Severe iron deficiency with high feri... - Restless Legs Syn...

Restless Legs Syndrome

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Severe iron deficiency with high feritin levels!

58anniem
58anniem

Just had results from private Dr blood test (as so desperate to try and feel better and have been told my feritin in 290 but I have severe anaemia and need intravenous iron! This Dr told me that GP's generally don't test for iron, just the feritin level (is this right)?...and as mine has been high they haven't tested any further. I have been suffering/diagnosed with severe RLS & PLM & CFS & fybro for years and years. Am shocked that maybe all my symptoms could have been sorted years ago with iron. Have read so much about iron levels and always thought mine had been checked. Has anyone else been in this situation and do you think IV iron will solve my symptoms? I now have to ask my GP for a referral to haematology via NHS so hoping this wont take long. Private Dr will send my GP a letter. I was told by the private Dr not to start iron sups yet as this will give a false reading when the haematology take my bloods. Also any ideas why my feritin levels are so high at 290 when my iron levels are severely low?

40 Replies
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Hi,

very unusual to see a high ferritin level with low haemoglobin.

The only possible explanation I can think of is that the high ferritin is due to inflammation.

Hi Annie, I agree with Manerva. But, I am not a haematologist. Would you mind sharing the values? I assume you did get them.

58anniem
58anniem in reply to LotteM

Will add them to new post as can’t seem to add this way!

58anniem
58anniem in reply to LotteM

HAEMATOLOGY

HCT 0.415 0.33 - 0.45

MCHC (g/L) 342 g/L 300 - 350

BIOCHEMISTRY

Active B12 62 pmol/L 25.1 - 165.0

IRON * 5.4 umol/L 6.6 - 26.0

T.I.B.C 58 umol/L 41 - 77

TRANSFERRIN SATURATION * 9 % 20 - 55

FERRITIN * 298 ug/L 13 - 150

Optimum Ferritin level for females : >27 ug/L

Red cell folate 650 nmol/L 285.4 - 1474.7

<340 nmol/L is associated with folate deficiency.

LotteM
LotteM in reply to 58anniem

Hi Annie. Indeed, serum iron too low and ferritin actually quite high. I had something similar a year ago, although my ferritin was much lower than yours. Anyway, just wait and see whether the IV iron will make any difference to your RLS. Keeping my fingers crossed for you!

PS Edit: your saturation is also rather low. I hope the private doc makes an urgent case to your GP

58anniem
58anniem in reply to LotteM

thank you LotteM, I hope you got relief when you had the same.

LotteM
LotteM in reply to 58anniem

Unfortunately I didn't.

58anniem
58anniem in reply to 58anniem

Im sorry to hear that, did you have IV iron?

LotteM
LotteM in reply to 58anniem

Yes. I did. A year ago today.

Manerva
Manerva in reply to 58anniem

As Lotte says both your iron and transferrin levels are low and the latter may be because of the former.

I've read recently that IV iron infusions can be effective in 60% of cases.

How successul this is depends on how much iron can get across the blood brain barrier, (BBB) as brain iron deficiency is a causative factor in RLS.

I've also recently read that BBB iron transfer is limited if Haemoglobin (Hb) is low. As your iron is low, then Hb will be. The IV infusion therefore will probably have to raise your Hb level then before it can start to increase brain iron.

Have you had your Hb tested?

LotteM
LotteM in reply to Manerva

Sharp question Manerva. I knew I was forgetting something.

58anniem
58anniem in reply to Manerva

No the only test I have had done was the one I’ve shown - what’s the hb responsible for? thank you for your interest

Manerva
Manerva in reply to 58anniem

Haemoglobin is the iron containing molecule found in red blood cells, (RBCs). These molecules are the ones that carry oxygen about the body.

"Iron deficiency anaemia" to be exact is a lack of oxygen carrying capacity of the blood (anaemia) due to a lack of Hb (iron containing molecule).

For men, the normal Hb level is 13.5 to 17.5 grams per deciliter. For women, 12.0 to 15.5 grams per deciliter.

Anything less than this (despite a high ferritin), means you have iron deficiency anaemia.

Oxygenated Hb gives RBCs their distinctive colour. If the cells don't contain enough Hb then they are paler than normal, hence this is also called hypochromic anaemia. Someone who has a signficant lack of Hb will look pale.

58anniem
58anniem in reply to Manerva

That’s very interesting and I’m so grateful. It seems this might be responsible for so many of the symptoms making me feel so ill. I just hope that when I speak to my GP on wed am that I don’t have to wait too long to get the IV iron. In this case do u think it’s urgent enough to speEd it through? .... I feel sooo week and breathless all the time

GrannyE
GrannyE in reply to 58anniem

The lack of iron could account for your breathlessness. It could be your haemoglobin is low leading to the red blood cells not picking up sufficient oxygen from the lungs and the cells in the body demanding it in order to function. This puts a strain on the heart trying to pump sufficient oxygen to them and this then leads to all sorts of problems. Did so in my case. Heart permanently damaged.

Question is why lack of iron uptake? In my case it was lack of stomach acid needed to metabolise it. This was due to me being prescribed omeprazole to protect the lining of the stomach. They hand this out like sweeties Some people really need it but for people like myself it leads to severe anaemia etc.

Simple test to see if you are anaemic. Look at the colour of the skin round the eye when you pull the inner corner down. It should be a healthy red. I.e. oxygenated.

Good luck at least you now have a way forward which is positive.

58anniem
58anniem in reply to GrannyE

Thank you so much, these are all great informative things to help me understand - it’s scary but also I’m so glad that as you say finally things might change for the better. So sorry to hear you have permanent damage. I do hope you have found a positive way forward too. The whole reason for me going to see a private Dr in the end is because I am so fed up of all the assortments of smarties that have been prescribed in the past which only ever help for a few weeks then the side effects take over! ... my inner skin round my eyes is very place and the lid (where u put eyeliner) is almost white.

GrannyE
GrannyE in reply to 58anniem

That just shows how anaemic you are. It should be a healthy red colour. As others have said you need to have your infusion fairly quickly. Meanwhile whenever you eat foods containing iron it helps if you eat something with vit C because that can help with absorbing the iron. Do not eat foods containing magnesium at the same time as the ones containing iron. Magnesium is vital but should be taken or foods containing it should be eaten at a different time of day from the iron. You can find all this information on the web. I have my iron pills at breakfast and my mag at night. Both are absorbed better with Vit C.

Drinking with a meal can dilute the stomach acid. Tea hinders the body utilising the iron so have your cup of tea about an hour before the meal or about 2 hours after the meal. There are other drinks, infusions and herbs which are very good for you but which do likewise. Again check it out on the web.

You can check your stomach acid in a rough and ready way by drinking water with bicarb first thing in the morning and waiting to see how long it is before you burp. You can find all the info on the web as to how to do this. The older you are the more likely you are to have less stomach acid. My gastroenteroligist completely missed it - just charged me lots.

Good luck and as I said at least you now have a way forward.

You must ask WHY and what you have done, or has been done to you to get you into this state.

Do let us know how you get on.

58anniem
58anniem in reply to GrannyE

Thank you so much, very helpful, yes I will let you know how I get on x

Mijmijkey74
Mijmijkey74 in reply to 58anniem

You need to pull that lower lid where eye liner goes right down and look at the inside colour of that lid that your eyeball rests against. It should be red red/bright fuchsia not pale pale pink or white.

Manerva
Manerva in reply to 58anniem

If you've been told you have severe anaemia and require an I V infusion, then it does need to be done fairly quickly.

You may be feeling weak and tired, lacking energy and getting out of breath easily You may look pale and feel cold.

If you've had it for some time, your fingernails may have become spoon shaped.

It could explain your RLS symptoms.

It's surprising that your anaemia has become so severe.

Hence, not only should you be getting the iron, you should be investigated for the cause of it.

If there's no obvious cause, then medical investigations may be needed. On the one hand there are several possible reasons for you not absorbing enough, on the other hand several possible reasons why you may be losing blood.

As it's also unusual to have anaemia with a high ferritin, you may have some inflammatory condition. Inflammation can cause a raised ferritin test result. If you have any intestinal inflammation this could also interfere with iron aborption.

It does sound like your GP has let you down significantly, I'm sorry. Hope you get to see the haematologist soon, but in the meantime you might want to discuss with a GP, WHY are you anaemic.

I'm sorry, I'm not sure what you mean by CFS.

58anniem
58anniem in reply to Manerva

Thank you for such a great reply. Chronic fatigue syndrome. Yes I will ask for investigations once I get a contact with the Haemotology dept. I had a hysterectomy age 32 (now 53) so havnt lost blood that way for a long time! Did have a bout of nose bleeds about a year ago and prob only get one now about 2-3 times a year.

I will update as soon as I have some news

Manerva
Manerva in reply to 58anniem

Chronic Fatigue Syndrome is an entirely different matter, also known as "myalgic encephalomyelitis" or ME. This often follows a viral infection - nothing to do with anaemia.

The symptoms of anaemia are due to a lack of oxygen which is needed for energy. Not enough oxygen, not enough energy.

If your anaemia is due to blood loss it does need to be investigated especially as you have had a hysterectomy - this is really important.

Have you noticed any other symptoms?

58anniem
58anniem in reply to Manerva

I only mentioned fybro and cfs as these are what I was diagnosed with years ago - never been told I had low iron and as I don’t bleed I didn’t think about it. Assumed my iron had been checked by gp. Both the diagnoses from before are due to similar symptoms so guess they are probably mid diagnoses and the anaemia has been responsible for many years?!

Manerva
Manerva in reply to 58anniem

If you haven't been tested for anaemia for years then you may have been suffering anaemia for years without knowing it If you do have CFS then you might have thought all your symptoms were due to that.

Which makes me wonder, do you really have CFS?

Anaemia can be caused by chronic blood loss. This can occur without you even realising it. e.g. due to bowel cancer.

There are other causes of chronic blood loss, that's why, if you are severely anaemic, sufficiently enough to requite an infusion then it neefs investigating.

I can't help wondering how competent your doctor is.

58anniem
58anniem in reply to Manerva

Exactly Manerva, my sentiments exactly. That’s why I went to a private Dr in the end. I prob have never had fybro or cfs.

I will let you know how I get on and I thank you sincerely for your help and for caring

Manerva
Manerva in reply to 58anniem

OK, take care.

Alison7
Alison7 in reply to 58anniem

I would advise that you ask to see a Haematologist to interpret all this & maybe even have bloods repeated.

I think it needs an expert in the field to assess & explain.

What field/qualifications does the private de have/ what country?

58anniem
58anniem in reply to Alison7

Yes am hoping for a referral to Haemotology asap. I’m in south of England. The private Dr. is a GP and specialises in women’s health. She has highlighted in one visit and one check up to give results something that it seems has NEVER been checked by my regular NHS GP. - I can’t understand that with the symptoms I have been seeing him with For over 10 years and a diagnoses of CFS & fibromyalgia that he wouldn’t have done a complete iron test before!

Although I am not in a financial position to see a private Dr I felt desperate enough to as I feel like I am getting worse all the time

Alison7
Alison7 in reply to 58anniem

Sounds horrible. I was a GP and my husband a Haematologist. As a GP I would have had no idea how to interpret these results & whar would be needed. I have severe RLS by the way, no answers here for that even with some knowledge.

One thing I sometimes used to do, and it seems more relevant in these difficult times, was to phone a consultant & discuss results. Might not need to be face to face for lab based query. He/she might want to see results from own lab though as not all the same & might advise on what would be a good idea to retest. Often for less run of the mill tests consultants like to give the ok for testing as can be expensive & one has to be able to interpret results. Not all might be relevant. Good luck!

Would be interested to learn what the outcome of it all is

58anniem
58anniem in reply to Alison7

Thank you Alison, that is interesting. I am so sorry to hear that you suffer so badly too. I do hope you get answers soon.

As I can’t afford to stay private, the private Dr has told me to ask my GP for an urgent referral to NHS Haemotology dpt for an IV infusion. I would imagine that the H dept would want to run their own tests too. I have a tel appt with my usual GP on wed and hope to get the referral done then.

I will come back with updates.

I thank all of you so much for all replies here, it is so nice to know there are others out there who understand ☺️

Mijmijkey74
Mijmijkey74 in reply to 58anniem

Can I ask how you went about finding a private and trust worthy doctor? My GP consistently repeats the same blood tests on me over and over and always results come back normal. I feel and know something is being missed. Have recently been told by NHS neurologists receptionist who read out the report to me that my brain MRI came back normal no structural abnormalities but that 2 small foci of micro hemoral in right frontal parietal region are present, and we're present in previous brain MRI in 2019. Have been seeing the neurologist for walking issues, whole body shaking and severe lower back pain which causes extreme fatigue when walking as had to learn to walk again after extreme muscle wastage from having been in a induced coma in Jan 2018 leaving hospital in the February. I had nerve conduction studies done on the same day as the brain mri. Nerve conduction specialist told me there and then nothing wrong with my nerves despite my legs visibly jumping up and down and twitching. He even tried implied I'm imagining/making it up. I don't waste my money on train fares to visit out of county hospitals and exhaust myself for the hell of it. My feet get extremely hot, can't sleep, legs must be apart not touching anything that warms up, and they constantly twitch & jerk and feel extremely uncomfortable. I have a vibration that goes through my whole body. I fall asleep just momentarily before my body jerks awake and my hands are doing actions of daily chores & tasks when I'm not doing or holding anything. The neurologist is trying to say the 2 small foci are not related to my shaking and walking issues as present in 2019 MRI. I had the symptoms in 2019 and 2018 after my coma. So definitely do point to me towards being the cause or part of it, and she should be looking at MRI I had done prior to 2018 to see if those 2 small foci were present then. As if not then definitely the cause of my symptoms. I'm not sure if I have RLS or something similar, but my own GP doing the same blood tests over and over has resolved nothing. I am also brittle asthmatic.

58anniem
58anniem in reply to Mijmijkey74

My goodness you are suffering. I am so sorry for you, you must be living a hell.

I was recommended the private Dr from a friend who also has fybro.

I’m sorry as I am not medically minded at all I wouldn’t know how to advise you to find one. I am in UK but would always assume recommendations is best.

I hope and pray that you can find a new Dr/consultant that can help you get your Quality of life back.

Best wishes to you

58anniem
58anniem in reply to LotteM

Have copied them for you, sorry if the format isn't easy to read. I'm not very good with computer things! - also not medically minded at all so it really is gobaldy gook to me - I 'm just wondering how seriously my GP will take it and how long I might wait to get an NHS appt in Haematology - feel excited that there may be a route away from this horror that is RLS and very annoyed that it seems it wasn't checked by GPs for years.....

It's good they tested your iron saturation, which was too low (Dr B says needs to be above 20%), as mine is never tested despite me asking. I hope the infusion resolves your issues.

I when I was young say 25 26 I was very anemic because heavy bleeding into doctor used to give me iron injections after injections few years my Rls was better but now I 70 no periods they never check my ferritin levels which I am going to ask hospital appointment with neurologist . I am taking mild ferrous gluconate supliment

UPDATE

Just had the phone appt with my GP who is totally arguing what what the private Dr said and is refusing any referral until he has a 'heated discussion' with the private GP!!! - he says that my bloods were taken in Nov 2019 and I wasn't anaemic then (so i have asked for copies) and he is saying that the values on this current test dont show anaemia and are yes low - but ok - he kept going on about hb levels which don't seem to be there......I feel so deflated and desperate now as thought that iron might really help me feel better

LotteM
LotteM in reply to 58anniem

No fun, Annie!

Did your GP agree to sending you copies of your labs? All of them? She/he cannot deny, but it still happens quite regularly that they refuse, and just say 'they are normal'.

58anniem
58anniem in reply to LotteM

Thank you for your reply, I forgot to ask for them as I was so upset, but have since emailed so hopefully will get them. I'll update as I can. I hope this is being useful to some other members too

LotteM
LotteM in reply to 58anniem

If not,no worries. You are entitled to help and support. If we achieve that, good. That is very worthwhile in itself.

58anniem
58anniem in reply to LotteM

Yes agree. Thank you LotteM x

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