Experiences with

Haemochromatosis

tests being done for haemochromatosis but more than likely alcohol related. cutting alcohol will be hard and I’m getting help for it. it’s really worrying me as doctor is amazed I’m not yellow. Did anyone manage to bring down levels quickly and if so, any tips?

Pearl is an acronym of - Prospective Cohort for Early Detection of Liver Cancer The Pearl study aims to recruit 3000 people with liver cirrhosis caused by one of the underlying conditions of HCV, HBV, alcohol-related, NAFLD and haemochromatosis, who have never been diagnosed with HCC.

Never got that referral but much later Doc said they heard from haematology and there was no sign of Haemochromatosis so should be fine. I wasn’t totally convinced as my GP is very ‘blase’ with little detail and if you get 5 mins you’ve done very well.

Do you have and want to help make the way it is diagnosed and treated in the UK better for patients?

They have advised that you are at risk of developing Haemochromatosis, and to check your bloods every 6 months. The level at which action is required, is a "transferrin saturation index" of greater than 60%. Normal range is 15 to 45%. Your latest level is 48%, so well short of concern.

Hi I have had haemochromatosis for 10 years and have always had venesections but now my ferritin is very low 14 and no venesection for over a year. Been suffering for constipation for 2 years. Anyone had ferritin drop no blood letting please ?

My question is whether anyone is aware of the development of Haemochromatosis as a result of MPNs/ET or Hydroxy or whether the spike in iron levels is a potential side effect of the ET and/or Hydroxy unrelated to Haemochromatosis?

As suggested, I'm posting a separate post to ask for assistance interpreting my Iron panel. (I've included a couple of extra bits). Wondering how to interpret the ferritin alongside ok CRP? Any guidance, on any of it, appreciated. Plasma CRP 2.1 ((0 - 5.0) IRON 16.8 (5.8 - 34.5) TRANSFERRIN 2.1 (2.0

You gave me very helpful advice after blood test iron panel back in February when results were: units microgm\l Ferritin 77 Iron. 28 Transferrin 2.46 Transferrin saturation 45% Total iron binding capacity 62 and I've been taking iron supplements as you advised alternate days since then. My blood tests

hi I get my labs drawn every 3 months. any thoughts on these? I take 112 mcg tirosint in the AM. Only uploading the labs that have resulted, some are still pending! Tsh 1.32 range 0.40-4.50 Ft4 1.2 range 0.80-1.80 Ft3 3.1 range 2.3-4.2 Folate 12.6 range >5.4 Vitamin d 47 range 30-100 Vitamin b12

Hi, Anybodys thoughts on transferrin levels? TSAT seems to be used as ONE marker for "iron sufficiency", and it is rare to see any discussion about the context. TSAT is only a calculation based on transferrin levels and serum iron. Both values are affected by inflammation, nutrition etc. I find

Finally managed to write my emails as suggested by my endocrinologist, mainly to my MP, Health Secretary & Chair of the East Lancashire NHS Trust to ask why I'm unable to do a trail on liothyronine to see if it will help me etc. I've also asked my endocrinologist if he can provide a prescription via

What is the relationship between ferratin and iron. Doctor tells me my ferritin is good but I see my iron is low and my transferrin is abnormal. I also feel very fatigued, low concentration and hair thinning. Doctor says because my ferratin is good, I don't need extra iron.

I have now had an increase in Liothyronine (after seeing private thyroid Dr) and three months on my levels are better and I feel better. I have been working on my Vitamin levels as well latest results - taking B12 and Basic B complex latest results B12 737 range 145-569. Viamin D 99.6 range 50

Wow. A few months after my RLS changed from mild to severe (very likely because of a spinal injury where I had multiple fractures in a couple vertebrae), I tested my Ferritin and then started taking iron in the amounts and schedule Sue recommends. Now, 4 months later, my Ferritin has literally not changed

…..initially a great struggle….lack of diagnosis, incorrect diagnosis, incomplete diagnosis…..wrong type of medication, multiple times as they did not work. 2015 - diagnosed with hemochromatosis and NAFLD. Treatment was phlebotomy until ferritin dropped from 1300 down to 50. Which took about 12 months

Hi. I was recently diagnosed with hemochromatosis based on slightly off bloodwork and genetic test. Neither of my parents had hemochromatosis but both were carriers and I inherited the gene from both. My ferritin is currently 111 (I previously always had very low ferritin and actually had one transfusion

[u]Inflammation[/u]CRP HS - 1.640 mg/L (Range: < 3) [u]Iron status[/u] Iron - 13.9 umol/L (Range: 10 - 30) TIBC - 75.5 umol/L (Range: 45 - 81) UIBC - 61.6 umol/L (Range: 13 - 56) Transferrin Saturation - 18.4 % (Range: 25 - 45) Ferritin - 8.99 ug/L (Range: 30 - 169) Appreciate some feedback

Hi, I've just managed to get my GP to take a full iron blood test and the results are as follows, are these ok or do I need to take iron supplements. Sorry I have no idea what any of these mean and the GP has said they are all normal! Serum Ferriin: 142.8 ug/L Transferrin Saturation index 32%

I've recently had lots of very helpful advice regarding a question I had about iron levels (BIG thanks to everyone who replied!), and, as a result, I'm logging my daily iron intake to try to get a clear picture of how much I take in through diet, without supplementing. I came across this reference website