Hi Emma! Look what I found! This sounds like ME! and maybe most of us! HH'ers, that is. Hmmmmmmmmmmm

http://www.drmyhill.co.uk/wiki/Brain_fog_-_poor_memory,_difficulty_thinking_clearly_etc

I happened upon it while I was Google'ing coconut oil & hemochromatosis.

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Donna

Most people with HH are misdiagnosed with Firbro. They have the exact same symptoms as HH. Glad you have a diagnosis for both.

I have found a connection between fibro and hypothyroidism too. My fibro goes into remission (?) when my thyroid hormones are working well.

Very interesting. My primary just diagnosed me with fybromyalgia. My ferritin levels are still to high to determine if the pain is from HH or fybromyalgia. I still need to make an appointment for the fybromyalgia but I am going to wait until I get my levels down. It is hard to keep your sanity with HH. It can mimic so many other things that it gets confusing. I hope you start feeling better with your medication. Let me know how it goes because that is my next step.

Emma, have you been tested for Lyme yet? I'm telling you that you sound just like a person with Lyme, and 90% of people that go undiagnosed for Lyme get a diagnosis of Fibromyalgia or MS first. Don't settle for Fibro, as there's no test to confirm it... you need to rule other things out first. I would make sure you have been tested for Lyme, if your Elisa comes back negative, request a Western blot, my first was negative, my western was positive!!!

BTW, what were your numbers? Ferritin and % saturation.

I have not been tested for Lyme yet. I plan on asking about it at my rumatologist apt. I go may 4th. I honestly don't care what I have, as long as this pain stops! my feritin is only 15, and has never been above 30. I'm not sure about the ther numbers, but they have all been good.

I know the feeling, you don't care, but you do have to find out. Especially with Lymes, the longer it takes to find out, the longer it takes to start meds, the more damage you do to your joints. It's a simple test, only takes a couple of days.... and you wouldn't be the first, by a long shot, that has both HH and LYme!!! BTW, where/what area do you live?

I actually thought about this because you said you have so much pain, but youre so young. HH shouldn't be causing you and physical symptoms with your age...

I have the same issue. I was still in pain even though my levels were at a decent level, so I knew it had to be something else. When I explained all my symptoms to my hemotologist, he looked at me like I was nuts and didn't believe me. He said it's VERY unlikely, almost impossible to be having joint pain at my age from HH.

Doctor thought i have fibro, lupas, arthritis but no meds worked. My doctor thought I had a thyroid problem, but my tests came back fine. I knew something else was wrong so I didn't give up hope in finding out. Many other people gave up hope on me. Doctors even told me I should see a psychiatrist because they thought I was making up all my symptoms.

Turned out I have lyme disease and thats where all my pain was coming from, not HH. I had no iea because I didn't remember a tick bite. HH and lyme have identicle symptoms and it took me years to finally get an answer. So don't give up searching because it is worth it in the end and i'm finally on the road to recovery.

I live in Huntsville Alabama.
Lyrica hasn't done anything to help with the pain yet, just making me loopy and have a few panic attacks. the doctor said it would be about 4 weeks before i could notice a difference.