Lichen Sclerosus - anyone also had thyroid issues?

[BlueEyesUltimateDragon]

Hi, I'm have a derm appt next week to have a look into Lichen Sclerosus. I've been in utter misery with my foof for months and 2 separate docs have had a look and agreed, they've seen dry skin, smooth shiny patches, white patches and a whole lot of red, angry soreness. Mine is apparently over my urethra also, which has caused no end of issues with going to the toilet.

My question is, has anyone also had their thyroid looked at and been diagnosed with underactive thyroid after an LS diagnosis? After spending time reading up on LS, I came across several websites that indicate that these autoimmune conditions can go together. Symptoms I have: cold hands and feet (checked by doc and no circulatory problems) headache, tiredness (but then insomnia if I push it too far), weight gain/not being able to lose weight, aching muscles, brain fog for a couple of years now (can forget what I'm talking about mid-sentence or if I'm distracted or interrupted) and I've just had a delightful 7 week stint of vertigo too. I'm wondering if it is worth asking at my derm appt if I can be put forward for thyroid testing too.

An extra bit of info: I had some private bloods done a few years ago when I had a back problem and they suspected a type of arthritis - no arthritis but they did flag a non-specified auto-immune problem. However, my NHS GP wasn't interested in investigating further. I've just not felt myself for years now and hope this might be the answer for me.

I'd really appreciate any experiences or advice anyone might have. I'm also happy to hear if you think I might or might not have an underactive thyroid - I can't tell if I've just gone down a rabbit hole here. Thanks in advance!

Hmmm.
I do have LS (very common in menopause I believe) diagnosed by the GP only, no referral, just cream -which tbf does work.
However, I have had an underactive thyroid for over 20 years and do also have arthritis along with CFS/fibromyalgia, which I’m pretty convinced is actually something autoimmune, because someone seemingly as well as I am can’t possibly feel this dreadful for so long.

Can I ask what private bloods you had and where did you have them?
Thanks.

@MEFibroHell sorry you are suffering so much! I'm only 32 so taking a bit of getting used to potentially having a chronic condition but it is what it is. I had a whole host of private bloods at Nuffield but the one that flagged an issue was antinuclear antibodies I think

My suffering started at age 25/26…half my lifetime ago! it’s just got progressively worse as more and more things have developed!
I wondered if it was a spire or Nuffield or something where you had your blood test, thanks for the info, I will have a look at what they offer.
I hope you get somewhere with investigations and can get some decent treatment.
I do wonder if it would be worth you also getting Vitamin D, B12 and folate checked too. They all have quite a lot of similar overlapping symptoms. Good luck.

@MEFibroHell thanks, I hope you make some headway too. I was under a rheumatologist due to the suspected arthritis, he ordered the blood tests, but you might be able to go through a private GP service if you didn't have a specific department to go under.
I'll have to see what the dermatologist says next week, I have eumovate but I'm struggling to get this flare under control so may need to go for dermovate instead my GP said. I'll mention the thyroid possibility at the appt but I'll prioritise getting the LS under control I think. It's crap having dodgy bits!

I have LS. Drives me barmy. I do have cream which does help too.

I've just had 2 urethral diverticulum's with a cyst removed and I swear it's aggravated it. I think where they have sliced and diced me and made new parts it's pissed off my body tbh and it's all just very spicy right now. It's starting to wind me up.

I was told the LS is very much just a tough luck thing, have some cream and deal with it.
Haven't heard about the thyroid connection, but, all the symptoms you described I have and I've also recently been diagnosed with Coeliacs disease which caused me to be anaemic and iron deficient because of the Coeliacs.

I swear I am just a whole host of auto immune conditions as I have IC too 😭

I don't have both but I do have autoimmune thyroid disease. What do know is that autoimmune diseases go hand in hand. If you have one, you're more likely to develop others.

Definitely worth asking GP for thyroid bloods with the symptoms you're describing.

I don't know much about Thyroid results, these are mine at the peak of my symptoms, I think they look normal?

I have Dermovate op. I really struggled with it having little effect until I read a thread on here and applied it like a pp had been told, instead of how the GP instructed me to.

Twice a day, morning and night, for two weeks and apply using a mirror so you know it’s on and on the right area. Makes a huge difference.

I've been 'fortunate' with my LS in that Dermol shower gel seems to keep the worst of it at bay. Was diagnosed probably 20 years ago now in my 40s. No thyroid issues. I do have osteoarthritis in various parts of my body.

I had to use creams in the early days after diagnosis, but it settled to the extent that using Dermol in the shower keeps it under control.

I hope it settles for you too. You're very young to have to put up with this.

Thank you for all your experiences, I'm sorry so many of us are suffering! I find the most irritating thing is that it seems to irritate my urethra so I end up with a never-ending desperate urge to wee which stops me sleeping. The GP also thinks this is causing non-visible blood in my urine as every sample I have done since October has been positive for blood. The urgency does seem to be settling now I have a stronger cream and I have my derm appt on Friday - never thought I would look forward to a doctors appointment! I'm going to ask about the thyroid symptoms as well, fingers crossed

No thyroid problems but I have LS, Raynauds and rosacea so a cluster of auto-immunes. All (except the Raynauds this winter) under control. There's so much ignorance even in the medical profession about LS so it's better to take nothing on trust but to find out as much as possible yourself. Research research research.

Update: had my derm appt just now and confirmed LS. She said she can see some fusing of labia and some patches so I am to continue with the steroid until it calms down and I have a moisturiser to use constantly when in and out of a flare. I asked how bad it was and she said mild-medium but we don't want it any worse and she will see me every 6 months to monitor.

She has agreed to test my thyroid too so having those done on Monday (tsh and antibodies, she said they won't test T3 or T4 unless the tsh shows as abnormal). So halfway there to some answers I guess.

Not sure how I'm feeling about knowing I'll have this forever, just hope it becomes manageable!

I have ls and no known thyroid issues but I’m on an ls Facebook group and a LOT of the members do!

I'm no expert from my own experience I really did think it was LS. Hope that you can manage to get it under control. I think I had Dermovate to begin with but it's so long ago I can hardly remember! I haven't had a checkup for many years.

As I said above mine's quite well controlled but if I didn't use the Dermol for a couple of days, the discomfort will return.

I'm sure it will become manageable. I was fortunate that my GP recognised immediately what it was. I also had a couple of appointments with a specialist. There are a couple of groups on Facebook which can be helpful if you have queries. Best wishes!

Think you need to go back to gp and ask for thyroid function tests.

Update: my thyroid tsh and antibodies came back normal - phew! And the LS is under control now and just using zeroderm for maintenance at the moment. Thank goodness for that!

Great news!

@BlueEyesUltimateDragon
how long it is take for the dermovate to start making a difference. Am currently on nearly a week use and not seeing much relief 😔

Hi @MySpi I took just over a week to notice a difference and 2 weeks to be nearly symptom free. You might be in a particularly bad flare-up - my dermatologist said to use a bit more than the recommended amount to get it under control. She said getting it under control quickly was the best thing (also to start using the steroid as soon as a niggle starts up to try and ward off any flares). Hope you find some relief soon!

I wonder if LS is what I have.. I have underactive thyroid, interstitial cystitis, roseacea, endometriosis, asthma the bloody lot along with a load of allergies. I've just started having the joyful symptoms down there that seem to fit with this but I have just been using canesten thinking it must be thrush or soenthing.

@BlueEyesUltimateDragon
i hope that will happen to me, your first post was like reading what I’m going through, will persevere with the clob, am so sick of thinking about my foof. I’ve got to laugh or I’ll cry lol.
@Shiningout i also have rosacea and those annoying itchy eczema on my feet in the summer.