Do I need an iron supplement?

[New144]

RBC and MCHC blood results - why, even though my levels are below the lowest end of acceptable range, is it saying “normal for this patient - no action required” ( diagnosed with PA 21 years ago, then aged 38). I have increasingly debilitating fatigue - 3-monthly B12 injections don’t seem to be helping. Daily confusion, palpitations, neuropathic symptoms and dizziness - feel like I have a hangover every morning even though I’m not drinking alcohol. I’m really fed up and concerned that nothing is being suggested by GP, as though it’s all just to be expected as part of the condition.

[Nackapan]

Young need more frequent b12 injections. I got my mums changed to 8 weekly which helps her alot.

As for iron,folate and vit D .

Often are low as slower absorbtikn.

Are thses okay in your blood results .

Dk you supplement anything?

Consider doing so.

Pass it by your gp if possible.

You shouldn't have to put up with so much.

Get

tested gor other things .

The menopause was my trigger .

This will exasperated symptoms too .

Don't be fobbed off as many women in particular are

[New144 in reply to Nackapan]

Thanks very much for your reply! My Vit D and Folate are OK (I take a high strength Vitamin D supplement plus Calcium as I have osteopenia) - not currently taking iron but think I ought to. I had Hepatitis A in January - it’s been a long slog getting somewhere near normal again and I’m wondering if that has just made everything worse. I had my latest B12 jab only 3 weeks ago and still have all the associated symptoms. It’s getting me down. I’m post menopause now but still on HRT. The joys of getting older!

[RachelP03]

I suspect you need more frequent injections. 3 monthly is default for the NHS after loading doses but everyone is different. Some people need daily, EOD, weekly etc. And a significant number of individuals learn to self inject and do it themselves because they don’t get enough from the NHS. High MCHC is indicative of low B12/folate. If on injections, also need cofactors for B12 to work properly so decent levels of iron, folate (5mg) and potassium. Have you ever had your thyroid tested properly too? That’s also usually misdiagnosed/mismanaged by GPs. You must educate yourself through books and these type of forums. Good luck!

[New144 in reply to RachelP03]

Thanks very much for your reply - I’m certainly going to look into the self-injection route. The only thyroid test the GP requested was the TSH - this came back at the lower end of the normal range but I often wonder as both of my daughters have hypothyroidism - I wouldn’t be surprised if I have, too. It’s so hard trying to get anything sorted through the NHS these days - I may get a private thyroid screen to check everything out. Thanks again - helpful to hear other people’s thoughts!

[RachelP03 in reply to New144]

The Cambridge iron clinic is helpful for both iron and B12. He also teaches how to self inject and where to buy from. If they have only tested TSH for thyroid, it isn’t enough. The TSH is produced by the pituitary so if the signalling is off, you could still have low levels of FT4 (inactive thyroid hormone) and FT3 (active thyroid). My mum was on T4 medication for years and kept going back to say she was still ill and they said her TSH was fine but actually her FT3 was on the floor. It was only when she went privately that this was dealt with. Monitor my health who are an NHS lab so your GP should accept results (code THYROIDUK10 for discount) do quite a good finger prick test option at home of all markers eg Thyroid (need both thyroid hormone plus antibodies tested), active B12, ferritin, folate etc etc. I like to privately monitor myself as my GP doesn’t test all these things! Good luck!

[New144 in reply to RachelP03]

Thank you very much for this -I’ll look into the thyroid tests - it seems absurd that the only test generally requested by GPs is TSH if it doesn’t give a full picture of what is going on! Frustrating that it’s necessary to do things privately to receive the treatment we need ☹️

[Orchard33]

I recognise your profile as similar to mine. Firstly, I simply don't understand why your GP is not doing more. Here are my suggestions from my own experience and from the action I've taken. I upped my B12 to EOD self-injecting after a year of delay accepting the NHS protocol. I was going backwards. I believe that inadequate B12 in the acute recovery stage is only minimally helpful to the deficient body. I had a ferritin infusion privately as I knew B12 alone was no longer helping recover, only maintaining where I was. I realized that, even though my ferritin and iron levels were a "normal result, no action required" they were minimal not optimal. Certainly not at the levels required for healing and recovery. PA people need optimal. Our bodies don't work properly. The ferritin took me to the next level and then I began to take iron, not the synthetic iron as instructed by my (private) haematologist, but heme iron which I can readily assimilate. Now I'm beginning to feel well again. Good luck on your journey. I hope this helps.

[New144 in reply to Orchard33]

Thanks so much for your advice - I think I definitely need to look into self-injecting as I am currently, as you say, simply maintaining rather than improving my symptoms. I hadn’t thought of a ferritin infusion - I will look into this. So glad to hear you are starting to feel better - long may it continue!

[phoenix80]

Have you had your ferritin level tested?

[New144 in reply to phoenix80]

Yes - I forget the level but it looked OK. Red blood cells were lower than bottom end of acceptable range and MCHC too, though.

[rubyone in reply to New144]

Mine were within range as well but when I spoke to the doctor about it he said it should be a minimum of 50. It would be interesting to know how you feel after a few months of you do decide to give iron a try. Wishing you good luck with whatever you choose to do.

[New144 in reply to rubyone]

Thanks so much - I’ll update when I’ve tried the iron and other things suggested! It’s heartening to hear that others are in the same boat and have found things to improve their symptoms 😊

[rubyone]

I have very similar symptoms to what you’ve described. I was diagnosed with PA in 2018 and just recently had my ferritin tested for the first time which came back as 22. I started a liquid heme iron product made here in the UK on my own and then six weeks later prescribed Spatone by my GP. It’s early days but I am feeling a bit better so will take this as a positive. 👍

[New144 in reply to rubyone]

Good to hear you’re feeling a bit better - hope it continues to improve for you 😊👍

[RachelP03 in reply to rubyone]

I wonder if you can share the liquid heme iron you mention? Thanks

[rubyone in reply to RachelP03]

Feroglobin Liquid Plus by Vitabiotics. It didn’t taste very good so I quickly ate a couple of raisins. 😂

[Hockey_player]

The math to decide that 3-monthly injections are enough seems to have been based on healthy people and did not take into account that with PA, the system for recirculating the B12 is broken. I think most people with PA need shots a lot more often. You might have to self-inject to get what you need. It is more convenient since you don't have to go to the doctor to get a shot. To avoid permanent nerve and spine damage and to return to normal energy levels, you need to find a schedule that keeps the symptoms at bay. I would start with every other day loading since you have so many symptoms. Then after awhile, try to space them out more. I get injections (from my husband) once per week because my symptoms come back in 3 weeks. Very best wishes!

[New144 in reply to Hockey_player]

Thank you so much - listening to what everyone on here is saying I think I definitely need to start self-injecting. Encouraging though that people seem to be improving after more frequent doses. I am cautiously optimistic that there is a way forward! 😊👍

[Hockey_player]

You can have PA and have no symptoms if you are getting B12 often enough! I play ice hockey with the guys (my age is 63) several times per week, love dancing and ski in the winter. Please find a way to get more B12 before you have permanent damage.

[New144 in reply to Hockey_player]

🙏❤️

[LauraJane2]

I agree that it sounds like you need more B12 but personally I would try pushing your GP for more injections if you haven’t tried already, as some will do it, particularly as you have neuro symptoms so should be getting more - I’m sure someone can link to the relevant NICE guidelines.

Apologies if you have already tried.

[New144]

Thank you - I think I’ll get an active B12 test done to present the GP with some evidence. He doesn’t seem very informed about the associated symptoms, sadly - as I’d had my regular jab recently he was dismissive about the possibility of the lack of B12 being the root cause. I will keep trying!

[Hockey_player in reply to New144]

If you have PA, the guidelines say that B12 should not be tested. If he does not realize that most people with PA need B12 more than once per 3 months, he is not well-educated on the condition.

[New144 in reply to Hockey_player]

Sadly I don’t think many GPs are well educated about B12 deficiency - it’s as if they expect you to be absolutely fine if you’re receiving injections 3-monthly.I’m sure he thinks I’m a hypochondriac ☹️Very frustrating!

[Hockey_player in reply to New144]

There was a link to a really interesting talk posted recently. The doctor had a hard time getting to the bottom of the once per 3 months rule. It is probably adequate for someone like a vegan who does not have PA. For someone with PA, it is not taking into account that the system used for recycling the B12 in the body is not functioning properly. It was based on some math for people where that system is functioning correctly. So it is probably too low for people with PA.

[New144 in reply to Hockey_player]

So sorry - only just saw your reply! It makes perfect sense that it is harder for people with PA to process the B12 in their system in a useful way than those with a dietary-related deficiency. I’m really frustrated that GPs on the whole don’t seem to have grasped this fact. It would be so nice if they were better informed in order to help patients manage their symptoms!