Megan, such a good question. One that I have been asking for years to no avail. Now, if anything I have put my problems down to not being diagnosed for 9 years after a hysterectomy at 38 despite severe symptoms. I was so fatigued, I was slurring and staggering that I am sure my work colleagues thought I was having a 'sip' during the day. My body ached so bad, and not until one of hips broke up one day while out shopping was I really diagnosed. My blood was so thick with iron it blocked the finer capillaries that fed the bone. Ended up having both hips replaced. I had constant chest pains for 12 months before diagnosis which eventually dissipated with venesections.
I would fall into bed and despite having a reasonable sleep, despite the pain in my hips, legs, back, shoulders, etc. I would struggle to wake up and feel like a truck had hit me. I just kept forcing myself to keep going as supposedly I had nothing wrong with me! Just getting dressed was an ordeal and I would be crying and messing up my makeup.
My hematologist at the time took my ferritin iron right down to 13 to get it out of my organs. He was an old fellow on loan to the hospital. I wish I knew then what I knew then so I could have asked more questions. I did ask though, why was I still so tired even though I am supposedly "deironed". He told me the damage was already done at a deep molecular level and that does not go away.
But now with you saying the same thing, I am questioning again, because of your youth and that fact that surely you did not have time to absorb too much iron before you were diagnosed. Was it because you had a close relative with it, or was it discovered because you were having horrible symptoms already?
My current hematologist (oncologist) keeps telling me that as I am deironed I should not have any problems. I am now going on 63 and still having new problems as a result of Haemo. I have become more and more resentful of the late diagnosis, and have set up a Support Group for other people with Haemochromatosis or think they may have it. I am able to direct them to drs who are conscious of Haemo and know how to treat it properly - by referring them to a haemotologist, instead of trying to treat people themselves - drs are not aggressive enough. I give the patients the questions to ask to get the right answers.
So, I would query how far down were you deironed to? What level are you now? Have you found your optimal level? Mine is 34. When I was 80 (found out retrospectively) I was found to have hugely rapid heart beats of 21,000 extra h/beats in 24 hours. I was tired and achey, with chest pains but had no idea of the arrythmia, because when I have had the chest pains checked out before, it lead to nothing.
The last 7 months after removal of a lesion on my leg, lots of inflammation, I knew I my fe would be high. Had a venesection in Sept, and immediately knew I needed another but had to wait another 3 months. As I have now learnt to recognise arrythmia (a cardiologist said most people do not feel real arrythmia) I knew I was still having that. My fe was 79 at time of that venesection, in line with what I previously knew. Finally another 3 months (Dec) was up and I got my gp to request Iron Studies out of curiosity just prior to the venesection. I was horrified to find that my fe was only 56 and I was getting those overload symptoms. Each 450-500 mls (1 pint) removes 24-25 mcgs of fe so that brought me down to about 32. Two days after that venesection, the problems went. Once again proving that 34 is my optimal level.
You have to find YOUR optimal level, not the dr's optimal level.
Maybe your anxiety is actually arrythmia. You can check this by buying a heart monitor strap that you wear around your chest at bra strap level and it translates it to a special wrist watch. Or sometimes you notice your heart banging away when lying prone in bed, esp on your side, you can feel it.
How are your hormones, as in oestrogen? Haemo robs us of oestrogen and can cause early menopause and infertility. Deficient oestrogen also causes arrythmia, feelings of anxiety, depression, incontinence and other symptoms which I will not go into here. I am sure you will know (or look up).
Also, a very valuable test to have is for ALL your pituitary gland hormones, as Haemo damages your pit gland, and causes all sorts of problems which may not be connected.
Diabetes tested? I hope you have had Liver Function Tests. Haemo also damages adrenal glands - causing anxiety problems too.
If your B12 is low, ask for injections. They work better - a lot of people do not absorb it in the tablet form, esp if you are blood Type A (as experienced by my husband who is homozygous D63D and ended up having Hodgkins Lymphoma). After years of depression, fatigue, muscle weakness, anti social-ness, his dr finally thought of B12. After 2 weekly injections, my husband came home humming and talked to the neighbour who he had ignored for years. (Vit B12 deficiency does cause neurological problems.) Vitamin D works best in drop form. Mine was low even though i was double supplementing in tablet form. Finally my dr, who tested me, told me to take 4 drops of Bio-Ceutical D3 Forte per day. My Vit D levels increased immediately (via blood tests).
I am prone to cancers now too, and have an MRI every 3 months after having a very dangerous tumour which has a high morbidity rate if it returns. Half my thyroid has been removed because it went ferral and ended up with multi-nodules, even though my blood tests were normal. But for years, I felt like my thyroid was NOT normal, and they kept telling me it was ok.
Then I come across some Haemos who have no problems at all - no fatigue, weakness, aches! Gee, I hate them! :-) Unfortunately it feeds the myths that having Haemo is no problem at all and it is hard to be taken seriously. My siblings are carriers and have no problems at all, and do not acknowledge or give consideration to what I am going through. I took the bullet for them.
It is the resentment of late diagnosis, and all of the above that gives me motivation to keep going and try to help others I guess. I can see you are trying to spread awareness of Haemo (or Hereditary Haemochromatosis (HH)) too. Maybe you can start a support group too - advertise in your free paper if you can, put up flyers all over the place, etc.
Please let me know how you go even if you want to do it privately, because of some symptoms you do not want to put in this discussion. We can all learn from each other and I am still learning.
Sorry, I seem to write a "book" everytime. There is so much to talk about!