i have none of the above and once had a ferritin level of 3600

I have osteoporosis and arthritis> Because this disease affects the liver, I am very sensitive to drugs. I also wake up every night. It's miserable to be fully awake at 3 in the morning....no one else is.

Hi, have some of that in varying degrees...

Bone/joint grinding in shoulders and hips, used to be worse, had to be on crutches for hip one time for a couple weeks...

Sleeplessness...feel exhausted and bone tired but get to bed and have trouble getting to sleep, fitful...

I could never understand about the supplements...made me super ill and this was a little better during pregnancy, but not much, but it seemed anything with iron I couldn't hack it...

The indigestion, ditto...have lots of trouble with heartburn and reflux, have feeling of bloating after I eat, uncomfortable under rib cage. Fluid retention.

My finger joints will hurt, mostly on index and middle finger. flares up and then goes away...

Any other symptoms you want to know about? Have lots...lol

Thing is, people can have the disorder, different mutations, and all are different, load different, have different symptoms. Each person is unique in severity/type. I have some similarities with husband, we have compared notes, but we are of different ages by over 15 years and gender plays into it...

I would say they are all definitely related to HH. I have the joint problems. In fact, that is what led to my diagnosis of HH. For me, it's not a case of osteoporosis or rheumatoid arthritis, but a case of small tissue swelling, etc. However, this leads to loose joints, the joints grinding, joint pain, exhaustion, etc...all the issues you mention. The small tissue reaction is like most HH symptoms, an autoimmune response, which could explain your other symptoms--highly likely that's what it is. I also have had problems with apnea, choking, and hair loss over the years--all autoimmune responses.

I recommend minimal medication for these issues, because of potential liver problems and because all medications have side effects. There are natural approaches to most of the problems we experience, typically not as immediate as pharmaceuticals, but better in the long run.

1) bone loss or osteoporosis; a grinding sensation in your jonts when you move around.

In my knee and sometimes my hip.

2) your body can't seem to tolerate any kind of vitamin or nutritional supplement---or you are very sensitive to supplements and just can't tolerate them.

I don't take any nutritional supplements because most have trace metal in them or vitamin C.

3) your joints hurt

Y E S. Always. I'm 33 years old.

4) your bones feel like they ae coming kind of loose out of the socket; like your shoulder sockets aren't holding your arm bone in place very well. Or---leg bones in the hip socket or knee sockets.

Absolutely. I know exactly what you are talking about. I swear sometimes I'm afraid to lift appliances and furniture just because it feels like my shoulders might come out of socket.

5) trouble sleeping---wake up in the middle of the night and can't get back to sleep?

YES.

6) chronic indigestion

YES. IBD.

The only one I experience is trouble sleeping. I wake up sometimes 5-6 times a night.

Osteo & arthritis, yes. A little GERD, reflux. And myferritin got up to 10,363 (now, after 2 yrs of agressive phlebs I'm around 31)


zzzzzzzzzzzz

I just saw this, and yes I have most of the symptoms but no real bone loss or osteoporosis. I am supposed to take vitamin D supplements, but can't tolerate them at all - the same with most supplements. I have mashed them up and put them with applesauce or pudding. I've been told the secret is to make sure your stomach has food in it before you take them. Not really working for me.

As long as your supplements don't include iron, eh?....! (or Vit C)

Wink, wink. Obviously, eh?

I could never take pills well...I had to during pregnancy and that always made me more sick. I wonder now if it had to do with the iron in them. But at any rate, hate to take pills. The swallowing them is hard for me. Gag too much.

The thing about this disorder is that it affects everyone so different...some don't have very high levels and experience multiple and severe symptoms, while others are homozygous C282Y and have nothing!

Weird and mysterious...

Cheerz, C

I don't have the loose feeling joints but I do have osteoarthritis. It has been so bad at times that I could barely use my hands. It felt as if a metal hammer was banging on my bones. Then I started taking vitamin B1 as a separate supplement from any other vitamins and it helped a great deal. Then, I learned about using coconut oil and since cooking with it everyday my pain is probably 98 - 99% gone! I use the refined coconut oil just because I don't like the taste of eggs fried in the flavor of coconut. It is also a great hair conditioner and moisturizer! There is a lot if info on the internet about the benefits of coconut oil. I also think it has given me more energy and has helped with gastric issues.
The main thing that I have found to stop heart burn and other gastric issues is to be gluten free. I have a very close friend who has spent a great deal of time in ER due to severe gastric issues and she started eating gluten free and it all cleared up. So, I have done the same and I have also had great results. Also, if you drink wine with dinner do not have ice cream for desert! That combo will cause acid reflux later in the night!
I too wake up every night for hours at a time. I don't know what to do about that.

Yes to all except the loose joints. I have osteoarthritis, and the joints can really hurt and grind. The sleep thing I have been dealing with for several years, thought it was because of the pain..

Anyone else here dealing with lots of infections?

One thing I want to note, is your diet has a lot to do with any of diseases out there. Much disease is caused by a poor functioning digestive system due to lifestyle. A poor diet with too much fat, sugar, processed food, meat, dairy, alcohol, etc. will cause a multitude of issues even without having hemochromatosis. I can say that I have had some digestive issues in the past here and there but I put greater blame on the food I ate, etc. rather than my disorder. I feel great. Eat clean, exercise. I have sleeping issues but that is due to a bad lower back caused by wear and tear and high impact sports when I was younger.

Kimberly, thanks so much for the information on coconut oil! I'm going to use it faithfully!
I have the joint issues in thumbs and knuckles..I can't play guitar because my joints jump out! Dang it's painful! It's difficult to say what problems come from HH and which from hyst surgery...and which from old injuries..I have degenerative arthritis in neck (injury), adrenal meltdown, bone loss, acne, lack of energy, headaches, loss of strength,.internal pains, breathing difficulties...what a list--Bio-identicals hormones help a lot with sleep..as does a good brand of Melatonin..you can take it when you wake up..and probably go back to sleep...Wishing the best to all!

I only experience 3) joint pain. Mine often feel tight not loose and it feels like I need to be stretched. Hope you are feeling a bit better now and getting some sleep?

Osteoarthritis, trouble keeping asleep. Wake up about every 90 minutes. I just found out about medical marijuana, so many variants and some help you sleep and ease the pain. Of course you need to be in a state that allows this, or in Canada (where I am), to get assessed and try it. I've not tried it yet but am going through the evaluation process so I can.
When I wake up at night and can't get back to sleep (3 am or so) I use ear buds and listen to Chill music. Usually relaxes me enough after 45 minutes to sleep some more. Melatonin is no help, at least not for me.
I'm lucky, supplements work ok for , but I add them in my breakfast smoothie. One other thing, I take lots of Omega 3 oil for joints (in the blueberry/protein powder smoothie).
I also suggest Tai Chi for health. Slow, gentle movements, good body energy, gentle stretches and deep breathing. We have people more than 80 years old in our classes and it helps them lots. You can gain without pain with Tai Chi.