Hi everyone, I have a 'research' question regarding onset of GCA. Did anyone here have high Iron levels just before onset of GCA symptoms ? I believe high iron levels were the cause of my vascular system going haywire. I developed Micro Vascular Angina totally out of the blue with 2 Cardiologists commenting I was the healthiest patient they had ever seen, however the tiny blood vessels inside my heart had started to malfunction - for reasons unknown. Then 6 months later I started with PMR pains followed by GCA head pains and was diagnosed 3 months later, still with very high iron levels circulating in my blood. I have since had 5 venesections to reduce the level of Iron, but so much damage has already been done.
Thankyou to everyone on this site for your amazing info, help and assistance, I don't like to think about where I would be if it were not for you. My doctors are quite useless when it comes to GCA, like most other's docs. Again thanks a million. xxx
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That’s interesting my sister has recently been diagnosed with hereditary haemachromatosis ( probably not spelt right) I have LVV and on asking my consultant he said probably not connected even though my ferritin level is double the top normal range. I am waiting to see what the haematologist advises my sister in regards what if any family members should be tested
I believe for me at least my high ferritin was the cause of my vascular diseases but my ferritin was increased 7 times in a matter of minutes by having an Iron injection. I believe this sent my vascular system into panic.
Yes I know that too ...as my Rheumo pointed out to me !!! However, as I pointed out to her my Ferritin levels soared from 50 to 360 overnight (with the iron infusion) in Dec 2019. I developed PMR/GCA in July 2021, 18 months later. The levels of ferritin have stayed in the high 300's until I started to have the Venesections 5 months ago, and since then they have fallen to my normal levels. It just remains to be seen if I have any more vascular damage ....hopefully not. x
It isn't something I have heard mentioned in the 12 years plus I've been involved with PMR/GCA forums. Have they decided if it is primary or secondary to something else? Has anyone else in the family got it?
In GCA it isn't really the vascular system that has gone wrong as a cause - it is an autoimmune disorder where inflammation leads to the development of multinucleated cells in artery walls which make the walls swell and narrow the space for blood to flow through. If that narrows too much the blood and oxygen supply to distal muscles and nerves is disturbed and is what leads to the muscle pain seen in PMR and GCA. In specific cases, if the blood supply to the optic nerve is too low the nerve is damaged, and may even start to die off, possibly being damaged so much that it causes visual problems, even loss of vision.
shows the association og iron overload and autoimmune disorders - concluding they aren't uncommon but similar to the incidence in the (nominally) health population. You may be right in thinking that the haemochromatosis made the PMR/GCA worse by influencing the inflammation - which usually results in the anaemia of chronic illness but didn't in your case. Haemochromatosis affects t-cells in the immune system - and t-cells are thought to be involved in one underlying mechanism of inflammation in GCA but as I understand it, haemochromatosis results in increased CD-8 t-cells and reduced CD-4 t-cells but it is CD-4 t-cells that are involved in GCA which doesn't seem to match to me.
Thanks for your brilliant reply, you never cease to impress me with your knowledge about this 'condition'. My 'story' leading to GCA is a little different from the norm.. but here goes. I was born with Thalassemia minor inherited from my Greek father. Throughout my life until MVA happened 2 years ago, I was the fittest female for my age that I know. I played comp Netball for 40 years, Tap dancer for 50 years...had to stop tapping at onset of MVA age 68. So in spite of always having low hemaglobin and low ferritin levels I was never anemic. 3 years ago I saw a new GP who said my blood levels were just too low and she insisted on giving me an Iron Infusion. Within days of that I developed bad chest pain on exertion (I live at the top of a hill and every day did the morning walk/jog for years but could no longer walk up my hill without chest pain ) and was diagnosed as Micro Vascular Angina. My cardio said I was the healthiest patient he had ever had. That got me scratching my head ! Anyway, I researched my family ( father left when I was little and I didn't have a clue about my Greek relatives). I found out that my father, uncle, sister and niece all have Thalassemia and Hemachromatosis. I had a test which came back negative but with the byline ...Familial Hemachromatosis does not show up on tests but when several close members of the family have it then the likelihood you have it is very high.
My genetics it seems are rather complicated and very different from the run of the mill, I also have a raised level of Interleukin 6 which I know is a major factor in the inflammatory response. After the Iron infusion my levels of Ferritin increased 7 times !!! and remained at that level for 2 years, until I finally persuaded a doctor to do some Venesections. I am now back to my normal levels and feel just fine. Knowing the way Iron damages the endothelium of the blood vessels... I just think it is quite obvious that there is an element of iron damage to my blood vessels and once damaged the inflammation then takes over. Having 7 times my 'normal' levles of iron for 2 years cannot be a good thing. ! I also had 2 covid jabs weeks before the PMR started and then GCA followed the 2nd jab. So all in all I am on a bit of a quest to know more about iron overload damaging blood vessels and then causing disease, in this case GCA and MVA.
I would love to hear your feed back on this. Thanks in anticipation. Anne.
Not sure I have the knowledge for that - but you might suspect that that GP's iron infusion may well have been the trigger for a cascade of events though to be fair what they did was the logical response.
Yes, you are correct about the doc doing 'the logical thing' and that is why I would never take 'action' against her. But what it does highlight is that because of genetics some people are so at risk of damage, even death from a lack of genetic knowledge, and I find most doctors resistance to investigate 'genetics' is extremely disappointing. My Rheumo wants nothing to do with finding out how my body works - I have even offered to pay for my own genetic testing but she says she wouldn't change her treatment protocols even if the testing showed 'abnormalities'. It is very unsettling to say the least.Thanks for the link, I think I have read it but as you say there are several other leads it refers to so.... here goes. Thanks again.
fascinating reading and great explanation PMRpro. They noted raised ferratin in recent blood test and are monitoring mine. My GP practice and the pharmacist there are really on top of it and proactive.
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