I have five autoimmune disorders including lichen sclerosis

Posted , 6 users are following.

I am 48  I have had lichin since about 40.  I have 5 autoimmune disorders. 1st, find out which other ones you have...you never have just one autoimmune disorder. I have arthritis, hashimitos, fibromayalgia, lichen sclerosis, and intercystial cystitis.

I have a great ob gyn.  I am using clobestesol on the affected areas and got 75% improvement.  Now I have the itching, cant orgasm, redness, bleeding.  Now I am using a compounded testosterone dhea estrogen compound, haven'tgone back to doctor yet but I have more creams then you can imagine.  clobetesol is the best though. I had a hysterectomy 7 years ago. I had two c sections.  I still have sex at least once a week but it is becoming harder and harder. Thank god my husband needs viagra so we are both screwed up  smile.  keep going to doctor.  In US, I probably have better healthcare, it is not socialized and I am government employee with good coverage.  they do as many tests as needed, biopsies, cell scrapes sent to lab.  Her name is Cinde ordelheide, she is a NP, and is the best. She recommended vibrators, she has me on testosterone compound liquid, estrogen compound, clobetesol, and vivelle dot hormone patches.  get your hormones checked too!!

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  • Posted

    Indeed, most of the women I got to know on this site have often more than one autoimmune disorder.  As if we are collectors, mmm (ha)  Not really funny of course. If only some smart scientist could figure out how this actually works or what exactly causes these autoimmine disorders .... a lot of people would be better off.   
    • Posted

      collectors...ha!   I like it!! 

      oh but the theory of autoimmunity is already well known and researched...it arises from intestinal permeability and thats what has to be fixed! The Paleo Mom (herself a research scientist) has repaired a laundry list of her own conditions. One included Lichen Planus as far as i remember. Done finished fixed better!

    • Posted

      It should be such that whatever knowledge is used can be useful to all.

      That would be 'exceptional'.

    • Posted

      Not sure I understand your point above?

      ...but she's written a book and has a web site so is really very accessible if that's what you mean?

    • Posted

      Perhaps it is better to say:  I hope 'getting-well' knowledge will soon become mainstream.
    • Posted

      ok good lingo disguise technique! well probably it'll be we ourselves who'll work it out and 'take control'... not in the interest of others truely to do that....only us!
    • Posted

      are you doing your own research? have you checked out any websites of interest?
    • Posted

      I think I'm lucky to have the guidance I have.  I discuss any findings with my naturepath or/and family physician.  Which has brought me to this point.

      There was a time that I researched to the hills. I grew tired of that.  Now it is more accidental discoveries and this website has helped me greatly.

    • Posted

      I should add: if only to affirm that I'm sort of on the right track.
    • Posted

      Think you're very much on the right track...and yes lucky to have acess to good advice but you did seek it out...which led to finding it...so you've got good instincts too.

      am sure you'll be taking whatever next steps suit you at the right time for you. sorry i haven't been of much help! but best wishes

    • Posted

      I think we're pretty much on the same track.  Do you have a good doctor to turn to?

       

    • Posted

      Thanks hanny...yes not bad. I have consulted a naturopath in the past she was very good infact her advice was invaluable but i neglected to keep it up...just having flax oil daily. Big mistake I made to neglect that and to let a good diet slide. My GP is supportive and lets me have the tests I seek. Think this is prob in exchange for me saying I'll get the dessicated hormone myself (if I do decide to go for it)... but should i get some adrenal support too...not keen on idea of hydrocortisone!
    • Posted

      As far as the adrenal glands - have you done the saliva test?  I think it's better to first find out whether there is an imbalance between thyroid and adrenals.  Do you see symptoms that the synthetic thyroid meds are giving you side affects?
    • Posted

      Thanks hanny. absolutely thats what i need to know so GP has referred me to an endo (endocrinologist)   ...i'll prob have to do some sort of battle as he's conventional...but am asking for iodine levels...via urine test, thyroid anti-bodies and Ig via blood tests I think, then progesterone via saliva and can they check my oestrogen by saliva too?

      I may be oestrogen dominant? do you know if you were? will also try to get a prescription for NDT ..the desiccated thyroid...but aware that stimulating the thyroid and increasing my metabolic rate could strain the adrenals...so adjustments going to be needed if i take that route...so instead i may just try supplementation and diet techniques. i've got plenty of levothyroxin but am taking care to have that with food and to try not to depend on it. xx you ok? there's a great load of thyroid info at the mo with shaun croxton of underground wellness and i've just registered for a de-tox programme with sara gottfried...excited about that!

    • Posted

      Hi Marey--My understanding is that levothyroxin needs to be taken without food or it may impair absorption.  Is there some advice you've been given that says otherwise?  Also, have you been following the estogen cream discussion?  That might be a good place to explore some of the hormone questions, too!  --Suzanne
    • Posted

      hi suzanne.......yes i heard that about levo from conventional sources...so i'm kinda doing the opposite for two reasons...one to protect myself from the impact of a synthetic product in my system....and two to protect the gut lining as i've heard levo can cause damage in the long term...so just wanting to have something else in the gut at the same time to help reduce any neg impact...if that makes sense...not so worried about maximising uptake. taking minimum dose did lower my TSH  so am confident i can fix that aspect...now wanting to play around with supplements to try to get off thyroxin altogether...whilst exploring NDT in the interim possibly...yes follwing your other discussion with much interest and just contributed...see you over there...so great to have you back!  
    • Posted

      Thanks for the reply, Marey.  Yes, it would be good to figure out how to normalize thyroid naturally.  Have you had any positive tests for thyroid antibodies?  My understanding is that the antibodies in Hashimoto's, for example, may permanently damage some of the thyroid functioning (I think that's where I am), but if straightforward low thyroid, natural tx can be very helpful.
    • Posted

      NDT...Natural Dessicated Thyroid? That's what you would recommend?

      I know you've been encouraging me to get the antibody test done...thank you. The brain fog has been a real barrier.

      I had a second set of tests done (the first was around the time i joined the site)...didn't appreciate the limitations placed on my GP (if i did remember earlier to ask him for antibody tests in the 2nd round...but we've been working through slowly the things that came up then and I think there was quite a lot of info in those blood results ...which terri had a look at).

      As far as I remember testing protocols are the same whether you go private or remain in the public system. For example I made enquires with a paleo stlyed GP operating privately but he requires patients to come armed with the tests....I think you have to go to the same labs used by the NHS but you pay privately for the priviledge and he can't help til you've got those results and won't even see you til you have them..so I might as well organise the tests and obtain the standard observations before looking further afield.

      So I went back to the GP again..saw a locum..and am being referred to an endocrinologist to org the iodine test plus antibodies and Ig....and i can ask for a prescription for NDT...it may be poss.

    • Posted

      NDT is great.  I like that better, but I have to do the levo (a t4) and cytomel (a t3) together because I am allergic to pork (which the NDT is derived from).  What I meant in my earlier post to you about this is that there are natural measures people can do if they don't have the permanent damage that antibodies can create--they can often raise their low thyroid through diet and lifestyle measures, like the iodine that you are looking into.  But if we've had antibodies, I've heard that we may have to keep helping the thyroid with replacement hormone because it's been damaged.  
    • Posted

      Unfortunately I have had the Radioactive Iodine and that is irreversible. Earlier on in this 'voyage' I have tried with the help of another naturepath to try to reactivate what was left of the thyroid, but to no avail.  I learned then that when this kind of damage is done there is no way back.  (Many people have unfortunately gone through the same) (only good for the company who makes synthroid and other) 

      I was allergic to the 'only medication available' at the time and was then desensitised.  Let's say that thirty years ago there was not the same knowledge about how to treat thyroid problems, other than in the most brutal way: destroy.  (I had Graves)  The patient was made to believe that this was very precise treatment.  Now I'm hypo.  And feeling much much better with dessicated meds. I'm happy to hear Suzanne that you are using a combo that includes the much needed T3. 

    • Posted

      Hi Hanny--So sorry to hear that they zapped your thyroid.  I think they still like to do that for Graves, don't they? Now you absolutely have to be dependent on thryoid that you'd rather not have to need.   

      I'm curious to hear that you were desensitized to the dessicated meds. I'd like to look into that because I would rather take that then the synthetics.  

      --Suzanne

    • Posted

      Hi Suzanne,

      Adding to my story - I was desensetized to the medication I had to use at the time.  (not the dessicated, which I started to use much later)  Perhaps it is possible to be desensetized to the dessicated meds, which would benefit your being allergic to pork.  However, if the cytomel helps you sufficiently, would you really wish to do this.  Desensetizing to me also means something like - forcing the body to accept something that it really doesn't like.  And then I have to think - is the body telling you something you should take into account. Just a thought.

    • Posted

      Excellent point, Hanny!  I think that you are very wise about this.  I would like to be on a natural thyroid medication, but why force it when I'm doing pretty well (and heaven knows it took a while to get the right combo and dosages adjusted correctly)!
    • Posted

      When your balance is right - celebrate!  And be grateful.  That's how I feel about this thyroid balance business.  It's an inmense struggle before many of us 'thyroid people' come to this point. Indeed. 
    • Posted

      Marey, the added T3 bonus one receives by using dessicated meds is that a big part of the brainfog disappears.  Well worth it, I would say.
    • Posted

      Marey I am just about to inbox you a video about fixing your thyroid smile
    • Posted

      i see! thank you...just rediscovered this dialogue. thank you so much for your input!... re: you. there are bovine sources of NDT.

      kellie has sent me alan chritiansen's video...its really clear. i had seen it before but now i'm paying better attention to the nutrients that can intervene to  address deficiency ...and i'm going to go back to basics. i am so grateful to you all. hello kellie wellie xxxxxx

    • Posted

      i absolutely loved this video....thank you so much. i had seen it before....glad we're moving in some of the same circles....but this time i took notes and so am going to double check i'm taking enough of these various nutrients.

      hey this could actually apply to me................!! thank you again! i hope it will help others too. love marey x

    • Posted

      Would love to see the video.  Can you pm the link to me?  Thanks!

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