so I made a Dr. apt for next week. same clinic but different Dr. because I have concerns that I dont want to wait any longer. so a few things I plan to discuss are:
testing for Hypothyroidism(symptom checklist)
checking my estrogen levels
changing to clob oitment (still have cream) seems i often have rawness
possibly asking for topical estrogen (thoughts on this)
bringing up PTLS(symptom checklist)
small rough raised area with white skin tag thing( anyone have a clue to this) not painful
any other suggestions that I should bring up
thanks
Shari
Ask for Epaderm or similar emolient moisturiser/skin cleanser that you can wash with. Never ever use scented soaps or gels etc. I never use soap at all. Good plan you have to go armed with questions and requests. Take Dr Goldsteins webinair details with you so that your GP can research on your behalf. It might help her understand your concerns. Good luck.
thank you, I did get a moisterizing body wash for sensitive skin no fragrence, its like lotion. wash with just warm water most of the time. one Dr. suggested Eucerin cream but I was hesitant so never bought it. And yes I intend to bring info on Dr. Goldstein.
As my daughter would say, that's cool. Epaderm is a thick grease like moisturiser that you can use to moisturise and clean as it emulsifies with water. It is a good barrier against urine too. Others use coconut oil (also a solid thick ointment) and other similar products. Good luck.
I just bought some coconut oil. 
it is really great for lubrication and i did use it once just to see how it works for moisturizing, good stuff. also bought aquaphor healing ointment but its active ingrediant is 40% petrolatum so wondering if better to just use plain vasaline thats 100%
Coconut oil is also suppose to be antibacterial or antibiotic or something good for us. He he sorry its getting late and I am tired. I know some use vaseline but I was told that Epaderm is better. I think it is what we all find suits us best. Moisturising is the key though definately. When my ls is not active is when I am really well moisturised. If I get lazy and don't do it, it quickly gets active. I'm off to bed now. Good luck
I bought paladin diaper rash ointment on the recommendation of another site - not crazy about it. I also bought emu oil, not crazy about that either. Then I bought a tube of Vaseline, and it has given me the most relief. When I'm really irritated, I mix lidocaine ointment with the Vaseline and apply that....
I've never used soap down there, but with all this goop, I've been feeling yucky so I bought a bar of Dove for sensitive skin and actually like it.
Medicine wise, the Clobetasol wasn't working, so my new dermatologist prescribed Protopic. Lots of side effects, and the dosage was too high (twice/day) so I stopped for a few days and now am using it every 2 days or so.
That's what's working for me, I hope it helps someone else 😊
I was not crazy about the diaper rash stuff I bought either. I do find that the vasaline or aquaphor ointment relieves the irritated raw feeling. once I get this flare under control I may try epaderm. Have to get that online. I am wondering if the clob cream is irritating me though. Hopefully I can get the ointment since I just refilled the cream.
Hi Shari--A few other items that my practitioners sometimes test for include vitamin D levels (we want to have enough Vitamin D to help autoimmune disorders), iron/ferritan levels, T3/T4/Reverse T3 and TSH levels, general metabolic panel, C-reactive protein, homocysteine, autoimmune testing like Anti-Nuclear antibodies and Sed rate, and DHEA levels (helps with autoimmune disorders). Thought I'd throw these out in case you think any might be helpful or relevant. Good luck at your appointment! --Suzanne
Yes, I always forget to take my vitamin D, need to set an alarm. I will write it all down and ask. Its a state clinic so they never seem to test things like a private dr does. I will try to push it. I have had low iron levels before. I will keep my fingers crossed that this dr will be helpful. Thank you
Hi Shari--Oh, I forgot to mention that I just started on the clob cream a couple of weeks ago and am trying to get it refilled also with the ointment instead. I have noticed that the cream leaves me feeling raw and irritated. Is this the feeling that it gives you? --Suzanne
I used a tiny bit of the Protopic ointment prescribed to me last night and got up feeling itchy and burning. Enough with that stuff. I guess my only choice is the Clobetasol. Definitely the ointment, it stays on longer.
My clob cream prescription had 12 repeats on it. I'd just refilled it for the first time before I saw Dr. G's presentation. The pharmacist was happy to give me ointment and name brand, not generic. I wasted a tube ($24) but that's nothing for something you buy once a year. The Dermovate brand was twice as expensive.
I think it's the cream that has given me 'ring of fire' all year. And I kept applying it to that big are around my anus hoping to calm it. It's always worse the day after I have a big dessert. So, I'm optimistic that between cutting a lot of the white sugar out of my day and using the ointment, that area may get really good.
Did the doctor prescribe the Protopic because the clob failed to work or because it irritated you? I've read that Protopic is kind of a last resort. It sure would be good if the clob ointment worked for you!
I definitely feel better in many ways on a clean diet (someone told me the other day that I looked "radiant"--how about that!). Wish I'd known that years ago, as it may have prevented a lot of these autoimmune issues. Looking forward to seeing if the ointment causes less irritation than the cream (ironic!). Let me know how it goes for you, Morrell! --Suzanne
My doctor is on vacation and I have to wait a couple of weeks to get the ointment 
Just called the pharmacy here and they won't do what yours did--needs a doctor's okay to switch to ointment (even though she asked me originally which I'd prefer and I unknowingly answered cream). Trying to remember why it might be best to get non-generic. Was it because there's less irritating carriers/fillers to the steroid?
He prescribed it because the Clobetasol wasn't working... But now I'm thinking it was a mistake and too harsh. I'm so frustrated! I've had 1 day without irritation, just 1, in the past several months. That was 2 days ago, the swelling was down, white patches gone, I was me again. It lasted a day. Shoulda had sex, but was too scared 😫😫😫
Yes it feels irritated and always have one are that feels raw but not sure if it the cream or what. I do know one instance I had a bad raw area and it stung bad if the clob touched it. It just doesnt seem to be working as well anymore, but maybe due to not using it daily during a flare. Still want to get the ointment to see if its better for me. Hope we all have better luck with it.
hi shari
brilliant that you're getting this list together....sorry been away and also got grabbed for a med review before being properly organised myself....met my GP in the corridor (!) ...he popped in behind the counter and we negotiated the test requests then and there...I was struggling with my brain fog to think of everything but here's what went forward:
TSH
T3
T4
CRP
VIT D
I think that's about it...he queried the CRP ....so I pointed out autoimmunity...he said well there's nothing wrong with your joints!! I had to point out that I'd had an xray showing some arthritis...and thats what swung it ...think he was forgetting the LS as his female colleague diagnosed me. Feel chuffed that I did get those agreed at least and can always ask for further tests.
I particularly wanted you to hear from Suzanne as she has the definitive list and has been really organised and enlightened and inspirational. I didn't get anywhere near the full list but have made a good start. He just did the TSH last time...which was raised.
Does anyone have the norms of the other markers? Challenging question!!
Disconcertingly when I asked GP if he'd include free T3 and reverse T3 he told me they don't exist!!. I reminded him that he'd read Datis Kharrazian...but think he'd forgotten...his own brain fog...!!
Anyway I feel very much that I'm batting in the game and will try to be more orgarnised next time.
Thanks so much for advancing this shari...and Good Luck for your appointment!
Maybe take in a copy of Dr Brownstein or Datis under your arm ...in case they might like to borrow your text!? My daughter's GP was asking about some of the resources she drew upon so theres more open mindedness out there now perhaps.
Oh I know what I forgot shari... you mustn't forget to request an adrenal test - hanny is the one to ask about that...and also...very importantly...for an iodine loading test. You take an amount of iodine in the expectation that 90% will be wee ed out...if you retain a % over 30% I think it is.. you've got an iodine deficiency..its apparently becoming quite common....as much as 80% of patients in the States are deficient. To do with the halides replacing iodine...so thats chlorine, fluoride and bromine...and being extremely negative to us...but the good news is that adequate iodine will push them back out again.
Progesterone, oestrogen and the mother hormone pregnenolone (actually made with cholesterol). Also another test involving your saliva...but I can't remember for what just now ..too tired and brain fogged but you're doing great in assembling this list and THANK YOU so much again for the question x
night night xx