Can someone please talk to me about Ferritin?

[Millierose20]

Bit of a long story short - I was diagnosed with ME last year and have all the symptoms ranging from fog brain, hair loss, ringing ears, aches, fatigue etc.

Recently I have been having a pain in my left side. Dr first thought ulcer and put me on omarazepole. Then they said IBS and put me on FODMAP diet. While on holiday I couldn't stop burping so went back to Dr. Also in the meantime I had over 40 women check and mcv was high (it's always raised) and neutrophils low. My uncle is pernicious anemia so I asked Dr about this. He said bloods indicated that not anaemic but would check b12.

He checked b12 (normal) ca125 (normal) ferritin which has come back low (7) I have a Drs appointment in 2 weeks to discuss.

Could this be what the ME has been all along? What does it all mean? I getting a bit worried about internal bleeding and the dreaded c word.

I feel so rough right now. Aching and tired. Any help appreciated.

[coffeemachine]

when my ferritin (all other test results ok) was at 22, I felt awful. extrem fatigue, tired non stop, brain fog. I did not function at all. was put in iron tablets and got it up significantly and starts to feel human again.

was this not checked prior to your ME diagnosis?

[whatamess0815]

by the way - mine was attributed to heavy periods.

[Millierose20]

Thanks for the replies.
I was under investigation first for Fibro but then referred to CFS clinic but had to wait on a waiting list (personally I think they forgot me) and it was here I was diagnosed with ME.
Dr said last bloods were 2012!!! I think once there is the mere whiff of ME on your notes they don't delve any deeper. It's only because of this recurring pain on left side. Very frustrating. They have checked bloods just not these ones.

I so bloody annoyed to be honest because I have possibly suffered for
years when there was no need.
The amount of times I have said are you sure it's nothing medical as I refused to believe it was ME. All they did was make me out to be an over anxious fruit loop.

[whatamess0815]

I would make appointment sooner with GP to discuss. at 7 you must feel awful and you will need a decent iron supplement to increase your levels. took me several months. I would want to get seen sooner!

[Millierose20]

Thanks whatamess. I will try and get one sooner. They said soonest one for the same Dr. Ridiculous isn't it?

[GloriousSlug]

I had a ferritin level of 4 in January this year and felt shocking, I would cry with exhaustion, suffered brain fog, lots of aches and pains and felt very flat.

After a couple of months of ferrous fumarate tablets I started feeling much better and I truly feel like a different person now!!

Hope you get sorted soon op

[whatamess0815]

yes, if you cannot get seen sooner just get Ferrous Sulphate (200mg I guess). 3 a days. I had no side effects but I think a lot do. You can get it over the counter in the pharmacy. no prescription needed. hope you feel better soon!

[Haggisfish]

I have ferritin of 7. Get vitamin d checked-my level is also really low. Get full thyroid check, including for antibodies.

[Millierose20]

Aww thanks ladies.
No I don't drink tea and rarely have Coke. I do have heavy periods with clotting (tmi)
I used to take one iron tablet a day but now chemist are like gestapo and won't give it you.
Another complication is I seem to be allergic to oranges so that's a tricky one too.

[whatamess0815]

I never had an issue getting Ferrous Sulphate from the pharmacy. it's about £2/pack so my GP doesnt even prescribe it as it is cheaper OTC. I also get it sometimes from Amazon.

[Millierose20]

Really??? Ours are £5 now and they always ask you questions about have they been prescribed etc etc

[Utini]

Orange juice is recommended because of the high vitamin C content, if you can't have that then just take a supplement along with your iron. I think 500mg is recommended.

[Millierose20]

Thanks Haggfish. Do you feel like I do?
They checked my TSH it was low but still normal.

[WriteforFun1]

OP I don't know a huge amount about ferritin but I am anemic and when I am low in iron I can really feel it. I have issues taking the tablets - get stomach cramps.

i second a pp saying check Vit D as well, makes a big difference. Can't account for the pain in the side but you might be dealing with more than one issue. Sorry you're having all this hassle. Let us know what they say won't you?

[Utini]

Also worth trying to get to the bottom of why your ferritin is so low. If you have very heavy periods that could be the cause, otherwise it's worth looking into other possibilities such as coeliac disease, which can affect iron absorption, and underactive thyroid, which often goes hand in hand with low iron.

[Millierose20]

Thank you. Sorry I'm struggling to keep up and sorry if I'm not replying to you. I appreciate all your posts. Just my hands go numb

[Millierose20]

My TSH was low normal. I can find the blood test results from the women check.

[WriteforFun1]

also at one point I thought I had pernicious anemia and the symptoms are very alarming. You'll have seen this I guess but just in case

www.pernicious-anaemia-society.org/pa-diagnosis.php

Mentions serious problems and misdiagnosis

[Millierose20]

Is under active when you gain or lose weight? I always get confused. All I know is my hands are always cold. I can't lose weight and all the other stuff

[Pleasemrstweedie]

At 7 your ferritin is almost certainly below range, which should make you a candidate for an iron infusion to raise levels in one go, rather than struggling with oral supplements.

Be aware that a TSH test tells you very little and, if you are in an area where no further testing is done if TSH is within range, it will not pick up secondary hypothyroidism.

It sounds as if someone has been a bit hasty in diagnosing ME. I sympathise. The NHS diagnosed me with CFS in 2010 when I actually had a severe ferritin deficiency, a severe vitamin D deficiency, low vitamin B12, low folate and a failing thyroid. All fixed now and I am well.

[Corabell]

Do you have a print out of your blood results? It's entirely possible to have a normal b12 result but be miles off an optimal level.

I have read that omarazepole can mess up your ability to absorb iron from food - but I don't know if this is actually true.