TS% 70% / Ferritin 25
Posted , 6 users are following.
Hello all,
My story... diagnosed C282Y homozygous mutant Dec 2018 at age 35. 950 ferritin. 30 phlebotomies between then and Oct 2019 to sub 50 ferritin.
Moderate reloading observed Dec 2019 (ferritin 54 / TS% 70%), phlebotomy done. Another done at 45 ferritin/ TS% 50% in mid Jan 2020.
Today I saw my hemotologist. My levels were TS% 70% and 25 ferritin. Hemoglobin 14.3; Hematocrit 40. RBC 4.26 (low). Hemo refused phlebotomy due to borderline RBC metrics and low ferritin, but I'm concerned about the 70% TS%.
What is ya'lls take? I feel like there are two camps on this issue of low ferritin/high TS%:
- Iron avid camp: I was overbled in Jan. Ferritin needs to increase irrespective of TS% to find correct iron balance
- TS% toxicity camp: ferritin is a poor marker of organ damage caused by iron mobilization. Get bled irrespective of ferritin until TS% is <45%
If anyone has a take on this issue I'd appreciate hearing it. Also, if you have any good resources/medical literature to back up your perspective I'd appreciate it so I can maybe present it to my hemo. I lean towards the 2nd camp of thinking... the risk of UIBC infiltrating organs is too high with high TS%... but I don't have the clinical evidence to back up this belief.
0 likes, 8 replies
sheryl37154 mctagga9
Posted
I am in the second camp, especially after reading "Worse outcomes of Patients with HFE hemochromatosis with persistent increases in transferrin saturation during maintenance Therapy", Edouard Bardou-Jacquet et al. My TS% remained high despite being de-ironed (<50) for years and I continued to feel terrible.
After talking to Prof P Brissot, a brilliant researcher, also from Rennes, France, at a conference, I continued to have vx even when my ferritin was in the early 20s or less, and finally my TS% came into normal range. Ferritin that low is not harmful, and I often end up with a ferritin level of <20 - I have even reached 8 (but that was early in the treatment when my levels were not always settled). PS: as long as your Hb is in a healthy range.
I can't say I feel like bouncing out of my skin, but I feel better that I am not creating some manifestation or cancer somewhere by the toxic situation of high TS%. As mitochondria is damaged by high TS%, I read that taking CoQ10 and Vit E helps repair this.
When I tried to extend time between vx, my ferritin shot up to >80 and I encountered arrythmia and chest pain. My hemotologist put me back into the 2 monthly class for 2 years, and I hated it. I had already had too many vx. So I told him that I do not intend to go 4 monthly again.
Lately I have started trying lesser quantity vxd (e.g. 350 mls, as opposed to 450-500mls) but still keeping to 3 monthly. Unfortunately my phlebotomist forgot on the 2nd once since, so I have not been able to gauge any difference. My last ferritin level was 11.
I am homozygous C282Y, and was diagnosed 9 years late in 1998. At the end of those 9 years of horrible painful, staggering, slurring, foggy, chest pain, suffering, my hips broke up from avascular necrosis - my blood was so thick with iron particles that it could not get into the finer capillaries that fed the bone, and no doubt a lot more damage was done.
In Prof Brissot's address at the conference, he described long term high TS% as toxic and fully supported the Bardou-Jacquet group outcome. Google him and you will find some references to that, and a lot of excellent papers as a result of his research of various aspects of hemochromatosis.
Good luck.
tom_70042 sheryl37154
Posted
great advice I am going to google him and take this up with my haematologist when i get reviewed in April , as my ferritin came down from 1220 to 35 after about 18 venesections end of 2018 I only had to have one in 2019 to keep that below the target he set of 100 the original he set was 50
I need to look into this TS% more as I never really looked at it just relied on lowering ferritin so thanks Sheryl for the detail here
By the way totally concur with the immobility situation I am now wracked with arthritis as an offshoot our our complaint
But we carry on keep moving much as possible
Stay healthy
mctagga9 sheryl37154
Posted
Sheryl, I appreciate your response. I have read many of our posts on this site, and your contributions are highly appreciated.
I have found several scientific papers describing non transferrin bound iron (NTBI) being high with high TS%, and it is this NTBI that is dangerous to cells and organs.
I hope to convince my hematologist of this relevance.
sheryl37154 mctagga9
Posted
Have you had your NTBI levels tested? It is not part of any of the many tests my haemotologist has done. I am seeing him next month so I will ask him.
I note that Prof Brissot has written papers on NTBI and its toxity but it has not been spoken of at any conferences that I have attended. There must be some correlation between it and reported TS% for him to say we should get our TS% down and ideally be <50/50, i.e. ferritin <50 and TS% <50. Maybe TS% reflects our NTBI???
lynnsk1 mctagga9
Posted
my ferritin at last blood test was ferritin 9 & 55%TS . originally i was overload ferritin 1900 & 105%, loaded in my joints and liver. I am under both Gastro enteroligist and Hemotologist, my liver is now stable but joints still arthritic due to the same, have gad one hip re surfaced(otherone feels like its due to be replaced) & have had 2 knuckles on one hand replaced awsiting other gand
my G.E says its mire important in getting TS% down as that shows the loading which is the more important.
lynnsk1 mctagga9
Posted
hi sheryl, in reply, i dont think ive had an NTBI so i'll ask next time i go. Ive never had a blood transfusion but i wasnt diagnosed until i was 60 (3yrs ago)
jax15282 mctagga9
Posted
i too am homozygous C282y and currently treating with phlebotomy.
It is my understanding that ferritin is NOT a marker of organ damage. With HH ferritin levels are an indicator of total body iron load.High ferritin...high iron load. Low ferritin...low iron load.
The best information I have found was via the Canadian Hemochromotosis Society...
You can find site by searching:
" October 2016 Canadian Hemochromatosis Society Guelph Ontario"
it is a video presentation by a Canadian who is internationally recognized as an expert in the field of Hemo/iron overload. He was a key player in the HEIR study and is
currently the medical consultant to the Canadian Hemo Society.
sheryl37154 jax15282
Posted
Jax - Sorry, but I have read Mctagga9's question and input and no where did he say that ferritin was a marker of organ damage. Also, after being de-ironed (i.e. to <50) one can still experience high serum iron, but as long as vx is kept regular ferritin will stay low.
TS% and NTBI that mctagga9 is talking about is a different story. Some, probably most, do not experience continually high TS%. Unfortunately, from personal experience and talking to others, those who do, have a harder time because of what it is doing to the body, and never feel better.
The research teams in Rennes, France have research results that confirm this.