feeling frustrated

thanks hanny...a really good strategy! Gosh you are so 'up there' with the latest!!

is it goat/bovine colostrum?

Hi wendy

I appreciate your determination!

hope you're feeling less sore...any improvement? did the honey help at all?

Hi Marey,

Still got the sores, which have been termed "kissing erosions".  Havent got round to buying the special honey, as I have been spending a lot of  time with my grandchildren, but the summer holidays will soon be at an end and I will concentrate more on myself.  How are you doing? xx

Thanks wendy...how kind of you to enquire. I'm ok. Have to say I am really enjoying this site and learning so much and getting so much support and interaction.

Oh i'm worried you can't get to the health food store for some good quality honey, calendula is another good product as is virgin coconut oil...its solid but very healing especially if you're raw.

when you do have more time I would like to invite you to follow the causes of LS thread...we're coming up with strategies to truly heal....demanding but worth it...hope to see you! Enjoy your grandchildren!

really need to keep those erosions apart    can you spray with your showerhead by sitting on side of bath after using the loo? 

love marey x

Hi Marey

i don't need a shower as I have a Japanese-style loo with bidet incorporated into it.  This is a real blessing, except at night (this loo is downstairs).  I shall get hold of some virgin coconut oil and hone and see if this helps.

love WendyWendy

wonderful wendy....will be thinking of you xxxxxxxxxxxxxxxxxxxxxxxxxxxx

I am on two of the facebook groups but I find this site more helpful.   Maybe someday the health care system will change, but I will definitely be on the search for a better dr.

I'm so glad you find this site helpful. What is it about us that you like? xx

oh sha .....i am sorry you had that bad experience with your MD. I feel part responsible for encouraging you...almost towards false expectations. Thing is its simple they lack incentive to truly care. well we care if that helps!!

Prob best to refine the best things to ask for via testing...your question has helped to advance that quest ...so thank you!!

not your fault at all. Ive had questions for many years and just gave up talking to doctors about anything.   

I find this sight more helpful I guess because you all seem to be more interested in diving into it all. and its easier for me to follow I guess.

Someday I find a caring dr.  My husband had a great one for years and he just left his practice so we will both be on the hunt for a new one

yes good luck with finding one...but glad you're finding accessible info here. thats how i feel too. x

I'm on 3 thyroid groups healing solutions for thyroid mainly natural solutions and for thyroid patients only FTPO,  and thyroid nation.

hi kellie

could you possibly tell me more about the thyroid groups which you mention? I'm especially interested in natural therapy. what is FTPO please and i'll try googling thyroid nation.

am feeling rather excited about this....thanks for the boost kellie!

best wishes marey

Sorry I have only just seen this. FTPO is for thyroid parents only on Facebook. The Healing solutions one is all about natural solutions run by Karen Fitzpatrick she runs other groups too lots of great info on them. My favourite natural healing group is Magnesium Advocacy Group it's not just about magnesium and everyone is so informative and it's has different kinds of healers on it.

wow that sounds like my thing. are these various websites? well i'll google,,,

thank you kellie!

i had a look at the mag group...very interesting...funnily enough i just bought some mag oil spray...vaguely wondering when i'll know that i've had enough!? thank you so much for these tips kellie...they'll keep be busy exploring for a while x

oh there's a fast starting on tuesday...you might like to join...check out sky23's thread which starts 'hi about to start a little experiment...' its quite an old  and long thread now...hope to see you over there!! also i started a dialogue in the alt med section about the link between LS and thyroid...you might have a contribution to make there too ...think you'll like some of the info which terri shares. thanks again so much for your input....you 've been a bit of a boost!

Hi Kellie--Is the magnesium group on the UK Forum or on Facebook, or where.  Sounds interesting. --Suzanne

when I say 'old' thread ....what I really mean is well established. Sky seems to have hit the right cord with everyone and the idea of a fast is taking off. wouldn't it be lovely if we all did this together? just start tuesday am first thing and see how far we all get reporting in to skys thread for mutual support!! no pressure to complete the whole thing but lots of back patting for those who get some or all of the way...even just making a start by skipping breakfast on monday would show solidarity!!

hope to hear more from you kellie...you are great! just what we need on board this vessel.... an exploratory, investigative soul with a communal spirit. 

kellie and hanny may i please share a thought about the little difficulty back there? Its this ...hanny is the most lovely, kind and gentle person and i know she was being random. Please will you be so kind as to accept her apology kellie...? i read it and i know that she is sincere. Hanny would you mind if i try to analyse this? I think that what may be happening to you hanny is a side effect of the 'roids. i think you have enough self awareness for me to be able to put this to you without myself coming under fire? are you receiving me ...is this ok to express as a concern about you dear hanny? I am desperate to get you going on this alternative protocol ...of course no-one can make any promises and it has to be at participant's own risk...but we might wish to consider ourselves as a sort of control group in an experiment? have you noticed hanny that you are feeling unusually aggressive and angry? that you don't know how to express this and are just firing off? would you ask your husband for his feedback? please accept this enquiry with sincere well meant intentions behind such challenging questions? Of course I might be entirely wrong and if so i do apologise...but may i have your response...maybe back on the thread where this came up...as this is kellie's thread and she may feel differently. i don't wish to impose. Oh actually its shari's thread....sorry shari...is it ok to have this discussion on your thread or would you like it to be moved?

one of the side effects of steroids is undue hostility and aggression...have others noticed this about themselves?

Marey, I think you should start a new topic on this anger side effect! Brill!

Kind of you to express it this way, Marey.  I have a lot of experience with off balance thyroid.  Not pretty.  The glob is an attack on this balance, but could not prove it perse.  Perhaps this is prove.  

Phew ....hanny so relieved that you've taken this so well and that I haven't offended you...was really worried ....but ofcourse I should have been confident - knowing that you do have a good sense of self awareness and that you would not be thrown off!

anyway have a look at the set of questions i'm posing for us to consider... under Morrell's new thread ...side effects of clob...yes i think that was the steroid speaking not you.

Marey,

Sorry im late to the convo, all these messages show up in the middle of the night for me. I do see a new thread has been started, not that I mind but a Good idea.  I use my smart phone most of the time so following the longer threads can be difficult. I can get lost quickly especially when the posts come in when im sleeping lol.  Gives me a lot to catch up on.

Shari

Hi Ladies the magnesium group is on FB but it has a website to called gotmag run by Morley Robbins not much dicussion on it though. All the interesting stuff goes on FB. Marey you can make mag oil yourself and it's so cheap this is what I do. I will look into the fasting Marey, thanks. As for Hanny it's fine I accept her apology she was obviously having a bad day I totally understand it's already forgotton 

 

Here is a little copy and paste for all those of you who suffer from thyroid problems;

 Bonnie, Morley Robbins believes we should not eat our hormones. The foundation of all hormonal functioning is Magnesium and the trace minerals.

Nothing going on hormonally happens in a vacuum. If your thyroid is off, it's because your adrenals are off and that means your ovaries too. 

You cannot treat one system without affecting the other.

I've just started using cronometer today it's an app ( free on PC but not phone) but I'm using it on the PC at the moment just to get a feel for it, it gives you a break down when you add your food of all the vitamins and minerals you are consuming daily rather interesting today so far I am totally lacking in potassium, magnesium, sodium and vitamin c, and calcium these are all pretty important for maintaining health.  If anybody needs any help, info just inbox me as I know we have to be careful with links and stuff. Another good one is curezone on FB also has a website which has a lot more info on the website,  Forgot to say Marey you can spray on as much mag oil as you want as whatever is not needed will be excreted in your urine, it does sting when you start but after 4-5 days you get used to it, I spray it on before bed and leave it some spray it on and shower after 30 mins personal choice. Kellie

 

I did not know about 'anger' as a side affect of using globetasol.  So now it will be a 'toss up'  - is it the thyroid and adrenal gland imbalance or is it only the globetasol?  Or perhaps just plain anger at this debilitating disease that does not want to be tempered/controlled/not to mention CURE?  I had to use the glob a little bit more frequently lately.  All I have is questions.  I will have to make another trip to the naturepath to learn what precisely is going on.  

I had noticed, since English is my second language, that it had become a little harder for me to find the right words to express myself well.  That by itself is already a small sign and should have alerted me regarding my thyroid balance.  

So, all in all, I need to thank you for this mostly accurate observation.   

may i ask where you are from hanny?  if not english then your command of the language is impressive!

oh thank you ....i took a risk....but i knew it wasn't you!!

Hanny, anger is not a side effect of using Clobetasol the way LS sufferers do. If you look up the drug sheet it will mention 'mood change' but it's listed among severe side effects like Cushing's syndrome which would occur if you were a serious psoriasis or eczema sufferer who had to use a tub of cream on large areas of your body over a long period. The biggest risk we take using Clobetasol is if we use too much and get it on healthy skin repeatedly, that healthy skin could thin. You can't disregard the issue of scale when discussing a drug like this. It's not the devil!

Thank you Morrell.  There is one thing however - the globetasol can affect my already malfunctioning adrenals.  I knew that I was a candidate to that affect. Resulting in imbalance of thyroid and adrenals.  It's a very delicate thing, unfortunately.  

Hanny, I did a lot of internet research twelve years ago after decades of using cortisone creams for psoriasis on large areas of my body (compared to the tiny area of the vulva). I came to the conclusion that I was suffering 'adrenal fatigue' and decided (with no consultation with my dermatologist) to go cold turkey off the cortisone. This began a long major flareup of psoriasis – worse than I'd ever had. I altered my diet according to a traditional Chinese doctor and became mostly vegetarian. I managed my stress to an amazing degree. And the whole time I was unaware that LS was ravaging my vulva.

This is what I've experienced. So, this time I'm following doctors' instructions and now my psoriasis is 100% clear and LS is pretty much in remission (I would never say cured and the damage is irreversible).

Anyway, I'm way out of my depth here. We all need to be very careful making assumptions about others' conditions. We're just typing anonymously and have no background. I just don't want this permanent record maintaining the falacy that Clobetasol causes anger. Complicated combinations of drugs and diseases are beyond the scope of our mutual support here.

To find a balance will be an artform, Morrell.  Without Globetasol I would not manage at all.  While on the maintenance doses I hoped that the thyroid/adrenal balance would not be affected.  And that went well for the longest time.  This LS is full of surprises.  Flare up's - where do they come from?

I agree, a person can not walk this alone.  We need the guidance of professionals in healthcare.  

And I know I don't have medical knowledge.  Only life's experiences.  And that is what I thought this forum was meant for.  To share how one is faring and compare notes.  Which may help with the next doctor's visit perhaps.  And so on ...  

I don't know where you live Hanny but you can get a cortisol saliva test from the doctor that you do at home over 24 hrs. On the facebook Mag group the adrenal cocktail is just 4oz of fresh squeezed orange juice or another whole food source of vitamin c, 1/4 tsp of himilayan pink salt, 1/4 tsp cream of tartar or potassium bicarbinate it's supposedly quite easy to fix without medication. Check them out so much information Magnesium Advocacy Group.

I haven't quite worked up the courage to ask the group about LS yet as there are 15,000 members so I can't bare the thought of them all imagining my problem.

 

Hi Kelly,

I have had this saliva test done.  

Due to malfunctioning of my adrenal glands I take medication twice a day.  Supported by additional vitamins and such.  Vitamine C already an important addition.

But thanks for the info anyway.  

And just this past weekend I learned about himalayan salt. Impressibve spice, I thought.  

Is this Magnesium Advocacy Group on this site?