Today was finally the day after months of waiting to see my Haematologist!

I have been seeing a different GP lately due to Heart problems. I have been having really bad palpitations. So I have done the Halter Monitor and echo however she said it could be due to the fact that my iron count currently sits at 2! So she has held off with the referral to the Cardiologist waiting to see if the iron infusion makes a difference.

Anyways, she wrote all this in my current referral to see Dr Baker and finally get him to confirm the diagnosis of VWD and also which type as she is unable to prescribe me anything heart related until she has his CONFIRMED diagnosis.

He is now running the tests (I need to go for them tomorrow) and looks like I could have an answer next time I see him which is Saturday. He is now also checking for an autoimmune disorder as my white cell count is low, liver enzymes are abnormal yet my iron stores count is normal. My old GP said I have chronic anaemia but he said because my iron stores are within normal range that would point more towards an iron deficiency rather than anaemia. Either way I still need an iron infusion. With 2 kids its hard to nap during the day and staying awake while i am running on empty is seriously hard.

So my faith in him has now been restored and I am once again happy to see him. Now I just need to go and get 15 tubes of blood taken and hopefully have my answer!

15 tubes, that is quite a lot! I am glad you are making progress with the appointments. Keep us posted, Perth mum!

Hi Perth Mom,

Sorry to hear of this additional challenge!

I'm not a VWD patient, or an expert on anything, just a helping hand at Ben's Friends, but here is an interesting article, please note that cooking in cast iron will help iron intake. I had to get rid of all my cast iron when I got a smooth top stove, however there are new smooth flat bottom cast iron cookware by Chef Bobby Flay out that can be used on a smooth top stove.


I hope this is a small help to you.

Sending my best wishes to you for wellness,


Thanks for all the support! I was lucky today and got away with 12 tubes of blood and not the normal 15 he takes but it doesn’t bother me because I know he is being thorough.
I think it’s safe to say that being a full time mum is definitely a lot harder with this disease because of the low iron and running on empty most of the time.
Will update again after I see him on Saturday and hopefully mum can shed some light on pervious family history as she is now coming with me for the first time as she has been extremely concerned lately.

It would be interesting to know how many people with VWD also have an autoimmune disease