quickly bring it down😯

Not to mention all the vast host of other symptoms I have. I'm so relieved to have a piece of paper that vindicates me....but so so hurt and angry at the label that's been given me over the last few years. Only 2 weeks ago the same GP told the practice nurse I have an "acute anxiety syndrome " What the heck ???

Sorry for the long rant ! It's 4 am here and I'm so cross I can't sleep ! I don't know where or how to begin my letter to the doctors .I feel vindicated, a sense of triumph, but an over whelming sense of sheer frustration at the events of the last 3 years and the detective work it's taken me to get to this point. I truly believe that if I hadn't made the decision to SI, I was going to die. I'm not being melodramatic, it has been that bad😩

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WOW, just WOW! I am thrilled for you. As you may know I am on the other side of the world, in New Zealand, and just want to give you a great big hug. And had to send a message as most of your fellow Brits will be asleep! Take lots of deep breaths, pat yourself on the back. The last thing you can do now is cark it from the frustration etc! And don't rush the letter. It needs to be very considered etc.

I must go now but today I have been researching lots of things including homocysteine so will think about links etc that might be useful.

I am sure the UK experts will be right here with good suggestions once they wake up!

Relax, and sleep. You deserve it.

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Wow! Thank you so much x

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That sounds like huge progress. I too had raised Homocysteine way back - but now around 7. B12 is one part of the treatment - and a good B complex too I have read. Higher Nature do a product for helping too - called TCM or something similar - sorry in a rush and cannot access their website here in Greece :-(

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Hi Jesswoozer1 well done for your perseverance.

I'm not medically trained but I think the following explains things quite simply.

"B12 has two main jobs in the cell - one of them uses up a chemical called methylmalonic acid (MMA) the other uses up homocysteine (hCys). If the B12 isn't getting from the blood to the right places in the cell then one, or both, of these chemicals will not be used up and the amounts in the cell (and in the blood) will increase.

So a blood test for MMA and/or hCys can tell if the B12 is doing what it's supposed to be doing. If the levels of the two chemicals are normal then B12 is working properly. If the levels are raised then one explanation is that B12 isn't working properly (there are other possibilities - MMA can increase because of kidney disease, hCys can increase if folate is low).

"

I see my friend Folate is mentioned emphasising the need for it to be at a good level.

I hope all goes well at your surgery and you get the treatment you need and deserve,

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Thank you so much...that's very helpful!

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Hi Jesswoozer1,

"a massive decline after general anaesthetic 9 weeks ago"

Did you have nitrous oxide as part of the anaesthesia? Nitrous oxide is one of the gases in "gas and air" mix.

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

ncbi.nlm.nih.gov/pubmed/825...

martynhooper.com/2015/08/22...

There are stories in Book "Could it Be b12?" by Sally Pacholok and JJ. Stuart about effects of nitrous oxide and I think in one of Martyn Hooper's books, can't remember if it's

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" or

"Living with Pernicious Anaemia and Vitamin B12 Deficiency"

There are other drugs that can interfere with B12 levels and folate levels.

b12deficiency.info/what-are...

mybwmc.org/library/33/000717

"I don't know where or how to begin my letter to the doctors "

Link below about writing to GPs about b12 deficiency ....person who runs website can be contacted by e-mail.

b12deficiency.info/b12-writ...

Have you considered contacting PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

They may be able to pass on useful information. In some cases PAS can intervene by writing letters on behalf of PAS members. Think it is easier for them to help people who have a definite diagnosis of PA.

PAS membership

Some people on forum join PAS. There are now several local PAS support groups in UK which can be a source of info on helpful GPs etc.

pernicious-anaemia-society....

pernicious-anaemia-society....

Who gets PA and B12 deficiency?

Is GP aware of your family history of PA?

pernicious-anaemia-society....

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

Other b12 info

1) Pinned posts on this forum. I found fbirder 's summary of mainly UK b12 documents useful. Link to his summary in third pinned post.

2) BSH Cobalamin and Folate Guidelines

I'd strongly recommend reading the whole of this document before your next appt.

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

stichtingb12tekort.nl/weten...

Flowchart above makes it clear that In UK, people who are symptomatic for B12 deficiency , should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. This applies whether b12 is low or within range. IFA test is not always reliable and it is possible to still have PA even with a negative IFA result.

Are you symptomatic for B12 deficiency? I gave my GPs a copy of PAS checklist with all my symptoms ticked.

pernicious-anaemia-society.... see checklist

b12deficiency.info/signs-an...

B12 Deficiency Info website has lots of b12 info and an interesting blog.

b12d.org/admin/healthcheck/...

BSH Flowchart mentions Antibody Negative Pernicious Anaemia (PA where IFA test is negative. My experience has been that there are some doctors in UK who are unaware of the possibility of Antibody Negative PA.

Martyn Hooper, the chair of the PAS tested negative on IFA test more than once before finally testing positive. His story is on his blog.

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

3) BMJ B12 article

bmj.com/content/349/bmj.g5226

4) BNF (British National Formulary) Chapter 9 Section 1.2

All UK GPs will have access to BNF. There is probably a copy of it on their desk or bookshelf.

evidence.nhs.uk/formulary/b...

Details of UK B12 treatment can also be found in BSH Cobalamin guidelines.

"pre op B12 was 402 and Intrinsic factor was 1"

Were you taking B12 supplements prior to IFA test? This link mentions that testing IFA close to a B12 injection may affect results.

labtestsonline.org/understa...

I think it's vital that you are well -informed about B12 as sadly there are GPs/specialists out there who are not as well informed as they could be about b12 deficiency.

"being diagnosed with numerous things....ME, tri geminal neuralgia, functional neurological disorder, anxiety, depression, heart damaged by radiotherapy in the past etc etc....."

B12 deficiency can be misdiagnosed as a variety of conditions. I sighed with exasperation when I read your list ....recognising several things I had been diagnosed with in past.

b12deficiency.info/misdiagn...

martynhooper.com/2015/08/04...

"Very high homocysteine"

Have your doctors looked into testing MTHFR gene mutations?

labtestsonline.org.uk/under...

Unhappy with treatment?

The most important thing I learned .....

from years of trying to find out what was wrong was to always get copies of my blood test results. I learnt to do this after being told everything was normal face to face, or over the phone and then finding some abnormal or borderline results on the copies. In relation to B12, I look particularly at B12, folate, ferritin and full blood count (FBC).

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

There can be useful clues on FBC as to whether iron deficiency, folate deficiency or B12 deficiency are possibilities. Low iron can lead to small red blood cells (microcytosis). Low B12 and/or low folate can lead to enlarged red blood cells (macrocytosis). A person with both low iron and low B12/low folate may appear to have a normal MCV (mean cellular volume) on FBC because effects of low iron on red blood cells can mask effect of low B12/low folate.

A blood film may show both microcytic and macrocytic cells in someone with both low iron and low B12 and/or low folate.

labtestsonline.org.uk/under...

Folate deficiency

I have read that if a person has a folate deficiency , it is very important to make sure any co-existing b12 deficiency is also treated. See Management section in next link.

patient.info/doctor/folate-...

Some people on the forum get a complete set of their medical records. Although some surgeries offer online access to a summary record, it is a summary and may not have all medical info required.

Access to UK medical records

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

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

CAB (Citizens' Advice Bureau)

citizensadvice.org.uk/healt...

HDA patient care trust

A UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

I am not a medic just a person who has spent years trying to find out what is wrong with me.

"so hurt and angry at the label that's been given me"

I truly empathise as have gone through similar feelings so virtual hugs from me.

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Thank you so so much for all these valuable links! Putting them all together for me when I am so brain fogged has helped no end! I have actually got the outline of my letter together now and printed off various documents to support my point.

I am a member of the PAS and also have Martyn Hooper's book " What you need to know about PA and Vitamin B12 deficiency". Both of which have also been invaluable! Thank you for your support :)

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Well done! I hope you are feeling better soon. When I told my GP I had high homocysteine he told me to eat less meat!

I have since discovered that one of my genes means the cycle described above does not work very well, resulting in high homocysteine. I am now taking Betaine (Trimethylglycine - TMG), also mentioned in a post. I also have B12 injections. Waiting for next set of tests to see if homocysteine has lowered. As you have family problems with B12, could it be genetics?

Mary

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My dad has PA and my aunt died of it many years ago I gather :(

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I am so pleased for you . I had the same re Homocysteine . I had a reading of 14,, which I brought down to 7 after a few weeks of self- injecting .( I had to pay for the injections myself ) I continue to self inject regularly but some symptoms still linger . But I feel so very much better .

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Thank you! Ive been SI for 2 weeks now alternate days x

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Great ! Isn't it MARVELLOUS that we have this forum? I don't know where I would be without it ! But I worry about the people with PA ,who can't afford to have Internet etc. They are totally at the mercy of the NHS !

Best wishes to you .

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Or people who have no advocate if they are too poorly, frail to undertake the battle themselves 😟

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Yes. When you are feeling so ill and confused with PA symptoms you have no strength to stand up for yourself .

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Oh my word, how glad am I to be part of this forum !

Sleepybunny, the invaluable info is of great comfort and gives me strength and courage to ask for what I need. A little persuasion with assertiveness rather than aggressiveness often works best for me but when I’m met with “no everything is fine, all within normal range” I want to explode !

Yes, I agree always ask for blood results print out ! My GP even handed me a copy of the Pathology report on the brain biopsy 3 years ago.... “this is of more use to you than me”..... I mean what do you say to that !!!

Story so far - dx PA after Parietal Cell positive antibodies with my own research and insistence I might add. No IF test done ...... “not necessary since PC test positive” ......... Family history of Stomach cancer yet Endoscopy deemed unnecessary. Have also been treated for hpylori btw which set me on the detective trail ! I have won the war with the B12 injections though - once a week and just about tolerable ! Folate and Ferritn tests dismissed as ....”ok, within range” .......My copy showed borderline 😠

Refusal then also given for Homocysteine test yet strong family history of Hypothyroidism (3 siblings and Mother) Also strong family history of heart disease and stroke.

I’ve also had a lacunar stroke and two grand mal (Tonic Clonic) seizures, brain tumour related.

Back to the Hashi - Endo refused to give title as “Hypo really much the same as Hashi - to be expected, you’ve had Hypo for 34 years” ........Where do these guys train ??? Further private tests and ultrasound revealed left side of Thyroid completely atrophied and right side several suspicious nodules. Two FNAs later (fine needle aspirations aka as biopsies) revealed nothing sinister so....”that’s you done we don’t need to see you again” .... 😩 Really !

Now, I’m having Neuro surgery again in two weeks time and really want to create a good chance of recovery for optimum health, given all the co-morbidities......I’ve also got Asthma, Bronchiectasis and a PFO (Paten Foramen Ovale -small hole in the heart) I’m far from hypochondriacal and usually adopt a pragmatic approach. I still run a 40 year old business and do try to stay on top of things.

I’ve also got Bakers cysts (more inflammatory stuff going on) ...”oh they’ll probably just go away on their own” .....ah sure that’s ok then !

I’m clearly loaded with antibodies and inflammation all conspiring to compromise my health. All this in the face of major surgery, it’s not good.

Can any clever member suggest the right, rather than random, vitamin supplements ? I’ve read B complex is a good bet ! I’m gluten free, dairy free and almost sugar free.

All this research is rewarding but exhausting - I’m sure you’ll all agree.

Susanmac

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Hi CCSP-27 ,

"when I’m met with “no everything is fine, all within normal range” I want to explode !"

I understand..I used to think, "Well, I'm not fine or normal so keep doing the detective work".

I'm sure I was labelled as a depressed hypochondriac and written off.

Only by my own detective work did I eventually find that B12 was part of the problem. Having to do the medical detective work myself is what really hurt me emotionally...I found it hard to come to terms with the fact that the GPs seemed unwilling or unable to keep searching for reasons for my ill-health. One GP was shocked when they realised it was just me behind the big effort.

That really hurt..the fact they were shocked someone would try to find out why they had multiple symptoms affecting multiple body systems and that their patient was unwilling to accept their "it's depression" or "it's CFS" diagnoses.

It might be better to put some of this info in a new thread as responses to old threads (this thread is a year old) can get missed by other forum members.

"I’m clearly loaded with antibodies and inflammation "

I've read several stories in recent weeks about the links between gut biome (bacteria etc in gut) and auto-immune disease. Have you looked into this? I've also come across articles on Auto-immune Protocol Diet.

"Folate and Ferritn tests dismissed as ....”ok, within range” .......My copy showed borderline "

Surely a person with b12 issues needs to have good levels of folate and iron as I think the way they work in the body is interlinked.

Good luck with finding answers.

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Appointment with GP Friday past. Very very poor communication!

Suggested I go privately for the Homoscytien blood test......so that’s just what I’m going to do !

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Sad (but not surprised due to personal experience) to hear GP had poor communication.

"Suggested I go privately for the Homoscytien"

Homocysteine results are likely to be affected if you are supplementing B12.

b12deficiency.info/b12-test...

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.....and me with a strong family history of cardiovascular disease ! Tbh I’m disgusted ! This is only one of my health problems - I’m now facing Neurosurgery so there’s much worse to come.

My best friend whom I speak to every morning in her car on her way to work reminded me of her Trigéminal Neuralgia which she developed last year out of blue ! Her GP went to the trouble of learning about and researched it simply in order to understand and help her !

Time for me to change GP ???

On parting last week he said come back and let us know how you get on !!! My reply .... “there’s no need, you’ll get a copy of it all anyway” I closed the door.

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"me with a strong family history of cardiovascular disease"

Have you looked into MTHFR gene mutations? Some may be associated with high homocysteine levels.

labtestsonline.org.uk/tests...

viapath.co.uk/our-tests/mth...

There is some unreliable MTHFR info on internet so stick to reliable websites.

Blog post about B12 deficiency and heart disease. It's a sad story.

b12deficiency.info/blog/201...

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I can't believe I logged on to find this at the top of tonight's posts!

I returned home today from a GP appointment with results from a MTHFR test (I requested after finding information here and other sites - GP never thought to do it, despite history of B12 deficiency and months of dizziness, etc.) (results were combined C677T and A2198C) and homocysteine test results (9.6 - should be no higher than 8).

My GP admitted this is all now out of her scope of speciality, and has referred me to a haematologist. Disappointingly though, when I asked if I should continue taking folic acid (I'd confirmed with her I should start taking just over a week ago despite not knowing my current level), she said, yes, of course! It won't do any harm (!!!???). Well, it has. Earlier subcutaneous injections over the previous six weeks hadn't been helping, so I'd upped the frequency, and have been self injecting IM B12 every day this past week and still had dizziness, etc. I complained to her about the ongoing symptoms, while pretending to not notice her scowl at me when I told her about the frequency, and out came the anxiety/depression list for me to fill out. Offers of anti-depressant medications were made! Appointments with psychologists were offered!? I sat there and thought, I really think this woman believes I'm making this shit up!

Fortunately, I'd forgotten to take my tablets before leaving for my appointment, and so hadn't taken a folic acid for 24 hours and, by the time I came home, had lunch, and went to wait the usual two hours after eating to take it, I had researched information about the MTHFR gene and how folic acid is the worst thing for it! So, I didn't take it. And what's happened? No dizziness for the past nine hours. I'm touching wood but hoping that unfortunate mixture of events from a week ago, and the fortunate ones from today have played a part in me finally getting somewhere (still touching wood).

I'll post this separately tomorrow in case it helps someone else who just starts taking folic acid (on doctor's advice or not) on the off-chance there might be more going on.

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