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Pernicious Anaemia Society
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Update after seeing GP, let down and confused

Hi all, sorry to be a pest but I updated my original post yesterday after seeing the GP but think it might have got lost! Anyway, here it is and any help/advice would be greatly appreciated:

Well I've been to see the GP armed with my list of symptoms and some important facts about low B12 and she totally fobbed me off! She's told me she won't treat me as I'm not anaemic and that a lot of my symptoms aren't caused by low B12 and tried to tell me I'm depressed and anxious, highly surprised she didn't just write me a prescription out there and then for antidepressants.

She said if my b12 was like 60 then she'd start treatment even though I pointed out to her numerous times that it was below their range of 190 and asked would I not feel better if was at least within the huge range?

I feel totally deflated and fed up with being fobbed off and have had a few tears, partially cos I'm so frustrated but also cos I feel sorry for myself!

She told me she will retest me in 6-12 weeks as result might be a blip! She then agreed to test my intrinsic factor and paretial whatever in mid november then if pernicious anaemia will start me oon B12 injections once every 3 months for life probably. She didn't want to commit to lifelong treatment to which I told her I've been taking Levothyroxine since I was 15 so that really doesn't bother me! She told me to take a multivitamin containing B12 but not sure what to recommend as she was not read up on mutivitamins!

I mentioned that for many years I took metformin but she said that won't have effected my stomach at all.

Anyone got any further advice or do I just have to wait for next bloods?

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Hi Eoperez your doctor appears to be very ill informed on Metformin too as well as Vitamin B12.

Do you have type 2 diabetes?

Both your thyroid problems and the Metformin can interfere with B12 absorption.

I'm not a medically trained person but there are others on here who will be able to give you good advice.

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Thanks for your reply. Metformin was taken for my PCOS when I was trying to conceive, which I did eventually in Sept 2015 but took it for a few years prior to this.

She just wasn't interested in what I was saying and just made me feel like my symptoms are all fabricated and nothing to do with my thyroid or low B12 :(

She kept banging on about NICE guidelines to which I pulled them out of my bag and told her I knew what the guidelines were!

I just don't know what else to do :(

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I think im right in saying if you take her advice and start on multivits especially if they have any b12 in them it could potentially alter the numbers you have but not necessarily make one iota of difference to your symptoms. Get your intrinsic and paretial cell done before any b12 too. My gp did mine midway loading so i never got a true diagnosis.

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Yes that's basically what she was saying, after I wouldn't be fobbed off by the receptionist telling me to increase b12 foods (obviously GP told receptionist to say this)

Does it matter if I do test positive for pernicious anaemia? Is that not just a cause of low b12? She will not do anything until I've had these tests anyway.

I'm not planning on taking any supplements until I've had further bloods done.

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Am glad to see you are NOT going to supplement before the blood tests you are going to have.

And what the ----- is the receptionist doing giving you medical advice. And what is the GP doing discussing you with the receptionist.!

Isn't there a more professional GP at your surgery that you could try. I have gone through 3 GP's before finding a decent one with a full set of brains.

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If you know your medical health is being discussed with the Receptionist you should be making a formal complaint - they are not allowed to do this.

As I have stated previously (sorry to keep harping on) you do need to do your homework, go with written down facts/dates regarding your condition. Take time to make this well thought out and considered, consider taking someone with you. If you take someone with you make sure that they are there only to support and will not dilute your key massage. Once GP's see you are serious and will not be fobbed off you will get the correct treatment. BUT, please keep in mind they are General Practitioners so might not be totally informed about your conditions. Time is limited so make sure you are clear in what you want to say.

If you go in waving the NICE guidelines before trying all their suggestions might not win you a good result. I speak from experience on both approaches !!

Regarding changing GP's within your practice - very sensible approach. I tend to go to one for female complains and another for my PA/Thyroid stuff.

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Thank you for your advice. It seems to be the done thing in the practice for the gp to put a note on your record for the receptionist to forward on, perhaps I should be questionning that but will try and get the other issues sorted first I think.

I failed miserably last time at getting my point across as just ended up getting upset so think I'm best with the letter route!

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@beginner1 The one I see is one of the partners so is one of the most senior there. I would have probably been better seeing a registrar then at least they would have been thorough and done some research / reading up on it!

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The three GP's I have put on my black list are all senior partners, and my nice, sensible one is new and fairly young. I too got upset and wish I had taken the letter route.

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Eoperez - I think you have tried being nice and it is probably time to look at something a little more agressive.

Do you think you could put everything down in a letter.

Say that further to your appointment with whichever doctor you are putting in writing the reasons why you think you should be treated - list symptoms - list source for the symptom list - refer to guidelines and list the most relevant facts

a) your current test results are below normal range

b) you are highly symptomatic (sorry haven't looked back at your previous posts but guessing) and in particular you have neurological symptoms

c) treatment should not be based on the presence or absence of anaemia as anaemia isn't present in 25% of people when they first present with B12 deficiency

d) guidelines are that treatment should not be delayed if there is neurological involvement because of the risk of permanent neurological damage.

You may also want to consider joining the PAS and asking them for advice and support

pernicious-anaemia-society....

If your GP genuinely did say they wouldn't treat you until levels were 60 then I honestly can't put down in words on this forum what I think should be done to them.

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I think that's exactly what I need to do, thank you. It's been more than 24 hours since I saw her and I'm still so annoyed. Maybe that's why I can't think straight and didn't know what else to do next so I appreciate you pointing me in right direction.

Yes, that's exactly what she said :( what's the point in having a lab range if she just picks her own number!

Think the anaemia bit confused me as she pointed out haemoglobin was mid range and I really didn't have anything to come back to her with as still trying to understand what is what. B12 was outside of lowest range and ferritin and folate at bottom end of "normal"

I still can't believe she wouldn't do tests straightaway and is making me wait another few weeks.

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even worse when you consider that the number she has picked is actually bordering on the point where they give up measuring because the levels in blood are so low that they can't really get an accurate measure.

Haemoglobin is only one measure for anaemia - if you are looking for anaemias caused by B12 and folate deficiency then you would be looking for large MCV and large MCH. This can be masked if you are also iron deficient which tends to make both smaller.

Is there another GP at the same surgery you could try?

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My MCV was 91.3 fL (range 80.00-100.00)

MCH was 29.8 pg (range 27.00-32.00)

B12 - 172 (range 190-210)

Folate -5.2 (range 3.30 - 99999) the top range seems incredibly high so dunno if it's a typo on their part

Ferritin -14.7 (range 13.00-300.00)

I just think I'd get the same response from a different GP as the one I saw was one of the partners so think any other GP would seek their advice!

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folate probably recognising that its actually being below the bottom of the range that is the problem - ranges for folate are often expressed as being greater than the bottom rather than giving an upper.

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Gambit62 The words you were looking for are "Hung, drawn and Quartered"!

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they were so much worse than that

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Brilliant advice, as always Gambit62

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Hi Eoperez

Firstly, lots of {{{Hugs}}} coz it sounds like you need some.

Unfortunately, so many doctors just don't have a clue re B12 deficiency. Having said that, I think your doctor really does take the p***** I'm absolutely 'mouth-dropped' having read your post. I feel these doctors are being very negligent and just not treating patients properly, nor humanely. I often think we would be treated as an animal by the vets, to be honest. I'm sure vets have much more compassion ;)

I've resorted to self-injecting and feel so much better but my GP is still adamant I'm not B12 deficienct so I've given up on him for that.

Yes, I agree with Gambit62 in that writing a letter may help. I know there's a lot to write but my advice is to limit your letter to only one A4 side and make it clear as to what you expect from her. More detail can be added as Appendix, on separate sheet, if you feel you want to express in more detail. Medical staff will only read the first few lines of any letter, then glance through the rest of that page. I'm convinced they won't read further pages but, as Appendix, they may be more likely to, for further clarification.

There are links re help to write letters but I don't have them to hand just now. Also, the Pernicious Anaemia Society is worth looking at and, for only a small amount, joining. You would then be able to ask Martyn Hooper for some help too.

Try to keep going. If all else fails, there is self-injecting to fall back onto, should you decide to go down that route (not particularly expensive, either)

Take care and keep us updated. You have lots of support here ;)

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Thank you, some virtual hugs was just what I needed!

I have found a page full of info and what to put in a letter and I will take on board your advice and try and be concise and to the point.

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I have never actually been diagnosed with PA (which made getting treatment more difficult) and my test levels were similar to yours but I have needed stupid amounts of supplements to get well and would have died if I hadn't.

It's really good advice to write a letter and then consider changing GP.

Go for it.

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Thank you all for your kind words, support and advice, I really do appreciate it.

Am I best asking to be tested first for intrinsic factor & paretial cells or should I insist on treatment ASAP?

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Good morning, Eoperez

Basically both!!! ;)

If your GP will accept your reasoning etc, they should be giving you a blood request form AND asking you to make appt for first injection, probably with the surgery nurse. If this is the case, then just be sure to have your blood taken before your B12 injection.

Also, make sure Folate is included in the testing. If possible, ask for Holocysteine and MMA (I believe urine test is more accurate than blood) These last two tests are not as regularly done and are expensive (but dont tell your doc ;) ) The results of these may be helpful but can be a battle to get. Also, they take several weeks to get the results - and then the docs won't know what they mean!!!

Now, I don't like to be a damper but, althouigh you should go in with some confidence, please don't be too surprised if you still get a negative response. Doctors just are NOT clued up on the importance of B12, nor recognise symptoms unless you have macrocytic anaemia.

If you can get a diagnosis of B12 deficiency, life will be that much easier in terms of prescription. However, many of us aren't prepared to fight / wait longer so self-inject. That generally means probably never getting diagnosis, of course :(

Oh, and it's worth getting the letter to the doc a couple of days before your appt so they can read it beforehand. If you're lucky, they might even do some research - OH, I've just choked with that last sentence ;) Ha Ha

TaKe care

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Thank you. Yes I think that's what I'll be up against as she's adamant that my symptoms are not caused by low b12 :(

I had thought she was always pretty clued up and thought she might have just done a little research into B12 but she's really shocked me with her ignorance!

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They don't use the paretial cell test now, but yes try to have the IF test BEFORE treatment. Even though it isn't reliable it's the only one used these days.

I had mine at the same time as my first loading dose injection, but before it! As the treatment would still be the same whatever the result.

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Ah really? I didn't know that, it was the GP that said she would do both!

The issue I've got is she refuses to treat me as there is nothing wrong according to her and she is making me wait until mid November for next blood test and then I guess if that comes back negative for PA with B12 at about the same level as this time she will do diddly squat!! :(

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If you search for paretial cells at the top you might find other posts about it and more technical stuff about why it isn't used any more (unreliable).

'Apparently despite being positive in 80% of PA subjects, they are also positive in 10% of normal individuals.'

This is in the new guidelines issued by the BCSH. So maybe your GP is not aware of them, although it sounds like your GP isn't aware of any guidelines! Your levels are low, you need loading doses!

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Well I've just phoned the GP to see if my vitamin D test is back only to find find out from the receptionist that my intrinsic factor result is back.....wasn't even aware they had tested it on 11 October so don't know why the GP has asked me to have it tested in November!

It apparently is normal, dunno whether to be pleased or not because I think I'm now going to have a right battle on my hands. If it had been abnormal then I think she would be more willing to treat me!!

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Hi eoperez. I'm so sorry you had such a sucky visit with your doc. There's nothing worse than being sick yet get the brush off from the one person who's suppose to help you. I was wondering what your insintic factor levels are? I was diagnosed with Pernious Anemia. My b12 was 90, my instrinic factor was 96( range 0.0-1.1), elevated MCV and low red blood cells. I was started on b12 injections daily, now once a week for life. I also take folate. I think the problem is that docs have to see #'s like mine before they act. That's sad. If they would have treated me sooner, I wouldn't have had to go thru the last few years feeling so badly. After being diagnosed, I've done tons of research. I believe no one's b12 should be below 300. If your insintic factor levels are fine, then I would supplement with the highest b12 with folate. If your insintic factor levels are off, your stomach will not absorb or distribute b12, then you need injections. Best of luck and hope you feel better soon

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Pleased you have eventually got the treatment you need, but crap that you had to wait so long.

I just went up to pick up my printout of results but there are no levels whatsoever on there, just says negative and normal! I thought there should have been some kind of range but don't know why it is not on printout :(

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Hi Eoperez,

Do they offer patient portal at your office/clinic? If they do, sign up. You get all your tests, levels, imagining, meds taken and more. And you get it in just a few days. Also, you didn't tell me what you're instrinic factor level is. It's so important. It's one of the only ways to diagnose pernicious anemia

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The only system they have is where you can book appointments online and request repeat prescriptions.

My printout doesn't show any levels whatsoever just says negative and normal.

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Eoperez,

Hmmm, that doesn't make sense to me. They should always give levels. It might be worth going to a different clinic. My patient portal shows every level. My doc gave me a complete printout of my levels when I was diagnosed. Part of me wants to say if anything was off, it would have said abnormal. I would either trust that and start on supplements or get another opinion and a complete different set of bloodwork.

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That's what I thought. When I asked the receptionist to tell me the level she said there wasn't one so I asked her to print it out for me to collect and she was right. Just makes me question GP a bit more wondering if she didn't want me to see the level and gave me a basic report especially if it was perhaps borderline.

I'm due to have bloods done again on 13th November so I'm a bit reluctant to start any supplements until after then. But I guess if intrinsric factor is negative now it isn't going to change.

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Yes, probably wise to not start on supplements until your next round of tests. I agree about not trusting any doc who won't share and go over every level with you. The instrinic factor tells me it's not pernicious anemia, but that doesn't mean something else isn't going on. I would go one more time to this doc and ask to check all your vit levels. All the b's, d3 ect... as well as thyroid. Make sure its not just the basics. Ask for free t3 and free t4. Tell her you know somethings off. Also I would tell her you'd appreciate all levels in report because everyone is different and normal lows for one may mean really low for others. If you don't feel satisfied this next time around, i' d switch docs for sure.

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You are entitled to all your results, numbers and range. The results that the GP has access to WILL show numbers and range so I don't know what the receptionist is printing out for you. Because of the Freedom of Information Act, you are entitled to this information and, if necessary, quote it to receptionist as she could be in trouble if she doesn't provide it, even if she has to check with the doctor first.

Also, it's my understanding that access, via internet, is now obligatory to all surgeries and, as your surgery has online appointments, repeat prescriptions, results of tests etc should also be available. You will probably need to ask Reception to arrange this and you will likely have to sign a form to give permission etc. This is definitely worth sorting out. While reception is organising that (may take a few days) ask for a printout of all your results and to include all 'numbers and ranges'

Contary to what Wowo23 has said (sorry, Wowo23), the GP should be able to get Serum T4 test done but it's likely that the local labs will NOT test T3 in any shape or form. If you really want this result, it would be worth getting a thyroid profile done privately, if you can afford to.

As @Wowo23 says, if your GP is not going to help you, can you see a different GP?

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I'll get on to that, thanks.

My last 2 thyroid blood results are as follows:

21/08/2017

TSH <0.05 (range 0.35 - 5.5)

Free T4 17 (range 9-23)

22/08/2016

TSH <0.05 (range 0.35 - 5.5)

Free T4 17 (range 9-23)

Free T3 5.1 (range 3.5 - 6.5)

I'm on 175mcg Levothyroxine per day

And I'm still waiting for vitamin d test to come back (had it done on 11th Oct)

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Eoperez

In my opinion, I would say your results are FANTASTIC!!! ;) Lucky you ;)

Your TSH is well down (aim is 1.0 or below); T4 about mid-range and T3 also about mid-range. If you are still having symptoms, then I would think it could be due to B12 or Folate levels being too low.

Wait for others to comment but would be worth posting these results, and your symptoms, on Thyroid Forum, as they are more experienced with thyroid results and the effects re levels etc.

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I have fought bloody hard to get them there.....24 years! Every time I have thyroid bloods done I get a call saying I'm over medicated and the GP(who has fobbed me off this time over low B12) has fought my corner and won't let them decrease my meds.

It was through the thyroid page I came here as was still feeling like crap and posted there and they encouraged me to ask for vitd, b12, ferritin to be checked. Was a struggle to get GP to agree and she basically told me as she did agree that she was sure they'd come back fine and was a case of knacketeditis being a working Mam! She wouldn't test t3 again August gone because she said it was fine last time.

I guess that's why I feel so let down because I really trusted her to do right by me when I got this set of results showing low b12 and ferritin and folate just in range.

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I would think that your GP is more experienced in Thyroid issues and happy with your current results so that's great. I don't know why other docs think you are over medicated, except that they probably don't like your TSH so low. However, with your T3 and T4 around mid-range, they should accept that as good!!! (IMO)

Yes, if she has been supportive re thyroid levels, then I can understand how you are feeling so let down. Perhaps it would be worth telling her that you have felt supported re thyroid issues and, as a result, trusted her but now feel she is failing you re B12.

GPs will usually only consider reading articles written by doctors and if it's in BMJ etc so I'll try to find a link to an article I have that is by a doctor and is in BMJ. It might be worth enclosing it with your letter, for her to read before you see her next.

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That would be brilliant, thank you.

The report that comes back from the lab always says something about tsh being outside of range so the other GPs just look at that!

Yeah think she knew how upset I was with her but then that probably added to her thoughts of me being depressed seeing how I was fighting back the tears!

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Depression is a possible symptom of B12 or Folate deficiency. Too many people are prescribed antidepressants (to help the symptoms) but not consider any cause!!!!

Antidepressants must cost far more than B12 injections - I just can't see their rationale :(

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I dare say if I'd gone in and told her I was depressed then she would have had no qualms whatsoever prescribing me some antidepressants which is sad and wrong.

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Well I've had phonecall from the doctors today asking to make me an appointment for Thursday, but confused as to why but not too long to wait to find out. Hope it's not just for her to tell me that intrinsic factor is normal and therefore there is no problem, which I've got a feeling that she is going to say!

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Hi all,

So been back to the doctors today and not a huge amount further forward although she does seem to have a done a little bit of homework but not much!

Her now plan is to test parietal cell antibodies, then start me on 100mg oral B12 then retest B12 in a few months to see if I'm absorbing it. Her other plan was to just monitor my bloods! She's apparently used the Bath & new Glasgow guidelines to come to this decision and spoken to some colleagues around the country!

Apparently the Nice guidelines don't apply to me as I'm not anaemic and apparently don't have PA even though I told her the facts I'd found about negative IF, normal looking MCV etc.

Apparently there is nothing wrong with my folate either even though it's right at the bottom of the reference range.

Do dizziness and tinnitus class as neurological symptoms?

Oh and she told me basically not to expect many of my symptoms to improve.

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Hi,

Some links that might be useful

Unhappy with treatment?

Link about writing letters to GPs about b12 deficiency.

b12deficiency.info/b12-writ...

CAB NHS complaints

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

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

"Do dizziness and tinnitus class as neurological symptoms?"

Symptoms lists

pernicious-anaemia-society.... see 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

"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.

B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/

Also an interesting blog about b12 issue son "B12 Deficiency Info" website.

b12deficiency.info/

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

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

They can offer support and info to PAS members. In some cases PAS may be able to intervene on behalf of PAS members. PAS membership costs £20 for a year.

"Hope it's not just for her to tell me that intrinsic factor is normal and therefore there is no problem,"

"Apparently the Nice guidelines don't apply to me as I'm not anaemic "

If she says that then perhaps it might be worth her looking at the following

1) BMJ B12 article

bmj.com/content/349/bmj.g5226

2) BSH Cobalamin and Folate Guidelines

I gave a copy of this to my GPs.

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

There is a useful summary of mainly UK B12 documents in the third pinned post on this forum.

Consequences of B12 deficiency

Some people on forum have discussed/written to GPs about the potential consequences of untreated or under treated B12 deficiency including the risk of spinal problems.

See following

PAS article on Neuro Consequences of PA

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post that mentions SACD

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

Writing letters to GP about undertreatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

I am not medically trained.

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Thank you Sleepybunny , I'll check out all of those links. I am in the process of writing to GP and gathering as much evidence as possible to support my letter and to give them links and print outs to educate them a little better.

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My understanding is that letters to GPs are filed with a person's medical records in UK.

It might be worth putting quotes from relevant articles in letter as this hopefully will be filed with medical records so therefore is harder to ignore whereas printouts might be ignored or discarded and links might not be looked at.

I would suggest any letters should be as concise as possible as hopefully more chance that GP will read them.

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Ah ok. I thought about doing that originally but then thought it would make letter too long! I'll add quotes in and see how long it makes it!

Thanks :)

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