Hi Sully, did your phlebotomy sessions lessen your joint pain? Where was your iron levels when you found out you had Hh? Sounds like your diet has been working for you.. any tips would be appreciated. Thanks, blondiegirl*

Hey bondiegirl,my ferritin was 1800 my symptoms were fatique and joint pain after the phlobotomys my joint pain did not really get any better.Ive had every blood test done very often I thought the iron had damaged my thyroid but everything came back normal and the reason I say that is the weight gain.But I am also taking Effexor for anxiety maybe that's doing it.I have kept my ferritin down I eat chicken turkey burgers,i drink tea with every meal and read every label you would think I could lose weight buy the way I'm 54 thanks Sully

Hi Sully, Sorry to hear that your phlebotomy sessions did not lessen your joint pain..I'm just getting started with my sessions, I have a feeling that I have a long way to go.. My ferritin serum is 2070. I was diagnosed with Severe Osteoporosis in September.. Doctors couldn't figure out why so bad, tons of tests and the whole liver Scan and biopsy, bang! Hemochromatosis. I have been watching those labels and drinking lots of tea, oolong, green and white. Was putting plenty of lemon in until my diagnosis.. no more lemon for me. sad face): Is your Anxiety due to you having Hemochromatosis? We all could use a little more exercise now that we are getting older.. Try not to be hard a yourself.. Hope you have a great weekend,. Blondiegirl*

Hey blondiegirl have you not had any phlobotomys yet?Im sorry for your liver biopsy they say that was the gold standard to find hemochromatosis I think now its the generic test ,is your liver ok?What helped me with the phlobotomys were I would start drinking a lot of water 2 days before so my blood would flow good at first it almost looked like syrup.The place I go some of the people can hit my vain some of them aren't so good.I would leave ther with both arms damaged also if your arm is warm and your hydrated your vains are more full,No I don't think the anxiety is because of this.Does anyone else in your family have this?If I can help you in any way let me know how its going.Good talking to you Sully

Hi Sully,I will​ have my 2 phlebotomy on Wednesday.. Doctor wants every 2 weeks to start.. Doesn't want to throw my body off.. I would go every week if I could but you have to start somewhere.. just have to be patient.. nervous that the treatments​ might not work. I'm in Stage 3 Liver Fibrosis, so it's kind of scary. I did have the Genetic test also . I have a cousin on my Mom's side who has Hh.. trying to get my 2 brothers and 1 Sister tested.. also I have a Son who is 30 that I am worried about.. Thanks
the tips Sully ,What about your Liver, any problems for you?? hopefully Wednesday will go smoothly. Thanks for sharing.. Blondiegirl*.

Hey blondiegirl Ive never had 2 in one day I did mine every week I would try to keep track cause they would check my ferritin every 4th time but for a while it was falling around 25 everytime I handled it pretty well I have a 21 year old son and a 15 year old son they both have the on bad gene but not 2 I don't want them to go through this.My 2 sisters said they got checked I'm the only one in the family who has this I think every one else is gone my parents passed away in 08 and 10 and all ther e brothers and sisters are deceased so they proberly never was checked.I told the doctor that and he wanted me to dig deeper but theres no way.Far as I know my liver is ok but they have only done blood tests I'm in Virginia I don't think they know much about it sorry about your liver I think once you get deironed it will heal goodluck Wednesday let me know how it goes Sully

Hey Sully, sorry about the confusion about phlebotomy sessions. I meant second session not 2 in one day.. that would be pretty draining. Haha.. I received news from my Gastroenterologist that I only have 1 more phlebotomy in 2 weeks then I can start going every week.. Are your liver enzymes ok? If they are high it's a pretty good indication that your liver is suffering. My doctors are pretty determined to get to the root of the problem, I'm in Illinois by Chicago so I have some great Doctors helping me. I'm curious about your boys.. are they donating blood at a blood bank?? Does that mean that they are Carriers? I think my Son will at least by a Carrier because I have 2 faulty genes. homozygote c282y/c282y.. Maybe it's kinda of a crap shoot? All my Grandparents on both sides died pretty young.. 50-60 Wednesday was fun, got poked four times before head nurse came in, then she spilt her pants open while she was sitting on the floor holding the Needle in my arm so it wouldn't​ jump out.
Another fun day in the life of a Iron Woman.. Blondiegirl*:)

HI Blondiegirl. Your levels are not much different to mine. 2003 when I learnt of this disease. I got a rash, I think it saved my life. I was on HRT, so it was camouflaging my symptoms. While doing test for the rash this is when they found Hemo. I have C282Y and Homozygous. I now know all of the symptoms they thought were menopausal were Hemo. So for many years have had joint pain and fatigue. My liver was also under attack. Thankfully it has gotten better. I am now asking if Psoriatic Arthritis is also linked to Hemo. I had venesections for 18 months every 2 weeks. If my blood pressure was high or pulse rate high they would not take my blood. It always made me anxious. Sometimes after venesections I would get a little relief from pain. Now 18 litres of blood later I am on maintenance. It looks like every 3 months. I am still having joint pain and fatigue, but this also relates to Psoriatic Arthritis. I read someone else had tears in tissue. I have 2 tears in my left shoulder and 1 in my right. Is Hemo responsible for that as well? I have been blaming the Hemo for everything. Still trying to find answers.

Hi Brinski, happy to hear that I am not alone.. sorry for your discomfort though. Kinda crazy is I have Pustular Psoriasis Hands and feet, I have been dealing with for about 10 years now.. started with a blister on my heel and a stupid Doctor with a improper diagnosis. Happen about the same time as I started Menopause. I had a hell of a time with the Psoriasis, so painful. After 10 years I went to Rheumatologist looking for answers thought I had Psoriatic arthritis.. So much inflammation in my body, diagnosed severe Osteoporosis. My Endocrinologist says Hemochromatosis and Osteoporosis are linked, also Osteoarthritis, the Iron is attacking the joints..Then the journey begins. Brinski did you have a lot of iron deposits in your Liver?? That is my biggest fear, I'm in Stage 3 Liver Fibrosis..You must be relieved that your liver has improved. Did you have a Biopsy? Wondering how old you are? I'm 57 so 10 years out of Menopause.. Sorry to ask so many questions just new to all of this.. I pretty lucky to have low blood pressure and pulse rate because it sure can get nerve racking letting the phlebotomist ( new girl ) take a couple of shots at you.. I also have a terrible time with my shoulders​, though I don't think I have any tears..Yes let's blame it on the Iron. I have met some really nice people on here and it feels good to by able to talk to someone who understands.. Hope your health continues to improve.. take care. Blondiegirl*

Hey blondegirl I have 2 of the c282y faulty genes my 2 sons only have one so they are carriers its funny what you said about the needles or not funny but I had the same problem so of the girls could not hit my vains I would have holes in both arms.Also the supervisor would come over and do it I learned there was only 2 girls there that could do it.My liver enzynes are ok ive never had a liver piopsy Sully

Hey Brinski I was having all kinds of problems for years but I'm not a huge doctor person I thought I was going crazy luckly at a physical I told my doctor I had fatique and joint pain she ran some test than sent me to a specialist I just started going to an arthritis doctor hes trying to fix it with pills pain mostly in hands my doctor saved my life I had never even heard of hemochromatosis Sully

Hey Sully, It's a beautiful day here in Illinois.. Are you going out side for a walk in the gorgeous state of Virginia?? How are you doing with your food pairings and diet? How are your Boys dealing with their diagnosis of Hh? My Son hasn't been tested yet, he's 31 I don't know if he feels nervous about it, but from what I have read that is the time when the iron overload starts. My Brother Joe died while waiting for a Heart.. Cardiomyopathy, he just dropped dead when He was 37 years old.. Joe was a hard working Carpenter, it happened a a job site. Thank God the Plumber knew CPR. Joe was brought back to life.. 10 years later No Heart for Joe and He Died at the age of 47. 1997. Now I wonder if He had Hemochromatosis. They never could explain the reasons for the Cardiomyopathy.. His biggest complain before his drop dead was feeling really tired and aching, but He was a driven individual, just thought that's how His body was. Anyway hope We can continue to do are best for ourselves and our families.. Enjoy the weekend and you family.. Blondiegirl**

H..ey Blondiegirl its a nasty day in Virginia its been pretty much raining for 2 days we had some bad storms yesterday it tore up a bunch of trees.Sorry to hear about your brother that's sad at such a young age noe that I look back on some of the people that have died fairly young in my family it kind of makes sense now.My oldest son is kinda afraid of needles so I hope he never loads iron now I think there to young there ferritin is normal now.There is a book I got when I first found out I had this its the hemochromatosis cookbook I think I got it off amazon it has a lot of recipes and tips I stick to a good diet during the week but I kind of blow it on weekends.I like your positive attitude its nice talking to you Sully

Hey Sully, I'm eating pizza and sittin' on a ice pack, so I hear you. Hahahaha. Sorry about your strong weather. Catch up with you soon. Blondiegirl*

Hi Sully, The girls who do my venesections are fantastic. Never 2 jabs, always get the vein the first time. Very professional. I go where they only do venesections. So they are always interested to see how you are travelling. Pain etc. I have finger joint pain, nail changes eg ridges and side of nails instead of being round are now like a right angle. Feet and hands peel, this is the Psoriasis part. I think I have Psoriatic arthritis, it fits all of these symptoms. Look it up. I now think that both of theses are linked to Hemo.