insidious

[Alley27]

Why insidious? Well. I have AIH/PBC overlap with Hashimotos disease (untreated) and 6 weeks ago I had a DEXA bone scan. I have the results back and I am not impressed folks; not at all. It says there is evidence of osteopenia. This is not osteoporosis but it means I could develop it. When I saw the letter my thoughts were that I now need to look this word up and see what it means, and if you just google osteopenia, you get all kinds of answers until you google osteopenia and autoimmune disease; then you get a set of completely different answers, and if you are a person who has one or two autoimmune diseases, the links become so blatantly obvious.

It says that osteopenia is a complication of autoimmune disease and if you have more than one autoimmune disease then you are more susceptible to this condition. Also one of the first, if not, the first connection that comes up on the list is Hashimotos disease...well yeha! whoe'd have thunk it.

I am still adamant that if my hashimotos disease was treated when it started which was 26 years ago after the birth of my second son, then I would not be in the situation I am now. My first thyroid nodule was discovered in 1989, and i had all the symptoms which over the years had worsened rather than improved. I was given all kinds of medications for all kinds of symptoms and they never once thought about treating the underlying problem (thyroid) nor did they positively say I had hashimotos disease; all they said was we need to wait and see. After years of badgering them to actually listen to me; in January 2012 I finally got a diagnosis of hashimotos, then in March 2012 I became very ill and spent 6 weeks in hospital to find out I had AIH/PBC overlap and yes research proves that they are directly linked...and now osteopenia, again related.

I am so fed up and wonder what is going to be under attack next; talk about stressed out. Autoimmune disease is seriously insidious. The next problem will be to make the consultant understand that it is autoimmune so folks am going armed to the teeth with clinical studies and proven links....

I am going to do further research regarding the links betwen everything autoimmune...positive note here, I am on a steroid reduction, and currently on 2mg per day and hoping I can drop these because with challenged bones we don't need to stress them more with steroids.

I will let you know what the results from seeing my consultant is but oh the fun and games I will have trying to get it sorted properly.

Take care x

[Junolee]

Well hello there. Welcome to my world I have osteoporosis as well as PBC/AIH. Now, wait for it..... After my CA125 is raised during routine bloods I go for a serious of ultra sounds, CT, MRI they now think I have endometriosis. Scheduled for laparoscopy in early October. Yes, I believe they are all connected and possibly hormone related. Anyway, here's the thing obviously as we are being monitored they are more likely to find things out, maybe we are lucky. Once you can tolerate the meds and you are one of the lucky ones that they work for these things can be treated/ managed. It's wonderful they have found out about your possible osteopenia so soon because it's possible to reverse it. Already with me after medication for two years the osteoporosis in my spine is reversing. This is a disease they can do something about!! I do undrerstand your frustration and yes I have the odd bad day when I feel I am falling apart and wonder what is next but eventually (as we go through the grieving process) there is a certain amount of trading off and acceptance and a new found joy of life. Stress is not good, hang on in there it gets better x

[Alley27 in reply to Junolee]

Hi junolee, it's so funny you should mention endometriosis; and to be honest I have not thought about this in a very long time nor the possible link. In 1994 I had a hysterectomy because of endometriosis, I had just had my youngest son but I did not even know I was pregnant until I was 6 months because of how the endometriosis was. I was aged 30. I had not even considered the link until now.....this means more research for me but I will get to the bottom of it all.

I feel that genetics do play a part, also where we live. I lived in a place where just 10 yards away there were lots of those huge pylons, there was also a very busy road that was used by artic lorry's and other heavy transport so pollution as well.

It's a fact that our food is laden with all kinds of chemicals and false genetic make up so we don't really know what we are eating any more.

There could be a million different opinions as to why but also a million reasons as well.

Take care x

[Junolee in reply to Alley27]

That's mad! Just goes to show you. Keep us updated. I tell you how I'm getting on after Oct x

[GrittyReads in reply to Junolee]

Hi Junolee,

Have you checked out the Endometriosis site here on 'Health Unlocked'?

If not. I suggest having a look, and especially check out the posts by 'Lindle'. I'm not sure if she is one of their advisors, but there isn't much she doesn't know about Endo. In particular, she can recommend the best Endo Centres, and consultants (all pm'd) as so many women in the UK seem to get sent to non-endo specialists = ordinary gynaes, and are only given basic laps when they need more radical surgery to remove deep endo.

I don't know if she covers Ireland, but I bet she will know useful leads.

I've been following her, as although I'm post-menopause - and my endo was only ever mild - I am concerned that my symptoms are coming back, now that my mirena coil is past its sell-by.

Take care,

Gritty

[Junolee in reply to GrittyReads]

Thanks so much Gritty. Did start reading through some posts there recently but got distracted. Will go back in over the weekend. It seems I'm mild enough in that I've had no real symptoms until recently but then I had to turn yellow before I realised about the PBC :). All the connections certainly are interesting. Chat soon.

[kauthement in reply to Junolee]

I also had endometriosis when I was 19 years old and had a full hysterectomy, I'am now 50 years old. Interesting if there is a link to that and autoimmune diseases.

[Junolee in reply to kauthement]

Thanks Kauthement. It's very interesting. Good to hear from others. Will definitely check out more.

[GillianB]

I have PBC & Crohn's disease both are auto immune problems and I have always been advised that in the future both carry the higher risk of developing osteoporosis

I have difficulty tolerating calcium as every time i take it i end up with severe stomach/bowel pain. The best i can do is eat as healthy as i can.

There is an ongoing japanese study showing a link with a gene problem. The same gene fault for PBC & Crohn's.

Best of luck on your challenging quest.

[butterflyEi]

What can one say but fight the good fight conniefused, you sound as if you are equal to the challenge but it is frustrating that it takes so long for someone to make the connection even with all the pushing.

Best wishes to you in your battle

[cazer]

Hi I too was classed as having osteoporosis..next step on from osteopenia.l had bone thickeners for it and they was back within normal limits due this vit supplements where I wasn't absorbing anything much and age which changes your level you are supposed to be .ot is vs frustrating when you're trying to get a message across to comsultamts and they take no notice...jowever at least you've found out now and it can be treated as far as I know.good luck with getting correct treatment I'm sire you'll be fine. Best wishes cazer.

[Gentmark]

conniefused, I was diagnosed with osteopenia three years ago, and now PBC in June. I had a liver biopsy on Monday and am waiting for the results. I have felt unwell for a long time and have been on this frustrating journey to figure out what is wrong with me. I am curious about how your thyroid was tested. My doctor tested my tsh and said it was in the normal range. I've been told you need to have T3 and T4 checked to really know if you have a thyroid problem. Do you know what tests they did for your thyroid? Also, how did they find the thyroid nodule? I know my grandma had her thyroid removed (I don't know why) and now my mom is on thyroid medication.

Sometimes I just feel like giving up. I feel like my PCP thinks I am a hypochondriac. I also have DDD, bulging disc, IBS...but they never connect anything together.They treat everything like it is separate from each other.

I hope you can find answers.

[Alley27 in reply to Gentmark]

Hi Gentmark re the nodules; I went to see my Gp because I felt I had a lump in my throat, he examined me and sent me for an ultrasound on my throat and they found a nodule. I have a lump now that you can feel and see. The tests they did for my thyroid were TSH, T3, T4, reverse T3 and they also tested me for the TPO and TGAb antibodies which are the ones that are present with hashimotos disease. I understand what you mean when you say you feel like a hypochondriac because that is exactly how I felt. It was only when they sent me to see and ENT consultant that my hashimotos was found out. He did a fine needle aspiration and the fluid they took from my thyroid nodule was full of antibodies. This was January and in March I ended up in hospital very unwell and that's when I got the diagnosis of AIH/PBC overlap.

They never connect anything and this is why we suffer so much and have to fight so hard to make them realise the connection. In fact if you google osteopenia and autoimmune disease one of the fist things that comes up is the link to autoimmune thyroid disease (hashimotos).

Hold in there, it does get easier and if you are positive for AIH as well there is plenty of support on this site, I would have been lost if I had not found this. At first I was afraid but 3 years in except for this last surprise lol, I am relatively ok. I am well today and I don't think about the days I am not. I exercise and sleep when my body says I have to and I know my limits. Its very frustrating when you find you can't do everything you used to but over time and with some life changes you adapt.

I have the odd day when I feel I am falling apart but with a good sense of humour you get passed it lol.

I hope you find the answers you need, there's nothing worse than feeling like crap and not understanding why; with no one giving you the answers you need.

Take care and keep on at them. xx

[Zelda5]

I have Hashi's, Endo/ Adenomysois, and a +AMA-M2 marker and from what I understand is that many believe Endo to be autoimmune in nature too, but I don't think there's a correlating antibody they can test for humrep.oxfordjournals.org/c....

Low vitamin D may factor into having bone disease too and many with autoimmune diseases are low. Keep pushing or maybe find another Dr. I had to pretty much diagnose myself with hyperparathyroid last year and it was the elevated blood calcium that popped up on one of my test that they actually had called and told me was normal. I researched it and found a correlation between that and my high B.P. Now, I make sure to get copies of my blood tests. If I hadn't had that surgery to remove it, I would still be suffering from bone pain and high blood pressure. I would definitely push the issue too and they can do something to slow it down from progressing, and also have you had your Vit D levels tested? Hope you get it sorted out and best of luck to you!