Iron Overload - Any Advice Please - Really Appreciated

[Jenny-veggie]

Hi I was wandering if anybody could offer me any advice please? I posted this last week on the PA anemia site but then realized I’m not diagnosed with PA but was just anaemic.

I have not been at all well lately. So sorry if this post is too long.

My blood tests are as follows,

20th November 2015

Serum ferritin 6 ng/mL (range - 10-300)

2nd February 2016

Serum ferritin 27 ng/mL (range - 10-300)

30th March 2016

Iron Levels 43 (range - 10-25) I had these tests done at the hospital by a consultant.

Transferrin Saturation is high at 80.2%

Transferrin normal at 2.06 (range 1.68 to 3.36).

Vitamin D 90.2

Folate High 15.1 (range 3.0 to 12.0)

My GP prescribed me ferrous sulphate which I started taking after the November blood test together with Vitamin D 10 000ius as my vitamin D level was only 19.

I had not been feeling at all well since December 2015 but I thought that it was due to the repeated viruses that I was having. I came home from work after my third virus in January and had to have 5 weeks off work and a very part time phased return that is still ongoing and that I am really struggling with. All I wanted to do is lie down, I was weak, aching, weighted, depressed. I was having heaving and dihorrea every morning, no appetite, lost 10 pounds in weight and it would take me two hours to get out of the bed. I couldn’t stand for longer than ten minutes. My friends were saying that I was lifeless.

When I started with strange surges / vibrations, bone pain in my ribs, arms, back, neck, I decided to stop taking the ferrous sulphate tablets and the vitamin D3 on 12th March as I felt so awful.

I have started feeling a bit better the last week or so and I have got my appetite back but I am still having dihorrea every morning but it’s not as severe. I no longer pass normal bowel movements.

I have seen my GP 8 times since January saying I don't feel well and telling him about my symptoms but he kept telling me that It was post viral fatigue and health anxiety . I even saw another GP at the surgery who said the same. They said I would start to feel better once my ferritin levels increased. They told me to keep on taking the ferrous sulphate and vitamin D3 despite me asking is it was them that were making me feel so ill.

I then thought it must be my thyroid was making me feel ill so paid to see an endocrine specialist who was no help. My T3 T4 and TSH were in range, I understand that now. He just said he didn't know what was wrong with me and said that my symptoms would improve when my ferritin and vitamin D levels increased so he increased my vitamin D3 to 20 000ius twice a week.

I had a follow up last Wednesday on the NHS with a lovely endocrine consultant who actually listened to me. She phoned me up at 8pm the following night to tell me not to take anymore iron tablets as my iron level was far too high. I said I haven't taken it for nearly 3 weeks which amazed her and she was concerned as to how high it was and she said she didn't know how I managed to function when I was on them as my levels would have been even higher then.

She is writing to my doctor about this and said that the iron would come down with each period I have. Its likely to take 12 weeks. She says I will need to see a gastroenterologist if the dihorrea doesn't subside.

I told her that I am starting to improve since I came off both the vitamin D and iron and looking back it was as if I was poisoned and she said I have been poisoned and it is iron poisoning. She seemed to think that I was still taking iron on my own accord and I explained that the doctor prescribed them from November and he gave me another 3 months supply last month that I haven’t taken thank goodness. When I told my GP that I wasn't going to take them anymore he wasn't happy and said could I at least get a more gentler form of iron from the chemist, however I got some but haven't been taking it thank goodness. Friday just gone I have a brown patch come up on my arm, I phoned nhs direct and they said it is from too much iron in my system.

I am really upset about it all and I am wondering why this has happened? .

How can my iron levels get so high if they were so low? Also I do not know what to say to my GP. Is there something wrong with me or has my GP not done something? I am so thankful to the NHS Consultant who has found out what’s happened. My GP will receive the results from my blood tests tomorrow and is likely to call me in to see him this week.

Can anybody give me any advice please?

Many thanks

Jenny

[gabkad]

jenny, do you have any blood test results for hemoglobin, red blood cells etc.?   Also B12.  

Iron tablets can make some people feel sick.  Usually people get constipation but I guess anything goes when the guts are irritated.  

Your last ferritin level reported by you is not high.  I don't know what 'Iron levels' means.  Maybe someone else understands that.

[Jenny-veggie in reply to gabkad]

Hi gabkad,  the consultant said that the 'iron levels' was a ferritin level but its just a different range so it is too high. I will get a print off of my other blood test results this week. My B12 was 362 (range 200 - 900) in November but I have been supplementing to boost this since. I can let you know my new levels when I get them this week, many thanks, Jenny

[gabkad in reply to Jenny-veggie]

You didn't take antibiotics for the infections?  

To be honest, sometimes also viruses can really mess up guts.  But if iron is high, for sure, no more iron!  Weird that in such a short period of time, ferritin would spike like that.  Makes me wonder if somehow the liver has been affected by the infections and the injured liver cells were dumping iron into the bloodstream as well.  The endos suggestion to see a gastroenterologist is not a bad idea at all.  

That would make sense if the liver got whacked based on your lifelessness.  

I had hepatitis A back in 1996 and it took a very very long time for my digestive tract to get back to normal.  Lots of vomitting (even bile) and diarrhoea.  Other viruses that can cause liver issues are Cytomegalovirus, Infectious mono (Epstein-barr) and there's others as well.  

[Jenny-veggie in reply to gabkad]

Hi there must be something strange going on like you suggested as I can't see how the iron spiked so high. I will see what my GP says this week and let you know. Thanks for your reply. Jenny 

[gabkad in reply to Jenny-veggie]

Jenny, if whatever virus got you, liver function testing will indicate if the liver got affected.  Ask the doctor to test for these.  They will still be elevated seeing as how you are still not well.

[bluebug]

I would ask your GP to either refer you to, or for him/her to at least phone up and talk to a haemotolgist for advice simply as you need to get your ferritin levels up without being poisoned.  GPs can and have always been able to get advice from specialists without having to refer patients as it's quicker.  (This will also stop the endo taking further action against the GP.)

I was told, and it wasn't by a GP, when I first had low ferritin levels that I should take only 1 iron tablet or around 60mg of elemental iron per day to prevent iron poisoning. The dose of 2-3 daily is for those with active iron deficiency anaemia e.g. not those with low ferritin levels or who need a maintenance dose. In addition taking 1 tablet a day is unlikely to give you the horrible bowel problems you had and prevent you absorbing other nutrients.

Currently the NHS encourages practitioners to prescribe ferrous fumerate for anyone with iron problems as it's more easily tolerated than ferrous sulphate and more of it is absorbed. 

When I get a full blood panel privately for my iron levels it contains 3 groups of iron tests.

The first is in the full blood count which lists the haemoglobin in the red cells. The second is the serum iron and iron saturation which indicates how much iron is moving from storage to the red blood cells. The third is the ferritin level e.g. storage iron.

If the  haemoglobin and/or ferritin level are out of range then the serum iron and iron saturation results need to be looked at.

Normally the iron saturation figures are higher when the ferritin level and/or haemoglobin levels are low. They help to indicate there is an iron deficiency.   

If the iron level is high then there is iron poisoning however generally the ferritin level is normal or above range. 

To save money NHS doctors only do some of these tests. In an ideal world if they want to check your iron levels they shouldn't rely on just a ferritin test but do a full check of iron levels,  and with vitamin D they should also check your calcium and phosphate levels as a minimum.

[Jenny-veggie in reply to bluebug]

Hi Blue bug, thank you for your reply. I'm just so upset about it as I feel so ill yet its been a month since I stopped taking it. They have only done a ferritin test and prescribed from that as I have got the initial blood tests. I am seeing a GP at my surgery at 11am this morning. My usual GP is not in today. Then I want to see him tomorrow. I feel so terrible I keep thinking should I go to A&E. The thing is I just want to get back to my old self. I don't want to wait 12 weeks for it to come out of my system. Do you know if they can do something to reduce the iron in my body? many thanks Jenny

[bluebug in reply to Jenny-veggie]

The only other way is to donate blood but as you are not healthy they won't let you do this.

You have two issues that are making you feel ill - the iron poisoning and the low ferritin level.  If the GP you are seeing today is one who is in the surgery normally e.g. not a locum, ask him/her about referring you to a haematologist. Explain that your endo is unhappy about what has happened to you and is writing to the surgery to raise this issue with them.

Also when were the initial blood tests done? The only reason I'm asking is with women who menstruate they cannot expect blood tests from  6 months ago or longer show a stable iron level.  For example I've gone from being "normal" to having iron deficiency anaemia within 6 months.

[Jenny-veggie in reply to bluebug]

Hi bluebug. I have decided not to see the Doctor today as he is a locum but I am going to see my usual GP tomorrow to see what he says. I'm just getting a list of questions together to ask him. Yes I will ask to be referred to a haematologist and I will ask if they checked my iron levels and haven't just prescribed based on ferritin. I was initially prescribed the iron in November 2015 and I had a ferritin level of 6 (10-300) then they checked on 2nd February and my ferritin was 27 (10-300). I was on my period on the 2nd February when I was retested but I told my GP that and he said it didn't matter.

The endocrine consultant rang to say that I had iron poisoning and she hopes that my GP hasn't prescribed iron just based on ferritin. however she hasn't put all this in the letter to my GP, its quite meak and mild and it says that my iron levels are slightly raised 43 (10-25) and the Transferrin Saturation is high at 80.2%. She's advised him to refer me to a Gastro and to recheck my bloods the first week in May.

Thank you for all the information that you have sent me, really appreciate it, Jenny

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You need your last ferritin level. And ferrous sulphate is unpleasant stuff, try a different one if you go back on iron.