Iron deficiency anemia yes or no??

[Onedge]

Hi there,

I’ve just been reading some of the above posts and wondered if you could advise me??

I have Sjögrens and hypothyroidism and over the years I’ve been low on all vitamins tested eg, vit d, folate, vit b12 and recently I had a ferritin test at 31 ( range 13-150). I suffer with rsl . I’ve suffered with being very poorly for ten years but since diagnosed and treated with Levothyroxine I’ve improved. I’m still not quite right and suffer with severe anxiety and insomnia which I’m now trying melatonin. I’ve been prescribed with iron tablets now but I decided to get a private iron panel done. It was disastrous as only two of the four results came back. My query is my ferritin is low but my iron was 21 when top of the range is 26. So does the iron vary each day and the ferritin score is more reliable in detecting iron anemia???

[Nackapan]

Ferritin is only part of the picture. We all operate at different levels.

My daughters was 10 fir quite a period but HB okay.

Mine dropped to 29ug/L abd I was symptomatic.

Bit I seem to be okay ftom just above 40 . I stopped shaking.

Ideally with hair loss and other ferritin deficiency symptons I was told to try and keep it above 50 ug/L

So a complex thing iron.

It also takes a while to raises ferritin.

Took me a yesr to gradually creep up to 60

If your gp has prescribed iron yiu wil have a blood test in 3-4 months to monitor.

Hoping it is the otibjem as can get rectified .

NHS testing labs hoif it's getting the ones yiu need. I asked for ferritin and fokate S not routine

[Rocky]

Can you ask to be prescribed liquid iron by your GP? I am on that and hopefully I am absorbing it better than iron tablets. I have to take it 3 times a day. I was also tested for celiac disease and my level was high and I am just waiting to have an endoscopy to confirm it. GP's don't seem bothered about our low levels and expect us to keep on functioning. My hair was coming out in my hands, especially when washing it. It has stopped doing it as much now, and I have been on iron for 5 weeks. It was thanks to my private Endocrinologist asking for a full iron panel and celiac test that I have found out. Apparently my iron had been dropping since 2013, but none of the Doctors bothered to tell me. Does RSL mean restless leg syndrome? If it does, I had that really badly too until I have been on my iron, and it seems to have stopped

[HowNowWhatNow in reply to Rocky]

What is the brand name of your liquid iron, please?

[Rocky in reply to HowNowWhatNow]

It is called Sytron

[HowNowWhatNow in reply to Rocky]

Ah. That’s what my son used to be prescribed when he was deficient. Thank you.

[Onedge in reply to Rocky]

I paid privately for iron panel but only two of the four results came back. I’m furious !!Rls is bad and so I’m taking ferrous fumerate tablets to see if my ferritin levels increase and they work for rls improvement. I would prefer to have injections but atm having flu and pneumonia ones done. Is ferritin a better indicator than iron fir iron deficiency anemia ?

[Rocky in reply to Onedge]

All I can tell you is that I had all 4 iron panel readings and my GP told me that it was really low and that I needed to start taking iron. Would your GP not prescribe you liquid iron, as I feel I have absorbed it better than when I took tablets many years ago after the birth of my 3 children

[HowNowWhatNow]

Did the doctors explain to you that you need to take Vitamin C to assist iron absorption?

I take iron (or used to, before I stopped being able to take any iron supplements as they give me such side effects) with a heck of a lot of Vitamin C. One of those fizzy orange pills / a supplement with my spaghetti bolognaise (eg. of iron rich food, I do also take liver once a week now) plus a glass of orange juice or rosehip tea.

Iron pills are very tough on the stomach so pay attention to the side effects and if your body doesn’t like them, ease off. Is my several times bitten advice.

[Nackapan in reply to HowNowWhatNow]

Yes vitamin c is needed to absorb iron

If the tablets are chelated not needed.

I alternate. I found tge doses prescribed tok high mixed with fokate made me I.

I manage on spartane

Solgar gentle iron and ferrous fumerate 210 every other day

Also vit c with meals.

A multivit usually gas 14mg too.

Like you say a hard thing to tolerate do gently thr way if possible. Takes longer but is sustainable

[HowNowWhatNow in reply to Nackapan]

Thanks Nackapan. I thought that iron cancels out the multivitamin or vice versa (makes the other hard to absorb), which is why so many multivits don’t contain iron?

In any case - my poor scientific understanding notwithstanding - I try to space taking my multivit out from taking iron, even gentle types of iron.

Sounds like you have a good routine going. At what kind of level do your ferritin and HB readings sit now? I can’t take ferrous fumarate. Am going to have my first iron infusion done today.

[HowNowWhatNow in reply to HowNowWhatNow]

My ferritin has been between 4 and 6 over the last year. Somehow I’ve got it up to 12 over the summer. Anaemia is connected to so many problems but GPs (I’ve seen a few) and hospital doctors only seem to have the training to understand it as a possible symptom of something, not as a problem for the patient in and of itself.

[Nackapan in reply to HowNowWhatNow]

I.m Finding the multivit with iron fine as folate was tested and rose on a blood test and its the only folic acid i take in the multivit. Diet unchanged.

Yes i take things on different days and apart .

Are you able to eat s good mix of food. ?

Diary caffeine away from iron rich food ect

My daughters dropped so low as diet so restricted due to digestive issues.

My ferritin is now 61 ug/L(11-307)

My heamaglobin concentration

131g/L (120.-150)

Well was in April 2021

So more investigations needed for you

Or another referral

If yih have infusions surly thst doctor will test why?

[HowNowWhatNow in reply to Nackapan]

Thank you. Lots of tests - done and yet to come - and still no reason. Am about to have a second endoscopy, because of stomach ulcer type symptoms. I also have just taken H Pylori antibiotics. I also have a range of weird yet as yet undiagnosed symptoms. I eat everything. More red meat since I became iron deficient - I almost never ate it before. I think all young girls should be measured for iron deficiency once a year - it’s so common in women, and for obvious reasons.

[Onedge in reply to Nackapan]

I have very bad absorption issues and wonder if the tablets will be sufficient to raise my levels up?

[Onedge in reply to HowNowWhatNow]

I’ve been prescribed a six week course of ferrous fumerate . I’ll let you know whether I can take it. I’m worried about my absorption issues and kidneys problems and wanted injections but I’ll see first if they work and help me with my rls. Is ferritin a better indicator of iron deficiency anemia than iron ??

[HowNowWhatNow in reply to Onedge]

Apparently, yes - better indicator of iron deficiency anaemia. But they get more worried about low HB than they do low ferritin. My ferritin has been down to 3 and 4 this year. But because my HB has always been over 100 they don’t stress, even though I feel rubbish.

I am guessing the iron infusion must cost a lot ..?

[Onedge]

Yes I think my low vitamins and Lowry none existence of hormones over the years have caused me so much trouble. It’s taken 11 years now and it’s all hotch potch testing etc. It’s dreadful really that we have to suffer so much. It’s invisible to everybody and if doctors don’t suffer with an illness they just don’t understand. You definitely feel like a hypochondriac and I feel ashamed saying about all my problems so I limit it to two or three at each consultation but I’m sure they are all related!! I’ve just lost so much of my life and independence because of slow diagnosis

[HowNowWhatNow]

Recommend you ask the same question over in the thyroid group. Absorption of vitamins and levels are frequently discussed there in relation to thyroid conditions.

[Onedge in reply to HowNowWhatNow]

Thanks Geogeor I started on the thyroid community as I’m hypothyroid and then the latest bloods revealed low ferritin and low vit b12. The administrators advised to start a new thread here re iron deficiency. My latest ferritin was at 30 and my doctor has put me on iron tablets. I’m going back to him in two weeks time as I’m hopeful that he’s going to then start me on vit b12 tablets (Last blood was 59 and below 70 should warrant supplements) as I have terrible neurological problems ( I’m diagnosed with FNMD), trigeminal neuralgia and left side weakness that all started five years ago when my blood red cells were too big and the wrong shape. My rheumatologist thought it was either pernicious or haematylic anemia and prescribed folate. But he left the practice and I was abandoned before he could do a bone marrow aspiration. I’ve been very unwell ( immobile in dark bedroom for last five years unable to do anything for myself). Since then a new doctor found me to be hypothyroid and I started taking Levothyroxine I’ve improved but I’m not well yet. I’ve always been found to be low on everything ( taking vit d for 12 years) etc. From watching films and reading articles and relating it to all my symptoms I’m certain I’ve suffered from vit b12 for years. Im just hoping now that the supplements can help improve what damage my body has endured and Hope it’s not too late!!

[HowNowWhatNow in reply to Onedge]

Onedge - how have you held together emotionally and survived all this pain and a life on hold?

[Onedge in reply to HowNowWhatNow]

Im very determined and I’ve had help with carers which I have every day and my husband is brilliant with me. I think I just needed to get better for my children. It was so hard to bare it when they push me in a wheelchair or see me on my scooter. Also, my aged parents looking after me and pushing me around was unthinkable. I’ve spent every waking hour researching all my symptoms. I have eight ring binders full. As you can imagine every cell of my body was malfunctioning if at all. I felt 90 mentally and physically. I’ve been through hell but thanks to a lot of morphine and dihydrocodeine and my wonder drugs are steroids and Levothyroxine that I have improved my lot. I still need lots of care as I have dreadful episodes every day and four day flares etc. I’m still not right and I’m hoping that the iron tablets and next the vit b12 Will make me better again. It’s been a very long, hard journey and when I reflect back I don’t know how I survived. I must have a guardian angel or god looking after me. It just goes to show what being positive thinking and hopeful and patient can achieve

[HowNowWhatNow in reply to Onedge]

I’m so sorry. How horrendous for you. And why would your GP practice not request a bone marrow aspiration for you or further tests sooner, seeing as your physical health had got so bad?

Sorry if talking about this brings up painful memories.

[Onedge in reply to HowNowWhatNow]

It’s a very long story… and you are right I just have to move on but I won’t lie it still haunts me

[HowNowWhatNow in reply to Onedge]

That wasn’t what I meant - I don’t think you have to move on now. I don’t know that it will be possible for you to move on while it all haunts you.

I don’t have much faith in talking therapies though, so I wouldn’t recommend them as an approach!

What do you want to do?

[Onedge in reply to HowNowWhatNow]

I’ve done them privately and in nhs for two years to no avail. Doing my own Mindfullness and meditation now but find with insomnia and high anxiety it rarely works as the brain and body is in high alert and full of doubt and dread.

[HowNowWhatNow in reply to Onedge]

Do you have any kind of support group you can join in the flesh?

[Onedge in reply to HowNowWhatNow]

There might be but I’m too anxious and do not go outside much and only then with Carer or husband as I can be overcome with panic attack at any time. I like reading posts on this site and on smartpatients too that provide support and knowledge

[HowNowWhatNow]

Thyroid U.K. that is