Feeling ghastly - Iron?

Hi everyone

I have struggled to get my iron/ferritin up over the past year and latest bloods showed iron 9 (6 - 26) which no one seems worried about as it's in range, Ferritin is 45 ( 39 - 150) . However, the trend since last March when I first got bloods was for my Mean Cell Volume and MCH to keep falling, even though all RBC and heamoglobin/HCT are in range. MCV is now almost very bottom of range but MCHC is over range. I have no clue what this all means but feel anemic. Just ten minutes ago I got off chair and felt like my legs were going to give way. Shakey, weak and I had to sit with head between my knees. I feel kitten weak. Thyroid seems fine.

Wanted to ask if anyone knew what iron deficiency anemia felt like, if it's what I think it is.

24 Replies

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  • What are your b12 levels like?

  • I was going to ask the same as B12 deficiency can have similar affects.

  • B12 is over range ssarastella and I take Readisorb under the tongue. MCV should be raised if B12 is deficient so I am sure it's not that, for a change. I wonder if my adrenals just crashed. i went to see my (fab) endo on Friday and standing in front of me was the old endo who left me so ill for six years, denying every symptom was thyroid related. I'm afraid I got wound up and asked my new endo what made him refuse to test me for anything all those years. Of course he said he couldn't possibly comment.

    Feeling a bit better after a gluconse drink and some salt. God I loathe this illness.

  • Readisorb make more than one product - I assume B12?

    Have a look here:

    labtestsonline.org/understa...

    Have to say, I am wondering if there is some form of haemolysis going on - i.e destruction of red blood cells. Inevitably, anything I point you at could cause concern, but you are already worried. Don't take this as a diagnosis! But have a look here:

    ncbi.nlm.nih.gov/pubmedheal...

    If it is anything like that, you need to see someone who understands - please don't leave it and rely on what you are already taking, or hope it simply gets better.

  • I forgot to say, new endo said it was unlikely my adrenals were giving me the symptoms as all tests last endo done would have flagged them up. I took some pleasure in telling him last endo did no tests, nada, in six years. So, the useless short synacthen test is next week. Will send off to Genova for the saliva test too.

  • This is a link re high levels of B12 and pernicious anaemia

    pasoc.healthunlocked.com/qu...

  • Thanks everyone. I don't have dark urine or shortness of breath, am a bit pale and shaky/weak. It came on so sudden. As I say, the confounding thing re B12 is, my MCV would expect to be high and mine is low, so I don't think even me supplementing with Readisorb B12 spray would alter that, or would it? Is iron of 9 ( 6 -26) particularly low?

  • No - they are not desperately low iron numbers, but very definitely could be higher. But if you are only at that level after a year of struggling, then we have to ask why?

    Red blood cells typically have a life of around 120 days. So it takes a while before MCV shifts significantly even if your B12 goes from low to high almost instantly.

    I am concerned for you - what you have described is not by any stretch of the imagination "normal" and really does need looking at.

  • sorry, range for iron is 6.6 - 26 and I am 9.

  • I'm on phone to nhs 24 will report back x

  • I wholly agree with you trying that - and hope it helps.

  • The doctor on phone implied it would be a waste of time going to out of hours as they cant do bloods there at this time of night. She said I could go over for a check up . I read her my latest labs and the usual, it's not anemia if your hemaglobin and HCT are in range. I don't know if going over there will help really. I really do think it's my adrenals and have taken lots of Vit C and adrenal support tablets. Feel weak still but not shaky. I have had a few crisis this week and maybe this is it taking its toll.

    There is an A&E right next to my house so I will head over there should it come back.

  • What about your folate? S x

  • I had severe Anaemia ( haemoglobin 8 and ferritin 5) last year, along with myxedema coma. It was hard to tell what was causing what but I had tongue wasting, restless legs in bed, shortness of breath, could barely stand and walking a few steps was like climbing a mountain. My legs felt like lead weights.

    I take 600 mgs of ferrous sulphate every day on prescription and have done for 18 months. I'm a lot better now my levels are up.

  • My folate is top of range ssarah. I still feel weak, magaged to take my son to school but am back in bed. I will see if I can get an appointent with my gp today.

    I know the feeling you describe Flutegal. I had that when I was severely hypo but this feels different. Legs don't feel that heavy, dead way anymore, just like jelly, as though they are without blood. As do my arms.

  • I do hope you get to the bottom of this soon Lala. Please keep us posted :)

  • Vitamin D level might also be worth investigating, especially if you're not taking supplements. This time of year is when your level is nearing it's lowest unless you're fortunate enough to have been on holiday to a warm sunny place recently!

  • Well it's funny you should mention that RedApple as I haven't had VitD tested in a while and last time, July, it was 82. I have seen no sun since then (scotland) and will get it checked tomorrow. I take Adcal D3 daily as I have no parathyroids and lose calcium constantly so maybe it could be related.

    Doctor was not a lot of help. He said he would be happy with the bloods I showed him, said iron supplements would just leave my body if my stores were ok and Ferritin of 45 was ok. He didn't seem concerned that my MCV has fallen all year and is now at the bottom. Just before I went in to see him, I was telephoned by hospital to say come in for Short Synacthen test tomorrow morning, if I feel vastly better after the injection, I think I will have some sort of answer. My GP said it could be viral. Aint that always the case, their default answer.

    Thanks so much everyone for being here.x

  • The ratio of D3 to calcium in Adcal is not sufficient to keep your D level topped up at this time of year. I would most certainly get D tested asap. Your GP *should* do it, especially being in Scotland ( scotland.gov.uk/Topics/Heal... ). Alternatively, a reasonably priced private DIY test is available from vitamindtest.org.uk

    If parathyroid function was normal, I'd be tempted to start supplementing with D3 immediately, but in your case, probably wiser to get your level checked first.

  • It sounds to me as though you might be heading for iron deficiency anaemia but haven't quite got there yet. The human body works so hard to keep things going that it take a long time for problems to show up in a test.

    I think that hypotension (low blood pressure) and reduced circulation at your extremities could be the body's way of compensating for not having enough blood in you to work properly. You sound quite light headed, which could be from very low blood pressure.

    The reduced circulation can cause hypoxia (not enough oxygen) to the peripheral tissues, which can mask the effects on haemaglobin in the early stages. Hypoxia raises MCHC (the amount of iron in each red blood cell) and will also send signals to the bone marrow to make more red blood cells, which keeps haemaglobin levels up for a while.

    This is my own theory put together to explain what happened to me. Your situation might be different.

    In my case when my iron levels were at their very worst, my haemaglobin was at an all time high. But I looked blue and felt weak, especially after a period. I was also very, very cold and my toes were purple because my circulation had shut right down. I had postural hypotension, but that is fairly normal for me. And my hair was falling out.

    I say my iron levels were bad for the simple reason that taking iron made me feel better and nothing else changed very much. The blood tests didn't show any of it though. My ferritin levels were on the floor throughout and actually fell while I was taking the supplements (from 19 to 14 to 12).

  • Hi lala - just wondered how you are feeling now? Hope you are feeling a bit better xx

  • Hi Clare, feeling a bit better now thanks :-) It was truly hideous. I was interested in what you wrote poing as it sounds similar to me although I don't have low blood pressure ever. I have just had a period and do feel much better when I take iron. It's usually liquid iron with C and honey but I stopped it last week to see what happened. Maybe it was a bad idea!

    Having said that, today on the school run, I felt the base of my spine creak and think it could go at any minute. During a massage the therapist told me my lower spine was fusing at one section and I wonder if that can cause the bizzare feeling that no blood is getting to my legs or arms.

    Will see how tomorrow goes with the short synacthen test.

  • Thought I should update this question and thank you all again for your help.

    The short synacthen test was a waste of time as I thought. I saw my GP who agreed the trend was probably for me becoming iron deficient although she didn't prescribe anything. I went back on to my iron supplement and increased my B12. I feel heaps better, stronger and with more stamina. Of course, I now have no idea if it was the B12 or the iron that helped as I took both but I no longer care ;-)

    Also had physio for my back and the guy was a genius. It was very embarrassing as he was young and gorgeous but he pulled out a measuring tape and MEASURED MY STOMACH ;-) Still blushing a fortnight later but hey, my pelvis is re-alligned now. x

  • lol! My mum had a Dr out to look at her extreme piles!!! when we were on holiday in Turkey. He was GEORGEOUS!!! Soooo embarrassing! lol!

    x

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