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?