90% Transferrin saturation: How worried should I be?
Posted , 7 users are following.
Hi, hope someone can put my mind at rest; mI am posting this in the Haemochromatosis forum, although I haven't been formally diagnosed.
I've had quite a few blood tests recently, following an abnormally high Transferrin Saturation of 90%;
Also, Serum transferrin 1.75g/l,
Serum iron level of 39.3 umol/L (a bit high).
Mean corpusc. haemoglobin(MCH) 32.7 pg (a bit high)
Everything else, including Liver, renal and Thyroid results are fine.
I spoke to a doctor, who didn't think I needed any immediate action; I have an abdominal scan booked for the end of June, which seems a long wait (and the way things are, could be longer..).. I suggested might it be worthwhile having a phlebotomy (or venesection) as an intermediate, and relatively harmless procedure.. but she said no, wait for a 'formal diagnosis', which will obviously be months away. Meanwhile, I'm worried permanent damage might be occurring!
Any thoughts welcome.
0 likes, 16 replies
mctagga9 lewisham_phil
Posted
Get your serum ferritin run. this will be an important diagnostic metric
sheryl37154 lewisham_phil
Posted
Your high TS% is a positive marker for haemochromatosis, but what is your ferritin? You do not say. This is important to gauge if delay will be reasonably ok.
You could always go and donate at a blood bank but they most likely will not take yours if you talk about high iron, etc.
lewisham_phil sheryl37154
Posted
Hi Sheryl, thanks for replying. You're right; the other results below were also marked as 'Abnormal',
Serum iron level 39.3 umol/L (Normal 5.8 - 34.5)
Serum transferrin 1.75 g/L ( Normal 2.02 - 3.36)
Thanks
Phil
sheryl37154 lewisham_phil
Posted
You do not know your ferritin level?
tom_70042 lewisham_phil
Posted
Hi you must get a ferritin blood test that is the marker but it might be difficult to get now because of covid 19
My out patient appointments in the UK have been put back until June and my haematology dept are sating stay away as I am in the at risk class age 69 as i have asthma and had a pulmonory embolism and pneumonia in 2018
The GP service are texting all to avoid coming in but I suggest you ring GP they will triage you first be positive and u want a ferritin blood test the result should take 5 days
i have been told to avoid hospital for a while when i go to get a blood test my nurse rings me back the same day with the result
our NHS is brilliant at least now it will get the super funding it needs rather than the neglect from politicians over the year
stay healthy friends
lewisham_phil
Posted
Sorry, found it!
Serum ferritin 715 ug/L (21 Feb 2020)
It's up from 575 on 31st December 2019.. so quite rapid?
mctagga9 lewisham_phil
Edited
Hello, based on your ferritin, combined with your high serum iron and TS%, you almost invariably have iron overload. I would request to get screened for genetic hereditary hemochromatosis (either C282Y homozygous recessive or C282Y/D62D compound heterozygous are the most common . This may be difficult to do for a little while given the current pandemic.
Good news is that your ferritin levels, while high, are not so alarming high that you should be worried of being in immediate danger. I had ferritin of 950 when diagnosed, and even that is considered relatively moderate with some people having SF of many thousands. It is absolutely something you need to get to the bottom of and likely treated through phlebotomy though.
lewisham_phil
Posted
Thanks mctagga, and other respondents. I have an appointment in 3 months (if I'm lucky with the current situation). In the meantime I'll maybe investigate giving blood..
sheryl37154 lewisham_phil
Posted
I am always amazed at the ignorance of drs regarding haemochromatosis. Starting vx immediately will have no impact on genetic results. If you have the genes, it does not matter if your ferritin is low - you still have the genes.
And you don't need an abdominal scan to confirm genetic haemochromatosis. If I had a ferritin level of 715, I would be seeking to donate and another opinion. Are you feeling ok, or less than par?
lewisham_phil sheryl37154
Posted
Thanks for replying Sheryl. You echo my thoughts entirely; it seemed to me a good pre-emptive move to give blood or start vx, hopefully before any lasting damage is done.
I'm not feeling too bad in myself; I cycle to work, and I feel my recovery afterwards is slow (my partner gets cross, as I'm flaked out when I get home), which I put down to age (I'm 56..).
I think I shall do as you suggest, and write to my GP practice, putting this all down.. It's difficult when Doctors are talking at you on the phone to question their confident appraisals.
sheryl37154 lewisham_phil
Posted
Yep, flaking out does it! My gp used to tell me to go for a walk before work - I would not get very far as I would have to lie down on the footpath to sleep and never get to work!! Not a day would go by without the wish to sleep under my desk, or on the road, or wherever.
I am afraid to say that after 22 years of treatment I still feel like I have been hit by a truck. I had to give up work (which did make things easier) in 2004 and I was struggling to last that long. It did take 9 years of severe symptoms before I was diagnosed (but only then when my hips broke up). The longer it takes to get treatment, the more symptoms that won't go away.
It has taken you a long time to build up to 715 and it depends on how long you have been having the symptoms. My husband who is homozygous H63D was about 554 at age 55. Yes, my husband and our son, as well as I, all have it. In the early months we all fronted up together for vx, till we started different frequencies.
Start having B12 enzyme injections 3 monthly (or more to begin with) and a practitioners brand Vit D3 forte drops if your D levels are down. Have the B12 anyway to support your venesections. I have also read that CoQ10 (a good brand) and Vit E help repair the damaged mitochondria.
Good luck with it and come back with more questions if necessary, and please let us know how you go.
jax15282 lewisham_phil
Posted
What country are you in?
lewisham_phil jax15282
Posted
Sorry for the delayed reply Jax; I missed your query: Anyway, I am in London, England..
lewisham_phil
Posted
I had an ultrasound check of my vital organs (liver, kidneys, pancreas I believe) a few weeks ago, fortunately not cancelled by the ongoing epidemic. My previous blood test results for my liver were fine.
The results were apparently good, with no sign of damage. I also have a long standing (from 4th March) appointment with a doctor at the Gastroenterology department due on the 30th June. It seems to me, if the Ultrasound looks fine, the Gastro-enterologist won't have much to do, and that it would be a better use of resources to book into the haemotology department.
What I really don't understand is why the GP can't get these tests underway (Corvid problems not-withstanding).
When I questioned my GP, and suggested maybe a round of phlebotomy to bring the levels down, she said they can't do anything more, and that 'first, we need a formal diagnosis from the hospital..' and that's that... but this could go on for many, many months. I know there are other priorities at the moment.. but I seem to be in a very slow process of ticking boxes that seem to have an inevitable conclusion and diagnosis: or at least, an inevitable treatment: Phlebotomy!
In the mean time, I have donated blood, as a small step to improve things.. I must confess also, that I've had a look online at self-administered phlebotomy, but my partner was horrified and gave me a good telling off!
I think I'm going to have to have another word with my GP...
lewisham_phil
Posted
Thought I'd check in to update: Finally the results from DNA test came through.. surprise surprise, hereditary genetic Haemochromatosis confirmed! Now undergoing monthly venesection. They'll recheck 'stats after the next visit.
I've told my two brothers to get checked, which would seem to make sense; it's also suggested that my 'adult children' be checked.. not sure why 'adult' has much to do with it, but I guess the chances of them having it are pretty low anyway.