Hemacromtosis

Julie,

It's a bit difficult because while some of your symptoms sound familiar when it comes to iron overload, other symptoms don't. For example, the fatigue, body pains, brain fog and depression are symptoms that I would often associate with having haemo.

However, 300 as a ferritin level seems quite low in comparison to what other people are diagnosed with iron overload at. I was diagnosed at 600+ (which is still on the low side, but I had been over 600+ for a consecutive six months and I was only 21 yrs old at the time so it was obviously abnormal) where as a lot of people are diagnosed at 2000+ or even higher. 

The lost interest in sex can also be a symptom of iron overload but I've been advised by both my regular physician and my hemotologist that issues with your pituitary gland (what controls your sex drive) generally only occurs when your ferritin level has been over 2000 for a period of years. Because of that, I'm lead to believe that your problem, in that particular case, may not be haemochromatosis. 

But at the same time, because of what your parents' passed away from, I would 100% recommend you pushing your doctor to keep testing for it as you are obviously a candidate for it.

Do you mind me asking your age?

On the other hand, not being able to lose weight definitely makes sense if it were partially a thyroid issue. Everyone can lose weight so long as their calories in is less than their calories out, but having an underactive thyroid will definitely make that more of a challenge.

Regardless, let us know the results from your ultrasound and xray. And I say this to everyone, whenever you feel like your doctor isn't being thorough enough, or you still have concerns when they tell you "no," always get a second opinion from someone else. You owe it to yourself to be confident in whatever results you get.

Okay, since your thyroid appears to be fine I would definitely ask your doctor to check both your iron and ferritin levels again and don't let them talk you out of it. Because at least a few of your symptoms are connected to iron overload, I really think it would be a good idea.

I feel like I heard before that sometimes numbing of your fingers can be a symptom of haemo as well, but there are so many that I can't be too sure. It can be a bit hard as well because depending on your age and how your body functions, pretty much everyone has different experiences when they have too much iron in them. 

I did mean to mention before, since you said that you recently felt dizzy and almost passed out - that sounds like it could be anxiety. I can't say for sure because I'm not a doctor and I have no idea what kind of tests you've been through, but I suffer from anxiety and I have almost passed out before. And actually, numbing of the fingers (if that's what your experiencing in terms of being told that you may have raynaud's) can be a sign of anxiety as well. Each person experiences anxiety in a different way. For example, I get a variety of symptoms. I can feel light headed, foggy headed, dizzy, my heart beats so fast, sometimes I start sweating or I can get clammy, or I'll suddenly need to use the washroom very badly, I've felt pinpricks all over my body and hotflashes, and there was even one time that my vision started to go. Obviously I've never experienced all of those symptoms at once (that would be just horrifying) but I just wanted to show you that there are so many different symptoms someone with anxiety can experience.

Do you remember when you started feeling that way? Was it after the other symptoms started? 

 

Julie, your transferrin saturation % is very important too.  If it is >50, it is a sure sign you have HH, even if your ferritin iron level is not so high yet.  Make sure you ask for a copy of test results so that you can examine them yourself and compare with what you will find on the internet about HH.  You should ask for Iron Studies which will give you the test results you need.

My pituitary gland micro tumour became evident about 3 years after I had been "deironed", although I had gone 9 years with severe HH symptoms before being diagnosed which meant there was a lot of time for my pit gland to be affected in the meantime.  My highest fe level recorded was >999 so ? what it actually was but I don't think it reached 2000.  I believe HH affects everyone is so many different ways attacking our organs differents.   First your pit gland hormones need to be tested to see if any are out of whack, then if so, an MRI is warranted.

My thyroid blood levels were always 'normal', but it was not behaving normal.  Accidently, multi-nodules were discovered in one half of my thyroid and that half had to be removed - so much for blood tests!

Keep pushing, even if it means finding another dr.  Call your country's HH assoc for an appropriate dr near you.

If you do not have a high transferring sat %, and your fe is climbing, work on cleaning up your liver as you may have a fatty liver causing your problems.

Gosh, Julie, I don't know enough about liver problems really, as so far I have escaped the problem but I know a lot of people who have not.  I really hope this is the start of fix-up for you.  Thank goodness, the liver can renew itself as long as it is before cirrhosis occurs.

An Australian dr, Dr Sandra Cabot has written a good book on liver health and cleansing, as well as juicing and the appropriate recipes.  Google her if you want more ideas on that.

Let us know how you go.