Its a "No go" with the GP: Hey everyone... - Pernicious Anaemi...

Pernicious Anaemia Society

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Its a "No go" with the GP

Itsallshit21
Itsallshit21

Hey everyone

Hope you're all feeling a bit more positive with the lovely weather we're having and the news about the "road map"

I've finally had a telephone conversation with a GP this morning. His responses are : you dont need to increase your levothyroxine because your levels, according to the lab we use, are in range. If you increase you will have a tendency to over medicate which can cause oat and therefore more complications.

Your B12 is absolutely fine, dont need to supplement and neither do you need to add Vit D.

What you do need to look at is the possibility of you contracting type 2 diabetes, so you need to exercise, change your diet etc and then the tiredness and everything else will even itself out !!!!!!

29 Replies

Your B12 levels are in a grey area.

Download this guide from Hull and East Yorkshire NHS. hey.nhs.uk/wp/wp-content/up...

You can see that they use the same 'normal' range as your doctor (115-1000 pmol/L). But if you look at Figure 1 you can see that somebody with a B12 of 124 pmol/L and a strong suspicion of a deficiency should be started on a course of B12 injections.

Itsallshit21
Itsallshit21 in reply to fbirder

Thank you fbirder. He wasn't having any of it, I felt that he wasn't happy that I had done my own research and questioned the readings. When I questioned that my B12 was on the low side, he became quite exasperated and point blank said .....you do not need B12 supplements at all as you are well in range! Ive decided to take a B12 and Vit D supplement anyway as its not going to do me any harm.

They absolutely hate when you call them out. I once was kicked out of a clinic for it. All I was wanting was someone to understand what I was telling them. Not that guy! I gladly left. Too many practice by text book and don’t actually listen to what the patient is telling them or the list of symptoms being explained. Glad you are taking it into your own hands.

fbirder
fbirder in reply to Plucky11966

I have found they're willing to listen if I present them with proper scientific papers. I can understand why they get fed up with people presenting them with stuff from clickbait nonsensical websites about how wombat poo can fix ingrown toenails, and can they get it on the NHS.

I'll never forget the look on my GPs face when I presented him with a paper from the BMJ about the treatment of B12 deficiency. That's when he really started to listen to me.

Itsallshit21
Itsallshit21 in reply to fbirder

Haha...love it 😀 problem with our GPs now is, you can't actually get to see them, its all telephone consultations! Since they amalgamated with other practices in the area couple or so years ago, they have got worse and 98% of the gps are new. I have been with the same practice for over 50 years and it used to be brilliant, no longer the case. I have read some info sleepybunny sent me and its interesting to see that B12 deficiency could have an impact on mental health. I had very bad post natal depression, then in 2019 I had a mental health breakdown and take 75mg x 2 daily of venlafaxine, prior to that, for 6 years I was taking citalopram.

I'm going to supplement B12 myself, how is another challenge, im also going to exercise more and look and scrutinise my diet and see how I feel in a couple of months 😊

Plucky11966
Plucky11966 in reply to fbirder

Lol! I got that look of “wow I can’t believe you are aware of that...how did you know?” I love my internal med doc. He was the one who was willing to listen. Even though I showed my admitting physician when I was in hospital that one injection made me feel like an already slightly different person, I got told that it doesn’t work that quickly and there is no way it’s the b12. I had to beg them for 2 days to just check it my level. 🤦‍♀️ That from the chief of endocrinology. He wanted to do nothing but shove anxiety meds down my throat after a 4 night stay in hospital after not being able to find anything wrong with me. I had every test under the sun....well almost. No thank you. I went home and got my supplies and have never felt better. I can’t understand why they are so against listening when you have shown improvement after starting injections.

I had that scathing look when told I felt better really quickly. ‘Well if that’s the case, go get some tablets, it’s just a placebo!’ Hmm been taking the tablets for 12 months and although bloods showed an increase, the rest of me didn’t. I now SI but worry about the time when I’m ‘more’ elderly and will be unable to do so. If there was a virtual way of GP’s being able to feel the way you do when low on B12 it should be mandatory for them.

Hi,

I've included a lot of info in this reply so you might want to read it over a few days.

Have you considered writing a brief letter expressing your concerns to your GP?

Unhappy with Treatment (UK info)?

1) Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with

neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.

The link above has letter templates that people can base their own letters on.

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, may be worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

I included a request in letters that a copy of 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.

Keep copies of any letters sent or received.

2) CAB NHS Complaints

citizensadvice.org.uk/healt...

3) May be worth talking to local MP/devolved representative if struggling to get recommended level of treatment.

If PA (Pernicious Anaemia) is a possibility, worth joining PAS who can offer support and info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

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

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

PAS website has useful articles that PAS members can print off and pass to GPs.

pernicious-anaemia-society....

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Document above has useful diagnostic flowcharts.

There is a summary of the above document on PAS website.

pernicious-anaemia-society....

See the Key Recommendations in above link.

It suggests that patients who are symptomatic for B12 deficiency should be treated even if their serum B12 is normal range to avoid neurological damage.

Perhaps your GP would like a copy?

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

NICE CKS link about B12 and Folate Deficiency

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

Guidelines below suggest testing anyone with unexplained B12, folate or iron deficiency for coeliac disease.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Are you symptomatic for B12 deficiency?

Have you got any neuro symptoms?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

NICE CKS list of Symptoms of B12 and Folate Deficiency

cks.nice.org.uk/topics/anae...

GP may be more likely to take note of above list.

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Blood Tests

Have you got actual results for your B12, folate, ferritin or other iron results, full blood count?

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-...

Iron Studies

labtestsonline.org.uk/tests...

Auto immune conditions

If your thyroid issues are due to an auto immune condition, I would have thought the GP would be considering the possibility of auto immune conditions such as PA and Coeliac disease if you are showing symptoms typical of B12 deficiency.

Having an auto immune condition can increase the chances of another one developing.

Neurological Consequences of B12 Deficiency

Vital to get adequate treatment for B12 deficiency. Being untreated or under treated for B12 deficiency increases the risk of permanent neurological damage.

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

GPs and specialists can have misconceptions about B12.

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Misconceptions about a B12 deficiency

English article from Dutch B12 website.

stichtingb12tekort.nl/engli...

Units and reference ranges may vary from those in UK.

Local Guidelines

It's possible that your GP is being constrained by local guidelines.

Each CCG/Health Board/NHS Hospital Trust will have their own local guidelines on treatment and diagnosis of B12 deficiency.

I suggest you track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links.

I hope you are not in the area discussed in the blog post below.

b12deficiency.info/blog/202...

Useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in this book is out of date. See BNF Hydroxycobalamin link in this reply for up to date info.

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

Very comprehensive with lots of case studies.

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained if you ask questions and challenge them, and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

3) Best piece of advice I ever got was to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

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

patients-association.org.uk...

I've written some very detailed replies with more B12 info causes of b12 deficiency, more 12 books, more B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

See links below.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Oh my days, thank you for all this mind boggling information, its very much appreciated. Like you say, I think il come back to it tomorrow as il be up all night 😊

Your points on letter writing are so good! Concise, valid and to the point.

Everything else is superb too.

Good morning Sleepybunny, I have started reading your report on letter writing and its interesting to see that B12 deficiency has an impact on mental health. In 2019, I had a mental health breakdown and take venlafaxine 75mg x 2 daily, during that time, B12 deficiency was never once mentioned. At the present time, im struggling with my mental health again, lockdown, weather, living arrangements, diet and so on and I'm not in a good place to go battling with GPs. What I am going to do is, supplement B12 myself, how or where I'm going to start is my next challenge. I'm going to try to exercise more and scrutinise my diet and see how I feel in a couple of months. I am still going to read all the information you have kindly sent me, so that, in the future, I will be armed to go into battle .........thank you so much 😊

I am not in the Gloustershire area, im in East Yorkshire, but I still think its a postcode lottery and as our general practice amalgamated with other practices in the area a couple or so years ago and what with the pandemic, it is nigh on impossible to see a Dr, its all telephone consultations, and I would say 98% of the doctors are new !!!

Serum vitamin B12 .......124 pmol/L (115-1000pmol/L)

Serum ferritin .................165 ug/L

Serum folate ....................7.2 ug/L with a post note underneath saying: "serum folate values <3ug/L suggest deficiency. For local guidance on use of B12 & folate please see tinyurl.com/yaz9awxk"

fbirder
fbirder in reply to Itsallshit21

Write a letter. Include a copy of the Hull and East Yorkshire NHS guideline - hey.nhs.uk/wp/wp-content/up...

As why your GP is ignoring those guidelines.

Send copies to the Practice manager, your local MP, local press, radio and TV.

Exasperating Is there another Gp in your practice?

There are loads if GP's in the practice below Nackapan, they amalgamated with other practices in 2019. Ive been with this practice for over 50 years and the doctors were brilliant, not anymore !!!

I went through 6 at .y practice. The senior partner being the worst. He actually said even with a double appointment .

Far too complex too many symptoms to address in a consultation.

Rude , abrupt and was just searching for a drud to send me off with.

I think at that stage as working through them I came over as anxious as trying to convey the symptoms in a orderly manner in a set time. I am articulate.

Am detailed.

He didnt listen.

When he started to question my b12 prescription I just shut up . Defeated and tearful with no intention of getting the antidepressants.

The Gp I settle with listens.

Admits shes out of her depth.

Offers drugs all the time but doesnt 'throw her toys out of the pram' kf I dont take them.

She tries to treat symptoms

Has done the requested referral.

She is learning from me.

Not great but honest.

The main thing is she listens.

All gps have an agenda to get you on a drug. They tap onto the computer symptoms a d it lists possible drugs.

Clinical skills are being lost.

The system they have tk work within give impossible time constraints.

Try and find one yih csn communicate with and see the same one.

Continuity has been lost.

So important as first impressions can be so wrong.

That goes both ways.

It goes without saying alot to deal with when ill.

I'm having the same problem with nurses at present.

Different one every time.

Ladt visit when j cal.ky asked for the fluorescent lights to be turned off . Something g that was done when we had regular staff

She muttered

'Cant see a b.. thing

I calmly said if I can sit down I will close my eyes so you can put the light on.

Could she just tell me what brand shes injecting.

She replied it's all the same . The surgery uses the same one.

They actually uses 4 sorts . I avoid one.

She said j was early again and she coukdnt dk it.

I pointed out I'm prescribed 2 weekly .

She then said noone had them 2 weekly

I cry suggested she read the notes.

Another nurses had mocked up the notes saying 6

weekly.

It was 6 weeks since an IM

All of this with a mask on

Steamed up glasses.

Then the injection hurt.

She told me she was leaving tk work in A and E

All very difficult.

Hope you get through and find one at least you can build up a rapport with.

More job satisfaction.

More patient satisfaction

Morning Nackapan, problem with our practice now and I believe most practices is, you have to have a telephone consultation and I only know two doctors in the practice who have been there for some time, one is so stuck up her own backside she is just rude and unpleasant to deal with and the other is never on the telephone list !!! I'm not in a good place to start battling with them at the mo, so I'm simply going to supplement B12, where to start with that is another challenge, exercise more and look at my diet, then see how I feel in a couple of months 😊

Yes . Try not to over do it though. I did in anger once at the Gps not understanding I was not la,y just too ill fatigued to do more! I ended up in bed for 5 days with vile head pains +++

I also kept a food diary.

Reported back.

Oh...was my answer.

So do whatever you csn on your own terms and try and sit in the sun.

I get so despondent when I read these posts. I hope you get the help you need. As an aside, I do have type 2 diabetes, high blood pressure and high cholesterol, I've been skinny, eaten healthy and exercised my whole life but it's done 'diddly squat' for me and I'm convinced there's a link between low B12 and high blood pressure as mine went out of control before diagnosis. I just wish more medical professionals took a special interest in pa and B12 deficiency. Good luck ♥️

Thank you karenhath009, im going to supplement B12 but have no idea where to start, so there's another challenge! I'm not in a good place to start fighting with GPs ....so I'm going to try this first, get some more exercise and start looking after myself better and see how I feel in a month 😊

Yes, sounds futile. Good plan....make the most of this beautiful weather. Sending positive vibes to you ♥️

Thank you, thats very kind. Have a good weekend 😊

Yes I agree My cholesterol is high now too.

I. Slim and used to be able to be very active

I'm a restless sort of person anyhow .

This condition has alot more aspects that are not understood.

Totally agree. I was reading something the other day about cortisol causing several diseases and B12 & folic acid being researched as a therapeutic treatment for them. It's quite fascinating really. Hope you're well x

Hi again,

"and its interesting to see that B12 deficiency has an impact on mental health. "

Some links about B12 deficiency and mental health

(Some of these may have details that some find upsetting)

b12deficiency.info/b12-and-...

stichtingb12tekort.nl/engli...

martynhooper.com/2017/01/22...

martynhooper.com/2016/08/19...

PAS members can access a leaflet about PA and Mental Health

pernicious-anaemia-society....

Mental Health Symptoms are mentioned in these symptoms lists and B12 books.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

NICE CKS Symptoms of B12 and Folate deficiency

cks.nice.org.uk/topics/anae...

B12 books I found useful

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

"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.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Films about B12 deficiency

b12deficiency.info/films/

Good evening Sleepybunny

I have just read the first link. I suffer with approx 75% of the symptoms !! Also 37 years ago after having my daughter (my anxiety actually started during pregnancy) I had terrible post natal depression, 4 years later I collapsed at work and taken to hospital where I was diagnosed with "nervous exhaustion". No treatment was given, just told to rest. The depression and anxiety never really left me but it carried on untreated until I lost my Dad in 2013, 15 months later I lost my husband. The mental health breakdown in 2019 was around the loss of my husband as each day of that year mirrored the 7 months of which he was ill, I wanted to end it all!!!

Hopefully, by taking a B12 supplement, my mental and physical health will improve, I can only hope 🙏 problem i have now is, which B12 do I take, I've been looking this afternoon and I don't have a clue 😀

Hi,

"Also 37 years ago after having my daughter (my anxiety actually started during pregnancy) I had terrible post natal depression"

Sorry to read you had such a hard time years ago.

I had post natal depression after childbirth and suspect that I was probably low in b12 at the time.

These days I tell those who are expecting to keep an eye on all their blood test results.

It never entered my mind years ago that GPs might not tell me if a result was low or borderline.

Did you by any chance use gas and air mix for pain relief during childbirth?

Gas and air mix contains nitrous oxide which inactivates B12 in the body.

I had a very prolonged labour and used gas and air a lot.

No-one warned me then or prior to the birth that it could have an effect on B12 in the body.

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

For anyone else reading this thread, if you suspect you may have had low B12 around the time of childbirth, maternal and birth records are kept until the youngest child is 25 in UK so it may be possible to find out years after the birth.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

NHS Pain Relief in Labour page says that there are no harmful side effects of nitrous oxide on those who have given birth or on the babies.

nhs.uk/pregnancy/labour-and...

There is no mention on the page of the potential for problems in those patients with low levels of B12. Prolonged exposure to nitrous oxide can cause issues for those with normal range B12 levels as well.

Articles below may have some upsetting details

Nitrous Oxide induced SACD

jneuro.com/neurology-neuros...

rcpjournals.org/content/cli...

pubmed.ncbi.nlm.nih.gov/217...

B12 and Pregnancy

(Some of the details in this article may be upsetting)

b12deficiency.info/b12-and-...

Links to blog posts about Midwives and B12 deficiency

midwifediaries.com/vitamin-...

Hi Sleepybunny

I did have gas and air during labour.

I was admitted to hospital a week before I had my daughter as I had (what I know now as) pre-eclampsia. They told me my child was HUGE (in fact, one dr had 10 students round my bed and informed them that I was the lady who was having an elephant!!!) and I would have to be induced, which I was, she weighed 8.8lbs. During the birth, I heamorrhaged and my blood pressure plummeted, I had to be checked every half hr and had to have several blood transfusions.

Whatever you chooses to try have it 3 times a day as you may absorb more. I tried loads but didnt absorb it 50mcg up to 1000mcg

In your situation worth a try but if your symptoms persist do try again to get injections .

T c

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