Getting tested for ahi tomorrow

[Bumblebee1986]

Hello, I am new to this forum. I have been feeling really really fatigued and tired like I have never been before.. many nights my achey legs that are really bad. I went to my doctor thinking it might be my vitamin d.. well when the results came back she said the vitamin d was fine but the liver tests were not. They are going to test for autoimmune hepatitis tomorrow..

Apologies If I sound really silly as I've done some reading on google and symptoms seem to vary hugely.. I'm 31 with three boys 6 and under and am quite afraid about the test coming back as positive and how it would impact my life? Work?

How were others diagnosed and what sumptoms did you have? How have you progressed

Thanks in advance 😀

[Hidden]

I was diagnosed 9 years ago and I started with the fatigue, although when you use the toilet there are other signs. Ask your GP about this. To get diagnosed they will do LFT's (Liver Function Tests) by taking blood, followed by an ultrasound. If they feel there is enough evidence to proceed, then a biopsy will be done to confirm. They will need to rule out other possibilities first before doing a biopsy.

After a 2 week stint in hospital, I returned to work (but I was p/time) and continued working p/time after that. Some people are affected more than others with the fatigue. I find once the medication is right, then fatigue hits me more in the hot weather, but generally I can be normal. After a couple of years we went back to the gym 3 times a week and I did Zumba, HIIT as well as circuits, so it will depend on you to some extent to fight the urge to rest.

It is a lifelong health issue, but it can be managed. I suggest you join the Facebook group AIHorgUK as this will answer questions specifically on AIH only and they have meetings twice a year with the top consultants in this field.

The biggest problem for me was getting it under control initially. Mostly I have been fine for the 9 years since, although I have experienced a couple of bumps along the road!!!

All the very best. Don't treat it as a death sentence. It is a long term illness that can be managed successfully.

[Bumblebee1986 in reply to Hidden]

Thankyou for your reply, your journey gives me a positive feeling 😀

Currently it's the fatigue and achey legs and nausia that is very noticeable.. I suppose I just want it felt with what ever it might be so I don't feel like this anymore.

I will join the group depending what the results come back as 👍🏼

[Hidden in reply to Bumblebee1986]

You are very welcome and I hope that you do get a diagnosis soon, if nothing else to deal with those debilitating symptoms. Totally understand about waiting for results and Facebook isn't for everyone. Personally I find the meetings and notes from meetings I have missed, the most use. I don't really "do" Facebook as such. However, since the group is closed and just for AIH users, then you will get more feedback from a larger number of people than perhaps you will do here. I would of course urge caution when reading some posts, as of course you will get a variety of responses depending on peoples' outlook on life (positive/negative), just as you would with any group.

Anyway, if you have any questions later on, please don't hesitate to ask. If it is AIH, I can tell you that from the LFT's, the ALT and the IgG numbers are the ones to keep an eye as these are the 2 key markers. All the very best

[freddie76]

Please make sure u get tested for alpha 1 anti trypsin deficiency.

This is rarely tested for and causes liver disease. if no other reason is found make sure this test is also done.

Good luck

[Hidden]

I just got diagnosed myself. I have taken hard. But I am taking the medications prednisone and Autoimmune suppression Aza and my enzymes came down a lot. I am eating totally different now and not thinking negative at all At first I thought it was a death sentence 😢 I had Biopsy but Doctor said I was too inflamed to actually tell anything. So he will continue treating me with the medications until liver enzymes come down to normal and he will start tapering down some. Please keep me posted would like to know your results. I am a grandmother and want to be around for long time to watch her grow. I pray all the Time. Next week I see a hemotologist .. best of luck. ❤️💕

[Bumblebee1986 in reply to Hidden]

Thankyou all for your response,

Freddie she wouldn't add it on but will keep note for when I meet the doctor.

Nidia, it's great that you are making positive changes to improve your health, I think I need to make these changes too.. a very poor diet on my behalf..

I hope you also continue to maintain good health

I will let you know how I get on,, does anyone know how long these tests tend to take?