feeling frustrated

oh no shari....thats so difficult.

did she at least concede that the tests would be helpful? did she know what they were? mine told me there was no free T3  OR Reverse T3  !! hmmmmm

And that sucks ... pardon my French.  Shari, if it is any consolation - you can follow the discussion here and try some things out.  You know you have LS.  You already got a prescription for the globetasol.  One down. After that you actually won't need the help of a doctor anymore.  They won't know anything else anyway.  Read or listen to Dr. Goldstein's on 'lichensclerosustreatment' and you know what to do.  That's another.  Try to read on this forum about food habits - one of them being: no sugar. 

There is also info on the thyroid.  Take the tests you can get within your insurance. TSH test will be sufficient for now.  At least you will know the level of your thyroid for now.  The fine tuning can be done later.  Ask for the number your thyroid is showing and any explanation the doctor is willing to give you.  Furthermore, it will also help to avoid caffeine and alcohol. (for the thyroid)  Do some more reading on the food intake.  It might also help you to go gluten free.  There is a lot a person can do on his/her own. 

By the way - where do you live?

Wishing you well.  Please try to avoid getting stressed out over the medical world.  They're stuck with the rules insurance companies are making. 

All of us on this forum can be here for you and tell about our experiences.  Some of the things that are mentioned here may benefit you as well. 

One question I forgot to ask:  Do you know the frequency of the use of globetasol.  Did the doctor at least inform you on that? 

Interesting, yesterday when I saw my gynae she seemed to accept an area of white as 'not active' – no fissure was her bar. Hanny's right, I think. We only need the doctors to check for pre-cancerous cells every six months.

I asked her about gluten and we got talking about alternative stuff. She said celiac disease can be symptom-free, you have to be tested to see if you have it. That would be the only reason to go off gluten. Having been through all sorts of food sensitivity diet stuff when my kids were small I can say from experience that there's a point where worrying about every molecule you eat (which you have to do if you're avoiding gluten) is a big fat stressor, counter-productive in my view.

Hi Morrell,

I can testify that the gluten free diet has made a world of difference for me.  After years of thyroid medication, that are agitating your intestines, my bowels had had it.  Now with the gluten-free diet, plus the use of Colostrum my intestines behave normal again and are better able to absorb the nutrients out of the food I eat. 

Too often we forget that our poor intestines have to cope with all the medication we have been taking over the years. As well as anti-biotics during and after every surgery.   I believe that the well functioning in that department will reflect on the rest of the body.   

Hi Shari,  Living in Oregon also, I totally understand.  I do pay an incredible amount for insurance and also I don't like our health care system.  I agree that you may not need a lot of extra help with the LS, but the thyroid may be a different story.  What kinds of thyroid symptoms are you having?  I also have the white skin issues with LS (but no tears currently) and I hope that this is not considered as good as it gets.  The vulval skin is not normal and doesn't stretch normally and feels irritated a lot.  I'm hoping for pink skin, too.  White skin is not normal skin.  For what it's worth, I also think that it's a good idea to get tested for Celiac disease, just because only one in 10 ever gets diagnosed and everyone should probably be tested (automatic I hear in Italy in Kindergarten).  If we have autoimmune or thyroid issues, it's especially important to get tested. Also, there is the issue they now know called "non-celiac gluten intolerence" where the gluten problems are manifested in places in the body outside the gut (like the joints). I am trying the autoimmune paleo diet just to try to quiet my various autoimmune overreactivity.  It is a grain-free diet, and I do feel better. I think that experimenting in various ways would be worth it if it pays off in better health. If it were just LS and I didn't care about sex anymore, I might not feel like it's worth the sacrifice, but it's not only LS for me, but Hashimoto's, Celiac, and a number of autoimmune antibodies related to Lupus and Schleroderma (which I'd like to prevent from manifesting fully).  So, not eating my favorite foods for awhile may be worth the trade.  Only we as individuals can make that assessment for ourselves. I hope that if your TSH comes back normal but you still have thyroid symptoms that you persist in getting tested.  Good luck to you!  --Suzanne