Feeling Lost. Why is there no medical help?

[Nyomi]

Hi. You all seem so knowledgeable and helpful. I am hoping you can help me feel a bit more hopeful about things. I have been feeling unwell for more than a year now but my symptoms have been worsening more quickly in the last few months. I have the usual fatigue, pains in hands, feet etc. I also struggle to think clearly and generally feel that I am falling apart both physically and mentally. Both my Grandmother and Aunt were diagnosed with PA and I also had to have B12 injections during both of my pregnancies. I also suffer from psoriasis which I have researched and see is an auto-immune disease with possible links to PA.

My GP agreed to do some tests but the B12 serum results were 251 so she said there was no way she would consider treating me as it is above normal range. Haematocrit is 0.365 which is just below normal range but she did not mention this. None of the other indicating factors seemed to interest her and she said I must be suffering from stress. After much persuasion she agreed to test me for intrinsic factor but has said that the lab may reject the request due to normal B12 levels. She virtually guaranteed me that the tests for intrinsic factor would come back normal and then I would have to accept that it is simply stress and depression causing the problem.

All of the information I have read seems to suggest that GPs are supposed to treat and not wait for test results as they are unreliable but what are you supposed to do when you come up against a wall of opposition like this?

[fbirder]

Suggest to your GP that you make a deal. She will prescribe a course of B12 injections - 1000 ug of hydroxocobalamin, three times a week for two weeks. If you don't feel better after that, and the Anti-IF test comes back negative, then you'll investigate other options.

It's impossible to overdose on B12, so there's no possibility of you being harmed by the experiment.

[Lisahelen in reply to fbirder]

As usual frank gives good advice, hopefully you can persuade your gp to trial you. But you could also point out that for quite a few people the depressed/anxious symptoms are all part and parcel of the b12d. For me personally i would say that i was quite a way down the deficiency scale when this started happening to me. At 251 you arent really that far above the numerical cutoff point i would have thought, especially when you have family history too.

[Nyomi in reply to fbirder]

I think I will wait for the results of the other test and then try asking for the trial. It's a good idea - thank you.

[sweetnessandlight in reply to fbirder]

I wouldn't rely on the IF test as part of this deal. It produces at least 40% false negatives. If you have symptoms and a b12 serum level near the bottom of the range your gp should be treating you for b12 deficiency.

[Polaris]

I'm so sorry Nyomi, it sounds as though you could indeed have PA, with your family history as well as having to have B12 injections during pregnancy. You could join and contact the PA Society. They are very helpful in intervening and explaining the risks involved in not treating PA and B12 deficiency urgently.

If this fails, it may be advisable to consider self injecting and supplementing straight away to avoid symptoms becoming worse.

[Nyomi in reply to Polaris]

The thought of self injecting does scare me a bit but I've just watched a couple of videos on YouTube and they make it look fairly straight forward! I think joining the PA society sounds like a good idea. Thanks.

[humanbean]

My GP agreed to do some tests but the B12 serum results were 251 so she said there was no way she would consider treating me as it is above normal range.

Your GP is mistaken. 251 is above the bottom of the normal range, it isn't above the normal range.

I've read that the Japanese consider deficiency to start below 500.

[Nyomi in reply to humanbean]

Perhaps that was what she meant actually. It's quite hard to trust GPs as their advice is so variable and unless you actually request a copy of your results and do some investigations you don't end up with a very clear picture.

[Softpaws in reply to humanbean]

I believe the reason the Japanese have such a high lower level is because that is the level where cell damage / non regeneration occurs. Many other countries have higher lower levels than the uk.

[helvella in reply to Softpaws]

Years ago, I noticed at least some "foreign" [1] papers used different units:

258 pmol/l (= 350 pg/mL)

The difference is enough to be significant at the lower end. However hardly anyone specifies the units for B12 tests.

[1] By which I simply mean, non-UK.

[Nyomi]

Thanks for your replies guys. As much as anything else it's nice just to chat to people who know something about the subject and who understand.

[pugdogs10 in reply to Nyomi]

You are entitled to a copy of your results and they may be helpful in the future. They do sometimes charge 30-50p for the printing but don t be afraid to ask and insist if you need to. You can get help on this forum with understanding them if you need it. Best wishes.

[Hidden in reply to pugdogs10]

As I have said on another thread, if you are in England you should be able to register to see your coded information records online, which includes test results, via the Patient Online Programme. Some practices have not got round to it yet, but it is in their contracts. I can see mine online the day after the blood was taken. No paying for printouts or ringing the surgery.

If your practice does repeat prescriptions and appointments online, it should be possible to get access to your records. Ask them. Google Patient Online to get the info about it.

[helvella in reply to Hidden]

You are quite right - some practices have not got round to it yet. I think that means they are failing to honour their contracts.

I currently have a complaint about my practice - primarily a data protection issue, but also including issues related to online access.

Five days down, 23 to go, waiting for any sort of response.

It is good to hear of people for whom it is working.

[123harry]

l really hope you get on ok at the gp have you had your vit d checked it can make a huge difference also ask to have your iron ferritin levels checked and always ask for results don't just let them tell you they are normal this can mean they are just squeaking above the cut off points and that's not always normal we all seem to struggle getting the right help

[Nyomi in reply to 123harry]

Yes I had my iron levels checked. They are low but currently not below the limit - 16. This is normal for me. I take iron supplements continually but can't seem to get them above this level. I haven't had vitamin D checked so this might be the next step. Thanks.

[Laura5 in reply to Nyomi]

Have you been tested for both coeliac disease and h pylori. 16 for ferritin is low and if you can't raise it there must be a reason.

[Nyomi in reply to Laura5]

Hi Laura. i was tested for coeliac disease years ago but not the other one. I haven't heard of h pylori before...?

[Laura5 in reply to Nyomi]

h pylori is a bacterium (Edited: thanks Helvella) which attacks the stomach. It can cause both low iron and low B12. It can be treated with antibiotics.

[helvella in reply to Laura5]

Helicobacter pylori is actually a bacterium (rather than a virus).

[Laura5 in reply to helvella]

Thanks - blame brain fog! Obviously otherwise antibiotics wouldn't work

[Twench]

I think everyone has already covered anything I would have said. Good luck Nyomi x

[clivealive Forum Support]

Hi Nyomi

"False normal B12 results and the risk of neurological damage (U.K. N.E.Q.A.S Haematics.org.uk

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

As fbirder suggests do a deal with your doctor and given your family history of P.A. he/she needs to take that into account.

I wish you well

[Nyomi in reply to clivealive]

So why are GPs ignoring this advice? Is it possible that they are simply not aware of it?

[fbirder in reply to Nyomi]

So why are GPs ignoring this advice? Is it possible that they are simply not aware of it?

I like to be generous and assume this is the answer (otherwise I'd have to believe that they're being deliberately evil, possibly because of the vast amounts of cash they get from the nasty pharmaceutical industry).

GPs have to work around 50 hours a week. Outside of that time they need to work on their Continuing Professional Development points - gponline.com/simple-guide-c... . Then they have to find time to try to work through the mountain of paperwork from the various authorities and try to keep up with the latest research in several journals.

It's not surprising that something from the BCSH might get lost in amongst that lot. That's why the PAS developed a module for the eCPD app that quizzes GPs about PA. And why I felt it would be a good idea to give my GP a copy of Martyn Hooper's book (I'm not sure if reading it may have earned him a CPD point or two).

[clivealive Forum Support in reply to Nyomi]

Nyomi as fbirder above says Martyn Hooper has produced a two page "handout" called "AN UPDATE FOR PRIMARY HEALTHCARE PROFESSIONALS" which, if you are a member of the Pernicious Anaemia Society can be accessed and printed off from within the LIBRARY section.

If you are not a member it only costs £20.00 to join and like P.A. it's for life

[Nyomi in reply to clivealive]

Just joined! Thank you.

[Nyomi]

UPDATE: Well, I have listened to everything on here and went back to my GP, loaded with print outs, and asked her to reconsider treating me regardless of test results. She did listen to everything I had to say and glanced at the information I took in, but she said she would need to seek further advice before agreeing to treat me. She has promised to look into it and says she can't see why an injection of B12 as an experiment would be a problem but that she would not be able to do this without checking out a few things first. The problem is, she is now on holiday until Monday and has said to give her a couple of weeks after she gets back to get some answers. The other problem is that she is only agreeing (if she does eventually agree to it) to one dose because my levels are 251, and says that even if the intrinsic factor results show anything that one dose will still be enough. I don't know if I am going to get anywhere with her. My best hope is that her research will now show her she is wrong and that she needs to take a different approach to this. In the meantime, my health seems to be deteriorating. I am a teacher and on half term this week - I am dreading going back to work next week and trying to summon up the energy to get through to the summer holidays.

Thanks so much for all your support on here. It really does help a lot to know that others understand this situation.