Venesection
Posted , 3 users are following.
Hi guys, I’m a 40 yr old female and have just been diagnosed with homozygous C282y gene. Sorry if TMI but about 3 yrs ago I had a Mirena installed (female contraceptive) and stopped menstruating for 2 years. In this time I put on heaps of weight, started getting joint pain and became fatigued all the time. After 2 years my doc tested me for thyroid issues but it in fact came back that all my iron levels were elevated. I was meant to go back and have a follow up but I just got the Mirena removed (about a year ago) and forgot. So I went back three weeks ago and retested and although levels have gone down (I’m guessing because I have been menstruating for a year) they were still high. Went for HH test and came back positive. So my question is.......my ferretin only ever got to 227 and it is currently at 164 and Ts is 66. I still feel very aching joints (elbows, knees hips, swollen finger joints) and quite fatigued. But my doc doesn’t want me to have venesection.
Should I seek second opinion or just retest in 6 months like she wants to.
I’m in Australia BTW.
Ps if I’d never had the Mirena I would not have been disgnosed for a long time!!!
0 likes, 10 replies
sheryl37154 Cebby78
Posted
Hi Cebby, I am in Australia too. The upper reference range of ferritin for menstruating female is something like 120, so from my experiences with HH, you should be having venesections but perhaps at 3 monthly intervals. It will not harm you to do so. So if your dr does not know enough about HH to request this (and there are a lot of resources for gps on the Haemochromatosis Organisation website for her to refer to), then I suggest you donate at the local Blood Bank.
But do not, I repeat DO NOT, say you have haemochromatosis or high iron, or they will send you away because they will then want a dr's request.
Try it and see how you feel (most people come away feeling much better), then again in 3 months time. You should realise that many people who do not have HH (therefore do not have high iron, nor high ferritin), or know they have HH, donate regularly. I used to before I was diagnosed and while I was having severe symptoms. And they said we like people like you, as I had high Hb.
Because of a 9 year delay in diagnosis and treatment, my hips broke up from osteo-necrosis. My blood was so thick with iron, it was blocking the fine capillaries that feed the bone. The bones died and broke up. Two hip replacements were in order.
The other best action to take is to ask your gp to refer you to a haematologist. They will look after your blood levels better than a gp.
You do not want your symptoms and aching joints to get any worse. You do not want those aching joints to turn into arthritis. You need relief from your fatigue and hopefully this will help reduce the fatigue. Eventually you will lower your TS% as well, which from all the research I have read (particularly those done by a group in Rennes, France), the high TS% causes residual problems.
You can phone the HA group to talk to them as well.
Cebby78 sheryl37154
Posted
I am so fatigued, currently sitting on the lounge nearly asleep and this is NOT normal for me. I’m an energiser bunny normally and have felt so yuck for 2 years now.
Thankyou for your advice it really helps.
selina58849 Cebby78
Posted
Hi. I am from Australia too and was diagnosed with hh this year. I started with my levels at 466 and ts 66%. I donate at the blood bank and had to have electronic referral from my doc to do so. I too was extremely fatigued with joint pain, bad neck pain and swollen lymph nodes in armpits and neck. After just 3 donations my levels were down to 134 and ts24% so waited 3 months to do another donation. Now my levels are 34 and ts18%. I now just get a blood test in 3 months to see my levels. I am a 42yr old menstruating female. Just 1 donation can be enough so make sure to check levels between donations. You can become anaemic still. I still get achy sometimes but not as much. The biggest difference for me is I'm not fatigued and have energy.
Cebby78 selina58849
Posted
Hi Selina, Thankyou so much for your response. I too have swollen lymph nodes in my armpits and never realised this could be a a symptom of HH. I go for my first venesection next week and I'm hoping it helps with my joint pain and fatigue. My doc only wants me to go every three months for a year and only if I feel i need to with blood tests in between to check my levels. In a way it is a relief to be diagnosed so I know there is a reason for my symptoms and I can possibly have some relief from them. I feel like if I can get my TS% down then that will help because my ferretin isn't really high compared to most people when they find out.
Good luck with your treatment!
sheryl37154 Cebby78
Posted
Cebby78 sheryl37154
Posted
HI Sheryl, I have had ultrasounds and mammogram and nothing suspicious, just another one of my annoying symptoms. I don't really think its related to HH but it is interesting that Selina experienced similar symptoms.
selina58849 Cebby78
Posted
Yes I had ultrasounds in breast and armpits and MRI for neck pain.
Also checked thyroid. Nothing came back as anything wrong. I am convinced it is because of hh even though there are no findings so far. Thing is there are so many possible symptoms and everyone experiences hh differently so I don't rule it out as a symptom. I find it interesting that you experience it too. Worst time has been when lying down to sleep the swelling would flare up. Its awful when you tell doctors these things but just get the feeling they don't believe you because it doesn't fit into any category of knowledge they have. I hope you feel better soon too.
sheryl37154 selina58849
Posted
I have found over the years that there is no point trying to blame odd symptoms on HH, because whether it is caused by HH or not, it should be investigated and treated for what it is.
It does us no good to divert the dr's focus away from the problem with HH. Their knowledge is very limited on this subject. There is no special treatment of health issues just because we have HH. Don't expect them to agree with you, just push for a solution.
selina58849 sheryl37154
Posted
My armpits havent swelled up since i got down to maintenance levels. I'm so relieved because it was very painful and hard to sleep. Also my muscles in my neck and shoulders were extremely tight and would get painful too to the point of crying. The best relief is a cold pack until the swelling goes down. I'm in my first year of diagnosis and I guess only time will tell if it could be a symptom as my levels go up and down. Its a learning experience.
Cebby78 selina58849
Posted