Hashimotos/AIH/PBC...how many more can one have.

[Alley27]

Hi, sorry not been active as much as I would like on here have been in hibernation..too fatigued to try.

Just a short update. As I blogged before I have had issues with my weight due to steroids. Cannot shift it regardless of how much exercise or dieting I do...and when you consider I have no appetite and don't eat much, you would think I would lose loads.

On my last visit to the consultant 2 weeks ago it was decided to my joy to gradually lower the steroid dosage. I am now on 10mg per day from 60, I feel a little less constricted around the middle and I lost 4Lbs..yeah, just by reducing steroid dose; goes to show you what damage steroids are capable of.

I have consented to taking azathioprine despite the risk factors.....but what I wondered about was why the consultant said that when the steroids go to 5 mg, I would need what she calls a short synacthen test. I have looked this up on the net and it is done to test for Addisons disease....I did not think that was my problem, and I am worried she has asked for this to be done. She never said anything to me about it at my consultation, and it is worrying.

I know I have hashimotos/AIH/PBC overlap, how many more autoimmune conditions can one person have....this is so worrying and confusing...and besides that I think I have enough going on without another on top...

Does anyone know anything about Addisons disease? I am not saying I have it as yet, but I think I need to find out more about it and it's relationship/link to AIH/PBC. Just in case; I am also in the thought pattern that if the consultant did not have good reason, she would not ask for the tests done.

It is so worrying when these things are done without our care providers explaining why they need it done. I did have some tests done, and there are so many symptoms like no appetite, cramping joints, fatigue, diarroha..she did a test relating to that as well, she also put my Urso up to 1000 mg per day. I was originally perscribed this as one 250mg at night because I get itchy some nights.

I will keep everyone informed...am just concerned thats all.

Thanks for listening to my moan, you are all brill on here lol.

xxconniefused.

[mumofthree]

Hi conniefused

If we can't have a little moan on here where can we aye? Try not to worry too much, easy for me to say I know as I am not going through what you are! It could be that the synacthen test is used for many conditions that are just not documented at the moment.

My father has parkinsons disease and he is being given a drug on a trial basis, but the drug... if you read up on it...is used to treat alzheimer patients, which he does not have... but the drug has been found to help with some elements of parkinsons, so thats why they are trialing it with him. He has had to have weekly, fortnightly blood tests over time to check for certain signs in case they do him more damage than good........So what I am saying is, just because the net mentions the test is used for testing for Addisons disease it does not mean that it can ONLY be used for that. I may be wrong, but it is possible that it may also be used to check the effects the drugs.. steroids and azathioprine.. are having on your body.. as you mentioned it was suggested in relation to the steroid dose..

This is why I have said on previous occasions.. the net is a wonderful tool.. BUT.. it can be so dangerous in other ways... by planting these little seeds in your mind which can cause you more stress and worry than the worth of it.

You did not say when you will be seeing your consultant next. If its not for some time, I would suggest that you contact the consultant or even your GP for clarification.... If you don't, you'll end up getting yourself in a right old state, probably worrying unecessarily. You've got enough on your plate as it is... so at least it will put your mind at rest.

What ever you choose to do I wish you all the best

[littlemo]

Hi there just to echo what mum of three said and add a little. Sometimes its hard just to trust in the people looking after you but in my experience as a healthcare worker( and in my experience as a patient on the receiving end of care) learn to trust in the people looking after u. Tests are done for two reasons to diagnose AND to rule things OUT, patients (include myself in this ) sometimes find it difficult to just let the dr's do their job. They, specially the liver consultants, have usually a wealth of experience and intuition on our conditions aswell as a lot of kwowledge and as the professionals that they are if they don't know the answers to questions you ask they will find out one way or the other! If it is a case that ur symptoms are unbearable and u are unhappy with ur care you do have rights as a patient to complain and change drs if need be. Try not to worry sometimes internet good sometimes not so as it can give info on the worst case scenario! (p.s. When I first went on line after diagnosis nearly had a nervous breakdown!). bfn take care and keep ur chin up

[Tumbleweed41]

Hi Conniefused -

I will agree with mumumofthree and littlemo and put in my 2 cents. - A lot of Drs. have their own way of diagnosing, planning treatment, making sure nothing is overiding another, etc. Don't let it bother you too much. - I know, easier said than done.

I have been on 75mg of Azathioprine since about 2 months after dx, but they did a test first to make sure that I coud tolerate it. I have also been on 900mg Ursodiol for the same amount of time and seem to be doing ok, tho' I'm sure you know that I would dearly love to get off of it all. lol

If you don't have any new symptoms and arent' doing any worse, don't worry about it too much and you may want to contact your dr. and ask why the test is necessary - that you would just like to settle your mind.

Hugs.

[Alley27]

Hi My consultant rang me this afternoon and explained this test..apparently when on steroids your adrenals stop working/producing the hormones/steroids your body needs..the test is to make sure your adrenals switch on, work and produce the hormones for your bodies needs. It does also show if addisons is present as well and if it is then we will deal with it.

Thing is, steroid dose needs to be 5mg per day, unfortunately she also told me my LFT's were high again 300..they should be 40.....at 400 I was rushed into hospital with jaundice and feeling very poorly indeed. she has asked me to go back up to 20 mg of steroid per day because my LFT was normal, she also wants me to start azathioprine asap to control the antibodies. And heres me thinking things were improving for me......what fun these diseases are.

When she said I needed to go back onto 20mg a day..I refused because I have been having big weight issues...and in my opinion extra weight will only make things worse..I hated the moonface which has just started to disappear and recedntly lost 2Lbs in weight..I am on 10 mg steroid at present. And if this is not bad enough the results of my tpmt test has not come back yet after 3 weeks, nor has a few other tests that have been done.....she is chasing them up today and will ring me tomorrow to let me know where I stand wit the azathioprine.....to be honest I think I should have been started on aza in the hospital when they found out what was wrong..but never mind..who am I to speak lol..Just the sodding patient.....

So today has been crap..but I did feel unwell this last two weeks..now I know why.

xxconniefused