so the dermotologist knows more than the endo!

i have just returned from the dermo after Gp said you need to see the dermo before we can get a wig. so ithought waste of time, been there before---- i am sooooooooooooo tired and fell asleep sitting up waiting inthe hosp. i see the dermo, she says and how bad does this get- i produce my photos,of hair loss and eye swelling an d tell her what happened when i was in hosp in 2007 and again that i was so very very ill for 3 years from 2010 and thought i was pegging oout-. on my doctors letter he wrote that my thyriod wa s underactive and my adrenals dont work properly and some immun e probs... i told her-- dermo doc-- how wwell i felt after the weeks supply or prednisolne in 2010 and then how i crashed after i stopped taking it-- she said well you would!..... I said that i thought i needed cortisol in hosp in 2007---------- but no one did a cortisol test---- she said YES- IT IS SO EASILY MISSED AND DOCTORS DO NOT THINK OF IT! she UNDERSTOOD IT ALL. the health care assistant said whats cortisol, Mrs dermo said -- its adrenal insuffieccy if you dont produce enough cortisolfrom the adrenals and without cortisol you can be very very ill and it CAN KILL YOU! I WANTED TO KILL THE BLOODY ENDOS AND DOCTORS THAT I HAVE BEEN BATTLING WITH FOR 9 DAMNED YEARS--- 8 YEARS AT BARTS HOSP WOULD YOU BELIEVE . AND THE HOSP CRASH IN 2007, sorry caps on, i told her how i was told i was a hypocondriac and asked her if my pictures were those of a hyponcondriac!----- bless that woman! she understood i am sooooooo gobsmacked. i think tho it has all been left too late, she has given me steroid drops for my hair and said she couldnt promise anything but also that when the endo does his tests i should have a low dose hydrocortisone or fludocortisone or what ever it is.. no one has bothered to mention that ever! bless that doctor! and also when she looked at thise awful photos she said --- this is what low cortisol does!

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34 Replies

  • Hi pettals,Glad someone is listening and hope you get more help in the future.x

  • unfortunaltly thatis the end of the dermo---- she has done her bit as she isnt an endo and she said she cant interfere and give me steriods as ther are two differnt one from from the adrenals.

  • Yes she sounds wonderful - hope she passes on her findings to the endo xx

  • no she wont write to him but i wil certainly tell him what she said....

  • Good - let us know what he says :) xx

  • Hi pettals, I know of someone who was on prednisolone because of hairloss, and she became pregnant. She came off the prednisolone whilst breastfeeding, and when she wanted to become pregnant again she had 3 miscarriages. She asked her gynae to prescribe prednisolone again for her and she refused, so she went back to the dermatologist who again prescribed prednisolone for her and she is now the mother of a healthy 2nd child!

    There is a Doctor Quenby who has done research in Liverpool about off-label use of prednisolone for preventing miscarriage. She was the doctor who advised this mother-to-be. There may be a member of her team who has looked into other possibilities for its use. It might be worth checking since the endocrinology lot seem so reluctant to help.

    Jane x

  • well shiver me timbers jane-- just goes to show eh? th e dermo lady didnt wantto give me it as she said it was down to the endo to tests and she couldnt interfere--- she also said they he should check for growths adrenals pituitary--- but they never have-- i am going to repeat what she said to my new endo who has actuall ysaid that he will do syn adenal tests and that if my cortsiol comes back 300nmol he will treat me-- watch this space... thankks jane.

  • Good progress-don't we love success stories on here :)

    btw: Anywhere getting towards 300nmol @9am is worthy of interest- so don't give Endo too easy a time of it ;)

    The synth test does affect normal readings though -as it challenges adrenals. to see the given response.

  • yes i had one when i was very very ill baseline was 217nmol and it took twice as long to reach the double however it was dismissed even tho i was so ill--- when i had a ecent thyroid test the biochemist took it upon herself to do a cortisoltest from the blood sample and written on the test sheet was thyroid abnormal so i have decide dto do a cortisol test it is 370nmol an dbelow 400 which does not exclude addisons.please not treg range changed! well i wonder whatthe reg range is now then? havent had susscess yet----- not holding my breathe ,i am feeling unwell and weak and shaky but i still am not treated.

  • that was a quote from th ebiochemist not my own assumption....

  • How long to wait for Cortisol check?

    Hopefully, they will not ignore any bad news this time.

    Spin Doctors have moved from politics...but let's hope the tide has turned at last!

  • Hallo tegz

    Have you had tests done at 9.00 a.m.? I was always led to believe that tests done after 8 a.m. weren't valid. I wish the NHS wasn't so variable!!


  • blue 2-- this annoys me--- cortisol should be done at 8am but they are sooooooo lax---- 9 am is acceptable but really no later and when its done in the afternoon- a one shot blood test and told you are normal it makes me so cross-- it varies thru out the day and i know my daily level has been a s low as 12nmol by genova saliva and whats more-- saliva shows what is biologically available where blood shows what is available and what is bound up by proteins making it not available so with blood you never get a proper reading, but they will not accept this ,its false and we are told we have mmore than we have in our cells. an dlow cortiosl is i thinmk what my own problem has been, but instead if accepting my sympoms and listen ingto me and giving atrial they have sent me for so mant tests all barking up the wrong tree an deven when its come back low i have been - 'normal'-. plus all the suffering inbetween. unless the tests are off the scale i think we are all normal!

  • I had it done about 9:10am- but it came out at 463nmol/l. which is above the 400 line

    The range struck me as odd though 171-536

    [Midnight- 140] as this makes 400 around 80% of max and I thought it should be a higher max for early in the day.

    PS: Just saw your post- you know how it is on here, right now!

  • hi tegz, i kno wi hat ethis new site yu can only veiw one thing at a time , ggggggggggggggrrrrrrrrrrrrrrrrr!!!!! yes to me that is still low, they use 400 as the cutoff, but you could google labtestsonline and ask them , it takes a while for them t oget back a s so many people ask them questions, but they are reliable.

  • & 171 is lower still. How can that be right?

    Maybe the 'stand alone' test is only for picking up severe under performance of Adrenals. The private clinic don't do 4 readings over 24 hours to see diurnal response- so I may have to look further, where you suggest. Since reading up on it and doing an online check, I seem to be on the borderline now- after recovering somewhat after retirement. Also need to see if Levo helps medium term.

  • oh dear tegz, what a minefield- h erange is such a wide range it is rediculous, all i can say is b5 high dose supports adrenals/ashwanda and rhodiala, if you HAVE NOT got high blood pressure glyzcerrised licorage drops helps, but shouldnt take that for too long. contact byron on wellness resources web sait he answers your question sif you email him, he is brilliant. i woulodnt like to tell you to take anything as we are all different and what one suits one it dont suit another, but if you have low adrenals it will not make yur hyroid work well either. dont forget

  • I have Hi BP managed now!I'm wary what I take, too :)

    That site is US based -do you just get free advice?

    I feel I need a saliva test as recc. here before I take anything. Tried B5, as Dr DP says it's good for adrenals- but not noticed any change tbh.

  • labtestonline have all the flags on the top bar of web page ,click on uk, yes free advice

  • i have asked a questiontoday on there of baseline cortiisol levels it will be a while before they reply its all free.

  • found dr quenby jane.. above-- and the lady who had the babaies in liverpool echo....

  • Hi Jane,

    Could it be Hughes Syndrome?


  • Possibly. I really don't know about Hughes, but there is a forum on here that deals with it. Jane x

  • Hello pettals. I am glad that at least dermatologist could bring some enlightenment. In regards to St Barts. a bitter disappointment, still cannot go over it.

    I wish you well.

    love/ E xx

  • thankyou and still i am struggling.... but for ever hopeful.

  • dear ED, it is not only barts, but a short arrogant horrid little man who is a prof of endo who was at barts who i would love to name and shame and i am happy to spill on pm- plus a private one in 2001--- plus another who wasnt horrid, quite pleasant actually but who just gave 20 t3 and that was that! and another local who queried what was causing low 'cortiscosteriods' but did nothing---- plus a hosp stay in 2007 where i was nearly dead who did not do a cortisol test and of whom the dermo doc said - doctors do not think of this and it is easily missed! hey ho ho hum!

  • thanks ed.. xx

  • Thank God Pettals you don't give up but battle on an on with mounting credit card debts.

    The steroid drops for scalp. I know she must have told you. You have to be extremely careful and cautious with use. If it is the same that I was prescribed (it was scalp lotion and instructions were in Italian and had to look on internet). A little goes a long way. You have to wash hands before and after use. Not use it longer than 4 weeks. (I was able to use it for 2 weeks and scalp became a bit sore but if I shed hair I start again). I put a little on an area and spread with fingers and so on.

    Best wishes

  • dear shaws i feel so awful icant give up, i am battle weary, i look one hundred years old and low cortisol rapidly ages one----- my armour is wearing out and so am i , but i refuse to give in-- once i have had the neuro tests next week an dmy endo tests are back i am going to have to think what to do. i think i will prob get some westthroid or naturethroid again and contact dr m an dget him to give me some pregnenolone that will then convert to th emissing hormones naturally.. or i will go see dr shirley bond--- perhaps if you are around you can meet me at liverpool street if not dont worry i can go with a friend from down south, either way i think i will go th enatural hormone route, as least the last time i had preg my cortisol went from 217nmolish to 700.... its a bit scary going it alone but if i start off small...... the scalp stuff is betamethasone valerate. must not get near gas or fire or i could be burned alive!!!!!!!!!!...

  • that was must NOT get near gas........

  • I had a similar warning re drying hair or going near heat - Can you imagine what we would look like!!!!

    I will be back end of Sept so would be able to accompany you.

  • Bless you, Pettals. What a relief to finally find someone who understands. Hopefully your treatment will help you. You may well find that those steroid drops for your scalp also get into your blood stream a little so perhaps you will feel better in yourself as well as getting your hair back.

    Wishing you all the best. Please let us know how you get on.

    Carolyn xxx

  • i noticed nomemorytonight had liked a comment of mine bringing me backhere- blimey 4 years and stillstruggling with the same old shit--and much less hair, are you in a bad way nomemeory tonight to bescrolling the archives- howcan we helpyou>

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