Looking for B12 administrator in Brighton UK area/ or to self-inject and need sources. Also iron advice pls!

[ChronicTonic]

Hi,

I have ME/CFS, fibromyalgia and am hypothyroid (for which I've recently been self-prescribing T3 - in addition to the T4 from my GP - and have seen a great improvement).

I'd like to improve on my Ferritin and B12 levels below (bloods taken in June) as I am truly struggling with a whole host of B12 deficiency issues and need to improve my problems with cognitive impairment. It's frightening how badly my brain's functioning.

I've been taking Ferrous Fumerate since this June blood test was done, and also oral B12 supplements. The iron seems to be helping, but Unfortunately I don't think the B12 tabs are doing anything - this to me is the area that needs addressing, particularly given my B12-deficient symptoms!

Since I've gone off-piste with self-prescribing the T3 with fantastic results, I feel braver about sourcing B12 administrators without the knowledge of my GP, and even potentially self-injecting B12 if necessary.

So -

Where in the Brighton area can I find someone to prescribe and administer regular B12 shots?

And/ or -

How do I go about sourcing the right kit (B12 and injection kit) online? How much B12 do I take and in what form?

Can I teach myself how to inject with the help of YouTube etc or do I need a nurse?

Many thanks for your patience - I'm sure you've all heard requests like this a thousand times, but I'm new to this particular group on here

Abi.

[Grannyweatherwax]

Sounds like you need to ask your GP for a test to see if you have pernicious anaemia and other forms of deficiency (can't take it from food) but although your level is not low by their standards, it's actually their version of a rather healthy middle zone... I believe it's low by this forum's standards at least? Perhaps someone can help more than me.

Have you been investigated for any other problems? Like had tests and had everything else ruled out? Or did they straight up dx you with ME/CFS and Fibro?

ALthough ME/CFS and Fibromyalgia are serious on their own. They are also often diagnosed simply because they can't find anything else wrong. They're the last minute diagnoses.

(please don't be offended by that, I was diagnosed with both, but I had so many symptoms that just didn't fit with their varied range of symptoms - it was only when we came here that we realised that I am severely ill because of B12 deficiency (I have pernicious anaemia, dx in 2005, but my old doc (since moved) refused my injections for NINE years.. what I am trying to say is that your symptoms could very well be serious B12 deficiency (it matters what's going on at a cellular level rather than the serum level))

That's why I am trying to find out what investigation you've had done.

Lumbar punctures, MRI's, (to Rule out Neurological disease such as MS and so on) scans, nerve function testing etc, have you had ANY of this done?

If not, why not?

[ChronicTonic in reply to Grannyweatherwax]

Thanks Lovely Lady.

I have been unwell for a very long time - triggered by an operation in the 80s when I was 13 which I suspect led to undiagnosed coeliac disease and hypothyroidism - and truly ill with ME/ CFS for the past 20 years (both the post-viral and the burnout kind).

Over the years I've had many tests, treatments, the works, from the NHS and alternative practitioners ('til I ran out of money due to not being able to work, and ATOS kicking me off Incapacity Benefit so that my husband is now struggling even more to look after us all).

I've pretty much been on my own with it this past couple of years, and it's only since I got fed up with my kind but misinformed GP regarding my thyroid levels plummeting again, came to Health Unlocked to get info and support on T3, that I've picked the baton up again and restarted my own research into improving my health.

About 15 years ago when living in London I had B12 injections and they helped greatly. I think I need a revisit - in fact, I know I do: after so much time it's frightening being more brain-foggy, etc, rather than less.

I need to get back in control of my health again!

Cheers,

Abi.

PS: Having looked at your profile it seems we're the same age, and both with two kids too!

[fbirder]

What makes you think you have a B12 problem?

Your serum B12 is nowhere near the bottom of the range.

Your MCV isn't raised and your RDW is low - so you don't have macrocytic anaemia.

Your symptoms could be due to many other things apart from a B12 deficiency.

You might try to get a private blood test for methylmalonic acid and homocysteine. If those are raised then that would indicate a possible B12 deficiency.

Otherwise I cannot believe that any doctor will prescribe B12 injections as there is no evidence that they might be required.

[Gambit62 Administrator in reply to fbirder]

although MCH is in the normal range and so is MCV the MCHC is slightly elevated which could be an indication that red blood cells are slightly rounder than they should be but it is only marginal.

[ChronicTonic in reply to Gambit62]

Thanks Gambit,

What do elevated MCHC and round red blood cells signify?

And how might one resolve such issues?

Many thanks for your patience!

[Gambit62 Administrator in reply to ChronicTonic]

macrocytosis = larger rounder red blood cells. So although your blood cells aren't larger they may be a bit rounder than normal but if so it is only marginal.

macrocytosis is a symptom of folate deficiency and of B12 deficiency but there may be other things that can cause blood cells to be rounder.

[ChronicTonic in reply to Gambit62]

Ok that's great information. The Folate issues with thyroid problems keeps coming up. Thank you.

[ChronicTonic in reply to fbirder]

Thank you for your lengthy reply - I appreciate all your points raised above.

My thinking regarding B12 is that in ME/CFS it is often a contributing factor to troublesome symptoms whether or not the levels are shown to be 'within range' (i thought I'd bookmarked the page with evidence of this, but apparently I hadn't!).

Secondly, when I have historically had B12 injections (around 15 years ago), the benefits have been palpable. I appreciate my blood results will have changed since then, but as my B12-deficient symptoms have regressed to be just as bad now as they were then, I thought it couldn't hurt to try.

Thirdly, I have been tested for the perimenopause (I'm 41) and am negative. But despite following all treatment recommendations for ME/CFS and Fibro in terms of supplements and meds, I can't improve my cognitive function and it's extremely distressing. The T3 thyroid meds have helped but plateaued.

With that in mind, being that I'm addressing the ME/CFS, medicating my low thyroid and working hard on improving all corresponding issues, the only option I have to address these very B12-deficient symptoms is with B12 itself.

I'm not saying B12 is necessarily the answer, but it's common for both women and those of us with ME/CFS to have issues with B12 levels, and since nothing else is working and I'm left swimming in treacle and floundering in mental porridge I felt it could help - especially given B12 was so wonderfully helpful in the past.

I wouldn't expect my GP to help with the B12 (he doesn't even believe in prescribing T3 for hypothyroidism for starters!) and am aware I'm very much on my own. That said, I would like to at least try to improve my debilitating symptoms if I can, and as I am taking care of every other possibility, the avenue currently left untreated is that of mildly low B12 levels.

Does that make sense?

[Gambit62 Administrator]

Ferritin is only one indicator of iron status - other indicators in the blood tests above aren't indicating an iron deficiency and your ferritin is in range.

Please be aware that you can overdose on iron and at the very least take some advice from a pharmacist if you really can't work with your GP.

As fbirder says your B12 levels seem quite good and although that doesn't guarantee that B12 isn't involved in the problems it certainly doesn't point to it as a major factor.

MMA and homocysteine - primarily MMA may help to clarify B12 status - as homocysteine will also be affected by folate deficiency.

your folate is at the top point of what is highlighted as a grey range in the BCSH guidelines

There is no clear consensus on the level of serum folate that indicates deficiency. Conventionally, clinicians have used serum folate lower than 7 nmol/l (3 μg/l) as a guideline because the risk of megaloblastic anaemia greatly increases below this level. However, there is a sizeable ‘indeterminate zone’ [between approximately 7 and 10 nmol/l (3 and 4·5 μg/l)]. Therefore, a low serum folate level should be taken as suggestive of deficiency rather than as a highly sensitive diagnostic test.

[ChronicTonic in reply to Gambit62]

Thanks for your input. Please clarify; the grey range means what - That my Folate levels are fine or only just ok? I don't know what to believe with blood tests anymore: there are so many discrepancies both between different countries and within the NHS itself!

Thanks for your concern regarding iron. Supplementing iron has hugely improved my health, but I have my eyes on that one, and will ask my GP for a retest soon (he's the one who prescribed me Ferrous Fumerate on my request).

[Gambit62 Administrator in reply to ChronicTonic]

test results need interpreting - grey range means that its the range where it is difficult to draw a conclusion based just on the result and you need to look for other information.

[ChronicTonic in reply to Gambit62]

Gotcha. Thank you