GP is sending me to a Haemotologist

[sheenah]

To check to see if I have haemochromatosis (GH). Interestingly, my ferritin was down a couple of hundred points since my initial test prior to taking NDT, and this has peaked his interest, as there have been no other changes - diet, etc - this could mean that NDT lowers high ferritin levels - mine were getting silly at 550, down to 350???? Anybody tell me what I might expect from a meeting with a Haemo? XX

[crimple]

No doubt he will want you to have lots of blood tests!

[shaws Administrator]

Is it co-incidental that since NDT has lowered your ferritin, the Doctor, I assume, wants to look for another answer and also to know where the iron has gone so is double-checking re the haemochromatosis.

haemochromatosis.org.uk/

I haven't seen an haematologist so don't know what you can expect. It will be interesting to find out.

[bestbuddy]

I saw one 3 years ago as I have siblings with haemo and I myself am a carrier...therefore CONS can't rule out that I may have iron storage problems. My ferritin is raised but not as raised as yours...he just told me it was an indicator of inflammatory process but needs watching. Advised to have Total Iron Binding Test once a year to check ferritin levels and that's all. Rheumatologist has ignored my concerns regarding iron storage and joint pain.

[Hidden]

Hi there

It never ceases to amaze me just how ignorant most specialists are of their own discipline. High ferritin is very common in hypOT patients because being hypo increases inflammation and increased inflammation raises your iron stores (ferritin). I'm pretty sure this is what has happened in your case as your ferritin has come down on NDT - a decent treatment for hypO. You can read about the importance of iron here: stopthethyroidmadness.com/f...

Your specialist should have tested your other iron levels? Inc serum iron, transferrin, TIBC and saturation percentage? These all need to be optimal not just normal for your thyroid meds to work.

Also a good endo would have been alerted by the high ferritin to check your inflammatory markers - ESR and CRP. Do you have copies of all those?

If you have adrenal fatigue, low cortisol (your body's own steroid) will push your inflammation up, as will leaky gut, candida and all the other underlying issues that stop us getting better.tpauk.com/main/?page_id=1599

In my experience unless you are seriously anaemic (which you might be, high ferritin aside) then Haemo will take every test known to mankind, scratch their heads and say 'but your thyroid levels are normal'.... and send you back to the endo. First time I had an infusion as my ferritin was 15 and I was symptomatic and my endo insisted, but second time my serum iron was very low, everything else was 'normal' and they did nothing (they did loads of tests though so helpful to get copies of all that for my file!)

I highly doubt you have haemachromatosis, and just have bog standard hypothyroidism. It even still says it on some levothyroxine inserts about hypo and iron levels but my (good) endo told me that iron and hypoT has now been taken off the treatment pathway for thyroid. Which further proves we are no longer practicing evidence based medicine in this country, and doctors are increasingly just glorified drug reps.

Good luck with it all but in your shoes I'd be pushing for copies of all other tests they've done for you and checking where your inflammation was, and where it is now on NDT ... I'd wager it's fallen, which is why your ferritin has fallen. I'd also be educating myself in detail about my illness, the STTM and Dr Peatfield's books would be a good place to start.

Thanks,

Rebecca

x

[sheenah in reply to Hidden]

Many Thanks Rebecca

For that long and detailed response - very kind of you to take the time!xx

I am new on this journey, even though I have probably been hypo for many years - genetics by the lorry load - I went to the GP at the end of January as I could no longer function. Therein commenced a war which so far I have been fairly fortunate in my most recent battles -mainly because of the folks on this site, Doc Peatfields book, STTM book and umpteen websites.

After reading all the comments about useless and ignorant Endi (plural of Endo according to me anyway) and finally being offered an Endo appointment, I decided to go the private route with a integrative practitioner in Winchester (2hrs away for me) who was recommended on TUK - so far very much the right way to go as he immediately prescribed NDT and adrenal meds +homeopathy; I am seeing him again tomorrow.

I saw the word "haemochromatosis" in Doc Peatfields book and as the scarily stupid doctor had told me that I had a "good iron store" I got a copy of my results and started to research. I sincerely hope I have not got this and that I have got bog standard hypo although I also have several markers for "The Celtic Curse"! But surely a gene test for C282Y or C282Y/H63D will provide an answer - (she laughs hysterically). !!!!

I learn so much every day on this site, I have to say it is the most useful and helpful site I have ever encountered. I will keep everyone posted on my progress.

Many Thanks again

Sheenah XX