Sketchy 🤔

[Porphyriamaniac]

Hi all, hope you are well on this miserable day? Yesterday I had my elastography/fibroscan, it was radiology gastro consultant that did it and he said ive managed to shift some fat off my liver 😁...but he wouldn't tell me my fibrosis score or see the screen, was very sketchy, would only tell me there was fibrosis, said he'd have to quantify it. I heard him talking to the rep for the machine saying what he saw on ultrasound(ok), didn't correlate at all with the fibrosis scores, the rep said the accuracy was good, they seemed to be disagreeing. Anybody had anything similar happen? Everybody else on here seems to be given their scores or at least given an indication? I'm anxious now really, hepatologist told me he'd see me in six months, I don't think I can wait that long. Thanks for listening, Stacie. Xxxx

[Hidden]

Hi

My consultant usually says 6 months but I always say can it be 3 months and says ok then. If I start to feel worse his secretary will talk to him and they bring my appointment forward. I feel very lucky that they listen. You could phone secretary and see what she can do. Hope everything goes well. Love and hugs Lynne xxxx

[Porphyriamaniac in reply to Hidden]

Hi Lynne, thanks for your reply 😊. Maybe it will be sooner if these results don't make sense? I would feel more at ease if I'd not heard them talking, I think that was a bit lax of them. What it sounded like to me was, fibrosis score was high, consultant was baffled by this but the rep was showing him they were accurate readings. I'll give it two weeks or so and ring if I've not heard anything maybe. Love to you Lynne. Xxxx

[tommyc in reply to Porphyriamaniac]

If it’s an issue, you will be called back however chase your results, he may not give you details as he can’t fully comment

[Porphyriamaniac in reply to tommyc]

I hope they call, I feel he should have been able to comment, he specialises in gastro investigations. im worried it was bad, that's why he's leaving it to hepatologist, although i realise worrying wont change any results, just drive me demented 🤯, I just wish he would have said more, bad is better than limbo. I will chase up if I don't hear in a few weeks. Thanks for your reply. 🙂

[tommyc in reply to Porphyriamaniac]

When were u dx and what was ur Ferritin at the time? All the best

[Porphyriamaniac in reply to tommyc]

Thanks Tom, i've been symptomatic for 4 years or thereabouts, properly diagnosed with porphyria cutanea tarda Jan 2018, ferritin was only 345, minute compared to yours, transferrin sat 53% but neg for the CY gene( they never tested for others) it's not the iron issue alone though, my liver was also full of fat and backed up porphyrins from the porphyria aswell, like a triple whammy, I wasn't so concerned until yesterday. My venesections brought my alt down to high normal, so that's positive 🙂 venesections lower my ferritin and porphyrins too as they bind to iron.

[Hidden]

You have a legal right to see the results. Call them and tell them you want a copy of it sent to you pronto.

[Porphyriamaniac in reply to Hidden]

Hi phoenix , thanks for your reply 🙂. I will do, if I don't hear in two weeks or so, I'll give them chance. Do you think it odd he wouldn't tell me Phoenix? 🤔 xxx

[Hidden in reply to Porphyriamaniac]

The fibroscan operator that did mine the first time wouldnt tell me. I has to wait for the doctor to send me the report. But the second time I did it in a doctors office they told me right away.

[Porphyriamaniac in reply to Hidden]

I could be worrying over nothing 😁 I'll find out one way or another. Thanks for your advice, I'll keep you posted anyway. 😊

[Hidden in reply to Porphyriamaniac]

Please do 🙂

[Julie8]

They should send you a letter with score before then.

[markren]

Hi there, similar story to yours. Had a yearly blood test as I have an underactive thyroid, as I am on a statin the doctor asked for a liver test. My liver enzymes were elevated. Sent for ultrasound, results showed no fatty liver but showed my liver was coarse with a couple of sensitive areas. Sent for Fibroscan, radiologist couldn't see anything to worry. Had a follow up appointment with Gastroenterologist after having more blood tests. Enzymes still elevated and because of the results on Ultrasound decided that I should have a MRI Contrast, where they run dye through the body. He asked me if I was claustrophobic and I told him that unfortunately I was. He said I could skip the MRI Contrast Scan and he would have a discussion with the radiologist and he may decide to do a liver biopsy instead. I have heard that a liver biopsy can be very painful especially after the procedure and has its risks. I told him I would prefer to have the MRI Contrast first, perhaps with sedation. He agreed and sent the form off to Radiology and asked me to ring them in four working days for an appointment. Now this is where I am getting anxious. I rang Radiology for an appointment and was told that the request form had been returned to the Gastroenterologist for discussion. I am anxiously waiting to hear now, what the next step will be. Go ahead with MRI Contrast Scan or biopsy? I'm terrified of having a biopsy but dare I refuse? I had one on my thryoid years ago but that was less evasive. I had acquired a goitre and you could see where the needle was going. Ive been told by people that liver biopsy is more complicated. This waiting is very scary. I already was given an appointment to see the gastroenterologist again in May before the form was returned. I rang up radiology and asked if they had cancelled it. They told me that I will have to wait to hear. Hopefully, they may just leave me till May. Will have to wait

and see.

[Porphyriamaniac in reply to markren]

Hi markren, thanks for your reply. I think I'm the opposite in that they've found it's stiff but looks ok on ultrasound. Not entirely sure as I've not heard anything yet but it's only just over a week ago. There are lots on here who say the biopsy is nothing, it worries me too but I think if that's the only way to know it has to be done. The waiting and not knowing is the worst part I feel! Wishing you the best, let me know how you get on. Stacie. Xxx

[markren in reply to Porphyriamaniac]

Thank you for your reply Stacie, very reassuring. I will certainly let you know how I get on. Hope all goes well with you.Sandie Markren 😆

[Hidden]

Hi Stacie,

Not knowing and properly understanding test results often causes more stress.

Could you consider contacting your consultant's medical secretary and requesting an appointment so you could get some clarification?

Best wishes

Trust1

[Porphyriamaniac in reply to Hidden]

Hi Trust1, thanks for your reply. I am going to give it either week or two and do just that. 🙂

[Dencos102]

Hiî

[Porphyriamaniac in reply to Dencos102]

Hi 🙂

[Hidden]

Hi

I be had the MRI and liver biopsy. With the MRI I had headphones on because it gets rather noisy, Im not claustrophobic but I still shut my eyes and started singing songs in my head!!! I found the biopsy absolutely fine, the only bit that hurt a little was the numbing injection, they told me there would be a loud click when they took the biopsy and demonstrated before doing it. I only had shoulder pain afterwards for which they gave me painkillers. Good luck with whatever you decide to do. Love and hugs Lynne xxxx