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.

My ferritin was 7.9 18mths ago, I gradually got it up to 23.9 over the course of a year and felt so much better.

Unfortunately I made the silly mistake of thinking I was fine and giving blood in January which has resulted in it being down to 13 again now.

The hard work of building up is now starting again. It will be worth it though.

Good luck.

Oh no, Blimey. Do you feel ropey again? Hope it doesn't take as long to get it back up. Thank you

My ferritin was 3 in feb but I had no symptoms at all (routine check up). I was actually skiing 6 hours a day when I got the results. Apparently as my Hg levels were fine, my reserves weren't being called on. I've had very low ferritin before and never had symptoms, had scans for fibroids, tests etc but no cause found.

I do take an iron with added vit C supplement now though. Just saying that low ferritin level doesn't always have symptoms so there's a slim chance yours could be something else.

Yes I do feel a bit ropey again, just very tired. Out of interest my haemoglobin level is fine (for the first time in my life I am not aneamic due to taking all the spatone, as I can't tolerate iron supplements I have been on/off aneamic for 20 yrs prior to this).

I am now on double doses again! My increase in levels was slow as I just took 2 spatone a day as my stomach is not good on ferrous fumerate or ferrous sulphate. The GP was happy with the rate of increase.

Good luck!

Thanks Myfriends. Crikey 6 hours skiing!!!
It's strange as some days I have a lot more energy. I've always put the bad days down to flare ups with the ME.

Blimey, sounds a good understanding Dr who is willing to go at your pace. Did they never offer transfusions then?

Nope-too expensive I think!! I also wouldn't have wanted one in case I ever manage to give blood in the future. There is so much research suggesting fibro and me may well be related to thyroid issues. My mum had me but she has recovered really well. If she overdoes things she gets really tired but you wouldn't know otherwise.

Yeah with me, Haggis, it's all the other stuff that is an issue. Hair loss, sinus/ ear issues etc. Good to know about your mum.

Oh and the pins and needles in my hands are hard work. It's stopped me being able to knit etc which I love.

No I was never offered a transfusion. I don't think it is viewed seriously. I had one GP tell me for years that my iron stores were a bit low but not make any suggestions for it.

Then one day I got a decent one who gave me mefanamic and tranexamic acid to help with the periods and decided to actually monitor me and try to do something about it.

I think it all boils down to money. It's false economy though. If they had done proper bloods in first place on me. I wouldn't have to keep going back to the Drs and regular appointments at ME clinic. Not to mention different drugs we have tried to rule things out.

Just remember another weird symptom I have. Bruising on my eyelids and at the sides. Dr said he didn't have a clue what it was

It's all very well saying that your Hb is OK, so although ferritin is low it isn't a problem, but if you suffer trauma, or there is another call on your Hb, which is circulating and available, and you have no iron stores (ferritin), then you are in deep do do.

Two years ago my ferritin levels were 4. I felt absolutely terrible and couldn't get from one end of the day to the end without a nap. HB was normal. I'm also hypothyroid and have low neutrophils (have done for years).

I'm not sure what they are now but my energy levels are much better. I eat a lot of iron rich food - black pudding, liver, mussels, and try to do this 3 times a week, washed down with orange juice. It's worked better for me than iron supplements which I think my body just doesn't absorb well. I think they give me nosebleeds too.

You can make simple dietary changes such as drinking orange juice and eating red meat and getting some low iron supplements at the supermarket, while you wait for your next appointment.
Am amazed they would dish out a diagnosis of ME without doing bloods first. It must be upsetting for you.

Hello. I was wondering if anybody knows - can an iron deficiency cause heavy periods? I know heavy periods can result in low iron, but does it work the other way round? My doctor recommended a coil to address heavy periods (not keen), but since taking large prescribed does do iron daily, my periods are much better. Is this a coincidence?

No iron deficiency can't cause heavy periods.

bon, I read somewhere that low iron can cause heavy periods. its a bit of a vicious Circle. not sure if that is actually the case as with many things online. but my periods are definitely less heavy since bringing my iron/ferritin levels up.

"Am amazed they would dish out a diagnosis of ME without doing bloods first."

Very common I'm afraid. I saw an endo who clearly wanted me to be diabetic, but when I passed my glucose tolerance test, he immediately diagnosed me with CFS/ME and discharged me although my ferritin was on its knees, my vitamin D was 10 (>50), my vitamin B12 was below 500 and my thyroid was clearly failing.

If I had accepted that diagnosis and just gone home, I don't know where I would be now. Instead I have dealt with each and every one of those problems pretty much by myself and am now fit and well, but it's no thanks to the NHS.

Re heavy periods. The section on Iron is particularly helpful:

www.marilynglenville.com/womens-health-issues/heavy-periods/

No they did do bloods but back in 2012. Then I was referred to a rheumatologist because Dr said I had most of the points they press in fibro. Rheumi barely touched me but ruled it out. So Dr then referred me to CFS clinic.

I thought I would give a little update on this as I've not seen the Dr. Not much to report really was hoping he would give me magic tablets and tell me I don't have ME at all.

Instead he said the tiredness will still be the ME and to get some over the counter iron vitamins and eat more spinach.
I even asked and said could this be why they diagnosed ME. He said no.

He just explained about stores and if carried on I would be anaemic

I mentioned about coeliac and crohns but he said I had a coeliac bloods done in 2012 and they were okay. But I remember the Dr at the time said they were inconclusive as I had stopped eating wheat at the time