So deflated and confused : Hi I’m just... - Pernicious Anaemi...

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So deflated and confused

Andypandy30
Andypandy30

Hi I’m just back from gp app and it didn’t go in my favour in that he wants to change b12 injections back to once a month . I’m ok with that as I was supposed to get loading doses and was having problems getting someone to give them to me due to staff shortages . So started self injections. I’ve been getting one weekly in surgery instead of every other day as prescribed for loading doses and he wanted me to continue until no further improvement . I had bloods done on Monday of last week and wanted to discuss my folate with him and why I wasn’t offered folic acid etc . He was quite firm almost as if he was doing what he was being told to do . He did not want to discuss anything like my low vit d (31) or low folate (10) . The only thing he wanted to say was that my b12 was extremely high in the 2000s and I should stop loading doses ( which I never received properly ) a month ago he was saying that we can never have too much b12 but he’s totally backtracked now by saying that it must be something else wrong as I’m not improving as I should . Now I’m scared and confused . I’ve asked for blood glucose test to be done as that’s the only other thing I can think of . I still have symptoms BUT I’ve noticed a slight improvement over the 2 months . Could it be that I’m healing very slowly or he’s right that something else is wrong . I still have weakness in muscles . Im not as tired I’m still not walking properly . What I’m saying I suppose is , I am not recovering the way I did on loading doses a year ago . And now he’s frightened me .

20 Replies

So sorry about your experience. I have the same thing every time. The doctors are just not educated and even if they were, they are constrained by NHS guidelines. I wish I could offer you more options, but I've made my peace with the fact that I don't think that the NHS can help me. I've been to a nutritionist and had a GMAP done and am working on a long-term diet to try to look at some of the issues which have come up. On the B12 you know that a high B12 level is not dangerous, nor an indication of being 'topped up' sufficiently, so I'd suggest you just accept that you'll have to decide your own treatment plan for B12. I am posting my GP a copy of Martyn's book, but I'm not hopeful that will change much.

Fiona thank you , I know that this had been said by other posters before that the doctor should know that high b12 is not dangerous so why do they scare us like this ? I’m only getting into a routine with self injections and he’s putting doubt in my mind . The fact that a month ago he said ‘ we can never have too much b12 as we pee out the excess ! When I asked him straight if the main doctor had told him to stop loading doses he answered ‘yes’ so he is doing what he’s told but to then say as I haven’t improved sufficiently in 6 weeks then ‘ there is something else wrong ‘ has worried me and I told him so . He said I’m concentrating on this one particular thing and it might not even be that . He made the point that my intrinsic factor came back as negative almost a year ago . This tells him that b12 is not the problem . I told him that it needs rechecked when I’m not on injections and he said the experts will do that . I feel he’s just given me a short shrift out the door ! I told him I’m just a mum who wants to get well and he’s not doing the job he trained for .

Your folate isn't low. Normal range is either 2-20 ng/mL, or 4.5-45.3 nmol/L, depending on the units used. 10 isn't low on either of those ranges. Unlike the serum B12 test the folate test is both precise and accurate and the 'normal' ranges are a good fit to reality.

If your problem is B12 then 2 months is a bit soon to expect full remission of symptoms - especially the neurological ones.

You are right to ask for a glucose or, more specifically, an HbA1c test as there's a big overlap between the symptoms of a B12 deficiency and diabetes.

Andypandy30
Andypandy30 in reply to fbirder

Thank you fbirder so the 400 folic acid I’m on daily is fine . I understand . I asked for the HbA1c test and am having it tomorrow .

fbirder
fbirder in reply to Andypandy30

Yup, 400 mcg should be OK.

Andypandy30
Andypandy30 in reply to fbirder

Fbirder just want to rule everything out as diabetes in a prevalent in the family and thyroid which is being treated . I felt great on the last loading doses and I know it’s only been a couple of months trying to get as much into my system as possible but I am feeling more clear headed and have some other improvements. He’s making me doubt myself and question if I should continue si

I came away from a GP appointment at the weekend feeling similarly Andypandy30. I'm coming to the end of 5 loading doses and GP plans to leave me 6 months then retest my B12. I have neuro and gastric symptoms so according to NICE guidelines should be on regular B12 for life, no retesting and referral to specialists. Just came away feeling shut down and frustrated, pretty much in tears to be honest. They don't even plan to redo my FBC, ferritin or folate in he meantime. I don't yet feel noticeably different since starting the loading doses either. Stomach issues and exhaustion as bad as ever, but maybe feeling slightly sharper mentally. My skin feels really oily and uncomfortable too...

I'm considering emailing the surgery highlighting the NICE guidelines, but am afraid to make myself unpopular and even more likely to be dismissed in future. Looks like my best bet is just to spend another 6 months feeling terrible and see what they say then?!

Andypandy30
Andypandy30 in reply to BlackInk

I did this last year . It helped me get injections moved to monthly instead of 3 monthly which was slowly going to kill me . I really think you should try . They cannot leave you to suffer for that long . Even in a months time you will see if your levels drop so go back in a month and tell them. You are suffering and would like your levels checked . More than likely they will have dropped and it will be evident to them that you are not absorbing and levels need topped up to be asymptomatic . I feel for you . Please keep fighting for yourself . Don’t wait 6 months x

Cherylclaire
CherylclaireForum Support

Listen, Andypandy30 -

re. serum folate: (range: 3.90 - 26.80 ug/L)

mine was 5.5 when I first got really ill, and then stayed in the upper 6s - it only reached high numbers (>20) when I was given a 3-month course from GP. Within a couple of months, it had dropped again to 6.2. I now take folate as part of a multivitamin and mineral tablet, and additionally on its own..... which means double the recommended daily allowance.

This is not a solution for everyone: I just tried to work out for myself what would keep my folate in the top third of range (15.2+) and just had it tested recently and told "normal" which is obviously of no use to me, as it has always been within range. How normal ? It's on my list of things to ask my GP when I go next.

The reason that the GP gave me the 3 month course (iron and folate) was that my hair was falling out, my gums bleeding, corners of my mouth sore and splitting: she did not believe that these were B12 deficiency symptoms but to her sounded more like either iron or folate, both of which were low end of range. I also have low vitamin D and have this and Risedronate on prescription because I have osteoporosis of the spine. None of this sounds all that normal.

I don't believe any of this is poor diet, as I think my diet is very healthy (although long-term vegetarian, so some would disagree) - and if I'm not eating enough leafy greens, who is ?

I was told to try and keep folate in the top third, ferritin ideally at c 100 ug/L (which I've never achieved yet, even on prescription supplements!) and that low levels of ferritin, folate and B12 have a detrimental effect on thyroid: this was advice from here from people I trust but who aren't GPs.

DO NOT BE SCARED: my B12 has been consistently >2000ng/L, at least after treatment once it stopped being 196 ng/L (when I felt barely able to stand up). I know which I prefer.

Yes, I still get hair loss, bleeding gums, and split mouth but not all the time, and visible signals of deterioration are useful: to me and medical professionals. Except for the ones that don't want to look, Andypandy, and you can't do much to change that. Wasted a good few years trying though......>sigh<

Keep your spirits (and folate levels) up, keep posting, don't give up -and don't wait !

Also asked him if folate has been consistently low and he scanned the computer quickly and of course didn’t get a run through but my level was 4 in 2015 when I suddenly became so ill but of course they didn’t even think that this could be connected to my illness . Now I know different and how levels can affect the body by presenting with horrendous symptoms . I will be keeping an eye on things . Sad that he told me that today and how much I suffered not knowing what was wrong with me

Thank you for your reassurance cherylclaire ! I Am not going to let him put me off . So continuing with self injections and keeping folate up . I will try to increase this with diet and see how that goes . Vit d being sorted with higher dose vit d than what I was on . Incidentally my vit d HAS increased very slightly ( my observation , not his I might add ) so the treatment iv been using ISworking re this issue as I have noted my vit d levels throughout the last year for my own records .,I too have suffered hair loss not the sore mouth though so I agree keeping everything as near to top of range is the way to go .x

It’s scairy when we get no answers let me know how you get on

Will do xx

Hi Andypandy

Sorry your GP has scared you about your high readings, all I can say is that I SI once a month and my readings are always around the 2000 mark and have been for the last couple of years, I keep getting told this is really high and that I should go back to injection every 3mths but I say that I can not function on that and that I am going to continue on monthly treatment

Hope you feel better soon

Thank you Pitney , I have rationalised it now that this is exactly what they are doing . To stop the injections and try to scare me with their reasons. Not paranoid just another kick in the teeth in my battle and I will fight on xx

Cherylclaire
CherylclaireForum Support

Tried to reply to you about 20 minutes ago, and there was a "network error". Haven't got a computer, am in the library on a time-limit, so quite frustrating when that happens.

It was quite long - gist of it being:

"Don't give up. Anxiety and mood-swings quite common, and not helped by GP mood-swings either ! Suspect he is under some pressure, felt that about my GP too at times. If you want sense, ask on here for help. It certainly helped (and continues to help) me."

Hope this one gets to you !

Thank u Cherlyclaire x

This may not be helpul to you, but something on this thread triggered a thought. Perhaps that phrase 'no further improvement' actually works against us, because we go in with a host on non-specific symptoms, while doctors these days are loking for evidence based facts to back up their rationale for treatment. Which are of course test results. But the instruction of guidance is related to clinical observation, not test results. These days they don'r seem to do that much observation, my injections were stopped and have been for three tears, during which I have had other health crises todeal with and to fight my corner over, my b12 symptoms include socks and gloves neuropathy, hair loss and exceptionally slow wound healing, all of which b12 has made a massive difference to. But in an age in which doctors use computers to pattern match hair loss immediately triggered possible thyroid, which I have been tested for many times, yet again it came up negative, so having ongoing symptoms and no evidence whatsoever that anything has had 'improvement' remain untreated. Nothing will budge them.

I think this is something that needs to be changed as it gives doctors a getout from treating people and a quick means of saving on paper at least.

Stick with it, I have not been able to for practical reasons but it doesn't mean that is the right way to be, the right way is to pursue the best treatment for you.

I feel yr anxiety! I have been waiting to hear back from the gastroenterologist for over a week. Called AGAIN today & was told he isn’t available until Wed, NEXT WERK!!! WTF???

They drop these bombs on you, can’t or won’t explain things, & then get ticked if you don’t get directions right or have questions/concerns!

Beyond frustrating!

I am seeing a family practioner, an endocrinologist, gastroenterologist & rheumatologist! Been telling ALL of them how awful I feel for a very long time! Told my hubby I feel they are all missing something. I think all of my complaints/symptoms are connected.

When I was told YEARS ago I had a B12 deficiency, there was NO MENTION of PA. Loved my old internist. He had a stroke & I switched Drs. Like my new family doc a lot. BUT... 1st dr always did CBC, retic, vit D, B12, folate, ferritin & TIBC. Haven’t had all those done between 4 Drs right now!

GI ordered gastrin level & antiparietal antibodies. I read that the antiparietal test not as accurate as testing for intrinsic factor antibodies. Can’t inquire as he won’t call back!!!

Anybody have MMA test done?

Researched on my own & I think I could have polyglandular autoimmune syndrome of some variety. Endocrine dr suspects that to be the!

Waiting for rheumatology workup to be completed. Hope that will give me a diagnosis so that whatever is wrong, I can start treatmentcto feel better!!!!

Hang in there! Find another dr! Do your own research! And ASK THE QUESTIONS!

You mentioned weakness--have you tried taking extra potassium? Extra B12 will fix the B12 deficiency, but will create a potassium shortage; and low potassium makes one feel weak. You can try potassium powder in water, or coconut water, or low-sodium V8, and see if they help.

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