16 Questions To Ask Your Doctor About Haemochromatosis

by on

I cannot tell you how incredibly humbled I am that Iron-ic Wellbeing has attracted such a fabulously loyal group of readers in only a few months  – thank you all for making this journey so transformative.  Recently I received feedback from a reader that I had helped her to “join the dots” and she had subsequently made an appointment with her GP as a result to undergo testing for haemochromatosis.  If Iron-ic Wellbeing can help even one individual achieve early diagnosis, then carving out time on a Sunday afternoon to religiously write my posts is more than worth it!

This feedback also got me thinking about how unprepared I was for describing my symptoms to my doctor AND in asking follow up questions once my diagnosis was confirmed.  Kudos to my GP for even picking up that I had haemochromatosis in the first place as the description of my symptoms was far from unique – “I feel tired all the time.  I have no energy.  I have pain in my right knee.”! Seriously, could I be any more generic and unhelpful?  From this short list of ailments, however, my astute and inquiring doctor saw fit to run a full set of blood tests, and the rest, as they say, is history!

Seriously though, if you suspect that you have any of the symptoms (check out the list of symptoms on my Haemo What page or visit Haemochromatosis Australia here), please make an appointment with your doctor today! Any of the common symptoms, particularly if being experienced as a combination, will be a flag to your doctor that you may need a blood test to screen for genetic haemochromatosis – and the sooner this is done the better in terms of preventing organ damage and serious health problems.

I’m not a health professional, and I’ve always been clear on this, however picking up on the lessons learnt from my own experience, you might like to prepare in advance for your appointment by considering the following questions:

  • What are your precise symptoms and how long have you had them?
  • Are your symptoms continuous or do they come and go?
  • What makes your symptoms better or worse?
  • Do you have any family history of illness or disease (more on the importance of discussing health conditions with our family members in a future post…)
  • What medications, if any, are you on?
  • Do you take supplements, and if so, which ones?

Take it from me, it’s also super critical that you understand what haemochromatosis is, your test results and treatment options. We are all human, and hearing we have an inherited genetic disorder can obviously come as quite a shock, however to help you make informed decisions about your disease and take responsibility for its treatment, it is important to understand a few of the basics.

To help you think on the spot, here are sixteen questions you should  ask your doctor when first diagnosed with haemochromatosis.

  1. Can you explain how the genetics work?
  2. What genotype am I?
  3. Can I have a copy of my blood tests?
  4. What is the best treatment plan for me?
  5. Where will I need to go for treatment?
  6. How should I prepare for a venesection?
  7. How can I easily explain haemochromatosis to my family?
  8. Should other family members be tested?
  9. Do I need to follow a special diet?
  10. Will I need a liver function test or biopsy?
  11. Do I need any further tests (ultra sound, MRI etc)?
  12. Should I see a specialist?
  13. What are the implications for any existing conditions I may have?
  14. What happens if I don’t get treatment?
  15. When should I make my next appointment?
  16. Where can I get further information?

Now, I know it’s not always easy to feel  you can ask your doctor a list full of questions.  I mean, they are so busy, you are taking up their valuable time, surely they have patients with more pressing needs and so on.  NO!  Take your time and ensure you leave your appointment satisfied you have the answers to all the questions whirling around your head – and just in case those same questions miraculously escape you just when you need them, I’ve prepared a “Freebie” you can download and take along to your appointment.

Being diagnosed with haemochromatosis was a relief for me – at last I had a name for what was wrong and it wasn’t psychosomatic.  I had never heard of haemochromatosis before, did not know anyone else who had it and, for a long time, could not spell it! But the symptoms which had been causing me so much stress and exhaustion finally had a name and something could be done.

Help keep this “Freebie” a living resource  – what questions have you asked your doctor that are not on the Checklist? Let me know by leaving a comment below.

Comments are closed.