IRON INFUSION

[JGBH]

Hello,

Am due to have an iron infusion next Thursday. I would be interested to hear from people who have had/are having iron infusions, whether it has made a difference to their level of energy or other. I understand it will take quite a while to notice any improvement if it works, so how long did it take before you felt better, if you did? Was the procedure painful, how long did it take? How often do you need to go back for more infusions?

I would appreciate to hear from your experiences.

My iron level is pretty low 4 (range 8.8 to 27) and it has been so on many occasions. Even lower. Therefore below range

Ferritin level: 2.14 g/L (range 2.0 to 3.2)

Transferrin saturation index: 8% (ramge 20 to 40) Below range.

Serum Ferritin: 91 ug/L (30 to 400)

Serum Folate: > 20.0 ug/L (3.89 to 26.8)

Total white blood count: 14.10 10*9/L (4 to 10) Above range

Red blood cell count: 4.51 10*12/L (3.8 TO 4.8)

Haemoglobin concentration: 117 g/L (120 to 150) Below range

Haematocrit: 0.385 (0.36 to 0.46)

Mean cell volume: 85.4 fL (83 to 101) Below range

Mean cell haemoglobin concentration: 304 g/L (315 to 345) Below range

Platelets: 358 10*9L (150 to 400)

Neutrophil count: 13.00 10*9L (2.0 to 7.0) Above range (please note I am on 10 mg streroids/day)

Lymphocytes: 0.72 10*9/L (1.0 to 3.0) Below range

Serum total 25-hydroxy vitamin D level: 68 nmol/L (3.89 to 26.8)

Serum C reactive protein : 27 mg/L (< 5.0) Above range)

ESR (erythrocyte sedimentation rate): 47 mm/h (< 35.0) Above range

B12: >2000 ng/L (197 to 771) Above range .But i inject every week or every 2 weeks so this can be ignored.

I have rheumatoid arthritis and since I have had knee replacement surgery (both knees, 6 months apart) my RA is not well controlled and is flaring up badly. am also hypothyroid.

I have been asking for iron infusion for past 2 years as I have been feeling so very ill, so weak, dizzy,breathless, tachycardia then feeling heart is slowing down too much, lose of hair, exhaustion, etc... but 2 haematologists refused, instead tried to get me off the B12 injections. This haematologist told me he would try an iron infusion and see whether it helps me, but he did not think it would! How odd...

I do hope it will make a difference as I certainly cannot carry on like this. I simply cannot function at all and spend a great deal of time lying in bed or sleeping.

I have been on PPIs for 3 decades because of severe gastrooesophageal reflux/hiatus hernia and reactive gasrtritis, so the PPIs reduce my absorption capacity although I do have a very good diet. I am not vegetarian.

Many thanks if you can answer my questions.

[Gambit62 Administrator]

the results you give above do imply microcytosis - small red blood cells which means they won't be able to carry oxygen from your lungs to cells.

Whilst PA can affect ability to absorb other vitamins and minerals - not just B12 - and folate and iron are the common ones there isn't a direct relationship between B12 deficiency and iron deficiency.

The iron infusion may help with the microcytosis but it could take a while to resolve the microcytosis - few months.

I haven't had problems with iron levels though some do.

Suggest you take a look at the related posts that have come up when you posted this. They are at the top of the page to the right if using a browser - not sure where they will be if you are using a phone.

[JGBH in reply to Gambit62]

Thank you Gambit...

Yes I have had microcytosis for a few years, yet not a simgle GP nor haematologist seem to be bothered... Obviously they do not suffer the dreadful symptoms themselves. If they did they would do something about it (for themselves) straight away.

This latest haematologist (the 3rd I am seeing in over a year) at least suggested iron infusion but had the audacity to say he did not think it would make any difference to me! However, he never suggested what else could be done to help me.

So I can anticipate he will say (when I see him again in clinic at the end of January 2019) since it is not working there in no point in doing more iron infusion... But I do need to carry on with these in order to give myself a chance to recover some energy. How to convince him to pursue with treatment a bit longer to give my body a chance to recover....?

I was hoping to receive more replies to my post... so thank you for taking the time to do so, much appreciated.

[Melbourne-Girl in reply to JGBH]

Hi JGBH yes I have had 2 iron infusions. My levels were so low my GP could not believe it!

Booked straight in to have an iron infusion as a hospital outpatient. My experience when I had them were good ones and from memory I think that I noticed some difference after a couple of weeks and more over time. When your iron levels are rock bottom you usually get what is called Pica with it - that is a compulsion to continuously eat one of 3 things & you crave them constantly. They are Bark (from trees), Sand or Ice. I’m glad mine was Ice but my temperature was always below normal. Ice was the only thing that settled me. I was glad it wasn’t sand as there would be no sand left on our local beach.

I was told by am African Nurse living in Australia that it explains why her mother & others ate sand during their pregnancy. She did not realise the relationship between those 3 things correlating with an extremely low iron level. Have found most medical people are still unaware of this correlation.

It did give me a lot more energy when my iron levels were either normal or above normal.

It is good that you are persistent and if one Haematologist is unable to help you that you try another one despite your tiredness.

The hospital where I had my intravenous infusions were set up really well for I\V infusions and I hardly felt the needle going into a vein in my arm. The staff were so professional and clearly well practiced. A lot of the patients that were there when I had my infusions were cancer patients so the Nurses who put the I\V needle in are incredibly good at what they were doing. From memory I was there for 2-3 hours

Good luck with your infusion & how you find your levels of tiredness when the infusion works it’s magic. Let me know how you get on.

Best wishes xx

Melbourne-Girl

🍀🍀🍀🍀🍀🍀 (4 leaf shamrocks for good luck).

[JGBH in reply to Melbourne-Girl]

Morning Melbourne-Girl

And thank you so much for your encouraging info.

Glad you’re feeling better now. How long ago was that? Are you still feeling better and do you test your iron levels regularly?

Also when you say your iron levels were very low... how low was that (with reference range to compare with mine so I get a better idea)?

Sorry for this Spanish Inquisition... have been feeling so ill, so weak and a bit “out of this world “ for so long that I try to get as much information and details that I can to help myself. Perhaps medical professionals are much better in acting when a patient presents with serious symptoms? Not really the case in UK (there might be the odd ones acting promptly... not on my patch!). Anyway will have infusion on Thursday but am surprised it will only take 40 minutes and haematologist told me I might just have certain amount and come back for a little more a few weeks later... That indicates they only doing things at half measures! He also told me he didn’t think it would help me! How positive is that? Replied if he were in my situation he would welcome a trial! That attitude really grates with me... sorry rant over!

I do not seem to crave pica foodstuff, but always want to eat and craving sweet stuffs. Am on steroids so I expect this craving is due to steroids.

I am SO hoping it will help.. I need a break.... to feel alive for a while and enjoy life. Don’t we all?

One more question if you haven’t run off yet... How high were your iron levels (where about in the “normal “ range) were they when you felt well again?

Many thanks again. Much appreciated.

Will let you know how I get on.

Very best wishes to you. X

[Melbourne-Girl in reply to JGBH]

Hi JGBH,

I did respond to this but it seems to have disappeared. My last Iron Infusion was 2 years ago & yes I am checked regularly. I have a pathology form to get my levels checked again so must get it done soon.

Our values that measure our Iron levels, Hb & ferritin etc I believe are expressed & reported differently to those in the U K.

My Iron levels last dropped to 19 & the normal range is 80-100. Few people if any would get a reading of 100.

From memory I started feeling a little better at About 2 weeks and over time even better than that. I think my levels went up to around 80 which they were very happy about. When my levels went up to 80 I was feeling a lot less tired.

I agree with your thought of food cravings & prednisone also I remember I felt the same when I was on cortisone. Unfortunately I got Cushings Syndrome whilst on Cortisone so that it is not an option for me any more.

Appears to be a negative response re seeing your last Haematologist, hopefully he ordered you enough intravenous Iron to get the good results that I got.

Keen to hear how you get on, keep in touch, xxx

Melbourne-Girl

🍀🍀🍀🍀🍀🍀🍀. 4 leaf shamrocks for good luck & love

I am having some flares re my connective tissue stuff so not feeling great. Will try & post 3 very different songs as music always helps to lift me a little

[JGBH in reply to Melbourne-Girl]

Hello again M-G

And many thanks for kindly giving me more positive feedback and encouragement. It looks like your iron levels were pretty low, like mine (they have been low for so so long and ignored - was being told it was ok! when I knew it was not, obviously below the range). I have several autoimmune diseases (RA, Sjgren's syndrome, Uveitis, hypothyroidism and now maybe polymalgya rheumatica.... plus B12 deficiency. So anyone would think the haematologists I saw over a year ago would have agreed to na iron infusion... Anyway I will be having one tomorrow... keeping everything crossed that it will bring me some energy back so I can feel alive as opposed to going through a slow death (not being dramatic, but really it has not been a life for past 4 years now). I used to be so very active. Falling asleep all the time and being unable to do anything at all, to function normally is frustrating and scary. I know many people feel that way.

Sorry to hear you have Cushing's... How are you feeling, and is this under control now? Please keep in touch and let me know what your iron levels are once you have had the test. How often do you have to go for an infusion?

I also note you have connective tissues problems... poor you. How are you treated for these? Like you I have been having a massive flare up for months (RA) since I have had my 2 knee replacement operations, the usual treatment has not stabilised the RA since then... hence on steroids. Life can be tough for so many of us on these fora.

Thanks for all your good wishes and the Irish luck! Sending you my best wishes too. xx

[Melbourne-Girl in reply to Melbourne-Girl]

I only get Cushing s Syndrome when I am on prednisone or cortisone so I can not take that drug any more. It’s a shame as it’s a great anti inflammatory.

Like most people on here I have several auto immune problems that I am dealing with so I accept it as par for the cause now.

Looking forward to finding out how you fare with your iron infusion. If you do not feel much difference after several weeks I would discuss the possibility of having another infusion (depending what your levels are at the time of course).

Hoping for good results for you xx

Melbourne-Girl

🍀🍀🍀🍀🍀🍀

[JGBH in reply to Melbourne-Girl]

Thanks again. Will reply more fully tomorrow. Hope you have as good a day as possible.

[JGBH in reply to Melbourne-Girl]

Hello Melbourne-Girl

Well it's quite a while since I had my iron infusion, back in November 2018. The infusion did not last very long, well under an hour. It was not painful as several kind people had told me. The following days I had a strong headache and felt out of sorts, very tired.

It did not kick in very fast. I suspect it's because I had been having very low iron for quite a long time and I was not given a great deal of iron. I suppose it's best to be careful.

Anyway, I went back to see the haematologist at the end of January this year. I had just started to feel a little better but nothing dramatic. The haematologist said to me "well, I don't suppose you're feeling any better"... That really worries me that he should be so negative and clearly unwilling to really help. Told him, as a matter of fact, I was feeling better and he must have noticed from my blood test results there must be an improvement. I had to ask him to give me my results and there was an improvement in my serum iron, from 3 umol/L to 11 umol/L (accepted range 8.8 to 27) and my Transferrin saturation levels went up from 8% to 22% (range 20 to 40%).

My latest results are even better - serum iron 12 umol/L and Transferrin saturation levels 29% - and I do feel better but my energy levels are still pretty low. However, my serum Transferrin levels are below range at 1.82 g/L (range 2 to 3.2 and my serum Ferritin levels have shot up above the range at 494 ug/L (range 30 to 400).

There is a note from the lab stating that "although the Ferritin is raised Transferrin saturation is below action limit. Consider alternative explanation for raised ferritin, eg: other liver damage, inflammation etc. While haemochromatosis is unlikely this result does not completely exclude if other clinical features."

So not sure what is happening. Have seen my GP on Thursday but she is not going to do much. I suggested I should get an MRI scan of my liver as it's the only test that will show any iron deposited in my liver which if untreated can lead to fibrosis and non-alcoholic cirrhosis. She said that could not be done! I insisted to be referred back to haematologist but she said he would not do anything! This is the lack of medical attention that exits in the UK. it's quite shocking and so worrying. I will have another battle ahead of me. This is so unacceptable in the UK in 2019.

So not sure yet how I will proceed but I cannot accept this lack of further investigation, this medical negligence. If my iron stores are so high and are not being used then there is a risk of iron deposits in the liver, pancreas and the heart.

This is my latest news. What about you? How are you? I do hope your iron levels are still good.

Take care and very best wishes. xxx

[Melbourne-Girl in reply to JGBH]

Hello JGBH

I have not been on line for a while as I have been quite unwell.

Sorry you are still sorting out your iron levels, from what you have said in your email you will need to get your liver checked with an MRI to ensure all is ok in that area.

My iron levels are low again, although not as low as they were before. I am taking oral Ferro-gradC & hoping this will bring my iron levels up enough so that I won’t need another infusion. The oral Ferrous sulphate I am taking is the strongest oral iron available in Australia with the Ferrous Sulfate at 325mgms, equivalent to 105mgms of elemental iron & 500mgms of vitamin C (ascorbic acid) which is needed for absorption of the iron.

Some patients need to take folic acid, a synthetic form of vitamin B9 if their red blood cells are not healthy.

I think that we all have to be proactive when we deal with Drs to ensure that we are having the tests & the treatments our bodies need.

Good luck in sorting out why your Ferritin is raised and your serum Transferrin is below normal.

I am having a blood test today & 1 of my tests is for Ferritin levels so I am hoping the oral tablets that I have been taking are going to gradually make a difference.

Best always

Melbourne-Girl xxx

[JGBH in reply to Melbourne-Girl]

Hello MelbourneGirl

Lovely to hear from you but so very sorry you are not feeling well. Ill-health is like a curse! I don't suppose you have your iron and ferritin blood test results yet? Do hope they have improved. Why are you reluctant to have another iron infusion? Have you had many?

Oral iron therapy is not really working for me. I took iron tablets for years with no or little improvement plus getting all the problems with my stomach (have gastritis), so really iron infusion is the only way and they did not do so till last November although all my tests and symptoms indicated I needed iron. I do despair of the way we are treated - or rather not - in the UK, especially if you are past 60 and have a complex medical history.

Indeed I need to find out what is causing the raised ferritin while my serum transferrin is below normal. I will be very lucky if I get an honest answer from the medics! All my GP could say was that I have rheumatoid arthritis and that's what is to be expected... but NO willingness to help improve my situation with the iron/ferritin/transferrin levels. I did tell her medics must not "hide" behind the RA. It's true it does decrease my iron levels but it does not mean they should not look into the situation. All they want to do is save money at the expense of the patient's health. Although I know I need an MRI scan of my liver to check for any iron deposits, the GP said I would not have one... she was even reluctant to refer me to the haematologist again, saying he probably would not do anything! And they call themselves doctors, quoting the hypocratic oath "do no harm"! Sorry, another rant. It's disheartening when one has to fight for treatment, help to improve one's quality of life. It should not be that way. What is it like in Australia?

I do hope you will feel better soon. Please let us know about your latest blood test results.

Take good care and my very best wishes. xxxx

[Melbourne-Girl in reply to JGBH]

Hello JGBH

I am not really reluctant to have another iron transfusion I just wanted to see if the oral tablet with vitamin C worked for me. If it does well great, I just got to the stage when I was fed up with seeing so many different specialists & having so many tests and procedures.

Will see my Dr this afternoon so not sure if we will have a result by then. Will let you know when I do,

Best wishes always

Melbourne -Girl xxxx

🍀🍀🍀🍀🍀🍀🍀🍀

[JGBH in reply to Melbourne-Girl]

Hello MG

Hope you had some good news when you saw your doctor. Fingers crossed.

Let me know when you feel able.

Love and take good care. x

[Hidden]

Hi there. I had an iron infusion 4 months ago. My iron was at the bottom of the range you quote and my ferritin was below range. I took folic acid 5 mg and got back up to over 20 as per your range.

I live in Scotland and the iron infusion took an hour and I was there an hour or two after for monitoring. The process was painless. It took 3 to 4 weeks for me to feel any better so I would say don’t expect instant results.

The amount of iron they give you is calculated by your levels of iron plus your age and weight. I’m not surprised they would give you slightly less as they will want to check it’s having the desired effect. Also it isn’t a good idea to give you too much either so I’m guessing they’re being cautious.

Good luck with it and I hope you feel the benefit from it.

[JGBH in reply to Hidden]

Hello Martin,

Thank you so much for your reply. It is most helpful indeed. Am going tomorrow afternoon so I feel a little less nervous now thanks to your reassurance and that of other people who have kindly replied to me.

I also feel a little more hopeful that it will work. Cannot really understandd why an haematologist would be so discouraging by stating he did not think it would help me... looking at my blood test results there is a very good chance it will help. So keeping my fingers and toes firmly crossed... for 2/3 weeks post infusion.

Will you be having another infusion in a few months' time to ensure your iron levels do not plummet again? Did it really make you feel better, as though you got some energy back?

Thanks again and all thee best to you too.

[Hidden in reply to JGBH]

Glad to be of some help. I know how lonely this journey can be. My GP is happy to send me for another infusion if needed. It seems a lack of stomach acid is the problem as acid helps with iron absorption. At the moment I’m taking Spatone and seeing how that helps. I get my blood results later this week so will see.

Good luck today. You will be just fine!

[JGBH in reply to Hidden]

Am convinced i have low stomach acid because I have been on PPIs for at least 30 years.... so no or little absorption of all the very good food I eat hence B12 deficiency and iron below range etc. So am really hoping the infusion will make a big difference.

Thanks again for support.

Please let me know how you get on with blood results.