Iron

[amy1808]

A friend of mine sally works in TV but also does a vlog . She is doing it at the moment on iron deficiency which she has . There is a very good interview with the Dr in Harley st that all you ladies may find interesting , I certainly did as it covers some of my symptoms and when I go to clinic today I will he asking about it . You can watch it on YouTube , type in Sally Jacks and she will pop up . I know a lot of people on here say check your ferritin levels and mine have been in the NHS guide lines , this will certainly make you think 🤔

youtube.com/watch?v=Yo-j8Ag...(Not working as expected?)

[MaryF Administrator]

Thank you, I have put the link in your post! MaryF

[HollyHeski Administrator]

Hi thank you for posting.

Prof Richards now works over in Australia but he still works closely with The Iron Clinic.

On top of the NHS range for ferritin, which as said is far to wide a range, please note that inflamtory diseases like sjogrens can give a false high result on a blood test.

For me, my readings have been between 15 - 25 for over two years, which I was told by the NHS being in range I wasnt allowed an infusion. Prof Richards reports told me that with my sjogrens I was iron defiecent!!

I have pushed for this with my GP with no luck, could not get it done locally but finally back in January I was given an infusion up in London (Guys NHS).

I did have a bad sjogren flare initially but within a couple of weeks I felt much improved.

Now 6 weeks later, my symptoms are much improved, especially my energy levels and sleeping pattern. My 6 week ferritin level is now 180 and I feel better than I have for many years.

[MaryF Administrator in reply to HollyHeski]

Great news....and great info. MaryF

[lupus-support1 Administrator]

Reposted to LUpus Patients Understanding & Support (LUPUS) with thanks!

[lupus-support1 Administrator]

I am iron deficient as a result of SLE but also from a condition called Thalassaemia.

[KellyInTexas Administrator]

Thank you, Amy.

Professor Hannah Cohen ( UCLH) Hematologist had me also see Professor Toby Richards the last time I was in London. I saw him specifically for a vascular consult, but we did talk about iron and ferritin. ( Professor Richards said to think about ferritin as bricks to build a wall. They are the basic building blocks of iron.)

Because Lynn and Mary made me aware to specifically check my ferritin level, I did.

I had a hematologist in San Antonio, ( had.... being the operative word here.)

He had never looked at it. When he checked it, the number was 16.

I was booked for an infusion of ferritin about a month later.

[amy1808]

What’s the difference between ferritin and iron

[HollyHeski Administrator in reply to amy1808]

Ferritin is not iron but is a protein in the body which contains iron. As ferritin is the main form in which iron is stored in the body the amount of ferritin which is found in the blood reflects the amount of total iron which is available to your body. ... Ferritin is therefore the best indicator of iron deficiency.

[milkwoman]

Thank you for posting this. I had a series of iron infusions starting December 20, 2018 and ending January 17, 2019. (Three infusions, 2 weeks apart). I have had low ferritin for YEARS and my doctors never gave it any concern even though I would bring it up at every appointment when taking about how fatigued I still was and how I just couldn’t maintain a consistent exercise routine. They always looked at my iron levels and would say everything was “fine.”

Finally, last December, when my ferritin levels dropped 34 points in 6 months while I was supplementing (!) I got my GP to order the infusions.

I was expecting things to improve instantly (but that’s not how it works). My ferritin level was tested 1 week after the last infusion and my number went from 23 (which was below range) to 329 (which, of course, is high above range).

Here I am a little over 6 weeks post the third infusion and I can say that my sleep is much improved and I am not as fatigued. I actually am able to accomplish tasks and not feel completely drained afterwards.

I believe I have an absorption issue so I will most likely need regular infusions to maintain health. My levels will be tested again in late April in preparation for an appt with my GP in early May. I am very curious as to what my results will be.

I will be researching Dr. Toby Richards and Dr. Kaitlyn Scott to find out more so that I can educate my GP that low ferritin IS really the best indicator for iron deficiency!