Does anyone elses joints crack with Hemochromotosis?

Hi Sheryl

Thanks for getting back to me so soon.

I am so sorry to hear about your hips, that is horrible, how old where you when you finally found out and what where your levels like at that point?

I ask this because I have been on the mini pill for 7 years now, so very few periods during that time, except when I missed a pill ofc.

Touching on this paragraph : I have come across people with GH suffering from tremors, some just hands and arms, some whole body. One lady said it is relieved with one glass of white wine. Hmmm, I thought - perhaps a different cause. But when I looked up the name of the tremors - that was the solution! She said it was because she had this other gene as well as her HFE genes which caused her tremors.

What was the name of the tremors?

What was her other gene problem which caused the problem?

Have you heard of anyone else stating that their bones crack all over there body, with no pain, in relation to Hemo?

And finally what does GH stand for? Sorry I am new to this site and this condition, so not up to speed on all the shorthand lol

I was 38 when I had to have a hysterectomy. That was the start of the iron loading. I was already feeling terrible when I was supposed to be feeling better - 6 wks post surgery. I was forever complaining to my dr of fatigue and total body pain, and in particular my left leg from upper hip to toes. I was slurring and staggering with fatigue, plus my heart felt swollen and ached. 9 years later, I stepped sideways in a supermarket and my hip gave way. I had to use the shopping trolley to hold me up. An x-ray showed the problem and even the radiologist knew that it was caused by Genetic Haemochromatosis (GH). I try to use GH rather than HH because there is another illness with those initials. 6 weeks after that hip replacement, my other hip went. That was the one he botched. So I had more pain.

I always think myself lucky that it is not cancer, although I have now had 4 instances of cancer but they could be removed. So I am lucky again. My husband who is homozygous H63D has had Hodgkin's Lymphoma so I know what that is like. And I have my vx at an Oncology ward, so I see the poor people who are being treated for cancer. Venesections are better than having chemo.

I am now 68 and my ferritin was recorded as >999 when I was diagnosed. I used to donate blood every 3-6 months prior to diagnosis but obviously that frequency was not enough, plus my periods kept it down prior to my hysterectomy. I was superwoman back then!

My absolutely good memory went down the drain, which means I cannot at this point, and the time I last posted, remember the word the lady with the tremors used. She never named the gene but said it caused these tremors. It is a pretty ordinary word so probably not the medical name but I was able to find out about it by googling. It is not necessarily connected to GH.

She did clarify that she cannot have more than 1 glass of white wine or it makes everything worse. So it does not require drowning 😃 She is also homozygous C282Y.

No-one I know with GH has complained of clicking joints and I have run a support group for GHers and attend conferences and talk to researchers for new info, as well as read a lot of research. Try googling "clicking joints and iron overload" in case there is something.

I do know these clicks are usually caused by spur growths, and/or gas caught in the joints (as for those people who deliberately pop their knuckles - erk, horrible - I hate that they do that!). I think I have read that problems with the parathyroid cause calcium growths.

Later I will try to google some words to try to identify the tremors problem. I will get back to you but it might be a while, as I am slow at everything now (have short days due to continuing fatigue) and I run out of time before I have to become horizontal. I had to stop working at age 53 as I could not last the day and I loved my job.

I hope this helps in some way.

Essential tremors - we wondered if that is what Angela Merkel has. Have you seen her tremors on the news?

Sorry for taking so long to reply Sheryl, that is very young indeed to have a hysterectomy, and sadly no blood letting kicked started everything else.

Its really sad that you went undiagnosed for so 9 long years, you had to endure so much more than you should have in the long run, not being nosey, but have you considered claiming for all these damages to your body that you should not have suffered ?

Everyone around me puts my bad memory done to my age or the menopause lol, but as I am only 51 and know it was excellent b4 this, I put it down to GH.

My heart sometimes scares me at how loud it is, I can hear it in my head swooshing and hammering in my chest, most of the time I am just sitting down, wondering what on earth caused that, lasts ages too!

Where is your support group, are you in Belfast at any point, I would love to come to one of your meetings.

I will look into the clicking joints more online, see if I can find some answers.

I was a chef, sadly my shakes and tremors don't go well with knifes and carrying heavy objects, so atm I am off sick, have been since march this year.

Thanks again for all your help, your wisdom amazes me 😃

Hi again Sheryl, thanks for looking into that for me, I will go do some investigating now !

Ps I noticed on Daniels post that you said " It is wrong to just vx to just lower than 300, as you need to get that stale ferritin out of your cells. Some drs do not know that."

Could you explain that better, as atm I have dropped from 800 to 187 now, with no other tests being done on me, apart from getting my bloods done every 2 weeks to check my levels, when first diagnosed the waiting list was 66 weeks, for my inital appointment, so I have been having veinisection at the blood donation clinic every 2 weeks.

I am in Australia - a long way to go for a support group! You can start your own. Get support from your haemochromatosis organisation, who might supply posters, booklets, etc. Post everywhere you are allowed to, e.g. medical centres, hospitals, blood banks, pharmacies, cafes, libraries, health shops, gyms, clubs, etc. Advertise in a free community newspaper.

Find a free meeting place, e.g. in a community hall, a room at a library, cafe. Be armed with lots of information to hand out, i.e. from the haemochromatosis organisation, who would welcome new members, and awareness support. Just let people talk about their experiences, and others learn from others experiences. I would also read lots of medication research and print off copies of those who attend, or provide URLs for them to do so for themselves. There is always lots of research on various issues caused by haemochromatosis. The French teams in Rennes are particularly good at that.

Second post - all haemochromatosis researchers (medical research professors) recommend that we vx to 50 or less in the first instance (this is called de-ironing), then find what level you are most comfortable with. There is usually no problems with sticking around 50 anyway within a maintenance program (e.g. every 3 months).

66 weeks! That is more than a year. There must be a great shortage of haemotologists in Ireland. With a tendency of one in 80 having haemochromatosis in Ireland, that is a good reason to change career to haemotology.

At 187, you should have been able to reduce frequency to at least 2 monthly till you reach 50.

Not 'medication research' - MEDICAL research 😃

No-one can win against the medical profession unless it is a class action. A law professor I know spoke to a barrister on my behalf and was told, no chance.

When I feel arrythmia, I try to breathe slowly and think it down. Picture a rising graph indicating the heart rate, and work on bringing this rising line downwards. Best if you can get a runner's heart monitor which they strap around their chest and a wrist recorder reports the rate. You can watch this rate come down as you breathe slowly. It is called bio-feedback.

Haemochromatosis symptoms and untreated menopause symptoms are often the same. I sometimes have to think 'are these feelings from haemochromatosis or, are my oestradiol pellets failing and low oestrodiol is causing it?'. Most often, if I slap on an oestradiol patch to supplement the pellets, all is well again. Memory and concentration has gone completely down the drain, and it is very noticeable. I often can't remember the third and remaining words I was about to speak. Horrible!

I believe Genetic Hemochromatosis is GH

Hi Sheryl

Sorry I haven't been on here for a while, sadly I seem to be adding ailments rather than removing them. Remember I asked about bone clicking a couple of months ago, well it seems like there was something else going on there indeed! All the joints that where cracking with no pain, started swelling, becoming inflamed and then the pain started, as if the long bone pain with GH is not enough, all my joints, from my neck to my toes are now in constant pain! The Dr eventually (after far too many appointments) allowed me to go for an x-ray on the worst joint, my right knee. Then phoned me with the results: Ligament damage, Inflammation of the joint, Widening of the outer knee joints and Arthritis which at first look, resembles wear and tear. But she needs a better look, as this was just a normal x-ray, so has referred me to orthopaedics, which is another 3-6 month waiting list!

I have my first meeting with Haematology consultant on 29/01/20 a little earlier than expected, and not quite sure what to expect, any info for this meeting would be helpful, questions I should ask etc, thanks 😃

I am now in maintenance, serum ferritin at 129, transferrin at 2.52, serum iron level 16.8 and transferrin saturation index 26.7 % they stopped before xmas and will resume in 3 months, but sadly I still see no changes in any of my symptoms.

You mentioned The French teams in Rennes are particularly good at that. In relation to research, do you have a link for that? please 😃

In regard to the waiting lists over here and not meaning to big you up too much, but honestly Sheryl, you know more about Gh than any Doctor I have seen here! Your wealth of knowledge is a fantastic tool for everyone who visits this site! Big hug 😃

Thanks Molly

I'm still learning lol

Try googling "Professor Pierre Brissot, Rennes, France" and among other things, you should get a list of his research papers. There is another team too but I cannot remember the name of the lead researcher, but they may come up in the Reference lists once you start looking at Prof Brissot's research reports. Always scan reference lists as they are a source of more information. Also google "(your symptom" and iron overload" for research answers.

Questions to ask, just go with what you want to know. You may not get the answers as even haemotologists don't know much about the intricacies of GH. But they are usually good at monitoring blood levels. You should be trying to get down to a ferritin level of 50 (not quickly at this stage) then you can go to 3 monthly maintenance. You can ask about that if he is not talking along those lines. At least your TS% has come down too - with some people it stays high. Describe your continuing symptoms but don't expect too much. Some don't even believe that fatigue is a symptom of GH. I would come away shaking my head with frustration at the lack of knowledge. Not their field.

Thanks for the hug - I appreciate that. 😃

Hahaha You will love this! I just typed into google "Bone cracking and Hemochromatosis" and my own post came up first lol, would you believe it!

PS They already have me at 3 month phase, refused to take any more blood for 3 months, as my white cells count was so low and I was sooooooooooo tired, and anemic!

Yes, I have had the same experience. Was there anything else that confirmed it? You will get more if you use 'iron overload' rather than haemochromatosis.

Hi Debz, my Hb was always healthy but if it got as low as yours, I would up my Vit C supplement with meals. I already take 500mg vit C chewable last thing at night to ward off sore throats, colds etc. and increase dosage when I do have a cold. I know that goes against general advice but we need antioxidants ACE, and it is no good being sick with an infection which will raise ferritin anyway. Vx will fix any increase caused by Vit C.

As you have discovered, being anaemic is just as bad as having iron overload!!! 😦