Hi, I could use some advice, I may have HH (Dad is HH) and I am panicking that I may already have damage. I asked my GP to test for HH when I originally found out my Dad had it, probably around 2012. In hindsight, I think they tested ferritin, not for the genetics. I was given no advice or feedback and assumed all was well. In 2016 I became ill, - fatigue, depression, muscle pain and weakness in arms, limbs going numb overnight. Got lots of tests (although weirdly not my iron) and nothing was found. I remained ill for a long while, off work for 18 months, gradually regained some health but never back to full functioning. Beginning of this year I began to notice increasing joint pain, poor exercise tolerance, more fatigue, restless legs, and more recently memory problems, concentration problems, more pain, more joints affected (hands, feet, elbows and now shoulders). After convincing myself it was thyroid and more tests and still no answers I finally noticed this week (with the help of some informed folks on facebook forums) that my ferritin was on the high side (301, with 200 being the top range recommended for non-menopausal women). My GP didn't even notice, despite me reading the riot act about having my symptoms ignored. Anyway I got him to listen when I mentioned the family history of HH and had blood taken today for genetic testing. My worry is that given how much pain I have had in my joints for so long, that there will be lasting damage. My liver function tests show slight damage, but can anyone tell me if being at my current level might have caused permanent arthritis? I know I'm getting ahead of myself as not yet diagnosed but I am freaking out, and angry that they may have failed to spot this early enough and it may have caused avoidable damage. Also I wonder if the joint pain will be helped by venesections, if I get that treatment? Also has anyone gone private for venesections if the NHS wont deal with it quickly enough?
Thanks for any input.
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F1ona
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I am sorry to hear you have bee through a lot medically.
First you need to get your iron studies done. Iron, ferritin, transferring saturation.
Then if raised, your genetics.
But, if yr Dad has haemochromatis, then you need genetics, and all bloods.
And, if you're female and menstruating, you can still have haemochromatosis with normal iron, because of periods. Females present later in life therefore.
No need for private venesection. NHS has excellent prompt services.
Joint issues are less common but don't improve with venesection as I understand it... it get complex.
Ferritin is an inflammation marker so can be raised for other reasons other than Haemochromotosis. The most important test is the genetic to diagnose Haemochromotosis.
Your ferritin levels are raised but not enormously. Some people aren't diagnosed until their ferritin levels have been in the thousands for many years and that is when organ damage can occur. You will need a full iron panel to assess ferritin and transferrin saturation. T/S is the ratio of two other iron tests, which indicates how full (saturated) the body’s system for transporting iron is. Serum iron is divided by total iron binding capacity (TIBC) to give T/S as a percentage. Also, haemoglobin levels need checking because you can't give blood if they are low.
Although your father has been diagnosed, you have to have inherited an altered (mutated) gene from both of your parents to have Haemochromotosis. The most common mutated gene is called HFE on chromosome 6 and interacts with the cell receptor for transferrin which binds and transports iron in the blood. The known mutations of the HFE gene are C282Y and H63D. The C282Y mutation is most common in white populations.
You need to get your GP to refer you to a haemotologist. Most GP's aren't very clued up on Hemochromotosis (mine wasn't) so make sure you arm yourself with some literature.
Having regular venesections reduced my iron overload and all aches and pains but I had uncontrolled thyroid issues as well which have now been sorted so it is hard to know exactly what bought about my well being. All your symtoms could be related to low thyroid hormone, especially the aches and pains. Have you had TSH, T4 and T3 tested? NHS often only test TSH which won't give you a whole picture of how your thyroid is functioning.
NHS have been good regarding venesections. I just go to my local hospital who slot me in the the day unit. I only need venesection about three/four times a year now.
You are right. Ferritin can be raised inflammation. All Drs know, or should know.
Father has H. 1 in 4 chance of inheritance if mother homozygous too.
It's my belief, ferritin should be standard test for all after the 40yrs. Too many get into the 1000s and the macrophages have set to work on the liver.
Also... I am interested in how to ramp up activity on this site. Any thoughts?
Don’t know how to ramp up activity on here. I helped with the Haemochromotosis UK newsletter when they originally set it up and advised twice of HeathUnlocked but they seem to prefer the very public Facebook page as their support for members. 🙄
Hi I have confirmed hemachromatosis I have two C genes from both parents. My last blood results were ferritin 219 my TS was 83-87% my iron was 34.4 my tibc is 44.4 I have low thyroid issues I’m on ndt naturethroid 2grains a day . I’m experiencing palpitations anxiety racing heart chills sweats tremors etc my bilirubin was 15 everything else B-12 447 magnesium 0.80mmol I’m low on vitamin D would hemachromatosis be causing my symptoms? Waiting on vsections but not happening with covid 19 . Any support would be great or advice.
Welcome to our forum. Sounds more like adrenal stuff going on than effects from elevated iron.
I have haemochromotosis and thyroid issues too. I have medicated WPThyoid for about 4 years after Levothyroxine made me more ill.
For many the body will only tolerate and utilise thyroid hormone meds well when all vits & nutrients are optimal. Inadequate thyroid hormone (either medicated or amount utilised) can impair nutrient absorption in the gut & low Vit D is common in people with thyroid issues.
If bilirubin is elevated this is also common as insufficient thyroid hormones levels can slow excretion from the liver. Mine were raised before hypothyroidism diagnosis.
Check out ThyroidUK as you will find lots of answers there. Also supporting the adrenal glands that could be compromised by low thyroid hormone.
Sorry to hear you are having to wait for phlebotomy. Me too but I am feeling fine. Your ferritin although elevated isn’t huge. Some go into the thousands! TFS should reduce as overload depletes. Just ensure adequate haemoglobin levels continue once phlebotomy starts if they insist on a quick succession to achieve target range or you can end up feeling terrible.
Hiya think my bilirubin is 15!and range is 0-15 I think it’s my thyroid causing all this and can’t find anybody to help. My gp just says your in range.
Hey, thank you it's good to get some replies, I am in a few of the facebook groups now, but a bit concerned about the main one being so public. Anyway, thanks for replying. I had bloods taken for genetic testing, so guess its just a waiting game now. I know ferritin can be related to inflammation, if its worth anything, my crp and esr are both normal...and I have no other reason to suspect inflammation. I've had TSH, and eventually FT4 and FT3 tests (all normal). I had bloods done on yesterday for iron, ferritin and transferin (only because I asked, GP was just going to wait for results of gene testing! ). Will see what they say. I hope it has been caught early enough, although after 3 years of being unwell which could have potentially been avoided it is hard to look on the bright side right now. Thanks for replying though.
No, because transferrin saturation will also be increased when excess amounts of iron are present in the body, as in haemochromotosis. Many consider only ferritin levels but it is T/S that indicates the bodies saturation levels of iron. My T/S was 99% upon Haemochromotosis diagnosis in conjunction with elevated ferritin levels.
However, that doesn't rule out your Haemochromotosis diagnosis because only genetic testing will do that and it may be that menstruation has taken care of the excess iron as in the case of many females including myself.
Normal serum iron levels for women range from 26 to 170 micrograms of iron per deciliter, which indicates that yours at 21 are actually low. Remember ferritin is only a protein carrier of iron and may be raised for numerous reasons. Iron behaves in mysterious ways and as said above knowing haemoglobin levels gives another important indicator as iron is important in the making of haemoglobin which is a vital protein in red blood cells giving their colour and carrying oxygen around your body.
I know this is late, but just now saw post. Here in US it is recommended to have family genetically tested.
I don't know about achey joints, but RA has a plethora of data correlated to us. So check it out their website. What is commin is iron fist, which is considered a psuedo gout in hands. I suffer from this and as a result have lost strength in hands. Don't panic. It takes a while for the phlebotomies to bring down your ferritin levels. Is a process like everything else. With this pandemic, it is not considered life threatening to have your blood letting done. I laugh when i think about all the kings over time, and the fix all cure. But we are a select group of people for which this ancient cure all works. Lol,
Rule number one, we have a blood disorder which is controlled by removing blood, we don't need to add unknow toxins to our system to treat this. Rule number 2. Its a process and takes time. Rule number 3.
Relax, don't stress, and don't take life too seriously. This pandemic has put a lot of things into perspective. Because of heart damage as result of this disorder, i fall into high risk category for covid 19 complications. So im using my "good china" and I'm buying those shoes i want. Slow and steady wins here. Don't stress the small stuff, its all small stuff, and most importantly...don't take yourself to seriously! Life is short, and its about the journey, not the destination. Stay safe, stay well, and God bless. WW
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