Symptoms before diagnosis
Posted , 4 users are following.
Hello. I am 40 years old and I have suffered from chronic fatigue and depression for about 20 years.
It all started around the time I had a serious concussion. It was chalked about to post concussion syndrome but it never went away. I was put on antidepressants which did help the depression a bit but never helped the fatigue.
Over the years I have been desperate to find a reason for my fatigue. I was diagnosed with sleep apnea but therapy with CPAP made very little difference. I got diagnosed with low testosterone but supplementation did not help.
I recently had blood work and my iron is only 413 - which I gather is not very high by the standards of many people on this board. I also have elevated liver enzymes. High hemoglobin.
Do any of the men with hemochromatosis sufffer from low testosterone? I understand that the iron can interfere with hormones at the both the level of the brain and the testicles. If you have had low testosterone, did the levels of testerine normalize as the iron normalized or was the damage permanent (you require supplementation)?
It’s not that I want to have iron storage disease. I don’t. I just wonder if I’ve always had it and it can explain all of my problems.
What I have read says that many people are not diagnosed until they are over 50. If I have it, I don’t want to wait that long. I want to get ahead of it. The fatigue is the worst symptom for me followed by depression (they are linked). I have achy joints but I also have a myriad of athletic injuries to explain that away. No hair loss. No heart issues. Liver issues are new.
Can any of you describe when your symptoms started (what age) and how bad they were (BEFORE your official diagnosis)? Does it make sense for me to be so tired all the time when my iron isn’t really that high? Does body size matter? I am 6’5” tall and about 285 lbs.
0 likes, 5 replies
zach76568 will63301
Posted
johan55235 will63301
Posted
I agree with Zach get tested for haemochromatosis .Given your age your ferritin level is not high for a HH sufferer I doubt if you have HH.
will63301
Posted
Also, I was being treated for low testosterone several years ago. Quit the therapy. Testosterone is still low. But I can’t blame testosterone supplement for my high iron at this point.
Do any of you have low testosterone with hemochromatosis? Do you know anyone who does. My reading suggests that iron can be deposited both in the gonads and in the area of the brain which stimulates androgen production. It also says that hemochromatosis can lead to “hormonal imbalances” but it isn’t specific as to which ones. Most people in this site seem to list fatigue, liver, and joint issues as the most common problems. Maybe heart. Are hormonal imbalances uncommon then?
will63301
Posted
Is my level of fatigue common with hemochromatosis? Does the fatigue go up and down (get better or worse) as iron goes down or up? If you had to estimate, what age did you first feel exhausted? Compared to when you were finally diagnosed (age)? How high was your iron when diagnosed and how low did it have to be before you felt better?
sheryl37154 will63301
Posted
The answer lies in the blood test results. Ask for an Iron Studies test which measures 4 elements. You need ferritin iron, transferrin saturation %, serum iron and TIBC. Ferritin iron and TS% are the marker signs of haemochromatosis and if above normal, then a genetic test will be required to confirm.
You could also have high ferritin from other causes which will need to be investigated.
HH is a hormone thief and sometimes men need to have a testosterone supplement. Have your hormone levels tested anyway in case you need it. Low testosterone also causes fatigue, weakness, brain fog, etc.
Have your Vit B12 and Vit D levels checked. Low Vit B12 causes the problems you have and is treated with injections, not tablets which do not work. If your Vit D is low, this also causes similar problems. Look for a practitioners brand of Vit D3 drops and take 4-6 per day - your blood level of Vit D will increase. Don't waste your money on tablets, they are not effective.
If you are carrying weight around your middle, then that needs to be addressed too. Cut out sugary foods and drinks and starchy carbohydrates (including potatoes, bread, pasta, etc.) which convert to sugar and causes fatty liver. Find a bread that is very seedy and looks like sweepings off the floor - they are best for you because their starch is lower than other breads.
Good luck with it.
PS: Just been reading your new posts. Yes HH does cause low libido and erectile disfunction if your testosterone is low. Testosterone does not cause liver problems and increase iron. Something else is going on to do that.
Everyone is different and have different levels of iron with their symptoms - there is no hard and fast rule. Sometimes vx reduces these problems and sometimes they don't but the vx stop it from getting worse. It depends on our different metabolisms and how long our ferritin levels have been high and usually very high. If you don't have haemochromatosis, go donate blood every three months but don't mention thinking you have haemochromatosis or high iron or anything like that or they will kick you out. do it for the good of it and you will benefit too.