Please monitor Iron and others while being treated b12

[sbadd]

So after struggling since b12 injections in Jan, just had my doct retest iron which hadn't been tested since dec which was 16 normal range 10-30

Results just back it is now 8.6

Cant believe gps are not aware of things that need to be monitored after injections, thank god for this site as it was this that made me ask for another test, pretty much had to twist her arm to do test, no wonder my fatigue and body heaviness has continued for so long, fingers crossed i come well, thankyou to all on this site.

[Gambit62 Administrator]

The fall in iron levels is unlikely to be connected to the injections but is likely to be related to what caused your B12 deficiency - an absorption problem - and means that you are now receiving injections.

Not everyone who has B12 absorption problems develops problems absorbing iron / folate and other vitamins and minerals.

[sbadd in reply to Gambit62]

To be honest i haven't eaten well at all since my loading doses as suffered bad side effects, had tests for pa which were negative, is there any other tests my doct should have performed, as my daughters peadetrician tested her for the bug in the tummy via a stool sample, she had low b12 and iron and tested positive to partial cell antibody but neg IF

[Gambit62 Administrator in reply to sbadd]

your daughter was tested for h pylori infection - this is another common cause of B12 deficiency and the test results are much easier to interpret than the tests for PA.

Treatment for h pylori is a course of antibiotics

[clivealive Forum Support]

Hi @shadd I struggled for years (after my P.A. diagnosis in 1972 ) with iron deficiency. I would be given 3 months of iron pills and be "OK" for a while and the level would drop again and the cycle was repeated. Eventually I was referred to the Haematology department at Stoke Mandeville Hospital which told me I needed iron supplements every day for the rest of my life.

This, as Gambit62 says may have nothing at all to do with the P.A. but more to do with the gastric surgery I had in 1959.

Was your Folate level tested?

I wish you well.

[sbadd in reply to clivealive]

Last folate test was fine

[tomranson85]

I can totally relate. Started B12 injections every 2 days (due to neurological involvement: peripheral neuropathy, ataxia, tripping over, memory loss) in late December 2018, and my Ferritin was only 90 at that point (which I know in hindsight understand isn't great, anyway). After 3 weeks of injections, Ferritin was 55, after 5 weeks it was 40 and I felt like trash (although I had improved from the injections, I peaked after 3 weeks, but then went rapidly down hill!). I was becoming progressively and rapidly iron deficient after the B12 jabs started, however my GP still refused iron supplementation even with a Ferritin of 40. My Hb had started at c. 160 and was now 135 (not "terrible", but I felt awful). At that point in late January, and with my GP still refusing to see the light, I self-prescribed 3x 210 mg Ferrous Fumarate daily (c. 200 mg Iron equivalent (as per NICE)), and also added in supplemental Folate for good measure (15 mg Folic Acid daily as per NICE) as my folate levels were generally low-normal anyway. WHAT A DIFFERENCE THIS ALL MADE! I wasn't out of the woods yet, but I made a remarkable rebound within 4 weeks of starting iron and folate, ontop of the on-going B12. My GP then, eventually, prescribed me the iron herself for 2 months, but refused to acknowledge the folate had helped in any way. Sadly she discontinued my prescribed iron after 2 months on the grounds of my Hb having returned to 160 and Ferritin to 80 (still too low, and lower than I started at), however I know from recent private tests that my Transferin Saturation is still below optimal at 32%, whereas it should be optimally 45-55%. So I've restarted my self-prescribed Ferrous Fumarate again, and expect to continue it for another 3 months subject to retesting. I'm convinced my GP has her head buried in the sand, and both failed to see my need for iron, and also discontinued it far too soon. This is only the tip of the iceberg of my story, complications and supplements however. Sadly I now have very little faith in my NHS GP, nor in the 4 different ones I saw before her in the last 6 months. I've learnt so much (a lot on here!) and have largely taken matters into my own hands through necessity.

[sbadd in reply to tomranson85]

Yes my iron was fine in December now deficient and feel dreadful, only started tablets yesterday so hopefully ill see some improvement, but virtually had to self diagnose myself, also concerned to why that dropped within 3 months to that level as ive never had a problem with my iron??

[KimberinUS in reply to tomranson85]

have you considered h pylori testing? h pylori reduces stomach acid which causes iron and b12 absorption issues.

[sbadd in reply to KimberinUS]

Yes im going to have this tested, thankyou

[tomranson85]

It's such a sad state of affairs, isn't it? I even had to self-diagnose my B12 deficiency originally, and had a massive struggle to convince my GP to even test serum B12, "oh, you're young and fit, you can't possibly be B12 deficient!". And guess what, it came back low. I just can't understand the NHS at the moment. I can't even believe it's the cost of tablets such as Ferrous Fumarate that's holding them back... I only pay £2 online for 3 months supply of well-known pharmaceutical brand Ferrous Funarate tablets... And a monthly NHS prescription is over £9 now if I recall correctly, so surely the NHS are making an income from prescribing low cost items such as that (although currently I don't pay for them as I'm long term unfit for work and currently rely on benefits, as a result of all of this mess).

The only thing I can truly thank the NHS for in my recent memory, is for the care I received only yesterday in a local minor injury unit after having a nasty cycling accident. They put me back together with no fuss and a smile. We had a laugh and a joke. The overall experience was almost "fun", even considering the pain of having gravel washed out of various body parts! The total opposite of my experiences at the GP, which I dread every time (I even avoid going now). Long live the parts of the NHS that work (nurse led clinics), but heaven help the GP system, and frankly I haven't got any time for A&E either any more (both my GP and A&E missed my gallstones recently- "it's all in your head, it's just anxiety, have some diazepam" (that was after doing a CT scan of my KIDNEYS... Not even my liver), and I ended up paying £750 to see a private specialist in London to get a diagnosis via ultrasound and reassurance of my pain and abnormal liver function tests. Only to be told I should have my gallbladder removed, on the NHS... Go figure.