Ferritin levels and anemia help please? - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

2,948 members934 posts

Ferritin levels and anemia help please?

Kahlan_tf profile image
2 Replies

Hey wondering if anyone can help me out with a bit of info! As starting to feel a bit alone and crazy, I’ve had to get multiple iron infusions before due to anaemia, as well as I have to get b12 injections frequently as it just goes down because I have a malabsorption problem, not sure if this is related to my eds or not, I was on iron tablets for a year and a half but it did nothing to raise my levels, so they did infusions, my iron has recently been dropping again and the doctor I had two years ago said if my ferritin drops below 100 I should get an infusion, he wrote a referral letter for this but it’s like that never happened as every new doctor has a different opinion or disagrees and I recently had another blood test and from my last one about 5/6 weeks ago my ferritin has dropped to 109 and now has already dropped to 58 so seems to be on the way down, now as I’ve been told before that if it drops below 100 to get an infusion as I did previously I started that process but am now being told that it’s in range so They won’t give me one, I’ve been so ill in the last few weeks, getting dizzy, light headed, constant headaches and throwing up and my mind has been all over the place, and I’m in the last couple of moths of my college course and this is really putting that in jeopardy, just don’t know what to do at this point so if anyone has any thoughts they would be much appreciated? Thanks

Written by
Kahlan_tf profile image
Kahlan_tf
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Jay66 profile image
Jay66

HI. I don't know if it is officially linked with EDS but it is fairly common throughout the general population anyway, and as you know, you can have far more than one unrelated illness or condition at a time! For eg. I am also diabetic and some symptoms from each condition overlap with each other.

I would definitely go straight back to your doctor as you are ill and are entitled to treatment for your symptoms, regardless of what is causing it or whether you meet the criteria for low ferritin. If your body thinks your iron levels are too low then they are too low. Apparently the normal range for ferritin varies wildly, so rather than focus on that I think it is important to tell your GP what your symptoms are and move on from there.

BeezyB profile image
BeezyB

I have EDS & Hemochromatosis which is too high Ferritin. Plus Fibromyalgia. Used to have Ferritin in 600 levels. Did Phlebotomies. to bring down to 50-100 range.

Even though we're on different spectrums I can relate to your body adjusting to new levels. I had lotsa dizzy light headedness with levels being dropped. Think your body needs to acclimate to new Ferritin levels. Personally think they're wrong to infuse you unless level below 30. I went down to 50 & once acclimated alot of my pain dropped too.

You can be anemic & still have Hemochromatosis. Yes sounds ridiculous & not my case but maybe yours?? Read up & educate yourself. Doctors know very little!! We are just their guinea pigs.

You may also like...

I can’t walk I’m in agony! Please help?

Hi I did a bit more walking over the bank holiday than I’m used too and now I can’t walk! I...

Physician with an undiagnosed condition--please help.

extremely irregular periods. My blood pressure has always been low (80s-90s/60s typically). I also...

Diagnosis.. can anyone help me with the understanding of it all please

Hi, I was refered and recently now been diagnosed with hypermobility spectrum disorder bordering EDS

Is it Worth Seeking Help?

and my doctors have not carried anything on. I’m wondering if it’s worth going to the doctors...

Can someone please point me to an hEDS specialist

have been diagnosed with hEDS for the past 7 years (13), I am 20 now and the orthopaedic doctor told