Pernicious Anaemia Society
14,147 members10,147 posts

Private blood test results - GP app booked, what can I say?

Private blood test results - GP app booked, what can I say?

Hi everyone,

I was going add onto my previous post, but I can’t seem to find it.

I recently had a B12 test at the GP’s, it was low but still in the ‘normal range’. I decided to get a private test and I’ve just received the results. These show me as below ‘normal’. I have an appointment already booked with my GP on Monday, so I will take the results and the really informative report that was written.

My concern is that my GP didn’t want to listen to me regarding Vit B12, and totally discounted PA. Instead, he halved my dose of anti-depressant (no bad thing, I’ve been on them for 8 years and I’ve not felt any negative effect from this) and wants to send me for a brain scan.

I’m not sure what I need to say to him really, so wondered if you could please give me some idea as to where to start. He’s a really nice GP, so I don’t want to upset him with ‘going behind his back’ but obviously I have.

If you have a few minutes to spare to give me any ideas I would be very grateful,

Many thanks

Katie

Ps. When I reply to someone, how do I tag them into the reply?

49 Replies
oldestnewest

Is this the previous post that you meant? healthunlocked.com/pasoc/po...

Did the Medichecks' doctor report give some useful guidance?

How to tag someone: support.healthunlocked.com/...

Always useful to do that even when you use the green reply button.

2 likes
Reply

HI ITYFIALMCTT, brilliant, thank you!

Yes, that was the post. Is it best to start a new post or carry on with the previous?

Yes, the medicheck report said I need to get the Intrinsic Factor Antibodies test, not sure whether to order from them or whether to see if my GP will order it?

Do you think this looks like my GP should start to take this seriously? I just can’t bear the thought that he might treat me the way he did before and send me away with a flea in my ear.

When the results came through tonight I actually cried with relief as I thought ‘gah, see, I’m not making this up’.

Huge thanks for replying, Katie

Reply

You might want to leave a link to this new post there but a new post is a good idea and I hope you obtain more comments.

To make the obvious enquiries, you're neither a longstanding vegan nor vegetarian?

I'd hope that your GP will take the Medichecks' report and suggestion that you need further investigation such as IFA testing or even a rule out for Coeliac's Disease or H Pylori, seriously.

I can think of no reason at all as to why your GP would discount these striking results. Your GP might double-check with you to confirm that you weren't taking biotin or anything else that might interfere with your test results (this varies with the assays used in some testing labs) but otherwise your results are so clear that they are a strong call to action.

I'm only sorry that you need to wait until Monday to chat with your GP and that you had to resort to private testing. I don't know if more experienced people might advise you to ask to speak to a GP tomorrow to discuss these results as it looks like you need to start loading doses as soon as practical. Can you speak to a receptionist to request a call back and email the results to them so the GP can see the results and the Medichecks' doctor's comments?

Reply

Thank you ITYFIALMCTT,

I am a meat eater, with a good diet.

I haven’t been taking anything other than the antidepressant, which he prescribes, so I don’t think there’s anything that would be skewing the results.

I think I’ll call the drs today, as I’ve realised my GP appointment isn’t until 6pm on Monday, and I teach all day Tuesday and Wednesdays.

Thank you so much for your supportive words, I’ll cross my fingers in the hope that they listen.

Reply

Maybe tell the receptionist that the Medichecks' doctor has written some strong recommendations and it sounds like something you need to discuss today. Your B12 level is *so* low, that in the absence of a major contraindication, it would be essential for treatment to start as soon as practical.

1 like
Reply

Thank you ITYFIALMCTT , I'll give them a call now. Gah, I'm panicking at the thought!

Reply

Please let us know if you are scheduled for a callback - you have some useful material to quote if you need it from the helpful replies you've had from several people.

Do see if you can email the results so that they're available to the GP who does the callback with you.

1 like
Reply

Thanks ITYFIALMCTT , they must be busy, I haven't managed to get through yet...

Reply

ITYFIALMCTT

I've just got through, there are no appointments available before mine at 6pm on Monday. I asked the receptionist if I could be called, she said that's something that can't be done as they're so busy.

Reply

Has the Medichecks doctor written anything strong enough that if quoted to the Practice Manager is more likely than not to get you a callback today?

Your level is *very low*.

tbh, with a level like yours, it's inevitable that the idea of even mild conflict is probably too tiring to cope with but your level is so low that I am concerned for you and feel your GP would want to be alerted to this as soon as possible.

3 likes
Reply

ITYFIALMCTT

Your words have just made me cry again. I've got to go and pick up my son (an hour round trip) in 2.5 hours, so I'm just about to go to sleep to prepare for it. I really can't fight about it today. Thank you though.

These are the notes that came with my results:

Dear Katie,

Please find our comments below regarding your test results.

Vitamin B12 Check Plus09 Nov 2017

We note that you are taking this test to investigate symptoms. You have told us that you suspect vitamin B12 deficiency. You describe feeling extreme fatigue, shortness of breath, sighing a lot, feeling itchy, tinnitus and low mood. Your appetite has decreased, you have trouble controlling your temper and you are experiencing tingling in your fingers and dry skin. Your antidepressant dose has recently been reduced as there were concerns that this may be causing your symptoms. Your thyroid was normal on recent tests. Your main concern now is whether low levels of vitamin B12 may be causing your symptoms.

Your hunch about vitamin B12 may well be correct. You have a low level of serum B12. Your active vitamin B12 is also low, this is thought to provide a better estimate of your body's long term B12 stores.I recommend checking your intrinsic factor antibodies, if these are negative then I would go on to order a gastric parietal cell antibody test. Intrinsic factor antibodies are only positive in 50-60% of people with pernicious anaemia but when they are positive it is highly likely that person has pernicious anaemia. Gastric parietal cell antibodies are increased in 95% of people with pernicious anaemia they are also increased with a wide range of other autoimmune conditions.

You are also a little anaemic, whilst this is likely to be contributed to by your B12 levels, it is not completely typical as we would normally expect to see enlarged red blood cells as well (high MCV). This could be causing fatigue and possibly dizziness and shortness of breath.

You have normal white cells.

Your platelets are reported as clumped which usually indicates difficulties in taking your sample.

Your ferritin level is normal indicating healthy iron stores.

Based on your Vitamin B12 Check Plus results we recommend that you have the following test:

- Intrinsic Factor Antibodies within 1 month

I've taken the Dr's name out for anonymity reasons.

I think I just need to wait until Monday.

2 likes
Reply

My heart goes out to you as I can't think how you're managing with a level as low as that. I'll look out for your update on how you get on with your appointment on Monday.

Reply

Hi HappyKatieA

I can't read the actual value of your Serum B12 but it's got the red star indicating attention is needed, plus the other red stars.

Yes, it would certainly appear you are B12 deficient, going by these results. However, in my experience, GPs won't take notice of these private test results. I can't explain why this is the case, as it seems so illogical, but that's how it is, so be prepared for a negative reaction from your GP but still hold on to your increased confidence as it's your GP that is getting it wrong, not you.

Somehow, GPs and hospital specialists seem to be very blinkered when it comes to recognising and treating B12 deficiency, as so many of the members (probably all) will testify, having been refused treatment in spite of clear evidence. It's shameful, perhaps negligent but true.

I suggest you do some research regarding B12 deficiency/PA. The two terms seem to be used interchangeably but, in fact, PA is auto-immune issue causing B12 def whereas B12 def is an overall term and has many causes. It's useful to determine why you are B12 def and measuring Intrinsic Factor is one of the tests which may indicate PA. Unfortunately, this test is just not reliable and one can have a positive result but not, in fact, have PA or one could have a negative result but still have PA. So, if you have this test and it comes back negative, your GP is likely to say you don't have PA (and doesn't consider B12 def either) and will likely refuse to treat.

I presume you have a list of symptoms so you still should present that to the GP. Also, check out NICE guidelines and BNF. I don't have the links to hand but if you search for SleepyBunny's posts (not sure of spelling) you should very quickly come across a load of links that are relevant.

I hope that's helpful, even if sounding a bit negative. As I've said, many/all of us on here have problems with GPs/Specialists due to their ignorance, reluctance to do some research and whatever else is stopping them.

If you do find your GP is helpful and treats you etc, then be very grateful ;)

Goodnight

JMN

1 like
Reply

JMN2017, thank you so much for your response, unfortunately, that is what I am really concerned about, my GP not taking these results seriously.

My results are as follows:

Vit B12 78 (140-724)

Active B12. 22.9 (25.10-165)

I’ve done a fair bit of research on B12d and PA already, but will do more since I’ve had these results.

I have a list of symptoms which led me to this site, and the PAS, which I joined last night.

I’ll look up Sleepybunny’s posts later on, thank you for the tip!

Gosh, one hurdle, more to go, that’s the message I seem to be getting. Thanks so much for taking time out to respond, K

Reply

Re going to your GP, I'd find a list of B12 deficiency symptoms---- if possible from an NHS site as GP can't dismiss that---- tick off all the symptoms you have. Make a copy and give that to your GP.

Search "BNF treatment of B12 deficiency " online and print that too and hand to your dr. ( BNF is the British National Formulary--- backed by NICE )

Your dr should treat your symptoms, not figures.

Mine totally dismissed my private B12 results, which did show me in range but right at the bottom. I went down the s.i. route which suited me, but your GP should treat you as s/he is instructed to do.

Good luck.

2 likes
Reply

Thank you 06hollyberry,

I've just been reading your reply, and have now printed off all of the above. I am really grateful for your responses, everyone has been so kind.

I'm physically and emotionally drained, I just don't want to have to fight, but I will.

1 like
Reply

Hi HappyKatieA

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

3 likes
Reply

Thank you so much clivealive

I have a list of the symptoms, I took them with me last time I went, he didn't even glance at them, so I think this time I might place them on his desk.

I think I'll ask my husband to come with me. I think up until last night when I received these results that even he thought I was making things up because I'm a naturally happy person and a coper. Others lean on me.

Upon reading up on everything I now realise I have been coping with this for many many years.

Reply

Thank you Eaoz for your reply,

Honestly? I could live in bed at the moment if it weren't for my two sons needing so much time and care I think I would!

I've printed off the BNF info for my doc, hopefully he'll listen this time.

Reply

Hi HappyKatieA

I think your GP will believe you!!! :)

Looking at your results again, plus the B12, you clearly have B12 deficiency. Because your results also show changes in other blood ranges, I believe your GP will order a new set of blood tests, which may, or may not, include Intrinsic Factor and Parietal Cells (I think) plus he should do antibodies for PA

Hopefully, he will also arrange for you to have B12 injection, within the next week

GP should discuss with you any reasons you may be deficient, ie diet, meds (Metformin, PPIs, other acid reducing meds, birth control pills plus others ...) If none of these apply, then it would suggest autoimmune issue, ie PA, and you will need B12 injections for the rest of your life.

Good luck and keep us informed as to how you get on. Yes, as Eaoz suggests, with B12 at only 78, it's amazing you can even type, or get out of bed to visit the GP!!! That's a very very low level.

3 likes
Reply

Thank you JMN2017,

I really hope he does, I really appreciate your positivity :-)

I don't take any other medication apart from what I mentioned above, and my diet is good, so I think there isn't an issue there.

I originally went to see him because I had concerns about Hypothyroidism, and I'm wondering if that might still be something to explore... oh my, it might be a long journey!

1 like
Reply

I couldn't read your results this morning--- takes a while for my eyes to wake up :)

78 --- I'm amazed you're still standing. Any dr who doesn't treat that immediately shouldn't be a doctor !

Good idea to take your husband with you, stand your ground.

1 like
Reply

Thank you 06hollyberry, I think the numbers may be misleading as they seem to be lower in the brackets as well. I must admit, after doing the weekly shop then a bit of googling I had a couple of good naps this afternoon, before and after school pick ups! 😂

Reply

Hi,

With a B12 result as low as 78, I think you need help urgently.

I'd urge you and your husband to read following documents asap

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK.

BNF British National Formulary Chapter 9 Section 1.2

Outlines UK B12 treatment.

UK GPs will have access to BNF

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

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

UK B12 treatment is also in BSH Cobalamin and Folate Guidelines, quarter through guidelines.

Summary of B12 documents

I'd recommend reading summary of B12 documents in third pinned post on this forum.

Copies of blood tests

I get copies of all my blood tests.

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

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

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

If you have a copy of B12 blood test result, see if there is a note on it from lab that carried out test, advising an Intrinsic Factor Antibody test be carried out.

IFA test can help diagnose PA but test is not very reliable and it is still possible to have PA even if IFA test is negative/normal range.

Blood test links

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

Neuro Consequences of PA

Untreated or under treated b12 deficiency can lead to permanent neuro damage including spinal problems.

pernicious-anaemia-society....

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

"GP didn’t want to listen to me regarding Vit B12, and totally discounted PA"

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

Might be worth joining and speaking to PAS before next appt. PAS can offer support and info about PA. PAS members can access details of PAS support groups .

pernicious-anaemia-society....

"He’s a really nice GP, so I don’t want to upset him with ‘going behind his back’ but obviously I have."

It's your health and some on forum find they have to be quite assertive as B12 deficiency is not always as well understood by doctors as it could be. I think it's a good idea to take someone with you.

Some links that may be useful

Symptoms lists

pernicious-anaemia-society.... See PAS checklist PDF on right of page. I ticked all my symptoms and gave a copy to GPs.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines. I gave a copy to my GPs.

"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 book about B12 deficiency with lots of case studies.

Unhappy with treatment?

Writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

CAB Nhs complaints

citizensadvice.org.uk/health/

HDA patient care trust

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

hdapatientcaretrust.com/

B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

Also an interesting blog about B12 deficiency on "B12 deficiency Info" website

b12deficiency.info/

I am not medically trained.

1 like
Reply

Hi Sleepybunny

I haven’t seen my GP with these results, the ones I had from the surgery a few weeks ago came up higher. I contacted my surgery today but there’s no chance to see anyone before my appointment at 6pm on Monday.

I joined the PAS last night, really informative, I’ve printed off lots of the information. I’m not sure about taking my husband with me, I’m not 💯 % sure he even gets it.

I do have copies of all of my tests, and the latest set do advise the Intrinsic Factor Antibody test, so I’m hoping my GP will do that, if not I’ll go private again.

There are discrepancies between the GP results and the private, so I’m not sure my GP will take them on board. I know that the bloods taken at my surgery were at 10am, whereas the private were taken at 7am, would that make a difference?

I’m working my way through all of the documents above, thank you,

Katie

1 like
Reply

Joining PASoc is a very helpful move.

Your results have plummeted. That said, your previous NHS results were struggling to clear the bottom of the reference range, iirc? Something like 215 for a range that started at 200-910?

1 like
Reply

Yes, you’re right ITYFIALMCTT , it was 216. The GP looked and said ‘it’s normal’ and moved on.

I need to build some ‘fight’ over the weekend I think...

Reply

ITYFIALMCTT do you think it made a difference with the time of day the blood was taken?

Reply

There will be fluctuations as there are with so many things in our bodies.

Notwithstanding this - you have an *unequivocally horrible* blood level of B12 - I can't see a GP arguing with it as it's not implausible given your previous level. Whatever your GP thinks, this has to be acted upon in some way.

1 like
Reply

There's a good report from Medichecks - once your GP has read that I'd be taken aback if there's any dispute about the need for investigation and some loading doses. I'd think that a competent GP would be grateful that this has been caught.

1 like
Reply

I’m hoping so ITYFIALMCTT , hubby and I have just been discussing what we want to happen.

1 like
Reply

Hi HappyKatieA

I agree you are wise to take your husband. If you feel he isn't 100% behind you, then perhaps he might keep quiet, in front of the GP, as just being there will change the attitude of the GP, and so serve a very useful purpose. I do hope your husband won't visibly agree with your GP as that could be disaster, I suspect

Please do take a list of all your symptoms, give this list to your doctor and ask that it be included in your notes ;)

Personally, I would suggest your GP won't accept the results of private blood tests but, if this is the case, then insist he requests further blood tests, to include Serum B12, Folate, Ferritin. I wouldn't put too much expectation on the Intrinsic Factor test as it's unreliable and, should it come back negative, your GP may well say you haven't got PA and therefore not treat you/withdraw treatment.

As you say, rest over the weekend but use the time to prepare for Monday appt. I really hope your GPs attitude is good, does all the right things and doesn't delay treatment. I would expect you to be started on injections as soon as you've had further blood tests, ie at some point during next week.

Good luck ;)

Reply

Thank you JMN2017 for your response, I’ve decided in my head that they’ll make me have another set of tests as they won’t take these results.

yes, I’ve already told hubby he’s there to make notes for me, but if I give him the nod then he needs to back me up 😉

1 like
Reply

Hi,

I think JMN2017 idea to request further blood tests Serum B12, Folate, Ferritin is good. I'd also suggest getting a full blood count (FBC) might be helpful.

In your private results,

MCV is near the top of the range 98 (range 80 - 100)

MCH is above range 34.5 ( 26 - 33.5)

Macrocytosis (enlarged red blood cells) can be associated with B12 deficiency and also with folate deficiency.

See links about blood tests in my post above for more info on macrocytosis.

Have you had a blood smear/film?

labtestsonline.org.uk/under...

"haven’t seen my GP with these results, the ones I had from the surgery a few weeks ago came up higher."

The private serum B12 test is using different units eg pmol/L. If you're in UK then it's likely that NHS serum b12 test will use ng/L

Active B12 (transcobalamin)

I note that you have had an Active B12 test and that has an asterisk by it

Active b12 22.9 ( range 25.1 -165)

I assume the lab that carried out the tests feel that the Active B12 test result is low. Have they suggested having MMA and Homocysteine tests?

I see that the comments from lab mentioned anaemia , I assume that is iron deficiency anaemia. Have they suggested having a set of iron studies tests?

labtestsonline.org.uk/under...

Low iron may lead to smaller red blood cells (microcytosis) whereas low B12/low folate may lead to enlarged red blood cells (macrocytosis). It could be that iron deficiency anaemia is masking the effects of low b12 on your red blood cells.

More info for GP

If GP needs more info then they may be interested that health professionals can join PAS for free as associate members. There is a section on PAS website for health professionals.

pernicious-anaemia-society....

I am not medically trained.

1 like
Reply

Thank you Sleepybunny , I did have an FBC done as my first test in Septmember. The results showed me at top of the level for MCV 98 (84-98), MCH 31.7 (27.5 - 32).

Do you know if it makes a difference with having bloods taken at different times of the day? The two lots I’ve had at the GP surgery, the earliest they could see me was 10 and 10.30 am, whereas the ones I did at home were at 7am, I wondered if this might be a possible reason for falling below the norm for the private tests, yet being at the bottom of the ‘normal’ spectrum for the GP tests.

Reply

Hi,

"it was 216. The GP looked and said ‘it’s normal’ and moved on. "

A B12 result of 219 might be within normal range but it still needs to be treated if a person is symptomatic for B12 deficiency...see BMJ B12 article and BSH Cobalamin and Folate Guidelines.

Your GP might respond to a request for a trial of b12 injections. GP might not realise that a significant percentage of people with B12 deficiency do not show macrocytosis...see BSH Cobalamin and Folate Guidelines for more info on this.

As I said before iron deficiency could mask macrocytosis caused by low B12.

Misconceptions about B12 deficiency

Useful english language article from Dutch B12 website

stichtingb12tekort.nl/weten...

Functional b12 deficiency

Some people have functional B12 deficiency where there is plenty of B12 in blood but it's not getting into the cells. See next link for more info on functional B12 deficiency.

b12deficiency.info/b12-writ...

Link above has a link to UK NEQAS B12 Alert which may be worth showing to GP.

I'm not a medic so can't really comment on how times of day affect test results.

B12d.org

b12d.org/

B12d.org is a UK charity that I believe some forum members have had help from.

Reply

Thank you Sleepybunny

"Your GP might respond to a request for a trial of b12 injections. GP might not realise that a significant percentage of people with B12 deficiency do not show macrocytosis...see BSH Cobalamin and Folate Guidelines for more info on this."

I think this is what hubby and I are going to aim for.

I think hubby is now realising how much I actually need to sleep. This afternoon I slept for four hours uninterrupted, he has just said to me, 'but I'm worried you won't sleep tonight'. I laughed and said 'you're joking, I wouldn't have got to tonight without sleeping'. Yesterday I slept on the sofa whilst both boys were playing and talking etc, as I just didn't have the energy to take myself upstairs.

Reply

If GP agrees to a trial of B12 injections then it might be worth keeping a symptoms diary of how symptoms change over the course of treatment as this might be considered as evidence.

Worth considering that in some individuals signs of improvement can take a long time especially if there is significant neurological involvement.

I think it's quite likely that a GP could offer a loading course of 6 B12 jabs over 2 weeks which is the standard pattern of loading doses in UK for someone without neuro symptoms. After loading , standard treatment is a jab every 3 months.

In UK, person symptomatic for B12 deficiency with neuro symptoms should have more intensive loading doses eg a loading jab every other day for as long as symptoms continue to get better ( could mean loading doses for weeks even months if improvement continues). After loading, people with neuro symptoms should have a jab every 2 months.

"I am a meat eater, with a good diet. "

Might be worth writing out a typical weekly diet as proof that you are eating a diet with plenty of B12 rich food. If GP assumes the problem is dietary you might just be offered B12 oral tablets.

If your diet is B12 rich then it increases possibility that B12 deficiency symptoms/low B12 are due to an absorption problem eg PA, Coeliac disease and there are other possibilities, see Risk factors in one of my posts above.

Have you had a test for Coeliac disease?

coeliac.org.uk/coeliac-dise...

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

In UK, two first line tests for Coeliac disease are recommended.

1) tTG IgA (tissue transglutaminase IgA)

2) Total IgA

My experience is that the second test Total IgA is not always done.

1 like
Reply

Thanks Sleepybunny

"If GP agrees to a trial of B12 injections then it might be worth keeping a symptoms diary of how symptoms change over the course of treatment as this might be considered as evidence."

Love this idea, will do it.

"I think it's quite likely that a GP could offer a loading course of 6 B12 jabs over 2 weeks which is the standard pattern of loading doses in UK for someone without neuro symptoms. After loading , standard treatment is a jab every 3 months."

I definitely have the neuro symptoms, constant ringing in my ears, tingly toes and fingers, muscle weakness, extreme fatigue, but I did say this to him before and he didn't listen, he said this wasn't due to low B12. :-(

I haven't been tested for Coeliac, I've had stomach issues for all of my adult (and my mum thinks child) life, but I just stopped eating the foods that I knew affected me, such as bread, white pasta etc.

I really am appreciative of your replies, thank you so so much. I am exhausted today, but I've decided to really arm myself for tomorrow. Hubby is under strict instructions not to speak unless he feels I am not being listened to ;-)

1 like
Reply

my b12 was at 215 and i had horrible nuero issues and was treated 6 month b12 injections, now my levels are said to be up and my symptoms are worse...? you should be treated bc of symptoms

Reply

Hi again,

"I haven't been tested for Coeliac, I've had stomach issues for all of my adult (and my mum thinks child) life ....stopped eating the foods that I knew affected me, such as bread, white pasta"

Do you eat any gluten at all? I went gluten free and was surprised by how many products have gluten in when I started trying to avoid it.

Coelaic UK recommend that a person eats plenty of gluten for several weeks before tests for Coeliac disease.

NICE guidelines on Coeliac disease (link in my post above) suggest that advise should be sought from a gastroenterologist if Coeliac disease is suspected and the patient is unwilling to start eating gluten again.

With lifelong stomach issues, have you ever had an endoscopy?

I think an endoscopy might pick up damage to gut caused by conditions such as Coeliac disease and Pernicious Anaemia.

Neuro Symptoms

" definitely have the neuro symptoms, constant ringing in my ears, tingly toes and fingers, muscle weakness, extreme fatigue, but I did say this to him before and he didn't listen,"

The fact that sadly some GPs don't appear to listen is why I think it can be useful to write concerns in a letter to GP (which should be filed with medical notes).

If a GP ignores neuro symptoms, some people on forum have included info on Neuro Consequences of B12 deficiency in letters or discussion. GP may not be aware that B12 deficiency could lead to SACD, sub acute combined degeneration of the spinal cord, if untreated or under treated.

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

Blog post that mentions SACD

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

PAS members can access a leaflet about SACD on PAS website.

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

I've given this link before but Point 1in the link is about under treatment of B12 deficiency with neuro symptoms and what to put in a letter if wishing to address this issue.

b12deficiency.info/b12-writ...

1 like
Reply

i never did gluten, I know it can be rough on the stomach. Besides a forming ulcer my endo was unremarkable.

Reply

big decline in serum b12 results, why is that i wonder?

Reply

Hi

Sleepybunny, gg317, JMN2017, ITYFIALMCTT , 06hollyberry , Eaoz , clivealive and everyone else who has been following,

I thought I’d update you with what happened at the GP surgery this evening. As I said I would, I took hubby with me for moral support.

At first, as I suspected, my GP was a little resistant to me bringing reams of paper with me. He was resistant to the idea that my symptoms were linked to B12, and then I showed him my private test. He didn’t look too pleased, but then I burst into tears and said I am not this kind of person, I hate being ill and just want to feel better. I told him that I literally slept most of the weekend and that’s not fair to my children.

My husband then stepped in and said what an energetic and lively person I usually am, and that I am so fed up of feeling ill and tired and that’s why I’ve been doing my own research, as I can’t just sit by and let it happen without trying to work out what’s wrong.

So, tomorrow I am being tested for:

•Current Vit B12 and B12 Serum

•Intrinsic Factor Antibodies

•Gastric Parietal Atrophy

•Complete Thyroid Function tests – including the antibodies test

I’ve also been signed off from work until the results come through to give me some breathing space.

He took on board the private blood test results, and the written information that came with it, and asked to keep a copy. He said he can’t issue me with B12 as a result of them, he can only work from his, but he has taken on board that there was a steep decline in the numbers, and this is why he’s retesting.

So, my advice to anyone is: Take someone with you who knows you, and will quietly but firmly back you up. Find out as much relevant information as you can, but make sure it is factual and from a medically sound and respected source, and most of all, keep plugging away at it, don’t give up.

A huge thank you to everyone who has responded, you’ve helped me tremendously, and I really appreciate your time and support.

I’ll keep you updated, Katie

3 likes
Reply

well, congrats Katie and thx for the update!

1 like
Reply

Well done for persevering HappyKatieA ... you never know that you might have helped the "next patient along" presenting the same symptoms too.

1 like
Reply

Hi,

Pleased to hear that GP is going to do blood tests.

Is GP going to also do Folate and Ferritin and Full Blood Count (FBC) tests as well? I think these are important in order to get a full picture as B12, folate and iron metabolism are interlinked.

FBC test can sometimes give clues as to whether B12 deficiency, folate deficiency or iron deficiency are possibilities. See links about Blood Tests in one of my posts above.

The emphasis in recent UK B12 articles is on treating if symptomatic rather than relying purely on blood test results. See BMJ B12 article and BSH Cobalamin and Folate Guidelines.

Local area NHS B12 guidelines

One thing to be aware of is that in some areas of UK, GPs seem to rely on local area NHS B12 guidelines rather than the BSH Cobalamin and Folate Guidelines. Some of these local area guidelines have not been updated for several years.

I did not get the treatment I expected and I found out that my UK area relied on local guidelines.

UK local NHS B12 guidelines might be found

1) Internet search using name of area/county eg "Bristol B12 guidelines"

2) Search on local NHS website, possibly under haematology

3) FOI (Freedom of Information) request to local NHS website

4) MP may be able to help.

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency".

1 like
Reply

Hi Sleepybunny

No, I had FBC about 6 weeks ago, he’s not doing them again. I took the guidlines along with me, as well as the NICE guidelines for treatment, he asked to keep hold of both 👍🏽

I’ll post a pic of the tests taken today, I can’t seem to add them here.

Reply

Sleepybunny,

I can’t seem to add a photo!

The bloods taken were:

Autoantibody screen

Intrinsic Factor Antibodies

B12

Coeliac

Hopefully it will be a quick turnaround! 🤞🏽

Reply

You may also like...