Possible Haemochromotosis diagnosis

Hi Sheryl

Some really useful and interesting information here , thanks!

Regarding the diabetes, my glucose test came back normal. Does this mean I don't have Diabetes? Or would I need a more thorough test?

I have been getting some little twinges in my fingers but it's hardly noticeable.  The brain fog is starting to get me down a bit though. My partner was trying to explain a simple maths problem to me last night and I just couldn't get it.  If was like, it was too much effort for my brain to even try.  I'm finding that I'm waking up sometimes feeling really anxious like I've done something wrong but I haven't. Very strange.  

Will the the venesections sort all this out? I'm worried about my periods too. Will the venesections improve this? I still want to have children. We actually went into IVF as my partner had hodgkins lymphoma when he was younger so can't have children naturally. He has a frozen storage so we are using that. Never comprehended it was me with the problem!

oh, and I got my appointment with the Haemotologist. It's on the 29th June which is a bit of a wait but not too bad. Going to look into private to see if I can get seen sooner. 

How do feel now after reaching your optimal level? Do you feel normal again?

thanks Katy

 

I don't know a lot about diabetes as so far it has not affected me - as far as I know technically anyway.  My husband was a sugar fiend and his glucose level went over the norm.  He stopped using sugar in his coffee (still loves his fruit cake) and his level dropped considerably.  However, he has frequent urination and is thirsty a lot.  (He is homozygous H63D and also had Hodgkins Lymphoma).

I now react badly to eating sugar and starches (which convert to sugar) and got the shakes and sweats when I was given glucose to test pituitary gland hormones.  I have since read that we don't digest sugars and starches very well and found a study which stated that we have symptoms of diabetes without actually having diabetes.  As I was in a hurry to look for something else I did not bookmark it and have not been able to find it since.

I am homozygous C282Y which is the more aggressive one, and our son is compound heterozygous C282Y/H63D of course - he could not miss out.

I feel good for 13 days after a venesection, then the fatigue and body pain descends on me again.  I suffered severe and classic symptoms of HH after having an early hysterectomy but it took 9 yrs for dr to diagnose, which was when my first hip broke up.  I had left side chest pain, and was staggering and slurring with fatigue because I kept working and pushing myself.  My brain was going foggy and I could not remember or think as well as I did before.  Google did not exist back then - only Readers' Digest!

When I was discovered to have a prolactinoma I was also found to have severe arrythmia.  As drs are so stupid about haemochromatosis, a cardiologist gave me beta blockers.  What do they do?  They dilate the blood vessels to allow blood to flow more freely - also to the brain which breeched the blood brain barrier and allowed too much iron into my brain.

I immediately went into a fog, could not think, could not articulate more than two words, my brain stopped talking to my bladder so fluid went straight through me with no control.  When I tried to drive to dr I could not remember where I was going.  When I tried again, repeating to myself  "I am going to dr", I could not remember how to get there, then I realised I could not read traffic lights.  I have not driven since.

So  don't ever let them give you medication that dilates your blood vessels.  It took me 6 years to get articulation back but I still go blank now and then and can't think of words or how to describe what I mean.

But that is me, it is not the same for everyone.  I think it is because my gp ignored the signs for too long and I loaded too much iron into my organs.

I must say the earlier symptoms did dissipate with venesections.  The LS chest pain started dissipating very noticeably.  Eventually I could think a lot clearer but the fatigue and body pain barely went away.  I am still searching for answers.  Drs know nothing.  My haemotologist/oncologist who is excellent and also treated my husband for his HL, is not a haemochromatologist - they do not exist.  He keeps telling me that I should not have any problems now that I have been 'deironed'.  Well, I have been deironed for going on 15 years and I am still having ongoing problems.

When my husband got HL, I had to give up work and it was so much better for me.  By the way, if your partner is still feeling poorly and depressed, tell him to ask for a Vit B12 test if that has not already happened.  Something stopped my husband from being able to absorb Vit B12 from tablet form and he got worse and worse for years after having HL.  When dr finally thought of it, he was extremely low and only injections of B12 work for him now.  It made an immediate and huge difference in his well being.

As my blood is often too thick and black to venesect very well, I am thinking no wonder I have such fatigue and pain - imagine that glugging up my body.  I had asked about using aspirin a few times with no successful advice so recently I decided on my own bat to do it.  In less than a week, I felt lighter, could walk faster, and now find I WANT to do things.  I still crash and burn early but now at least I am managing to do more.  My next venesection is mid June - so looking forward to it, as I usually do so I can feel good for 13 days - hopefully longer now.

There are a lot more stories about my case but it ends up being a book.  So I have had a lot of experience with HH.  I started a support group and with my knowledge am able to help others get the right treatment, see the right drs, what tests to request.

The main thing as that we have to educate ourselves and not depend on drs knowing what they are doing.  We have to be assertive about tests and treatments, so don't hold back.

I think it is important for you to have pit gland hormones tested as, if you have excess prolactin (as I eventually found I did), it makes your oestrogen ineffective and you will get menopausal symptoms, including cessation of your periods.  Anxiety (and depression) is very much a symptom of HH and the effects of it on your oestrogen.  So when you get deironed and your pit gland is ok, that feeling should go too.

Keep talking, and keep asking.  It is a learning experience for us all.

It could be itchiness from iron in your skin - do you have an abnormal tan?  Also menopause caused by reduced oestrogen can cause it.  There are probably a hundred other reasons but I am relating to what HH can do.  Also test for Helicobactor pylori which can cause allergies as well as gut problems.  It thrives on iron.

Get tests mentioned above as you still have a long wait to see Haemotologist and maybe he will venesect straight away and maybe he will not as he may want to run his own tests.

Hi Sheryl

No tan, quite the opposite really. I'm very pale.  Quite concerned if it's related to menopause.  Could I potentially be going through this at 34 yrs? I still want to have children if I can. 

Katy

Katy, suggested only in relation to HH which can cause this.  Also, as iron can cause damage to pituitary gland and throw your hormones out to cause the same symptoms.  As I know this is very important to you, I am suggesting you get your pituitary gland hormones checked asap.  It is bad enough that that could take a while, if you have to see an endocrinologist to do so.  Take this worry out of your life by eliminating this possibility.

On the pituitary gland forum there is a young woman who was finally found to have a prolactinoma (a pituitary gland tumour causing excess prolactin) and had only one period in her life at age 14.  She believes she has had this prolactinoma since then (very possibly true given the symptoms), and did not realise that she had been in forced menopause all her young life.

For these things, do not wait for the haemotologist to do something about it.  That is not his field and will tell you to go back to your gp.  He will only monitor your blood levels and your venesections.  If you are lucky to get one who has a special interest in HH and has researched it extensively, you will be extremely lucky.

I know pale skinned people who have HH too - just means it has not deposited in their skin.

 

Hi Michael. Just in the last week I've started getting joint pains in my hands with a couple of twinges in my knees and ankles. I'm guessing these must be the areas most affected by joint pain. 

Really glad lad you've managed to get your levels down to a safe level.  Can I just ask how long you would think it would take to get mine back down to a safe level and how many venesections you think it might take? 

Thanks

Katyx

Hi Katy. The hands and finger joints are the main ones that do tend to affect most people, and i did see this on the Haemochromotosis web site, and been told by many Dr's that i have to see. Some other people may disagree with that.

As for how many Venesections you will need and how long it will take, sadly i can't really answer that one.  I lost count as to how many i had, but it took a year and half to do it,.going on a weekly basis, i could say 3 months,but it may take longer, or be quicker, are you a good Bleeder !

hahaha. So, best to just keep going,and hope for the best outcome.

Hope thats being fairly helpful for you.

Mike. x

I guess we have been avoiding the question.  How long?  Different for everyone - depends on how aggressive your haemotologist is going to be - depends on your weight to a certain extent, whether you smoke, drink, etc.  Lots of different factors including your TS%.

Mine took over a year but I did not think of making a record of it - too frantic with work and fatigue.  I did manage to get my blood tests to record but will need to get access to my hospital records to see how long I was on weekly, then fortnightly, monthly.  Eventually worked up to 2 monthly, then 3 monthly.

My Haemotologist tried 4 monthly but that was a disaster, that was when I was discovered with severe arrythmia and given medication that I should not have been given with haemochromatosis.

Just be prepared that your life will belong to your haemotologist for at least a  year then you will be eventually weaned to a longer time between venesections.

Just keep remembering - better than having chemo (which I had to tell myself often)!

 

I would get those pituitary gland hormone tests done asap.  There is no guarantee that everything will return to normal but everyone is different.  Don't want to upset you, but I would expedite everything that you can expedite.  Get your dr/fertility specialist to speed up the process because of your very important reasons.  I believe in being proactive when it is so important.

 

Hi Sheryl. I have booked an appointment with my doctor to talk about it. Also going to see my fertility doctor. You are so right about having to be proactive.

thanks.