Need to have a rant about GP's attitude to Ferritin and B12

[Flowers2]

I've just had my 'normal - no further action' results back for ferritin and B12 - 'normal' only according to GP. Both are right at the bottom of the range and GP says all is fine even though I have been experiencing symptoms of both being low.

Every couple of years I get very low on ferritin stores and have to go on iron tablets. This has happened yet again so I've asked for supplementation. The GP took A LOT of persuading but finally agreed to give me 2 months supply of Iron tabs and B12 tabs. I told him that I've been taking B12 sublingually for 1 year now but my level has dropped still.

He really doesn't see it as a problem. I don't know what else to do. If I could do my own bloodtests I would treat myself but don't want to overtreat and so want the blood tests to check how I'm doing, so need his backing.

I've explained about hypoT people needing to be higher in the range and that with these two things being low it means my adrenals won't work properly. Get them working and I may sleep again and start to grow hair again or at least lose no more. My nails might not peel and my skin might be something resembling a human and not a lizard.

I have put off approaching the GP about this for months even though I was starting to feel the (now well recognised to me) effects of low iron because I knew what a fight I'd have on my hands. TSH - 0.3 (0.4-5.5), FT4 - 22.1 (11.5-22.7) and FT3 - 4.7 (3.5-6.5) I feel best when my TSH is 0.05 but thought that's another fight and if I can get B12 and ferritin sorted out then I may feel better without taking more thyroxine, which I believe contributes to hair loss, although I now see that this symptom has been removed from the leaflet in the levo box.

Rant over - thank you for reading. Does anyone have any ideas how to make sure I absorb the B12?

Many thanks

Ali

[helvella]

You might care to read an old blog and the comments:

thyroiduk.healthunlocked.co...

Am wondering what B12 tablets he has prescribed? Without checking,the only ones I know of in the British National Formulary are something like 50mcg - a sort-of awkward more than enough for the healthy but nowhere near enough for those with absorption issues.

Rod

[Flowers2 in reply to helvella]

Hi Rod. He said they are just standard. I can't get the script until later. Nothing else available on the NHS apparently!! He suggested I keep taking the sublingual B12 but I thought I should try something different as that didn't seem to make an difference. The GP just doesn't seem to acknowledge the link between thyroid and these other low levels of essential vits and minerals. Thanks for the link though. I'll read through it.

Regards

Ali

[helvella in reply to Flowers2]

The BNF has these:

Tablets Prescription-only medicines, cyanocobalamin 50 micrograms. Net price 50-tab pack = £6.24

Brands include Cytacon®

medicinescomplete.com/mc/bn...

Free registration is required.

Waste of space in terms of dosage, over-priced and cyanocobalamin is usually regarded as less desirable than other forms of B12. And BNF says that it is "not prescribable under National Health Service (NHS)"!

Rod

[nostoneunturned in reply to Flowers2]

NHS b12 tablets are cyanocobalamin, do not know why they bother.

If you want to raise your B12 levels using sub-lingual pills then perhaps you are not taking nearly enough plus methylcobalamin tabs or spray best.

If you care to wade through all my blogs on link below, where we all went a bit off-piste, you will be reading about my raising b12 from 167(180-800) to way above NHS serum range and how it was done plus background info. Good idea to have your folate tested

myrios.co.uk

do a combined B12 and folate test for £30

pasoc.healthunlocked.com/bl...

About the iron issue I really think it's for the doctor to monitor as excess (prescribed) iron is not good. Iron, B12, and folate all packaged together in lamb's liver, chicken livers, plus some in herring, but the body can deal with these as it can with food sources of most things we need.

[Flowers2 in reply to nostoneunturned]

Hi, thanks for the brilliant information. I do eat lambs liver nearly every week, chicken livers when I can get them and herring every now and again. I just don't absorb. I thought I might also take the stomach acid supplements. Folate was 18 (range 5.4 to 24) which is fine I think. B12 309 (210 - 910), up from the 243 it was this time last year but down again from last BT in August when it was at 311. Ferritin is 27 currently. Down from the 40 I'd got it up to last August from 5 that it was the year before. I don't understand how folate can be good but the others so bad. Aren't they all related?

[Hidden]

If you have been taking sublingual B12 for a year and your level is still dropping and right at the bottom of the range then your GP should have loud alarm bells ringing in his ears. What were your recent results (include folate if they did it)? As for your doc prescribing you the tablets, as someone else put it to me, they're about as useful as a tube of smarties!

You could go down the self treatment route as above, or you could go down the active B12 testing route, link below:

thyroiduk.org.uk/tuk/testin...

[Flowers2 in reply to Hidden]

Folate was 18 (range 5.4 to 24)

B12 309 (210 - 910), up from the 243 it was this time last year but down again from last BT in August when it was at 311.

Ferritin is 27 currently. Down from the 40 I'd got it up to last August but up from 5 that it was the year before.

I shall go down the self treatment route. Thanks for your advice on whats available. The prices are surprisingly good. I thought they'd all be several hundred pounds.

[Hidden in reply to Flowers2]

Yes your folate is good, if you're still worried about being deficient you can ask your GP to test red cell folate (it's a better marker for long term stores). Here is a link on folate deficiency:

patient.co.uk/doctor/folate...

Your B12 is not at a good level. Mine was around 300, I asked my Endo to do the MMA test and this was significantly elevated showing B12 deficiency at tissue level. So I was able to get the injections from my GP but I also self supplement as recommended by nostoneunturned. As far as I'm concerned the more B12 I can get into my system the better.

Just my personal opinion, but if you're happy to pay for self tests I would get the Active B12 test done now before you start self treating (make sure you stop any supplements you're taking before you do the test).

The benefit is you get it on your medical notes that you're B12 deficient, you've got the injections to fall back on if you're ever in a position where you can't afford supplements, and you can get your GP to investigate further for Pernicious Anaemia (IF antibodies, Parietal Cell Antibodies etc).

Once you're getting proper amounts of B12 into your system your levels should go way up, probably into the thousands. GP's don't like this as (in their blissful ignorance) they think you're getting too much. So be cautious about using the serum B12 test to measure your progress, it is irrelevant once you're getting proper treatment, it's your symptoms that matter.

[Flowers2]

Thank you everyone. I feel more confident about self treating the B12 now I know I can get the BT's done myself. GP has agreed to do a BT in 2 months - is that long enough?