Weight
Posted , 5 users are following.
hi all, been awhile since I've posted. Let me give a quick review...I was diagnosed in March of last year with the c282y homozygous mutation. My ferritin levels were at 3175. Yikes. so once a week for a year and a half I visited the vampires. I'm down to 67.3. Now my question , I am now losing weight which is great, I'm just wondering if anyone else has had this happen...I'm hoping it's due to my liver finally being able to function properly.
0 likes, 5 replies
eric89660 deb94549
Posted
Yes. This happened to me at ferritin of 1,500 before I started treatment and continued for a few months despite eating a lot. I lost over two stone and,two to three years on,I have put about half of it back on but still eating a lot. I don't know why it happened but my liver wasn't damaged,apart from high ALT on my liver function test.
jax15282 deb94549
Posted
I think your reduction is amazing, and to me very encouraging. I don't have an answer to your question.....but have questions for you. I am in the process of being diagnosed,, my level (1100) much lower than yours....TS 60 , enzymes normal. Was your liver okay..? I have none of the ' regular' symptoms but am experiencing pins and needles in my feet did you have anything similar?
deb94549 jax15282
Posted
I need to have my 2nd liver health MRI to see if I have any damage to my liver, they couldn't tell first time due to the high ferritin living rent free there. No pins n needles in my feet but yes in my legs, I also had bad cramping in my hands, feet and Charlie horses. They have not gone away completely but have gotten way milder. Ask your doc about using prilosec to help reduce levels.
sheryl37154 deb94549
Posted
Hi Deb - I have no idea what 'Charlie horses' are?? 😃
Totally de-ironed for years, (3 monthly maintenance), I suddenly developed extremely sore feet (like electricity jolts), pins and needles, numb to stand on and only medication that treated it is Lamotrigine which is also a medication for epilepsy - it treats damaged nerve endings.
2 paracetamol last thing at night is imperative for me to stop restless legs, and I still get occasional cramps in my left leg and foot. Apparently low hydrochloric acid in our stomach can cause cramps, and insufficient magnesium. I don't think any of the above is associated with haemochromatosis and there is no medical research results regarding this.
Prilosec and other similar medicines are definitely not recommended to reduce iron absorption - you end up with a whole other heap of other problems. It also stops absorption of other minerals, including magnesium.
sheryl37154 deb94549
Posted
Someone associated with haemochromatosis once said to me that he had noticed that people with haemochromatosis (treated) were slimmer than others. Perhaps it is because we changed our lifestyle, reduced alcohol, etc, among other things, and cleaned up our liver in order to feel better.
And I must say, that I had not observed any obese people at meetings and conferences.