First, thanks to RedApple for posting a link to a study on LS a few months ago. Don't know if this link will show up or not - healthunlocked.com/thyroidu... (Also good information from a link from @humanbean in the replies). I did a search to see if there have been conversations around this condition and its relationship to thyroid disease, and no a whole lot came up.
I am writing this post to see if others here have also been dx with this condition. It took a year and a half to get this diagnosis (much quicker than my thyroid diagnosis!) but what I am wondering is just how "rare" is this? In the past three years I have two other friends that had received dx of LS (and they both have issues with thyroid, too). I don't have a huge circle of friends, btw. Is it really rare, or like the article Red Apple posted, is it just undiagnosed/misdiagnosed?
I am curious about all the interaction of autoimmune and what I can do to help keep myself healthy. I know I am much more healthy since 2021 - getting my thyroid levels in a good place for me, along with other vitamins/mineral, reducing inflammation by going gluten free/dairy light, walking, increasing my water intake, losing 80 pounds...
Doing all this good work for myself, and then "poof" another AI popped up. It makes me concerned about other AI diseases like RA.
Any advice from the group about tending to health to keep the AI monster away and anyone else with LS around here?
Thanks.
[ Edited by admin to convert name to a working mention/callout. ]
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My Mum has suffered for years and at 86 is getting frustrated (with the complete lack of urgency or escalation in treating her discomfort). I always thought the autoimmune came down my Dad’s side but I’m starting to think she may also have always had Hashimoto’s or Graves (she could have doubled for Maggie Smith).
I have LS there are a few others on the forum that have it too. But I don't have an actual thyroid diagnosis; I was prescribed Levothyoxine in 2022 after a partial thyroidectomy for a suspicious lump but no diagnosis of hypothyroidism yet?! For some reason I can't get any consultant that I've seen to confirm a diagnosis, all I get is 'possibly' I've never had raised thyroid antibodies but did have an iodine deficiency.
Currently being investigated for other problems that happen to be autoimmune. I believe that I'd had Lichen Sclerosus for many years before I realised what was wrong and it was diagnosed at a GP appointment.
Sorry I can't offer any advice but hopefully others will reply to you.
There’s a blog post on Carla Coulsons website where she details how she healed naturally from Graves disease and Lichen Sclerosis if you are able to find that. I hadn’t actually heard of it until finding her post early in my journey with Graves! It’s wonderfully comprehensive. I hope this helps. Best of luck with your healing.
Updated to include links (finally)! Second post has the most details:
I have LS, also diabetes type 2, hypothyroidism and pernicious anaemia. It seems that some experts think LS is an autoimmune condition and others say it is not. Type 2 diabetes is not autoimmune but type 1 is. Hashimotos is autoimmune but hypothyroidism isn't, pernicious anaemia is auto immune. I suspect I have had LS for a longer time than I thought, as it seemed to come gradually with me and I was just trying to treat it with all the advertised products. Finally a few years ago it suddenly became worse. I had the distinctive white patches. I asked GP to refer me to private gyne who saw me almost immediately, confirmed it was LS. It is known for people who have one auto immune conditions to have more than one.
I’m diagnosed with Lichen sclerosus, I also have adenomyosis and endometriosis, Hashimoto’s, Coeliac Disease, Pernicious anemia, Asthma and other sensitivities causing skin and allergies like problems.
There’s a definite increase in prevalence in this condition especially in menopause chats I see elsewhere. I think more people are now willing to talk about it … it’s one of those things many didn’t/don’t like to talk about, however I’m all for sharing things if it can help others … although we do need to be practical about health matters and go down proper routes to get diagnosis and not self diagnose in my opinion and not everyone will present the same.
I was diagnosed last year but from 2020 my itchiness started I’d say, I was trying over the counter intimate remedies that didn’t really help, and not using perfume toiletries was probably the only help … I had another bout of physical health problems crop up in 2020 and added this itching into to conversations with GP but was told at first as my blood sugar is creeping up its most likely cause and as lockdown commenced this never was examined to be diagnosed so I thought it was blood sugar problems on GPs say so … I had other gynaecological issues popping up and last year and was finally diagnosed and I had treatment and now on maintenance dose, and don’t itch any longer thankfully, I have annual review as with 3% of sufferers it can turn cancerous if not treated hence the annual review to make sure all is ok.
I have read information on the thyroid connection on internet last year but I just googled these and are out there… but I also remember mentioning this in posts but I haven’t done a specific post on it, I don’t think.
My Endocrinologist classes me as having poly glandular autoimmune disorders there are various types he didn’t categorise which, and I could get more autoimmune conditions.
Over the last decade of reading/researching various things regarding autoimmunity firstly we often have a predisposition re our genetics. Although these genes need a trigger and not everyone with these will have the conditions as they’re not turned on.
These triggers can be from umpteen things, viruses, dietary sensitivity, stress, environmental factors eg endocrine toxins etc and then there’s nervous system and mental health side of things… linked here again with stress, past traumas, how something such as loss of parent or child etc can trigger even a house move or divorce… Although a bit stereotyping here it’s a woman’s problem- as juggling everything in life re their home, kids and elderly parents and work… but men do get this problem, but it is statistically more women that are diagnosed with autoimmune disorders but this could be as men don’t go to get diagnosed who knows.
The Body Keeps the Score by Bessel van der Kolk is excellent book
Dr. Gabor Maté works are very interesting
Many in U.K. may know Dr Rangan Chatterjee he often has podcasts with influential people- which maybe easier to start with as introduction into these people work.
Diet and lifestyle also play big part unfortunately sometimes we are just more sensitive to things for me it’s gluten which has opened a can of worms…which I had no idea I was coeliac… regarding getting any gastrointestinal issues as I was asymptomatic… purely found out from another physical issue… and all my autoimmune conditions diagnosed within weeks of each other.
So it’s a case of finding your triggers and dealing with them to help your health going forward… and getting right treatment if required.
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