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Why does insurance refuse to cover important HH treatments? Phlebotomy is free, but anything that could actually help us feel better isn’t covered. Why?
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We get told HH is ‘easy to manage’—but is it? Between fighting for the right tests, dealing with symptoms, and struggling to find doctors who understand, does anyone actually feel like this is ‘easy’?
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Doctors act like we just need a few blood draws and we’ll be fine. Meanwhile, I’m exhausted and in pain.
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@admin may I please suggest you post all the comments? If you are not currently on the thread you miss what is being talked about. Iron going into your brain is very serious! I will call my Dr. as well but I’m sure he won’t know anything or tell me I’m crazy! Must be the Brain Fog Dr. LOL
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Agreed, if you would not have posted a new thread, I would have missed this Iron in the brain!!!! My Dad has Alzheimer’s he said they heard it is metals in the Brain. There are a lot of published reports saying it is from Aluminum in the brain. Then others say it is unsubstantiated. Well so is HH!!!
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@steph Thank you for your comment. We are working on it. I do apologize the site is getting very large and we just had to move to a new server. That is on the list! Also Thank you all for bringing up some very interesting theories. We always need to question, and I will also look into the Iron and Aluminum as well! Happy Sunday!
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How many of us had our HH symptoms dismissed because we ‘don’t look sick’? The exhaustion, joint pain, and brain fog are invisible, but that doesn’t make them any less real. 😡
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So true! I would say all those symptoms say sick to me! What they can turn into untreated is pretty real!
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Yes, I read an article about it. I asked my Dr. about it, he said he had never heard that. Not that I was surprised… It specifically said iron in your brain leads to neurological disorders. I am still researching it because of course my Dr. said it was not possible, but it does scare me as well.
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Yes, I heard Iron can break the Blood Brain Barrier. I am still trying to figure it out, but I think it has to be the heaviest of irons. I wish we had Dr.’s who knew WTF they were talking about so we did not have to figure this out on our own!
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I just submitted an article to push for a CBC Blood panel to have Iron with Ferritin! I really think that would be a game changer!
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I wrote one for that as well, I used the argument that having not only Iron, but Ferritin on a standard CBC could help much more than HH. There are so many people with anemia, and if your ferritin is really high something is wrong. They talk about early diagnosis. This could diagnose a lot! Did you have your professionally edited? I did, because I want to try to give it the best opportunity.
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Great point! The more we all write with different views the better chance we have! Yes, I had mine edited as well. It came back so much better! So glad I did that!
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If excess iron is so dangerous, why don’t doctors talk about testing for other toxic metals like lead and aluminum? Why aren’t heavy metal tests routine?
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How many people here were misdiagnosed before finding out they had HH? I was told I had arthritis for YEARS before they checked my iron.
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I was misdiagnosed with chronic fatigue syndrome. Meanwhile, it was just my iron destroying my body.
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Why do we screen for so many rare diseases but not HH, which affects 1 in 200 people? Wouldn’t screening save lives?
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It’s all about money. If they screened early, they wouldn’t make as much from treating organ damage later.
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Does anyone else feel like they have to be their own doctor with HH? We have to research, educate our doctors, and fight for the right tests. It’s exhausting.
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Why isn’t there more focus on sweat therapy for HH? If we can lower iron through blood, why isn’t sweating recognized as another way to detox?
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