My doctors won’t investigate

[Lorynne]

Typically I suffer with chronic symptoms of low B12 but all my results seem to be ignored by GP. My ferritin is 35 ug/L (indeterminate), vitamin b12 is 157ng/L (low) and in my FBC my MCV is 95.5 (just below higher cut off) and MCH is 32.1 (slightly high - comment on blood test is ‘no action despite having a ‘!’ adjacent to result). I feel bad, I’ve had issues with pain, numbness, pins and needles for a long time, severe fatigue, nausea, low grade colds and rapid heartbeat. . All the symptoms of B12 deficiency. And a very recent endoscopy showed my stomach lining was inflamed. But my GP is not making the link to pernicious anaemia despite my diet being rich in B12 foods and me already taking iron and b12 supplements. Anaemia runs in my family as well as bowel cancer. I didn’t know there was a link before. I cannot get access to injections and the necessary treatment. I can pay for six monthly injections but apparently you need an intense course of injections to start? Does anyone have any advice please?

[Cb1963]

I'm not sure about all the figures, but having B12 deficiency myself I know how horrible the symptoms are, I'm just about getting by on the 3 monthly injections, the symptoms are classic, and this could continue to give you more damaging problems in the future, it's very difficult to" repair " the damage you've encountered, yes you need the loading doses, but I can't remember if it's one injection every week for 6 weeks perhaps. There's numerous people on here who are self injecting themselves and hopefully they'll join the conversation on how to order the supplements from abroad, and I believe its quite cheap!!!

Obviously some doctors only prescribe a tablet form of medication, but it's a cheaper option and many people can't absorb the vital vitamins, so maybe the good folk on here will give you more factual advice, I wish you well 🤗

[Lorynne in reply to Cb1963]

Hi thank you so much. I cannot believe how much I’m struggling! I really appreciate all the responses. I really would love to know where the best place to order the B12 is from as I’m so desperate. Thanks again!

[Cb1963 in reply to Lorynne]

I'm unsure where people get thier supplies from, I seem to remember many people order it from Germany, i think if you read previous comments on different PA posts I'm sure you'll come across the various links etc, hopefully this will help you in your quest for better health, best of luck!!!

[Nackapan]

Thr loading dose is 6 over 2 weeks .Thrn eod if neurological symptoms until no further improvement

Then 2-3 monthly maintenence.

Many need more thsn this.

I need more presently on prescription.

See another doctor.

Obviously the cut off is lower than your reading usually range is in brackets on thd right of results.

As lower end and given your symptoms ask for z trial of injection s💉

[Hockey_player]

A lot of people from the UK seem to be having problems with getting enough B12 injections from their doctor. Many seem to be ordering B12 from Germany and self-injecting. Take a look on some of the other posts in this forum if you want more info about that. Maybe if you point out to your doctor that B12 injections could help and won't do any harm they might try every other day for a couple of weeks to humour you?

[Nackapan in reply to Hockey_player]

It's in the guidelines to continue EOD b12 injections with neurological symptoms I eventually got thus regime which continued fof as long as i needed them.

I had them for nearly 5 months .

This was not to humour me but was backed up by a neurologist .

[Hockey_player in reply to Nackapan]

I know it is in the guidelines. It's unfortunate that so many physicians are not following them. I guess another approach would be to show the info in the guidelines to the doctor. Hopefully that will work. The most important thing in my mind is to get this person the treatment they needs asap.

[Nackapan in reply to Hockey_player]

Yes .They need pointing out .

One I saw read them out loud when I quietly said about them.

Of course to get treatment ASAP is the aim.

[Jillymo]

Hi Lorynne,

The key to your problem is your gut ! Are you not able to approach the gastrologist who diagnosed your inflammation ? When I asked my gastro about the inflammation I was told this was the reason for my B12 issue. You will see that gut issues, crohnes disease are mentioned in the giudelines...... nice.org.uk/guidance/ng239/...

When they looked at your gut did they follow up with a colonoscopy ? I woulds insist on further investigation 'allbeit long winded' it might be worth the wait. Are you prescribed anything for the inflammation such as Lansoprazole or Omaprazole which are known to inhibit B12 absorbtion.

Once you have a diagnosed absorbtion issue they cant refuse to treat so be firm and be insistant.

[Orchard33]

I suggest you find another GP who is at least willing to try the PA protocol of 6 loading doses then 2 or 3 monthly surgery shots. Your B12 level indicates a questionable B12 status and your ferritin is low. If you have PA, and it sounds as if you may well, your ferritin should be between 80 and 100, although some say 50 is acceptable. Anaemia and B12D are often fellow travelers in PA people, and peripheral neuropathy certainly is a clear indicator. It is extraordinary that your GP is not joining the dots and also seems entirely ignorant of the 6th March NICE diagnosis and treatment guidelines.

[Sleepybunny]

Hi and welcome to the forum.

Short reply as I have arm problems that limit typing.

I left a detailed reply in the thread below which I hope you will find useful.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

[Mixteca]

As well as starting B12 injections ASAP, I'd get a full iron panel done. As stated, you'll need good iron stores for your B12 treatment to work effectively.

Your GP has no grounds to deny you this given your symptoms, so ensure it's on record/you have it in writing somewhere. This is sheer ignorance and clinical negligence.

If all attempts fail, get your 1st jab done in a clinical setting - some chemists will do this privately (in case of a severe reaction), then join the rest of us and self-inject.

There's a fab B12 & iron specialist many of us have used who can also help you.