Low iron levels

[altywhite]

I have been put on Ferrous Sulphate tablets because my serum ferritin was only 11 (lower limit of normal is 15) It was picked up from a routine blood test but I have been even more fatigued than ever for some while now, had palpitations and I am naturally pale skinned. Does anyone know if this is a consequence of the auto immune state? Or long term pred? Or Omeprazole? I suggested all these to my new GP and he didn't know. My FOB was normal. So it is take the tablets for a couple of months and have another blood test!!! I'm still tired....4 weeks in!!! 😔

[SheffieldJane]

Hi, as your primary physician seems unable to answer your questions, perhaps a referral to a specialist is indicated. Anaemia doesn’t just appear out of the blue. You are experiencing palpitations and fatigue so a cardiologist might be a reasonable place to start. Have your vitamin B levels been tested?A number of members have this deficiency. Hopefully they will see this and give you their story.

[altywhite in reply to SheffieldJane]

Thanks Jane, the asthma nurse mentioned a cardiology review as I have also been breathless. I'm not actually anaemic though...my Hb is normal. I do take a vit B complex daily too. Hope you're doing OK x

[PMRpro Ambassador in reply to altywhite]

You might find this interesting/useful:

irondisorders.org/iron-defi....

[altywhite in reply to PMRpro]

Thanks PMRpro, I'll give that a read.

[SheffieldJane in reply to altywhite]

My recent cardiology tests showed mild dilation in my ascending Aorta, so it was worth it. The cardiologist will continue to monitor this, possibly GCA/LVV linked effect.

[Janstr]

I also developed low ferritin after going on steroids, & know it was Ok before that, as being vegetarian, I had it checked every year. My GP said that you can be caused by pred, & at the time I did find some evidence of that on the net

[Kendrew]

Hi altywhite,

I'm afraid I can't comment on the iron issue, but I have had a history of palpitations on and off throughout my life that have at times required medication to help control them.

At the time I started taking steroids, I was not experiencing palpitations and not on any medication for them. However, a few weeks into taking the steroids, the palpitations resurfaced again, and after some investigations with my cardiologist, they are now under control again, with the medication I'd previously been prescribed. (Propanolol)

My cardiologist said that there was a slim chance this was just a mere coincidence and they'd have returned anyway, but he did suggest it was quite possible that in my case, the medication had brought about some change that had caused them to re-emerge.

Fatigue can definitely be a problem experienced with PMR and steroids. One of the side effects of steroids is that they can gradually cause muscles to 'waste' and weaken, so fatigue will obviously set in as a result. I personally was also fatigued as a direct result of the PMR and the extreme fatigue I was experiencing was one of the reasons I initially went to the doctor pre-diagnosis.

It's important to bear in mind that any worsening or new symptoms should always be fully investigated... particularly where the heart or circulation might be involved, so as SheffieldJane has already advised, I would probably ask to be referred to a cardiologist just to rule out any other causes.

[Bennijax in reply to Kendrew]

Tapering from 11mg to soon 8mg preds since September.

I had about a month of horrid palpitations in October last, then they went to 'sleep' and just started up again yesterday after a weekend of some indulgence....... My usual daily restrictions to diet went out the window over this holiday and I've eaten more carb and sugary food than usual. Still off wheat and gluten, but definitely indulged in much more sugar and potatoes and rice than usual. This morning I blamed that on the palps.....I wonder if they can be caused by even small changes to our blood chemistry . Thank you for the info re Propanolol, I will ask my GP.

[Kendrew in reply to Bennijax]

I've definitely found that on the few ocassions that I've over indulged in too many carb-rich foods, or have had an alcoholic drink (extremely rare that I drink alcohol though) the palpitations do seem to become more prevalent for a day or two. I'm not able to explain why, although others with more knowledge may! I do know that caffeine is another culprit for me,

[PMRpro Ambassador in reply to Kendrew]

Alcohol is a common risk factor for arrythmia in any quantity even though most google replies say heavy drinking. It is also recommended that you avoid processed foods and sugary drinks and foods. If you avoid them most of the time, you may find sudden overload makes things worse.

[Kendrew in reply to PMRpro]

That certainly makes sense and definitely fits my occasional 'eating pattern' behaviour.

[Karenjaninaz in reply to Kendrew]

I found that when I took certain medications that deplete magnesium; this includes prednisone, anti-histamines and possibly gastric medications my palpitations start up. I take extra magnesium and they go away. This I discussed with my cardiologist who didn’t find any reason for them.

[PMRpro Ambassador in reply to Karenjaninaz]

Not impressed by your cardiologist! Pred depletes magnesium, that is well known. Low magnesium is associated with arrythmias - here if you are in hospital being investigated for arrythmias and a prolonged one registers on the ECG a nurse will soon appear with a small bottle of magnesium pidolate (called Mag2+) to take there and then, they do prescribe magnesium supplements but unfortunately it doesn't cover this particular formulation so I buy my own. If I have a tachycardic episode, if I take the Mag2+ immediately it will stop quickly rather than lasting, merging with a/fib, for a couple of hours.

[Karenjaninaz in reply to PMRpro]

I meant he didn’t find any cause for my palpitations structurally. I had a thorough work up. I am actually very pleased with my cardiologist because he listens to me.

[PMRpro Ambassador in reply to Karenjaninaz]

Ah - apologies then. That wasn;t what I understood you to mean

[wendyanne49]

Hi. Your post could have been written by me. I am on week 5 of iron tablets. Once all the nasty causes had been eliminated ( internal bleeding etc) poor iron absorption was the culprit. I was told it is very common in people of my age ( 72) . No mention was made of my long term steroids. Because it was caused by poor absorption it came on very gradually and then got to a level when all the symptoms of anaemia became obvious. Palpitations are a common symptom but they will go as your iron levels get back to normal.

Hope you feel better soon.

[altywhite in reply to wendyanne49]

Thanks Wendyanne, I was leaning towards poor absorption but my young GP wasn't sure!! 😊 I am a similar age to you and I had a colonoscopy last year which was fine. I do think it must have been coming on for a while but I put my symptoms down to the GCA/PMR and the steroids! I suppose it will take a while to get my iron store back to a more normal level before I feel better. Nice to know I'm not alone though. 😊 Hope you feel better soon too. 😊 Linda x

[Hidden]

My husband is anaemic. His was found from having a blood test too, prior to waiting for surgery on his hips. He gets very tired and breathless. GP put him on the same tablets but they did little to help. Iron absorption can be hard and certain things you should really avoid. Tea and Coffee being two of them....docs obvs don't know these things. In the end had to have an Iron Infusion....still think he's low and still has same probs. Probably will need another infusion after they see his level after next blood test on 9 May. I was told it can take 6 weeks for the infusion to show up in the blood. I'd have thought it may have dropped again in that time. He must get all his blood test levels good before they will operate. I've just checked my husbands blood test result. His Serum Iron Level was 10.9 (Range is 12.00 - 32.00 umoI/L) They go by the Haemoglobin estimation which his was 102 (Range is 130.00 - 170.00) so quite low.

[altywhite in reply to Hidden]

Hi Staplehurst, hope your hubby gets his surgery soon. My haemoglobin was actually within normal limits so am thinking it must be an absorption problem. I did read about the tea and coffee and normally I drink quite a lot!! I've cut down and am weaning myself on to decaff!!! 😂 x

[Hidden in reply to altywhite]

That's good. I google to get any info I can about this sort of thing. He drinks so much tea, so hard to try and wean him or rather limit his intake. All I hear all day long is put the kettle on. He's in so much pain and can't wait for him to get his first hip over and done with.

[altywhite in reply to Hidden]

Aww, bless him, it must be awful. I always hated decaff tea but I tried the Yorkshire tea decaff and it's actually OK. I'm a great Googler too....😂 possibly not always a good thing!! x

[Hidden in reply to altywhite]

Agree, not always good but helps sometimes with more minor stuff. Hubby is a type 1 diabetic too with macular degeneration and chronic kidney disease, so coping with a lot poor soul. But did very well before both hips went up the creek. He walked a lot and played golf.

[altywhite in reply to Hidden]

It's no fun this getting older is it??? Hopefully he will get mobile again after the op. x

[Hidden in reply to altywhite]

Praying he does, it's all the physio that he will have to do as muscle wastage is bad not being able to move. Since I've had PMR I feel a hundred some days lol.....hate getting old. But as the old ad'age says 'Better than the Alternative' I feel very achy today. Do you have Polymyalgia that's why you're on Prednisone. I'm feeling nervous for my next taper on 1st May going to 6.5mg, that's the dose I was on beginning of year when I had a flare.

Anne

[altywhite in reply to Hidden]

I started with Temporal arteritis (GCA) back in 2017, struggled on the high doses of pred then found this forum. It has been invaluable for the support. I developed PMR a couple or so years ago. Long story short I will probably never come off the pred...according to my rheumatologist. I struggled so much with reduction below about 8mg. One of the unlucky ones. But to be honest I am OK on 5mg. Fatigue and aches have always been a problem for me but I have learnt when to adjust the pred and when to battle on. Just take your reduction very slowly, use Dorsetlady's plan. Good luck....to you both. xx Linda

[Hidden in reply to altywhite]

Morning, I have used DL reduction plan. Sadly, when I reached 6.5mg GCA kicked in again. So I decided to stay on each mg for a month and only reducing by 0.5mg at a time. 1st May 6.5mg the dose I seem to have problems with, but will try again. The achy shoulders and arms have never really left me, even taking 10mg. So like you, I will plod on and see how it goes. GCA is the disease that scares me, as I only have the sight in my right eye (due to another illness many years ago) Do you struggle with mood changes ? I won't call it depression as it isn't. Just some days feel grizzly, low and just can't seem to snap myself out of it. Was hoping on 7mg it would start to ease, but hasn't. Just hope once I get to 4mg (fingers crossed) my adrenals will start to produce enough cortisol to make me feel better mentally. I know I have a lot of stress with hubby right now, but know the way I feel some days it's nothing to do with him and know Pred is causing it. Onwards and Upwards as they say.....far worse off than me out there.

Best wishes

Anne

[HeronNS in reply to Hidden]

I had to take iron tablets many years ago and I remember disliking them terribly. When I groaned this time, when told I needed iron again, my doctor suggested liquid iron supplement. I found this very acceptable, and my iron returned to normal relatively quickly. I use up a bottle every once in a while now, but don't take it all the time, and that seems to be working. I think the liquid supplement is more easily absorbed.

[Hidden in reply to HeronNS]

Thanks Heron, certainly the iron tablets weren't absorbed at all. Blood test for him next Wed and will see how much of the infusion worked for him. Some how I doubt very much as he's still getting very tired and breathless too. He will probably need another infusion before he gets his surgery. He was told after the infusion to stop the tablets, maybe he should have carried on.

[HeronNS in reply to Hidden]

The pleasant-tasting liquid iron is from a company called Salus, made in Germany I think. it has caused no digestive issues and my ferritin returned to a normal (still low but healthy) level very quickly. It is, strangely, not sold in our local pharmacies, but I can get it from a supermarket which has a wellness section, and from a store which sells other health products.

[Hidden in reply to HeronNS]

I'll wait and see what his blood test shows, if low still I will buy some. Thank you

[PMRpro Ambassador]

If it were the autoimmune disorder then I would expect the ferritin to be high and the other things low - it is an acute phase marker for inflammation just like CRP and ESR, it is the only thing that has been raised out of normal range for me. Do you know what your haemoglobin level is?

Palpitations and fatigue are common symptoms of anaemia - low levels of the iron containing substance in the blood means less oxygen can be carried to the body from the lungs meaning the heart has to work harder and so there may be missed beats and varying speeds of pulse. The GP has done the basic test for GI bleeding so that is less likely to be a cause.

How long have you been on pred and the PPI? What is your diet like?

[altywhite in reply to PMRpro]

Hi PMRpro, thanks for replying. My Hb was within normal limits but on the lower side, can't remember the exact number. It wasn't much different from the last test but I suppose if this has been developing slowly then that would be expected. I've been on pred for 7 years now, initially high doses for the GCA. I had a lot of trouble reducing once I got to 7mg but have been on 5mg for a couple of years. The rheumatologist says I've to stick at that. I think my diet is pretty good, don't eat as much red meat as I used to but do eat plenty of green veg, chicken, fish etc.

[Mojobumble in reply to PMRpro]

Thank you. That stacks up for my high ferritin. When i started a year ago I saw a nutritionist and changed my diet to alkaline. Including tons of greens, no alcohol etc. etc. I was unable to get detailed bloods done on the nhs so went for a private accredited lab just to check not long ago. All my biomarkers came in the normal range except ferritin. The reviewing GP expressed the view it was most likely my ongoing PMR. My ESR and CRT were normal (but i didnt drop the steroids before the test). That said they have always been normal on diagnosis and before steroids.

[Skymollie]

Hello, I also had an auto immune issue and my hemoglobin was low, always in the 11s. I was not on pred nor was I on omeprazole. One doctor said I had PMR, another said it was rheumatoid arthritis. I know I have ostioarthritis, osteoporosis and osteopenia. I know that when my iron levels came up into the 13s on a consistent level that the pain stopped. I have not taken my Celebrex which is an NSAID on a regular basis since my iron levels came up to the normal range. I did my own research and found all the holistic iron supplements and took those consistently for a month or two and have since stopped because the range stays in the 13s. I also bought a hemoglobin machine online so I can test it myself. It’s a lot cheaper than going to the doctors office in America. Lol I took an iron supplement called my kind brand, folate, MSM thousand milligrams, and nattokinase. Good luck on your journey.

[YummyBear]

Has your Vitamin D levels been checked, low Vit D causes fatigue? My result was below normal, I was prescribed high units of Vit D which changed my life.

[altywhite in reply to YummyBear]

Thanks YummyBear, yes they're normal, but I have been on a supplement for 7 years now.

[HeronNS]

My ferritin was even lower than yours when I was diagnosed with PMR. My former doctor had only checked haemaglobin and claimed my iron level was fine. However I took liquid iron supplements, by a German company called Salus, and found this a most acceptable way to get iron, and as long as I occasionally buy a bottle and take it, not all the time, since then the ferritin has tested fine. I did find a couple of years later rather by happenchance, that I was also salt deficient. This was never confirmed by any test, but I found when I started consuming more salt (had eaten low salt all my adult life) a number of concerning symptoms cleared up. As our electrolytes can be affected by pred it's not a bad idea to have them checked. My symptoms, which I probably can't completely remember now, included waking with a headache in the morning, sensation of a "skippy" heartbeat (had that long before PMR) and I'm afraid I'd have to look up the other things which went away as I don't remember them now!

[altywhite in reply to HeronNS]

Thanks Heron, yes, morning headaches have been an issue!! I've had a look at some of the liquid supplements and may try one when I get my levels up. I've been taking magnesium for restless legs but maybe the iron deficiency is to blame for that too! It's a minefield! Salt deficiency, however, is not a problem for me!! 😊 I probably need to reduce my intake! 😂

[HeronNS in reply to altywhite]

To my knowledge my only symptom which the low iron might have contributed to was fatigue. The other things resolved with salt. I checked my salt intake at the time, overestimating if anything, and was actually only taking in about 900 mg a day. I'm so glad a passing acquaintance alerted me to this, as I could so easily have fallen into some endless allopathic hole. However if that isn't an issue for you that's good. Although there are other elements we need which you might be low in, like magnesium for example. Think I read somewhere that magnesium can help with restless legs (I do not think I actually know how restless legs manifest).

[PMRpro Ambassador in reply to HeronNS]

What is says on the tin - you can't keep your legs still:

mayoclinic.org/diseases-con....

[HeronNS in reply to PMRpro]

Not just being fidgety then?

[PMRpro Ambassador in reply to HeronNS]

No - it may be why people fidget but they can't stop it. Fidgeting can be stopped.

[altywhite in reply to PMRpro]

Absolutely!!!

[altywhite in reply to HeronNS]

My restless legs issue starts as though I am starting with a hot flush in my lower legs and feet...a horrible crawling feeling!! Always at night..wakens me up. I am often to be found padding around on cold tile floors...bare footed, of course! It does help! Also, I think the magnesium helped but I stopped it when I started on the ferrous sulphate as it was hard enough juggling the meds I am on without adding in another incompatible one!!!

[HeronNS in reply to altywhite]

You could consider an Epsom salts soak before bedtime, even a footbath will help if you are a shower person. Apparently the magnesium is absorbed through the skin and therefore you would be giving yourself a dose of magnesium before you go to bed hopefully to stay asleep!

When my husband was diagnosed with covid, that evening I soaked in Epsom salts with a few drops of tea tree oil and lavender to make it smell nicer (what I used to do when coming down with a cold). When I do this I read a magazine article or something which keeps me in the water about the right length of time. I noted the next morning that I felt particularly well. I don't do this often since I moved because my bathtub is singularly uncomfortable.

[altywhite in reply to HeronNS]

What a great idea about the tea tree and lavender bath...I love both of those scents 😊 I actually restarted my magnesium tablets 4 nights ago and, hey presto, I'm sleeping better already with very little irritation!! My daughter in law to be (next month) swears by epsom salts. 😊

[PMRpro Ambassador in reply to altywhite]

Internal or external use?

[altywhite in reply to PMRpro]

😂 I had totally forgotten you could take them by mouth!!! No....she loves her baths with added essential oils. 😊

[PMRpro Ambassador in reply to altywhite]

That sounds a bit less risky!!!!!

[altywhite in reply to PMRpro]

👍😄

[Twopies]

So odd—my iron was borderline in October; I took 3 pills, got so ill with them that I stopped. Had my level checked again this week: normal! It wasn’t the 3 pills, but whatever, I’m pleased!