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Can someone please talk to me about Ferritin?

(72 Posts)
Millierose20 Tue 31-May-16 19:30:19

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 Tue 31-May-16 20:54:18

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 Tue 31-May-16 20:55:07

by the way - mine was attributed to heavy periods.

DaughterDrowningInJunk Tue 31-May-16 20:59:55

Low ferritin will make you feel horrendous, unable to function, exhausted all the time, and brain fog. I am surprised they have given you a diagnosis of ME when your ferritin is so low. A level of 7 will certainly make you feel awful, and could account for a lot of your symptoms. Have you started taking iron?

Millierose20 Tue 31-May-16 21:16:48

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 Tue 31-May-16 21:20:47

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 Tue 31-May-16 21:23:24

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

DaughterDrowningInJunk Tue 31-May-16 21:24:11

Are you having heavy periods? Vegetarian? Drink lots of tea or cola?

DaughterDrowningInJunk Tue 31-May-16 21:28:41

I would go to a chemist and buy some iron tomorrow. Ferrous sulphate or ferrous fumarate. I think they are 210mg per tablet and you can take 3 per day. They are horrible things to take and can give you constipation or diarrhoea, but I think you should start taking them immediately. Once your ferritin is up a bit you can switch to a more pleasant type of iron but you need the heavy duty stuff for now. Take them with a glass of orange juice to increase absorption. I am just starting to come out of this now and it is a horrible thing flowers

GloriousSlug Tue 31-May-16 21:28:45

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 Tue 31-May-16 21:33:41

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 Tue 31-May-16 21:37:38

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

Millierose20 Tue 31-May-16 21:37:40

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 Tue 31-May-16 21:39:47

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 Tue 31-May-16 21:41:51

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

Utini Tue 31-May-16 21:43:20

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.

DaughterDrowningInJunk Tue 31-May-16 21:43:30

It doesn't have to be orange juice. A drink rich in vitamin c will help the iron to be absorbed, so apple juice would do if you can take that. You don't need to take the drink.

Are you doing anything to address the heavy periods? I am on the POP to stop my periods. I swore I would never go on hormonal contraception again but I find it agrees with me and I was getting nowhere with taking all these iron supplements without stopping the periods.

What was your b12 level?

Millierose20 Tue 31-May-16 21:44:10

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

WriteforFun1 Tue 31-May-16 21:44:58

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 Tue 31-May-16 21:47:10

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 Tue 31-May-16 21:50:09

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 Tue 31-May-16 21:51:24

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

WriteforFun1 Tue 31-May-16 21:52:27

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 Tue 31-May-16 21:52:31

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 Tue 31-May-16 21:52:53

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.

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