1. Community
  2. Women's health
  3. Lichen Sclerosus

Just had this a year or so--are the changes likely permanent?

Posted , 8 users are following.

suzanne00
suzanne00

So pleased to have found your site.  I would welcome input as I'm a bit lost with this.  My symptoms clearly indicate a clinical diagnosis, but my OB-GYN's won't officially diagnose and treat without a biopsy (I'm in the USA where that seems to be standard tx, likely to avoid liability issues).  I don't want a biopsy because I have medication and lidocaine allergies, and that tissue is already thin and uncomfortable.  I have been using over the counter cortisone cream the last few weeks since my doctors think that this is what I have.  I have several autoimmune issues (e.g., Hashimoto's, Celiac, and multiple autoantibodies present, inc. anti-Smith, anti-centrome, etc.).  I am newly post-menopausal and have been on bioidentical creams, including estrogen for a few years. The greatest issue for me is sex.  About a year ago it suddenly became uncomfortable (though I was unaware that this was my likely diagnosis until recently) and initially doctors thought it was menopause.  Now, in spite of adequate estrogen, sex is uncomfortable to almost impossible due to vaginal narrowing and thin skin that tears easily.  My question is whether this will likely improve if I can move this into remission.  How could so many changes have occurred unnoticed until this year and suddenly affect me possibly permanently?  I am really worried about not being able to function in this arena which is so important in my relationship.  Have others had any similar experiences?

1 like, 108 replies

108 Replies

Prev Next
  • Morrell1951
    Morrell1951 suzanne00

    Posted

    Marey's one of our alternative pioneers. In patient UK there's a thread devoted to alternative treatments of LS.

    My experience and understanding tell me that I don't have time to stop the clobetasol and experiment with diets and supplements. The damage can happen too fast. The meds aren't a compromise or the easy way, just meant to make us feel better now. Tthey're (as you'll read in the decription of LS under doctors on this site) possibly helping prevent squamous cell carcimoma of the vulva, they're now not thought to thin the skin, and they keep inflammation from getting out of hand, which happens in hours. I eat chocolate cake and the next morning it's ring of fire.

    Also, psoriasis is as much an auto-immune disorder as LS and my current healthy diet and low stress level have my psoriasis 100% clear. It hasn't stopped the LS. This is my reason for not going alternative. I did that when I ran from the steroids for psoriasis and went to a Chinese doctor weekly for over a year. It was during that period that the worst fusing happened.

    It's complicated.

    • marey
      marey Morrell1951

      Posted

      major....computer going slow.

      Do you know your TSH?

    • Morrell1951
      Morrell1951 marey

      Posted

      I have no reason to know it. I looked up Hashimoto's and I don't have any symptoms. I'm completely healthy except for LS.

      • Fatigue and sluggishness

      • Increased sensitivity to cold

      • Constipation

      • Pale, dry skin

      • A puffy face

      • Hoarse voice

      • Unexplained weight gain — occurring infrequently and rarely exceeding 10 to 20 pounds, most of which is fluid

      • Muscle aches, tenderness and stiffness, especially in your shoulders and hips

      • Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet

      • Muscle weakness, especially in your lower extremities

      • Excessive or prolonged menstrual bleeding (menorrhagia)

      • Depression

      My youngest sister had hypothyroidism quite young and wound up in a real mess, schizophrenic when off meds, died of an aneurism at 52, probably addicted to various drugs due to bipolar disporder. That was my first exposure to thyroid problems.

    • marey
      marey Morrell1951

      Posted

      then there is a genetic prospect and it may be simply hypo or iodine related...but something is causing your LS. 

      At this point I am going to back off as I know its your position that you have the management under control and that that is paramount to you....so i do not want to intefer with that perspective nor to cause you stress!

      love marey xxxxxxxxxxxxxxxxxxxxxxx

    • Morrell1951
      Morrell1951 marey

      Posted

      Thanks Marey. I am not a stubborn, blind patsy of the medical establishment, resistent to alternative ideas. I know there are opaque factors at work. I know there are energy meridians – I have a full shiatsu massage every three or four weeks, which I think keeps me balanced. I really think my decades of anger and too much alcohol, in my twenties and thirties, damaged my liver and who knows what else – my adrenal system.

      I know my mother suffered a very difficult childhood and passed on who knows what in the womb and was who knows how stressed out as a new mother. She has a whole spectrum of problems from IBS through rheumatoid arthritis and heart disease. But she's 87 and reasonably comfortable and active, considering. I don't have a strong opinion about whether she should have explored alternative methods when at age 40 she suddenly couldn't get out of bed she was so seized up. Thirty years of prednisone kept her mobile. Yes, it gave her ulcers and maybe intersticial cystitis. She's a nervous person. That's a given.

      All I'm saying is I don't believe we can just exchange one oft-mistaken over-simplified cause-and-effect system for another.

  • suzanne00
    suzanne00

    Posted

    I'm not sure of the best way to reply everyone who is commenting with wonderful thoughts and suggestions for me, but I'll give it a try.  Thank you, thank you, thank you!  I definitely should have spent a few days reading past posts before asking such newbie questions, but I greatly appreciate everyone being so patient with me!  I will go try and find a doctor who may not require biopsying in order to treat--and quickly since this seems to have progressed rapidly in the last few months that I've been trying to figure out what to do.  I actually did present to practitioners a year ago, but it wasn't until sex became nearly impossible that one practitioner suggested this as a possibility, then another said that she thinks that is what it is.  There is NO question that my symptoms, physical changes visually and sexually, and my health history indicate this as undoubtedly the diagnosis.  Interestingly, I have been pursuing an autoimmune paleo diet for the better part of three years when this came up for me (e.g. Sara Ballantyne's book is one example).  I've even considered, but not yet done, a fecal transplant to repopulate my over-antibiotic medicated gut that could have caused my Celiac Disease, Hashimotos, LS, etc.  I wonder if anyone else has tried or considered this approach to the possible underpinnings to autoimmune disease.  Again, thank you for all of your kind suggestions and I will be pursuing this site to learn more of people's experiences.  I'm not sure what kind of moisturizer to use, for example.  And I didn't describe well the physical symptoms that I have--it's thinning, fragile skin in my inner labia and a significant narrowing of the introitus--this already even though I never noticed a thing until a year ago when sex first started to feel a little different.  I am surprised tht this could occur so quickly with so few other symptoms.  My OB-Gyn says that my vagina looks healthy and normally estrogenated (due to the bioidentical hormones that I am on) but that my vulva is showing thinning as well as the white patches that are commonly seen in LS.  I am shocked at how quickly these changes have occurred--especially the severe narrowing at the entrance of my vagina.  I am aware that there are other ways to have sex but this would be difficult news in my long-standing relationship.  Again, thank you for all of your suggestions.  I am a big fan of alternative and natural treatment after a long history of mainstream medicine making me much worse (e.g. with antibiotics and medicines that I now react to allergically), but I also would like to try a dual approach as I don't want this to progress any further.  You all are great--I'm not aware of a resource that this in the USA--so thank you for including me!  --Suzanne
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      How very interesting that you've done all the right alternative things and still have fast-moving LS. That's parallel to my experience. I don't see why you couldn't use Clobetasol and the estrogen and still do the right stuff for your guts. One girl said (sometime recently here) it's as if our body has decided to heal our 'fun center' over as if it were a wound. We shouldn't assume anything that strange is easily explained by any discipline.
  • marey
    marey suzanne00

    Posted

    I'm back...thanks for further clarification...brilliant that you're 'taking control of your health'. Great that you've found the Paleo dietary template. Quitting grains arrested my symptoms.

    So have you got your TSH down to 1.5 or below?

    • suzanne00
      suzanne00 marey

      Posted

      My TSH is under 1.5 (though my T3 is on the low-normal end and my T4 is always too low, in spite of heavy doses of Synthoid and Cytomel (T4 and T3 supplements).  My thyroid autoantibodies were even normal last test (though other autoantibodies were elevated), so this diet may be helping. My pet theory is that maybe I really don't have the right gut population and while diet/lifestyle helps, if some good bugs that help regulate our immune system are simply not there (due to heavy antibiotic use, poor diet earlier, no breast feeding, etc.), then we may not be able to turn the tide completely (though I am better in significant ways).  Thanks for your thoughts!  --Suzanne
    • marey
      marey suzanne00

      Posted

      may i be directive just for short hand....computer playing up...please forgive my tone therefore if i appear abrupt but you are on to this and it requires patience. your theory is a vital part of your personal journey and complete cure which you can visualise as being in hand and on the way.

      There were consequences to your drug abuse (anti-biotics....I know from your perspective you will tolerate this shorthand!!)

      of course you can turn the tide completely. our bodies are just exhausted. we've been stuffing them full of junk...and the resulting adrenal collapse has followed leading to thyroid issues and LS (my theory...don't you just love exchanging theories!!?). i'm surprisingly tactfully (for me!) educating my GP who has read some of this stuff and is getting it. I'm biding my time for the next step...which is to check my own antibodies AFTER i've decided how to treat hashimotos...so i don't get pushed onto another conveyor belt of symptomatic treatment. I may consider natural hormones...prob be a struggle to get them....i've got a prescription for thyroxin and it lowered my tsh but you are ahead of me in having adjusted your t3...  the active element...so you will be nourishing and resting your thyroid... tho natural thyroid meds such as armour (pref from pig or cow...not horse please ...these animals are tortured for their bio indentical hormones) are supposed to do this better taking care of t1 and t2 as well....but of course the natural hormones cannot be patented. Morrell might pick up on this having observed recently the weaknesses in MD training... many are trying however....resisting the pharmaceutical companies is not easy...but its necessary.so by way of full disclosure as you haven't seen a specialist ....you would be advised by any such specialist, rather too forcefully, to take steroids 'because LS can lead to cancer'.

      i must leave that as a stand alone statement.

      However be your own judge of what perspectives and interests are operating behind such a forceful declaration. Cancer ensues for any number of reasons...one of which is insufficient iodine and undiagnosed hypothyroidism.

      May I ask about the other elevated autoantibodies that you mention ... which were they? I do believe folk here are ok about sharing results. This is really getting somewhere xxxxxxxxxxxxx  

    • Morrell1951
      Morrell1951 marey

      Posted

      Marey, I've been doing my homework on paleo and GF diets. Bottom line is I don't have the symptoms. (The “classical” presentation of NCGS is a combination of IBS-like symptoms, including abdominal pain, bloating, bowel habit abnormalities (either diarrhea or constipation), and systemic manifestations such as “foggy mind”, headache, fatigue, joint and muscle pain, leg or arm numbness, dermatitis (eczema or skin rash), depression, and anemia [2,15].)

      I believe gluten-free is a fad that too many people are putting their kids on when they don't really need it. Many more are self-diagnosing or using it for weight loss.

      Regarding medical scare tactics re: LS and cancer. It's simple. If you have an open wound in your perineum all the time, that right there is an invitation to cancer. It's not that using corticosteroid ointment is touted as a general cancer-preventer. It's that it keeps us from having this gaping wond all the time. It may prevent (nobody's promising) a specivic vulvar squamous cell carcinoma. I'm using the ointment because I would really like to be able to pee when I'm eighty. If it's a plot by Big Pharma, why are doctors so ignorant about LS? Why aren't drug reps littering doctors' offices with pictures of atrophied vulva?

    • suzanne00
      suzanne00 Morrell1951

      Posted

      Hi--My understanding is that the chronic inflammation creates the underpinnings of cancer.  Similarly, constant exposure to gluten puts a Celiac at risk for small bowel cancer, and cigarette smoke creates chronic lung irritation that obviously can lead to cancer.  So there seems to be a definite relationship between chronic inflammation and cancer, which suggests the need to quell the inflammation one way or another to lower the risk (through medication or lifestyle changes or both?). Some people think that diets can be more or less inflammatory and that sticking with old rather than new foods to our DNA can lower inflammatory reactions.  There is some evidence that the more mammals stray from their species appropriate diets, the greater the health consequences--such as e-coli infections in industrially raised cattle that are being given grains rather than their native grass diets.  Since I am having autoimmune issues (and am a Celiac), removing all grains makes some intuitive sense.  I don't think that people without health issues need take such drastic steps, but it can be worth a short experiment if there are autoimmune issues.  Even my last dog had allergies and died of cancer too young.  I am raising my now three year old new dog without grains and supplementing with healthy foods and she is doing great (no allergies or health issues)!  I hope to improve with this diet, too!  Thanks for writing!  --Suzanne
    • suzanne00
      suzanne00 marey

      Posted

      Hi Marey--Thanks for your thoughts.  You and I seem to read the same stuff!  You identified a number of the people that I've been following.  It's a bigger paradigm that gives me hope because traditional medicine helps in some ways but sure hasn't fixed me or provided health to very many people (though really good at broken bones, surgery, and other emergencies!).  I have to look beyond my local physicians who seem limited in their vision of how to create health.  I am not rigid though, and like the idea of integrative medicine.  But, science appeals to me and many of the new findings are beyond what a lot of physicians yet know. Regarding my autoimmune markers, two of them that I remember that are elevated currently are anti-Smith antibodies and anti-centromere antibodies (these can turn into Lupus, Sclerodera, Crest Syndrome) and are considered "predictive autoantibodies."  I would like to stop this from being my future and am comfortable (even if deprived) making any changes that might lead to greater health.  I am getting ready to test other antibodies (neural ones, for example) with some test kits that my practitioner ordered for me through Cyrex Labs.  Thanks for writing! --Suzanne  

       

    • Morrell1951
      Morrell1951 suzanne00

      Posted

      Thanks, Suzanne. Good description of the relationship between inflammation and cancer. I'm not on board with the paleo theory and haven't got any pressing reason to upset the mealtime apple cart at home to mess around with it. My bottom line on inflamation is that my psoriasis is my benchmark and it's clear. So I conclude that LS comes from something more complex than I feel like guessing about.

      My shiatsu therapist is trying a new modality and found something today that she's going to research. "Water toxins." Anybody know what that means in Eastern medicine?

    • marey
      marey Morrell1951

      Posted

      we must all go to bed now....!!

      can't wait to continue x

    • suzanne00
      suzanne00 Morrell1951

      Posted

      I haven't heard about water toxins.  I appreciate your comments.  I imagine that there are many causes for autoimmune illness, including stresses of various kinds.  However, I am intrigued by the idea though that many of these illnesses are "diseases of civlization" and were not commonly found beyond very modern times, so it does raise the question of what we are doing that is currently hurtful to us.  Food is not the only change in recent times--there are many changes and toxins that we are exposed to, but food is something that we are constantly exposed to and that directly supports or harms health. And since it can directly affect the gut microbiome which is intricately involved in our (overactive or misdirected) immune systems, I am hopeful that eating cleanly will give me a fighting chance at health.
    • marey
      marey Morrell1951

      Posted

      i wonder if she is seeking to promote your kidney qi and to help your body to discharge ancient fears?

      I wish you well with this treatment. 

      It goes very deep and is profound. Enjoy!  You have the capacity to be with this energy and can let go of those things that no longer serve you as you shed those tears.

      x

    • marey
      marey suzanne00

      Posted

      magic...thats what we need! something bigger than ourselves.

      I suppose science is in that realm in a way....so whilst de-mystifying some things there's always the next new issue to contend with.

      i love it that you're here. thanks so much for your contribution. i wonder if we have a cyrex lab equivalent in uk? i'm so glad to meet another reader....and to hear about your thyroid success. i would love to hear more. i'm due to start a protocol that a new friend followed thro to cure. so in answer to your original question....i don't accept that LS is permanent. 

      i'm trying to eat clean to detox and to avoid chemicals. i do think its the chemicals that have done me in! addressing this background stuff is part of the healing protocol. 

      what time scale are you in? its midday here now. where are you in the states?

    • marey
      marey Morrell1951

      Posted

      hey....you don't say we agree about something? which aspect of my reply are you in tune with? is it the chinese interpretation? 

      your practioner may have a completely different angle of course. i would be very interested to hear how it goes and as to what s/he thinks about the matter.

      thinking of you x

    • Morrell1951
      Morrell1951 marey

      Posted

      The idea that 'water toxins' is a kidney thing. Shiatsu is Japanese, but this other thing she's studying could be something entirely different. She's a shamanic coach as well.
    • suzanne00
      suzanne00 marey

      Posted

      Thanks, Marey.  Looks like you are eight hours ahead of me (it's now a little after 11am here.  I'm in Oregon on the West Coast).  I'd love to hear about your protocol and hear how it goes.  Good luck!  --Suzanne
    • marey
      marey suzanne00

      Posted

      Thanks...I'll keep you in the loop xx
    • marey
      marey suzanne00

      Posted

      oh oregon my dream place....near the rockies?
    • suzanne00
      suzanne00 marey

      Posted

      Hi Marey--We live in the Willamette Vally between the coast range and the Cascades (which are part of the mountain group that the Rocky's also belong to).  I am 58 years old (just had a birthday) and have been here for a number of years, but I grew up on the opposite coast--in Maryland.  It is beautiful here and the weather is very reasonable a lot of the time (though quite a bit of rain).  Where do you live?
    • marey
      marey Morrell1951

      Posted

      wonder if it could be anything to do with sandra ingerman's transformation of toxic water?

      japanese shiatsu and chinese medecine follow the same principle meridians and are compatible. shiatsu doesn't involve needles and if you're anything like me prefer that!

      I studied with carlo de paoli (who wrote a cook book with rose elliot....as a former vegetarian you would undoubtedly know of her)...the course he offered was in british herbs being used along chinese principles...raising heat, overcoming dryness etc as described by ted kaptchuk. Carlo was, and i hope still is, a chinese medecine and shiatsu practioner, he accepted medically trained people onto the course as well as shiatsu therapists and acupuncturists who predominated.

      I think its absolutely wonderful that you will  experience some shamanic healing....thats so powerful....its great that you're open to these mysteries....can't wait to hear how you get on x

    • marey
      marey suzanne00

      Posted

      hi suzanne...didn't get notice of your reply....sorry for delay.

      was just re-reading some of our exchanges. ....which i think are brilliant and inspired....THANK YOU so much for coming along. you are easing some previously difficult communications. i am really really very grateful.

      HAPPY BIRTHDAY 

      Well you're catching up with me i'm now 60 eeeeeeeeek! but feel 36. having a blast and loving life! the rocky mountains wheeeee sheer beauty. was it always your dream destination?

      i live in wales....in swansea to be precise....its a very small city beside the sea and very green and pleasant. with small hills and wild commons and fields around. i came here to be with the wild horses....from london which i loved but i always wanted to be more rural and to be more involved with horses. it rains qiute a lot here too....keeps things green and the grass growing x

    • marey
      marey suzanne00

      Posted

      what you have said here is very powerful.

      why is LS manifesting so frequently now?.....because its a disease reaction to modern circumstances.....toxins and junk.

      so the cure is easy....well easily indentified.

    • suzanne00
      suzanne00 marey

      Posted

      Hi Marey--Very late here now (almost 2am)!  Listened to few wonderful podcasts tonight--several from Dr. Peter Osborne's summit, and one from someone named Tom Malterre of Whole Life Nutrition, on the Microbiome, which was very incisive and comprehensive on the state of what we know about the bugs that live in us and our comensal relationship with them.  They are everything (almost) to our health!  Exciting stuff!  Thanks for the birthday wishes (was on Sunday)!  Wales sounds beautiful!  I came to Oregon to be with a man that I was married to for many years (though no longer) and had two boys (now ages 22 and almost 18).  I have raised them as a mostly single mom for many years--quite the challenge with a number of health problems (all relating, I think, to my poor gut bug diversity).  I am also a licenced and practicing psychologist and really like what I do.  I am so glad to have found this group.  Ran into problems with two Ob-Gyn's today about getting some medicine without a biopsy.  I will keep at it!  Off to bed.  Thanks for writing!  --Suzanne 
    • suzanne00
      suzanne00 marey

      Posted

      Just looked up your locale--very beautiful in Swansea!  --Suzanne
    • marey
      marey suzanne00

      Posted

      sleep well....my day is just getting going speak later xxxxxxxxxxxxxxxxxxxxxxxxxxxx
    • kellie42169
      kellie42169 marey

      Posted

      I'm with you on this Marey I too do not think LS is permanent and is caused by something in my body that shouldn't be there. I have cut out dairy, gluten, wheat and grains for 3 weeks now, so far so good. I've only had a little itch now and then. I plan on detoxing my body.
    • marey
      marey kellie42169

      Posted

      hey kellie ....that's great!

      i'm fighting this thing and about to follow my mentor's protocol....de-toxing too but first ensuring nutrient density appropriate supplementation and hormone balancing.

      got to get into epsom salt baths every night....groan....so got to force myself to 

      1/ look up epsom salts

      2/ acquire from internet?

      3/ proceed to use.....

      baby steps i think is the term!!

    • suzanne00
      suzanne00 marey

      Posted

      Hi Marey--is this the GAPS protocol that you are using?  I've done that one and it can be very helpful.

       By the way, I just saw my practitioner again this past week and she did diagnose LS w/o a biopsy (yay!) and prescribed the Clobetasol (>05%).  She said no more than would fit on the tip of a toothpick (daily for one month and following up with her before finishing the standard LS treatment).  Is this the amount that everyone uses?  --Suzanne

    • suzanne00
      suzanne00 kellie42169

      Posted

      Hi Kellie, I agree and plan to keep working to find out how to be healthy!  Diet can be a big piece of what we can control.  --Suzanne
    • marey
      marey suzanne00

      Posted

      hi suzanne

      its not GAPS no..but was so pleased to discover it...all that yummy cream!! and full fat with confidence. 

      Its a protocol that a new friend has devised

      xxxxxxxxxxxxxxxxxxxxxxxxxx

    • marey
      marey suzanne00

      Posted

      i'm glad you got a diagnosis without a biopsy...thats appropriate...but sorry you've joined the club.

      those are familiar instructions....!

      personally i don't touch steroids....

      there is a woman on here who was cured from a course of steroids....i questioned her if you 'd like to check through the LS history....she's the only one i know of who healed so it changes things...everyone else has found their own way using non-conventional methods. I say this to give you confidence but also for balance...whichever way you decide to go x

       

    • wendy14679
      wendy14679 suzanne00

      Posted

      No!  That just would not be big enough.  I was told pea-size, which probably would not fit onto the tip of a toothpick!
    • suzanne00
      suzanne00 marey

      Posted

      Hi Marey--I almost always steer clear of conventional medicine these days, so I really like the idea of healing from this without steroids.  I'm open to any reasonable options.  Since I am pursuing an autoimmune paleo diet (and considering a fecal transplant to restore my microbiome after Celiac disease and antibiotics in the past), I am working hard to clear of autoimmune disorders.  The thing that scares me about LS is developing permanent changes. I'm really hoping to slow that process with the steroids while I put my health issues into remission more naturally (and before the permanent changes).   --Suzanne
    • marey
      marey suzanne00

      Posted

      my friend wants to get the book out asap and is totally frustrated that it hasn't been published due to this or that delay. i really think the protocol would suit you and that you'd manage the committment.

      as soon as i'm at liberty to, i'll start a blog of how i'm doing.....as one of our number suggested...and would love for others to follow along using the book.

      the starting point is one of otherwise good health....but you have got such a good handle on your conditions that the protocol can only help you. may i ask as to how you are generally? eg do you still have blood in your stools and diaorrhea?

      what meds were recommended for your chrohns...and do you take them? 

      lets have the full list of all your autoimmunity!!

    • suzanne00
      suzanne00 marey

      Posted

      Hi Marey--I'd love the book, and a blog on your progress.  I have Celiac disease (not Chrohn's), so not eating gluten is essential for me to prevent the problems that I had as a child up until age 35 when I finally was able to figure out what it was (though I'd had two complete GI work-ups--no one had thought to biopsy).  Stopping gluten stopped the terrible diarrhea, vitamin/mineral deficiencies, chronic fever of unknown origin, unbelievable insomnia, etc. I'm now 58, but have had Hashimoto's (thyroid antibodies--better now on this diet), LS now, and also currently have antibodies associated with Lupus and Scleroderma (CREST sydrome) (although I don't yet manifest these syndromes) as well as Celiac.  I also have allergies and multiple food allergies/sensitivities (and some chemical sensitivities). I am actually quite a bit better on this diet--a lot of the acute symptoms are better (hives, brain fog, etc.), but symptoms return if I try to expand my diet. That's why I wonder if I'd improve further with a better microbiome in my gut, since most of the immune system is located in the gut and autoimmunity is now believed to be due to that issue.  Anyway, I'll wait to hear more about your diet soon, I hope!  Good luck!  
    • marey
      marey suzanne00

      Posted

      thanks for the correction...tho would IBD cover it? looks like you're addressing the inflammation you have. I can't remember the distinction between chrohns and coeliac but so glad you're paying full attention and keeping ahead of those other markers...biopsy may have returned a negative result at the time...if thats any consolation...its usually positive only in the late stages.

      you were right to listen to your instincts and to keep up with modern tests and in particular to suspect gluten and/or the other major inflammatory agents like GMO's; corn etc. 

      so now you have a good regime of supplementation?

       

    • kellie42169
      kellie42169 marey

      Posted

      Thats great news too. I started with a colon cleanse using pysllium husk for 3 weeks. Now I'm using diatomaceus earth for any parasites I may have plus it has lots of other benefits. I started using borax today for candida I'm trying to heal a leaky gut. Then will detox my kidneys and liver. I was going to buy epsom salt but got magnesium chloride flakes instead and made my own magnesium oil as it is supposed to be better absorbed transdermally, i put this on every night before bed and some nights will aslo do foot soaks. 1 week in and the brain fog has gone already, also not fatigued either. I've been thinking i have a low thyroid but being the UK they only tested TSH and T4 so maybe i could be.
    • kellie42169
      kellie42169 suzanne00

      Posted

      Totally agree Suzanne, so i'm healing a leaky gut i think i've had for a while.
    • suzanne00
      suzanne00 marey

      Posted

      Having had severe nutritional deficiencies due to Celiac, poor diet, etc., I am now a firm believer that I need a nutrient dense clean diet with supplements (I don't absorb as well as others, have had deficiencies--probably missing some of the helpful microbes that assist in digesting).  I now take a really comprehensive multi-vitamin, fish oil, probiotics, extra zinc, calcium/magnesium, and others at times such as Co-Q-10, alpha lipoic acid, vit E, astaxanthin, vit K2, etc.  I also eat natural sauerkraut for the probiotics, and liver for the vitamins.  How about you?
    • suzanne00
      suzanne00 kellie42169

      Posted

      Sounds like you are working hard to heal, Kellie!  Yes, T3 and Reverse T3 would be good to get, as well as the antibody tests. Can you ask for that in the UK?  --Suzanne
    • kellie42169
      kellie42169 suzanne00

      Posted

      They only really check for Tsh and T4 in the UK. My TSH was 1.17 and my Ft4 was 13.8 so both in range I will go back and ask for thyroid antibodies and f3 doesn't mean they will do it though. Just recently had loads of blood tests done as i've had symptoms of low thyroid but the doctor wasn't convinced and thought it was B12 and iron but B12 come back as 1000. 
    • suzanne00
      suzanne00 kellie42169

      Posted

      I hope that they can test for those.  It's perplexing to not feel well and not know why! 
    • marey
      marey suzanne00

      Posted

      thanks for the question suzanne...i need challenging!!

      well.......i went out and bought all of those....but often i just sit and look at them!! am not ....hang on..self correction due here....i used not to be very good at taking tablets.....but from today 'i'm excellent at it'!!!!!!

      i used to take vit c and co Q10....absolutely brilliant stuff so energising ...but finances didn't encourage that then, so i didn't keep up...i may not have been ill tho if i had continued. so i'm getting back into it...just lots of resistance.

      got the sauerkraut, offal, krill oil, homemade coconut kefir, bone broth, turmeric.........agree ALA and the vits....especially vit d together with k2....

      I think you'll be healed before me! you are doing absolutely great!! I am scheduling a full year for healing and relaxing into it. x

    • marey
      marey kellie42169

      Posted

      have you read datis kharrazian....why have i still got symptoms? the maxim woman has done a very good summary....box diagram...if you google maxim ?method?  think you'll find extremely helpful...if you can bear to listen to her!
    • marey
      marey kellie42169

      Posted

      sounds like you're doing really great kellie...you may just have kick started your thyroid if it was dampened down.

      great idea about the magnesium..we don't seem to be able to get enough. I 'm proposing to start the epsom salt baths as its another mechanism to detox...apparently much can be excreted that way...well our skin is another excretory organ. i used pysillum husks many years ago too...was thinking about enemas but may not be necessary. 

      brilliant that you've ousted the brain fog! really brilliant...well done! so liver and kidney flushes...lets think ...cornsilk...what else...see i've still got the brain fog!!

      but you are putting in the nutrient dense foods aren't you? so you don't crash....which you won't....you'll get all the vits and minerals you need won't you? anyway for now have a lovely cleanse. cleansing and fasting can go on for long periods... am so delighted that we are now 3 doing this however differently!  

    • marey
      marey suzanne00

      Posted

      oh ...have you tried digestive enzymes? these often help with low thyroid ....but might also help you? betaine was one i remember being recommended. i ve got a version by quest in uk.
    • suzanne00
      suzanne00 marey

      Posted

      Yes, I've got some betaine and have used it ONCE recently--need to use it consistently!  Tired too of the pills!  That's probably an important one!
    • suzanne00
      suzanne00 marey

      Posted

      I think that I have this book (I have a number of them that are good).  Will search for it!
    • suzanne00
      suzanne00 marey

      Posted

      Yes, Marey!  Bone broth is a daily event around here, as is 6,000 iu's of Vit. D, etc.  Sounds like we are tuned to the same networks!  All these things do seem to be helping a lot!  We'll get there!
    • marey
      marey suzanne00

      Posted

      see how you go with it....you might be able to cut down/prioritise others as a result ....but prob they're all important. its ok to admit to flagging isn't it....? but i'm encouraged by the two of you. lets keep at it x
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.