Joints have started to hurt badly in past 3 months - what can I expect?

Hello Boris, I too have Hemochromatosis but was only diagnosed earlier this year at the age of 72.

As you can imagine all of the damage has already occurred for me. It is my understanding what you said about it wearing away joints is true. I have had two hip replacements and spinal problems and am now severely disabled, now my shoulder joints are affected and will need replacing soon. Wrists, fingers ankles etc are all

extremely painful and the recent very hot weather has made things a lot worse. Maybe this is why you are

in so much pain now.

Regards Marji

For the last year I have been feeling fatigued and few months ago I was told that I have hemochromatosis which explain whys for the last 4-5 years I have been suffering severe hand aches and pains . I have been getting blood taken to get my ferritin levels down which is now apparently at a good level of 300 . I have read that I should actually be trying to get my level down to 125 to 150 and I was wondering if this was the case as I seem to feel ok for a few weeks and then the fatigue returns not mention the joint pains seem to increase not only in my hands but the elbows , knees and shoulders . I have seen a rheumatoligist who basically told me that I have arthritis from the hemochromatosis and to take anti inflamatory tablets and to basically deal with it , it is just a side affect from the iron and the damage was done . Aches and pains are one thing but the fatigue at this point in time is the big problem , it is essentially destroying my life as it is extremely difficult to continue to work especially being a tradesman which can be quite a physical job at times not to mention it would be nice to actually have some form of social life again . So in short I would love to hear about anyone elses experiences battling the fatigue and how long it took to get under control and what level of ferritin level they were told they should be at .

Thanks Phil

G'day Boris

Tis pity that HH is so under understood by medicos world wide. I am surprised that your doctor relies on Wiki for his information. There are many good web sites giving clear, easy to understand info. A hint, if the site has adverts, don't bother. It seems to be true that osteoathritis is one of the conditions that does not respond to phlebotomy. My ferritin has been around 200 for some years, down from 1700. I was lucky to be diagnosed thirty years ago. I am a sixty year old double dose HH patient. I have severe 'iron fist' ,requiring three lots of surgery over the past five years. Unfortunately my liver damage and asthma preclude the use of anti-infamatories. This basically means 'live with it'. It sounds trite but you can learn to live with it. Why get upset with something you have no control over? Learn to pace yourself, work within your capabilities, and prepare for retirement. I also work with my hands in the furniture industry. Though I cannot work to the pace I would like, I pass on my skills to my employees and tackle the more challenging or interesting jobs, leaving the mundane to others. I hope you can organise such flexibility.

Don't let it get you down. Join the British Haemochromatosis Association. They are a font of information and support.

Good luck and take care

May the magnet be with you.

Well done staying positive about things your cant change has got be a great help in these situations. I admire you and your positive outlook x

Boris, what was the lowest that your ferritin iron was taken down to? A Haemotologist will take it down to at least <50 to get the toxic iron out of your organs (and hopefully joints), if managed by a gp they tend to just take you to the normal level.

always ask for copies of your test results, so you can work out your optimal levels (when you feel best). mine is 34. horrifyingly, i have found out recently that when my fe was 56, i had severe fatigue, body pain, and arrythmia. 2 days after my venesection (every 3 months now), all that went away.

i have had both hips replaced but this happened because my diagnosis was delayed 9 years despite severe symptoms. my blood was so thick with iron it blocked the finer capilliaries that feed the bone, so my hip bones died and broke up. osteonecrosis.

yep, that fatigue and pain is bad when i am above my optimal level. each venesection of 450-500 mls (1 pint) reduces your fe by about 24-25 mcgs. try emu oil (100%) if you can get hold of it. first sign on pain in my hands, i rub some it. don't give in - keep fighting.

go to iron disorders institute org, go to forms, click on haemochromatosis reference chart (2.27mb), print it and take to your doc if necessary. page 2/2 most relevant to you, gives normal blood ranges and lists all the organs that hh affects.

the ignorance of health professionals about this disorder is criminal. the best you can do is educate yourself and in turn educate your doc.

good luck and let us know how you go. we haemos care.

to="" get="" the="" toxic="" iron="" out="" of="" your="" organs="" (and="" hopefully="" joints),="" if="" managed="" by="" a="" gp="" they="" tend="" to="" just="" take="" you="" to="" the="" normal="" level.="" always="" ask="" for="" copies="" of="" your="" test="" results,="" so="" you="" can="" work="" out="" your="" optimal="" levels="" (when="" you="" feel="" best).="" mine="" is="" 34.="" horrifyingly,="" i="" have="" found="" out="" recently="" that="" when="" my="" fe="" was="" 56,="" i="" had="" severe="" fatigue,="" body="" pain,="" and="" arrythmia.="" 2="" days="" after="" my="" venesection="" (every="" 3="" months="" now),="" all="" that="" went="" away.="" i="" have="" had="" both="" hips="" replaced="" but="" this="" happened="" because="" my="" diagnosis="" was="" delayed="" 9="" years="" despite="" severe="" symptoms.="" my="" blood="" was="" so="" thick="" with="" iron="" it="" blocked="" the="" finer="" capilliaries="" that="" feed="" the="" bone,="" so="" my="" hip="" bones="" died="" and="" broke="" up.="" osteonecrosis.="" yep,="" that="" fatigue="" and="" pain="" is="" bad="" when="" i="" am="" above="" my="" optimal="" level.="" each="" venesection="" of="" 450-500="" mls="" (1="" pint)="" reduces="" your="" fe="" by="" about="" 24-25="" mcgs.="" try="" emu="" oil="" (100%)="" if="" you="" can="" get="" hold="" of="" it.="" first="" sign="" on="" pain="" in="" my="" hands,="" i="" rub="" some="" it.="" don't="" give="" in="" -="" keep="" fighting.="" go="" to="" iron="" disorders="" institute="" org,="" go="" to="" forms,="" click="" on="" haemochromatosis="" reference="" chart="" (2.27mb),="" print="" it="" and="" take="" to="" your="" doc="" if="" necessary.="" page="" 2/2="" most="" relevant="" to="" you,="" gives="" normal="" blood="" ranges="" and="" lists="" all="" the="" organs="" that="" hh="" affects.="" the="" ignorance="" of="" health="" professionals="" about="" this="" disorder="" is="" criminal.="" the="" best="" you="" can="" do="" is="" educate="" yourself="" and="" in="" turn="" educate="" your="" doc.="" good="" luck="" and="" let="" us="" know="" how="" you="" go.="" we="" haemos="" care.="">

always ask for copies of your test results, so you can work out your optimal levels (when you feel best). mine is 34. horrifyingly, i have found out recently that when my fe was 56, i had severe fatigue, body pain, and arrythmia. 2 days after my venesection (every 3 months now), all that went away.

i have had both hips replaced but this happened because my diagnosis was delayed 9 years despite severe symptoms. my blood was so thick with iron it blocked the finer capilliaries that feed the bone, so my hip bones died and broke up. osteonecrosis.

yep, that fatigue and pain is bad when i am above my optimal level. each venesection of 450-500 mls (1 pint) reduces your fe by about 24-25 mcgs. try emu oil (100%) if you can get hold of it. first sign on pain in my hands, i rub some it. don't give in - keep fighting.

go to iron disorders institute org, go to forms, click on haemochromatosis reference chart (2.27mb), print it and take to your doc if necessary. page 2/2 most relevant to you, gives normal blood ranges and lists all the organs that hh affects.

the ignorance of health professionals about this disorder is criminal. the best you can do is educate yourself and in turn educate your doc.

good luck and let us know how you go. we haemos care.

>

I too have H.H. with just one marker from my Irish family background. I have been diagnosed with arthritis in my left knee and right elbow. Take paracetamol was my advice and no mention of the H.H. connection. I was told keeping my count below 300 was my goal. I get the count checked yearly and if it goes over I will return to the hospital. My Grandmother died at 54 with this condition so I consider myself lucky to have been diagnosed at least. I will keep a close eye on it as Doctors do not always know best. It is a common ailment in today's society so why do they not know more about it. There is nothing you can do about it as it is a genetic condition and I have it and I befriend it. Together we will work to keep me healthy. I try not to fear it or spend too much time reading up on it. Once you get over the shock of having a genetic mutation in your body you realise that pretty much all of us have mutations now. This just happens to be ours and some are much worse. So I count my blessings and try not to let it rule the way I think and feel. Don't ignore it check it at least yearly, eat less red meat or none at all and do everything you can to look after yourself. If you get varying symptoms check them out and adapt to the changing circumstances. Good luck and stay positive. x

Hi Lynda, Am I right in reading that you are a carrier only with only one faulty gene? That is why you are getting away with checking it once a year and keeping your level below 300. Quite different to those who have a double mutation. It cannot be glossed over as easy as you have been able to.

When you have only one faulty gene, you are not generally considered to have Haemochromatosis. Something sounds wrong there. Maybe you should read up on it and find out more about it.

If I had only that I would go donate blood every 3 months to give myself optimal health. Your grandmother must have had a double mutation for her to die so early.

No I have only one allele probably from my Irish blood Father and I have been genetically tested for H.H. and it is confirmed. It is not as strong with one marker but as my Grandmother (who may have had two as both sides of her family are Irish) shows if the iron levels build up in your organs it can give you what appear to be kidney, heart, liver problems etc., but at the end of the day the cause is H.H. that has given you these other problems because of the iron build up. Interestingly I also had a condition called endometriosis which might well have helped me not build up iron as quickly. If you have two markers I presume things get worse more quickly but panic wont change that. I was attending the hospital 3 times a year but felt it a waste of NHS resources when I could have a simple blood test through my Doctors surgery and if the count goes up drastically I will return to hospital appointments. I am managing and hope to keep my levels below 300 now but until the next count who knows. My knees and elbows are not happy bunnies but again I have learned to accept them although I do grumble from time to time. Having had one long term condition before this I know moaning wont help me it will only pull me down and that can lead to depression and anxiety on top of everything else. So I try to stay upbeat. I adapt to the situation I am in as best I can. My Irish side gives me sensitivity and I would not be without it. I hope this helps. x

So it sounds like you are Heterozygous ? C282Y or H63D? Normally someone who has only one faulty gene does not have high ferritin iron levels. They have to also have TS% higher than 40. What is your TS% level?

Sometimes people get iron overload when they have another cause, like inflammation, infection, malignancy, fatty liver. Perhaps the inflammation in your knees and elbows are causing a higher level of ferritin iron than necessary, but if you venesected more often it could relieve them.

Also 200 is the highest level that a female should have. I too had/have severe endometriosis but this did not reduce my ferritin iron levels. I just had a lot more places for the ferritin iron to deposit. I say 'had/have' because when I had a hysterectomy at 38, the surgeon tried to remove all the endometriosis that his eye could see right up to under my diaphragm. But it grows back again, or tiny dots of it grow and enlarge.

I used to donate blood before I was diagnosed and used to bleed heavily before hysterectomy, and as soon as I had the hysterectomy, I started to iron overload severely. My blood was so thick with iron that it blocked the finer capilliaries that fed the bone and the hip bones died - breaking up. Not osteoporosis - it is osteonecrosis. I also iron overload in the heart, but my liver and pancreas is fine. As we are prone to cancer, I also have had 2 cancerous episodes and have an MRI every 3 months to catch the return of cancer early as another return has a high morbidity rate. It is not breast or gyneocological but 2 different types of cancer. Everyone is different.

These guys in earlier responses who have full blown haemochromatosis with 2 faulty genes, are not panicking, they are suffering very badly, making them unable to continue working and earning an income. Their health has been badly damaged. I walk in their shoes too so I know what it is like.

I am not telling you to panic but become better educated so that you can monitor your iron levels properly.

My condition motivates me to try to help other people from suffering unnecessarily from undiagnosed and badly treated haemochromatosis. I coordinate a support group for it and I get a lot of phone calls from people asking me for help and I am able to direct them to a conscious doctor who also treats haemo correctly, in the hope that they do not end up terminally ill or their lives destroyed. Maybe you could find a support group in your area where you can join the campaign to support awareness of the condition.

I was told that if it goes over 300 I should act on it. It does hover near 300 ever since diagnosis. I have the C282Y type. I too had a hysterectomy at 38 and Endo may have kept my levels down. I do not know what a TS level is so if you could let me know more about this I will check at my next appointment. Perhaps my not wanting to waste NHS resources is not in my best interests and I should return to hospital inspections. My desire to embrace my mutations could be doing me no favours.

Once you have a Full hysterectomy and no longer have a womb endometriosis stops growing it is caused by yet another gene mutation which I feel has a H.H. connection potential. We are like dominoes once we get one thing it can lead to another and another and so on. Endo could well be mutated because it is holding back the potential for thyroid trouble and in doing so stopped one problem and created another. Once Endo is beaten of course the potential for thyroid problems returns. Every mutation is trying to help us but for every door we close another one opens with the potential for more problems. It is almost impossible to track all the potentials. Maybe its time for me to return for a thorough check over. x

TS% is Transaction Saturation %. Very important to know and for diagnosis.

As I had a hyterectomy and oopharectomy (no more hormone production) I went on HRT immediately. HRT (oestrogen) keeps endometriosis active. Chanced upon a very hormone cluey dr when I was chasing HRT implants. As soon as I mentioned having had endo, she said I would benefit from taking progesterone too. It reduces the affect of oestrogen on endometriosis.

Previously my gp would not give me progesterone because I did not have a uterus and it would cause terrible mood disorders. Well, it did not cause terrible mood disorders at all.

i have come across a lot of women with Haemo AND endometriosis. I also suffered thyroid problems for years but test levels always normal. Finally found multinodules on one side and it had to be removed. Test levels were still normal. I was finally diagnosed with hyperthyroid in late teens when my endometriosis was already evident - opposite to what you are saying, but I will try to check your connection out.

So much to learn in order to look after ourselves. We cannot rely on drs. I don't know where your dr got 300 from, unless he only knows about males!

I am glad to hear you are going to check Haemo out more and take control of your ferritin iron levels.

Check out the Iron Disorders Inst as per my post on 4 Feb. Very clarifying.

I too had a full hysterectomy. You should not take HRT for at least six months after surgery and then a mix of oes and prog is given. This should stop the return of endo. I didn't sleep well for ten years after surgery so I do think the HRT can have a drastic effect on your sense of well being. I no longer take it because my weight was a problem for me. My weight stopped increasing when I stopped HRT so that is something at least. Our bodies are a string of connections and mutations will give us various problems. We need to be vigilant and look after ourselves because we cannot depend on Doctors it took me twenty years and many health problems before a final diagnosis of endo only finding it when it had torn my appendix to ribbons after two near death experiences. I am grateful to be alive and appreciate every moment and I do feel that positivity has been a help to me. I wish only to guide and do not feel that I am telling people to pull themselves together as though I have no idea what pain is because trust me I do. You say that your condition motivates you to help others and yet you sound angry to me. Anger is usually associated with how hurt we are feeling and maybe its time to stop helping others and to look after yourself and your health but don't let it become you only focus because that will pull you down. Think about only yourself for a white. Good luck in the future x

Your experiences and my experiences show how different everyone is and how Haemo affects one person should not be assumed how it affects another.

I have never heard of waiting 6 months before going on hrt. From my experience I would never recommend that. And yes, I should have been given prog too but it was believed at that time, that it was unnecessary because I did not have a uterus. Hrt has a marvelous effect on my well being and I am not going off it for anyone. Dr Christane Northrup, "The Wisdom of Menopause", and hormone specialist, says hrt should be continued for life. I did not gain weight from hrt, but lost weight, but could have been from the haemo.

I had trouble sleeping for years too but it was from the pain in my body from undiagnosed Haemochromatosis. 9 years was too long and my health is now badly damaged. As every year brings new problems, including cancers, surgeries, more pain, fatigue, etc. I have started to resent the late diagnosis and I think I am entitled to that. 3 surgeries are lined up for me this year. No one has ever said anything about not appreciating being alive. Evidence is we fight very hard to stay alive and as well as we are allowed to be. 12-13 years after my diagnosis, I find other people are having the same problems.

This resentment does motivate me to try to do something about it and I participate in a campaign to bring awareness of haemochromatosis and its appropriate treatment to other people and medical practitioners. So I am focusing that into helping others with the condition and not thinking well, I know what I got, too bad about the rest of you.

My husband has homozygous haemochomatosis as well as our son of course. My husband is in remission from cancer as well, and yes, it was thinking positive, researching, finding answers and extreme effort that pulled us through. And we still have to continue as it all does not just go away.

Don't assume it is my only focus, I have other interests which also includes helping others in other areas. Things I could not do when I was working full time. Assumptions are not good. I would go crazy just sitting at home or wherever thinking only about myself (and this is not an assumption that this is what you do - I am talking about myself only). People are looking for answers and we learn from each other. Education is key.

When you find out what your transferritin saturation % is, let us know because it seems you are not being told everything you need to know.

My heart goes out to you all but its genetic there is no blame and I would like you to get someone to talk to that's for you alone you don't have to save the world. You are right about the counts being incorrect so I will return to get new tests and probably get them done at the hospital rather than the GP. Please allow some time for yourself I know we are all different but you still deserve some me time. H.H. came about through our bodies adapting or mutating to absorb every bit of iron it could during the potato famine times and then when things got better and food was available the mutation had already taken hold. Sickle Cell anemia came about by the body mutating to stop the affects of dying from mosquito bites. The mutations meant well but they have started others balls rolling that we now have to learn to cope with. I am lucky only to have one C282Y considering I have a family with thyroid problems, Endo and HH and their seeming connections but if I had two I would try to stay positive.

Waiting 6 months is correct because HRT can start regrowth in Endo, after six months it is unlikely to regrow and you can then safely take the HRT.

Sometimes when we focus on our health problems we only make them stronger, if we focus on getting well we are still focusing on illness. We need to be informed but we need to focus on other happier things even starting a course of study (No not on health) anything that takes your mind somewhere else will help you. If you still read my words as someone who doesn't care about others only myself then I doubt I can help you. Take a peek at the stress and anxiety section of Patient it may give you some insights into your levels of stress and ways to change your focus. Good luck and thank you for helping me x

it is well documented that the Celts who came from Northern Europe developed the faulty gene because they brought in the Iron Age - mining iron, eating from iron pots and bowls, storing food in iron pots, wearing iron armour. They arrived in the UK 300-400 BC with their faulty dna leaving a trail of Haemochromatosis in all of northern Europe and France where they existed 3000-4000 yrs BC (in Europe that is), thousands of years before the potato famine. The Vikings (and families) also had it.

Please reference where you have read that one must wait 6 months before using HRT. For me waiting 6 months would have caused a lot of oestrogen deficiency problems. My gynae who did the surgery recommended it and did the first HRT implant during the surgery. All my research says he was correct but I am prepared to take it on board if research studies exist to prove your way. As I said, we are all different, and what happened to you may not be what happens to others, and vice versa.

But we can talk about our experiences, because someone may get some benefit from it. No one needs to be told how to think.

My resentment is growing towards the dr who ignored all the signs and drs that continue to do so even to this day - not the genetic mutation. The condition was discovered way back in 1820. I think their ignorance is bordering on criminal because there are a lot of people very much more worse off from Haemochromatosis than you and I, and they have been ignored too and have lost their lives because of it.

Who is not staying positive? Who says I don't get any me time? I am not even going to address the rest. As I said too many assumptions for me. Have you not learnt anything from these posts? I am sure you have. People need real information not platitudes.

You misunderstand too much and perhaps need to think it through and check your facts a long while before responding.