Crashing? -could be to do with other autoimmune diseases - such as autoimmune hepititis (AIH)? Some thoughts and ramblings....!!!

[waveylines]

Hi everyone,

hmm I am wondering if I might be in a middle of another possible autoimmune attack on my body. It would be great to hear from anyone else who has experienced or are experiencing this.....

This is my little potted history: I've had Vitiligo from late teens -extensive now (Vitiligo being when your body attacks and destroys the pigment in your skin -am lilly white now!) and also developed Hypothyroidism 8years ago (as a consequence of CFS/ME so a NSH Consultant told me...but a private doc thought differently). I take 5000iu of vit D because I cannot tolerate any sun, and a NDT - Erfa. I also was supporting my adrenals with Nutri Adrenal as advised by a private doc. I thought I was sort of sorted but over the last 18months I have had periods where I really badly crash and feel so unbelievably tired and ill, indigestion, confusion, loose bowels, some aches and pains and just have to sleep and sleep and rest and rest!!. In between the crashes my level of energy gradually deteriorated and I have found i can do less and less.

Over the last 18months I have come up with various theories over what could be causing these crashes and put into place some measures to counteract and hopefully improve things -b12 sublinguals and b12 complex with follate, swopped to CT3M instead of Nutri Adrenal, took gluten out of my diet. Of course because I so very much want to be well, as each measure was introduced, I would say - oh yes I am better now and I would feel much better for a while until I would crash again.....upon which I would have to review and review what I was doing. To be honest I am absolutely sick and tired of researching and reading to try to find out what is wrong.... I just want my life back and not to have to keep thinking up ways of trying to improve my declining health. Before the diagnosis of CFS/ME I was never ill -in over 45 years i was just plain health and bouncy....hey ho....

So last week when I found I just couldn't cope with work anymore and felt so terribly ill I finally went to my see my GP and poured out my tale of woe. My GP was remarkable kind and understanding. 'Hmm,' he said, 'you should not be crashing like this when well medicated on NDT.' And he decided he would do a load of comprehensive blood testing ( three pages of it so far....). By now both the GP and I were convinced that I would have problem with b12 and Coeliacs. ( I had put the gluten back in my diet for 2 months to get tested). I crawled home to bed exhausted....

Yesterday I had a further appointment and my thyroid meds were as usual -TSH suppressed at 0.02 (has always been like that on meds) and Ft4 at the very top of the range. No change there then....

Ferritin was great 157ug/L (wow!) wit ha range from 30-400 and folate was top of the reference range too as was my potassium. And of course my b12 was above the range, in the 700's ng/L as I am taking supplements.

But what was not right was my liver enzymes -massively above the ranges -all three! I then remembered their being a problem over this a few years ago. So liver scan here I come (again). I told my GP that this time I really want to know what is going on as this has gone on for some years now -he agreed. Also my glucose level was a bit elevated so off I went to do a proper fasting glucose... We both agreed that although the Coeliacs test has not yet come back it would be unlikely I have this condition with these results....the result will roll in later on this week as will the fasting glucose test.

So I then remembered my research over this liver issue when it reared it's head before when all that came out of the scan was a very slightly fatty liver. The GP (different practise) at the time was stumped and so it was left. In the end I recovered so dismissed the liver blip as probably due to my thyroid meds not being sorted......have you noticed how we always blame everything on thyroid!!! lol....

So back to researching ( I just cannot stand not to know -what a control freak I am!!) and you know it was then that I first came across autoimmune hepatitis (AIH). I had never thought of autoimmune disease affecting the liver....and discovered there is a known link with Vitiligo with this condition. I really don't know if this is what is wrong with me ( time will tell -usually!)....but as I already have existing autoimmune conditions the odds on developing more I suppose are higher.....

I am just ruminating but it is good to write down and if you would like to know how things go I will update this blog as my kind GP investigates further....however i know this blog is not linked directly to thyroid conditions and therefore may not be appropriate for me to do so. I decided to write it because the long protracted battle that so many of us undergo to get good treatment for our thyroid condtions can consume us so much that it is so very very easy to let other condtions that are related to slip by us - I know I have blamed every hiccup in my health as being due to my ever present Hypothroidism!

If you wish to read further below are a few links about AIH:-

liverfoundation.org/aboutth...

jrheum.com/subscribers/08/0...

medicine.ucsf.edu/education...

[PR4NOW]

waveylines, please keep us posted on the ongoing test results. Did you ever do a TPO ab and a Tg ab test in your testing? Did removing gluten seem to make a difference and did you notice it when you added in back in 2 months before testing? Some times it takes a lot of detective work. PR

[Jackie]

Hi Well I have a lot of auto immune diseases,including vitiligo ( which is the only one that does not mater.and, liver disease but I am specifically writing to answer you about autoimmune hepatitis. It is often caused by gall stones ( or new reaction to old drugs ) and you could ,I guess also have pancreatic problems. I am going by my own experience. First I have bad gall stones but cannot have surgery. A while ago I had 9 terrible months with vomiting,etc etcI was also bright yellow. It was auto immune hepatitis and but I knew none of the other forms applied to me,so I did not realise . I was seeing a so called top gastro enterologist who could not diagnose. Every one knew I was yellow etc etc. After seeing hi for 9 months with no help at all. I happened to have heart surgery, I had never seen that consultant before. very soon after the OP, without knowing my symptoms this doctor said that he thought I had auto immune hepatitis. I had the test and he was right. No treatment possible for the condition except to remove the causes if possible.and it reoccurs often.When I had the acute hepatitis I had very bad LFT`s, they take months to settle from it. I have since heard of quite a few people who have had it and normally not diagnosed. I mention pancreas, unless you have terrible pain , unlikely to be serious, however if you have problems with absorption, food , drugs etc. then you need a enzyme test called Faecal Elastine, very simple specific stool test. if bad you need enzymes on a script, ( preferably) not a drug and they help with this. it is not too serious a condition but does need treatment if this is the case.

I hope this is some help. I see a specialist pancreatic consultant ,and a Hepatologist. As a rule, unless very lucky even the top gasto`s do not know or understand these conditions. In this case you need to go to a very top hospital as not many about.

Best wishes,

Jackie

[helvella in reply to Jackie]

It is "faecal elastase".

(Elastane is a fibre used to make garments clingy/stretchy. A.k.a. Spandex or Lycra. And Elastin is a connective tissue protein.)

[rossilin600]

Hi. Reading you story could have been my own and can certainly relate to all of this, I felt I could not go on with all of this and after doing some research felt I had probably got Adrenal problems and that was why my thyroid meds were not working for me I had never felt well and been on them for 24 years, i have never seen an endo so insisted that I had an app, after quite extensive blood tests ie: acth test and 24 hr cortisol tests last week they have discovered I have Addisons disease and am now taking 20mg of steroids throughout the day, of course we all know by now that unless your adrenals are working fine that your thyroid meds are not succesfully working unless adrenals are up to scratch, So now he have 2 hourly blood serum cortisol levels I will be taking the cortisol for 3 months and tested again to see how cortisol is rising through the day also 100ml of thyroxine which he will adjust by symptons as levels would not be correct on TSH screening.

Please have these tests done as Addisons can be very serious if not treated properly

[Jackie in reply to rossilin600]

Hi Thanks for your concern, I hope that you soon feel better,

Jackie

[snowstorm]

Rossilin600 --- you know what - if you have the energy you should sue the NHS for negligence. It is appalling that you have been left this length of time and not been referred to an endo. Clearly they have NOT upheld their moral obligation and responsibility to to do sufficient, efficient and thorough tests. What on earth was your GP thinking about? GP should definately get the knuckles wrapped. I am so sorry you find yourself in this dreadful situation.

Yes, you are absolutely right --- thyroid meds will not work efficiently (if at all) if adrenals are no functioning properly. Addison's disease --- for those who may be unaware is a dangerous condition to have. Have you had B12 & Vit D etc checked?

Off now for a few days but please keep us posted.

[rossilin600 in reply to snowstorm]

thanks, I am pretty angry as apparently when I was diagnosed with hypothyroid after a very complicated birth which I hemmoraghed heavily and almost died they are saying it might have started with a condition called sheehans which damage the blood cells and ties up with my MRI scan that showed any empty sella on stalk of piturity, I also have abnormal growth hormone and this all tie in the endo has said, so I have been struggling for all these years and been undermedicated all this time so that has put the strain on the adrenals and has now been diagnosed as Addisons. For the last 6 years things had come to a head and i have had CFS and fybromyalgia, weakness in muscles and hypogycemia, Gps told me it was my menopause and the stress of my husbands cancer and looking after my wheelchair bound mother. They just kept giving me anti-depressants. I done my own research and insisted they made a referral to endo and I am not sure that even he would have done these tests until I told him that my father had had a Piturity tumour. Why do they just not listen to us and keep fobbing us off.

[helvella]

Once you have a disorder which affects every cell of the body, and therefore can result in many, many apparently unconnected and sometimes frankly odd symptoms, it becomes progressively more difficult to be sure whether it is that identified disorder. Or something else.

That does seem to be one reason people with, say, Hashimoto's may have low B12 which is not identified for years.

And there are so many autoimmune disorders. Although not exactly a perfect information source, Wiki lists over 170 autoimmune disorders. Around 50 accepted, another 25 suspected and the rest suggested.

So a huge palette to investigate and consider. And there are likely many more which have not yet been even identified in any way.

PubMed does have a few interesting papers on associations between autoimmune disorders. For example, fairly high correlation between Hashimoto's and gastric parietal cell antibodies.

In summary, I don't think you are wrong. You simply might not be right. If you see what I mean - and I hope you are right in terms of finding out.

[Hidden]

hi, reading your message made me feel for you,l also have vitiligo for at least five to six years have under active thyroid for nearly three years ,had b/t three weeks ago then had call from gp to go and see him, my results were mainly hi unstained cells glucose high end of normal liver hi ferritin not tested even though asked as it went from 11 to 36 but that took 6 months , he told me to stop all my iron was concerned about liver result also cholesterol was hi asked how much alcohol l drunk (l,m virtually tea total) wants me to go back in march to have whole set of bloods done again, l also looked at auto imm hepatitis and got a bit freaked so l completely understand how you are feeling , hope your results will be ok ,hope you blog them ,at least your gp seems to want to find out what is happening to , have a good christmas and l hope the new year will bring you better health, hugs eve x

[hblower]

Any liver problem can result in strange conditions, and blood tests, along with numerous autoimmune diseases, I have cirrhosis of the liver, and can relate to some of the problems on the site as liver dysfunctions, nasal gastric oestoporosis, including saliva and ear problems and tiredness and so on.

Helen

[Finola]

Have you tried low-dose naltrexone - LDN. It is very good for many auto-immune diseases and some cancers as well as the immune system generally. I have hypothyroid, adrenal fatigue and liver antibodies and since I have been using LDN - three months now - my liver is normal, my joints are pain free, I haven't had a cold or a cold sore (I was plagued by them) and my thyroid is better controlled than it was - I use T3. It could be very useful for you to have a look at the following sites. LDN won't help adrenal fatigue but because it supports the immune system a lot of symptoms which accompany adrenal fatigue go away.

lowdosenaltrexone.org

ldn.co.uk

ldnresearchtrust.org

ldnaware.org

[waveylines]

Hi everyone,

Thank you so much for all your messages -i will admit i felt a bit down when I posted it -as it seems to have been a never ending long road -and simply the reality of the wish to be well seems so far away these days. I really took heart from all your comments and yes it is really good that just for once I seem to have met a GP who is interested.,,,but the 10minute consultations do lead to very condensed ones! I am sleeping so much at the moment and my system feels so fragile that i don't feel I can put anything else into it at the moment. I think I need to let it rest and hopefully things will subside -they certainly did when this happened a few years ago......this is why i am perhaps joining the dots up too quickly and thinking it is autoimmune -difficult not to really! I have made my mind up that after I have the liver scan done I really want to see a specialist in this field -someone who is 'into' autoimmune and will properly check me out.....so if you know of such a person please email me i would be really grateful. Thanks.

Re LDN -thank you Finola I will most certainly check this out. Anything that will calm things down and pop me on a more even keel would be really welcome

Re gluten -yes taking it out did help me -no doubt about it- but I did not take it out totally that is I was not checking every packet to see if there was any residue. I was on the point of doing that when I thought i need to be checked for Coeliacs properly -this unfortunately meant putting the gluten back in. i am expecting the test result at the end of this week -and also the fasting glucose..

Last night I woke with a terrible burning sensation down the right side of my abdomen below my liver -i did not sleep well but by lunchtime to day it had subsided still there but lurking in the background -thank goodness. I toyed with ringing the GP but worried about wearing out my welcome so didn't! I am as a weak as kitten but tried to do some Christmas shopping and couldn't help noticing how slow I was as I shuffled around some shops I could park close to -everyone was speeding past me!! but it was good to get out in the fresh air away from all my thoughts and worries for a while.

I REALLY really appreciate all your comments and you all sharing your own experiences -a big thank you. Hearing from you all made me feel far less on my own and all the knowledge that you shared reminded me that, as so often is the case on this lovely site, that there are others there who have found ways forward.

I will let you know how I go on. xx