High ferritin - low serum iron

[catalonia13]

I had IDA for some 18 years, until 5 years ago was otherwise fit and well then auto-immune issues started kicking in, had Thyroid Eye Disease, then became Hypothyroid, diagnosed with Celiac in Feb 2016 (asymptomatic) and am IgA deficient. saw in ME/CFS specialist July 2015, she said she can rule out CFS but couldn't say it was ME as "there are too many things your GP hasn't done"

just over a year ago my ferritin went above range and I was told to stop taking iron meds, my iron has consistently dropped at every 3 month test since then, last test was Dec 2016, 8.2 (range 11.5 - 30) 2 weeks ago I started to really struggle physically, fatigue (normal for me but worse than ever) head hurts all the time, taking deep breaths, fat tongue on waking up, rang GP, she couldn't do anything more until she'd heard back from gastro, (she wrote on April 5th because in January my Immunologist said I need iron but gastro said not to take them!) I did ask again for a referral to Haemo but this was refused.

Today I got a copy of the letter from Gastro to my GP , she has requested iron studies, ferritin, TTG and CRP (CRP has been in range at every test, it's my ESR that has been raised for the last 2 years) but also stated

"her ferritin has always been elevated" -
Nope!

"she was not even anaemic when we last checked" -
so 8.2 is not anemic?!

"still withhold the iron tables and only treat when we have clear evidence of iron deficiency"
I DON'T have iron deficiency now, I have too much in stores (ferritin) and not enough circulating (serum iron) , BIG difference, and apparently taking iron could be dangerous.
​

 

[Cort]

I had IDA for some 18 years, until 5 years ago was otherwise fit and well then auto-immune issues started kicking in, had Thyroid Eye Disease, then became Hypothyroid, diagnosed with Celiac in Feb 2016 (asymptomatic) and am IgA deficient. saw in ME/CFS specialist July 2015, she said she can rule out CFS but couldn't say it was ME as "there are too many things your GP hasn't done"

just over a year ago my ferritin went above range and I was told to stop taking iron meds, my iron has consistently dropped at every 3 month test since then, last test was Dec 2016, 8.2 (range 11.5 - 30) 2 weeks ago I started to really struggle physically, fatigue (normal for me but worse than ever) head hurts all the time, taking deep breaths, fat tongue on waking up, rang GP, she couldn't do anything more until she'd heard back from gastro, (she wrote on April 5th because in January my Immunologist said I need iron but gastro said not to take them!) I did ask again for a referral to Haemo but this was refused.

Today I got a copy of the letter from Gastro to my GP , she has requested iron studies, ferritin, TTG and CRP (CRP has been in range at every test, it's my ESR that has been raised for the last 2 years) but also stated

"her ferritin has always been elevated" -
Nope!

"she was not even anaemic when we last checked" -
so 8.2 is not anemic?!

"still withhold the iron tables and only treat when we have clear evidence of iron deficiency"
I DON'T have iron deficiency now, I have too much in stores (ferritin) and not enough circulating (serum iron) , BIG difference, and apparently taking iron could be dangerous.
​

Can you see a hematologist? Something weird is going on that they need to figure out.

 

[catalonia13]

I wish! I've been trying since I saw gastro over a year ago, asked again last week, GP said 'lets see what gastro say' , will ask again when gt the blood results on Monday but not holding my breath!

 

[Cort]

I wish! I've been trying since I saw gastro over a year ago, asked again last week, GP said 'lets see what gastro say' , will ask again when gt the blood results on Monday but not holding my breath!

Please let us know what happens and good luck. I expect a study out soon from Mayo, ferritin and POTS.