Ferritin Questions

[Monkharris]

Hi everyone. I self inject b12, 3x per week. I also take a daily dose of methylfolate. In the past both of these have been extremely low, along with very low ferritin. Of late I have wondered if my iron was dropping, so requested bloods a couple of weeks ago. Folate happily is pretty good at 19( at my worst it was 1.6). My Ferritin is 60 ( range is 30 -150), and what's interesting to me is looking back over my previous blood tests, last May it was 82, and in April 22 it was 105. So it is obviously on the slow decline again and I suspect is contributing to my high fatigue, and other symptoms - I look very pale at the moment and my hair is crispy). When I was first diagnosed, back in 2015, it was 20. At that point I was prescribed Ferrous Fumerate 210mg 3 x per day.

I am going to commence an iron supplement again, as although I am in range, it seems to be going the wrong way .

Can I ask any of you who supplement with iron, what you take, (fumerate/ suplhate etc)which brand if there is one you favour, and do you ever have breaks from your Iron supplements ? I am wary about taking it for too long, and I like to try to buy the most simple supplements with no fillers ( unfortunately Time Health don't do an Iron Supplement or I probably would have bought it). It is so challenging trying to get bloods from our Doctor and because I am in range, he won't be interested, but I can see the usual downward trend appearing again.

On the plus, last year my folate was 14, and so I commenced the methylfolate again and now it's 19 so pleased about that. Also, the GP said, and I quote " well your b12 will be sky high because of your jabs so we won't test that" ) - I get one every 8 weeks at the surgery. I thought that was unusual and quite positive compared to many people's experience on here.

I wish I could afford a private blood test, just for iron, say every 6 months - but I just can't run to that at the moment.

Sincere thanks in anticipation for any of your replies, help, suggestions and advice.

Warm wishes

Xxx

[Nackapan]

Mine stated at 60 .Then dropped to 29.

That's when I had symptoms.

To remain about 48 to 58 I take iron every other day.

Was taking ferrous fumarate 210mg

Now use spartone sachets

S multivit with 14mg in .

Also solgar gentle iron 20mg

I rotate .

I do get s blood test every 6 months now .

Was 3 m the 4m in the past .

On the NHS .

[Orchard33]

Iron/ferritin deficiency are treated as badly as B12D/PA. What my researches tell me is that we should be looking at a level above 80 to begin to eliminate the symptoms of ferritinD. So supplements are essential to increase your ferritin supply.Encouraging your GP recognised a high B12 count as being OK. I was very relieved when mine did too.

[Nackapan in reply to Orchard33]

Yes I was told 50-70 . So similar. Again everyone is well at different levels.

If only we knew what level when well

Same with b12 !!

[Orchard33 in reply to Nackapan]

Nackapan. I so agree. Have just discovered my ferritin level before the B12D/PA crisis identified in very late 2021. In 2015 it was 99. That's what I'm now aiming for.

[Monkharris in reply to Orchard33]

Looking back over my bloods, and my perception of how well I felt ( and looked)- I believe it was in the year when my level was 105. And the fact that I am struggling with a level that now is at 60, tells me I am probably a bit too low. I do have a bottle of Floradix here, so I may start with that just to get going. Really grateful to you for your helpful replies. Feeling alone in something can be damaging in of itself. X

[Orchard33 in reply to Monkharris]

Good idea to take the Floradix. I took the expensive nuclear option of a private ferritin infusion, I was so low. Already feel the benefit but early days. Doing the infusion privately meant I will get to speak with a sympathetic haematologist in April. Will post on the outcome then.

[Monkharris in reply to Orchard33]

I will be very interested to hear the outcome of the haematologist consult. Thanks again Orchard.

[Nackapan in reply to Orchard33]

Good you have a reference. The first ever one done for me was 60.On request!!

When first ill though so probably elevated from inflammation in my body .

I've never needed iron supplements before.

Not to my knowledge anyhow!

Always had a very good diet .

No diets ect .

One of my daughters also felt better when her ferritin hit 48 .

She had nothing else going on .

[Orchard33 in reply to Nackapan]

I too have a very good diet. I suspect it's and absorption issue. I'm also mulling over the possibility that there's an auto-immune aspect. Questions for the haematologist.

[Monkharris in reply to Orchard33]

That is exactly what I suspect in my case too. We eat fresh food cooked from scratch, with no ultra processed food. We always hit our 5 a day veg, somtimes more, as we get a box from Riverford which really inpsires me .I also cut out caffeine and sugar last year, this was all aimed at navigating the perimenopause naturally if I could. It is a source of constant frustration to me, that despite making so many financial sacrifices to eat organic veg, meat, dairy etc, and giving my all to healthy eating, that I am unable to make this aspect of my self well again .

[Orchard33 in reply to Monkharris]

Yes, it is frustrating to take so much care and it's not enough. The level here is biochemical and that if something is out of kilter at a cellular level no amount of self-care alone will fix it, although it does help. We have to get to the root cause. Quite a quest!

[Monkharris in reply to Nackapan]

Thanks so much for your help and insight Nackapan. I said to my husband last night I had a feeling you would reply, as you have mentioned your Ferritin issues before. Extremely grateful. As I said to Orchard, feeling alone and out of one's depth is not a great starting place for getting well. I am convinced there is often a serious difference between "being within range" and "feeling at your very best health wise". X

[Helliborous]

Hi Monkharris, I also have issues with iron deficiency my doctor only offers me ferrous fumarate even though I have issues with slow transit constipation for which I have had to pay for a gastro man to diagnose. My last test Nov 23 was showing high TIBC 83 ( range 45-70) and ferritin 11 ( range 11-307). The GP said it was satisfactory 😫😣😖I have been taking Better You iron sublingual hoping this will help without causing stomach and slow transit issues and I plan on having a blood test done privately. It surely isn't easy when you have to treat yourself. x

[Monkharris in reply to Helliborous]

Blimey, that Ferritin level seems completely unsatisfactory to me. I really feel for you as you must be so fatigued with Ferritin that low ? A private blood test must be the way to go, although it should not have to be this way. I am thinking I will save and opt for a private blood test in about 9 months to see where my levels are after supplements. I really hope you get some answers too. Xx

[Blod424]

This is very interesting.

Do you mind if I ask how you go about getting private blood tests?

I have no idea of any of my present blood, iron, B12 levels. My GP practice were barely willing to diagnose my PA, and it’s all been a bit of a slog (still is).

I would happily pay for a private test so that I know what my levels are and then I can go about trying to work out what to do to optimise my health going forward.

I am over 60 now, and try to avoid my GP practice as much as I can, as it is stressful and difficult to get appointments.

I am made to feel that I am wasting their precious time, especially if it’s for something like this, as I am not at “deaths door” if you see what I mean.

[Monkharris]

Hi BlodIf I were to go for a private blood test, there are two that spring to mind..

bluehorizonbloodtests.co.uk

Or

privatebloodtests.co.uk

I think they operate through Spire clinics, although some of the tests that Blue Horizon offer can be done in certain stores I think ?

I believe privatebloodtests.co.uk is quite new? But both services look good to me, and do not appear to require a GP referral for bloods.

I think it can be quite pricey, but I guess the question becomes " what price health"?

Anyways, hope this gives you a starting point. As an aside, I paid for a private minor procedure about 10 years ago, at a Spire Clinic, and the service was absolutely excellent.

Hope all goes well x