Discover Top Posts Tagged with #transferrin saturation

I really ought to finish these damn Transferrin Saturation paper notes but I'm struggling with the line-by-line horror stories of how fucked up it is.

Like phew I don't even know what's worse:

• Transferrin Saturation as an indicator of Hepcidin production (oop)

• >50% Transferrin Saturation exposure associated with joint symptoms

• High Transferrin Saturation (>50%) also associated with the appearance of NTBI (Non-transferrin bound iron), which is likely linked to things like *organ damage*

• Therapeutic Phlebotomy treatment linked to an INCREASED iron absorption after procedures because (somehow. I haven't found exactly HOW yet) it decreases Hepcidin production.

It's such a fucking hot mess like what do we even DO with this information??? There's no hepcidin synthetics from a few (admittedly quick) googles (I *did* check the clinical trials website and nothing of interest/help). The paper in question talks about how a Melbourne study suggests that it may be more beneficial to *NOT* treat mild cases of iron overload. Which I find wild because the same paper also points out that a low ferritin does not mean you have a low transferrin saturation, and it's exposure to a high TS% over a long period of time that seems to be associated with worsening symptoms (particularly joint pain, ability to do work, athletic ability, and libido).

From my brief googles, there's no easy lab tests for Hepcidin. There's no easy lab tests for NTBI. These are things that could be doing who-knows-what and we can't even tell.

Add to it the whole Estradiol/Hepcidin link and it just all is an absolutely hot mess and do not like the implications of where this leads nor the fact that it seems very few people in research world have looked at this. (I'm not surprised. I'm not fucking surprised. They love to run with the myth that women with haemochromatosis are protected by their periods. In the words of a specialist I absolutely loathed, "you're self medicating with periods". Yeah. Sure. Tell that to my 18 year old self. Tell that to anyone who either knowingly or unknowingly is taking a Contraceptive Pill that has iron tablets instead of sugar placebos. [Because I only just found out THAT is a thing. I was always so worried about what's in the hormone tablets, but this was a whole new level of 'wot'].)

I'm rambling because I keep stopping every couple of sentences. This paper goes hard. Sure it's not perfect and there's a lot of unanswered questions too but there's plenty of food for thought and ooooh boy I'm sorry Dr Haemotologist Sir, it's gonna be one hell of an introduction session.

#rambles #iron #iron metabolism #haemochromatosis #hemochromatosis #transferrin saturation #ntbi #non-transferrin bound iron #hepcidin #estradiol #venesection #phlebotomy #an Etlu is angy about the state of play with iron metabolism and haemochromatosis research yet again #if I'm not careful I /will/ end up seeking out that biomed degree and doing it myself #(I'm so tired of being told women aren't a concern)#(like literally most of the BBC interviews are young women with the disease)#(can we just actually acknowledge that it affects young women and start looking into HOW it affects us)#(still pretty darn sure that >90 ferritin contributes to my PMDD mood swings)

The downside of going over these papers about things your body does is that you're very aware *your body does these things* and it's a mild crossover between existential crisis and body horror with every subsequent sentence you read.

"Even when recommended serum ferritin levels are achieved by maintenance therapy, patients remain at risk of developing or worsening general symptoms and joint symptoms, which greatly affects their quality of life"

Guys I know you're trying to find out this stuff in this paper but throwaway lines like this do nOT fill me with an overwhelming sense of hope ;;;;;

#rambles #haemochromatosis #transferrin saturation #ferritin #maintenance #chronic illness #chronic condition #I know where this paper goes and STILL it's a crisis every second line c'mon brain pull yourself together #all the doctors saying TS% is “nothing to worry about” pfpfffpfffff please. PLEASE. Y'all keep saying that because you don't actually KNOW #I'm so mad a bout this #when it hits 50% it's an indicator of NTBI - the BAD iron that does ACTUAL DAMAGE #and I had normal ferritin ranges at one point (almost anemic) and YET HAD A TS% OF 78%? LIKE COME ON HOW IS THAT “nothing to worry about”??