What to do?

[Porphyriamaniac]

My liver is clogged up with fat, porphyrins and iron, basically a load of shite... Any of which on their own are toxic to the liver, the fat on its own was bad/scary enough. I'm waiting to see a haemotologist about the porphyria and iron loading. I'm 33 but I feel 83 most days, fatigue is what started all the investigations and it's getting worse, aswell as the overwhelming tiredness and creaking like an old gate my brain gets foggy now, that's a new one on me. I can sleep 8hrs a night but can still manage a 3 hour nap given the chance. I try to eat as well as I can most of the time, no booze, dropped some weight, alt had risen slightly last check, so that's not going in right direction, I'm not sure what else I can do? I'm feeling worse not better. I don't exercise aside from school run and work, on my feet 7-9 hours everyday. I feel dead on my feet come 3pm, cant function on afternoon without coffee. Anyway, sorry for the whining 😁. If you were me, would you ask for a fibroscan? Can only a hepatologist refer me for this? I've read they sometimes do an mri to look at iron in liver, ferriscan? does anyone know if fibrosis or worse would show up on that?

Thanks for listening, Stacie. Xxx

[Hidden]

It's unusual to see iron elevations in females of childbearing age unless menstruation is stopped either surgically or from some of the newer birth control methods.

If you get diagnosed with hemochromatosis I expect a fibroscan will come with the workup.

The phlebotomies to treat iron elevation can be fatiguing, but once they are underway many of your other symptoms may resolve and the fatigue should improve once you're effectively de-ironed.

In the mean time, make sure any vitamins/supplements you are taking don't contain iron and look forward to better days once the hematologist starts therapy. Limiting sugar (especially from sodas) should help shift some of the fat from the liver.

Hope you get into hematology soon.

[Porphyriamaniac in reply to Hidden]

Hi metanoia, thanks for the reply. I have an iud fitted for contraception and heavy periods, I had already thought that may have something to do with the iron loading but I also have another condition that is linked to haemochromatosis and fatty liver. The treatment for this is phlebotomy too, I just want to get started now before summer comes and my skin symptoms flare up badly again(it makes my skin photosensitive) and I do hope it helps with the rest of my symptoms. I think I'm going to insist on a fibroscan whether I've got haemochromatosis or not, it's the only thing that will set my mind at rest about my liver, I just wanted to get other people's take on it. The only supplement I take is a high strength vit D as gp says I've an insufficiency, I've checked and it has no iron. It's hard to avoid in your diet, from reading packaging and looking on the internet it is in everything! 😩. I don't drink soda much and if I do its diet versions. Just been told today there is around an 18 week wait for haemotologist at my local hospital, I understand as there are people in a lot more urgent need than me, cancer etc. I don't think I'm about to die it's just more time worrying, muddling along and possibly getting worse.. 18 weeks is a long time really. As I say I just want to get started now, it's been 3 years since I started having problems.

Thanks for your well wishes, and for listening.

Stacie Xxx

[Hidden]

You might ask your GP if it's safe for you to do a standard blood donation while you're waiting to see hematology and get a head start on getting de-ironed. Be sure to donate only whole blood (not plasma or platelets). The iron is in the red cells.

There is even an option called a "double red" donation, where they spin out your red cells and return your plasma and platelets back to you. The "double red" donation takes twice as many red cells as a standard whole blood donation.

A double red donation can leave you feeling a bit wiped out (anemic) for 5 to 7 days, but it's the fastest way to dump a boatload of iron in one sitting.

[Porphyriamaniac in reply to Hidden]

I have looked into it and it's a no go,because of the porphyria my blood has to be pumped and dumped ☹ also if I do have haemochromatosis same applies till I'm at maintenance levels. It's a shame but it seems my bloods no good to them...Thanks for suggestion though, was well worth a try. Xxx

[Porphyriamaniac]

Thats interesting, thankyou I will look into it. Xxx

[Faithfull]

You sound like me but I don't leave bed now so I'll sorry it's a f... Nightmare

[Porphyriamaniac in reply to Faithfull]

It is faithfull, im hoping they will agree to fibroscan to set my mind at ease. I hope yours goes well too. Keep your chin up. Xxxx