Update, can anyone recommend a maverick Endocrinologist?

[Guest guest]

Hi everyone

I saw the Endocrinologist today and she has refused to recognise

anything other than the Short Synacthen results. As my cortisol went

from 230 to 700 when injected with that huge dose of ACTH she is

refusing to treat my adrenal problem on the basis that she 'might get

struck off' if she does let me have hydrocortisone. At one point she

even said that I looked more like someone with Cushings Disease (too

much cortisol rather than not enough) as I have a moon face, a lot of

weight around the middle and pink stretch marks. She wanted to test

for Cushings (seems odd when my 24 hour salivary results and morning

cortisol show very low cortisol). After half hour of debate (or rather

arguing) she suggested that she will refer me to a Professor

Endocrinologist in Guildford for a second opinion as they often swap

patients to see if the other has missed something. However it is most

likely that he too will think only within the box.

She basically said if she thinks outside of the box she will lose her

job and she cannot risk that. I don't think she is personally at fault

and understand where she is coming from. It is the system in general

that is at fault. She admitted that not much research is being done.

The NHS Endocrinologists are being forced to think 'inside the box'

and not allowed to even give consideration to a test like the 24 hour

salivary cortisol. Their jobs are at risk if they give us patients the

treatment we desperately need.

If you read through my 20 paged paper of evidence you'll see how much

is substantial. Even the instructions in my box of thyroxine state:

" BEFORE TAKING YOUR MEDICINE Do not take Levothyroxine Tablets if you:

Are suffering from untreated adrenal problems. " and " check with your

doctor or pharmacist before taking Levothyroxine Tablets if you: are

suffering from a condition caused by an underactive adrenal gland such

as panhypopituitarism " .

A few weeks ago I put my rest results and endocrinological medical

history on this website:

http://homepage.ntlworld.com/pernod/results/endicrinology.html

Following this I then gathered as much information as possible and

made a .doc file to show my endocrinologist. I have the file on my

site here: http://homepage.ntlworld.com/pernod/results/adrenals.html

It ended up being 20 pages long.

For the last week I have been taking between 5 mg and 7.5 mg

hydrocortisone each day (self medicating) and some of my symptoms

clear up after taking the medication. Although I still feel very ill I

am less close to collapse after taking the medication despite it being

such a small dose. Also I could feel my thyroid medication working for

the first time in 4 years (which proves there is a link between

adrenal and thyroid).

I wrote to my Endo's secretary a week ago and attached the 20 paged

document (hoping she would get to read it prior to the appointment).

The secretary replied saying that the Endo had forwarded all my

information and test results to the Consultant Biochemist and to wait

until the appointment to discuss things further. She did not mean ALL

of the information however, simply my letters and test results. The

Endo never did get my 20 paged document. So today I gave it to her

presented in a folder. Who knows if she will even read it or forward

it to the Guildford Professor she has referred me to. The evidence

doesn't change the fact that (as she sees it) her job would be at risk

if she prescribes hydrocortisone.

My GP said IF the Endo agrees that I need Hydrocortisone she would be

happy to prescribe it. However the Endo does not agree. I am now

willing to pay for a private consultation. So, the main reason I am

writing is to ask... do any of you know of a private Endocrinologist

in the South of England who would give consideration to my 24 hour

salivary cortisol results and advise medication based on those

results. If I can see an Endo privately who would be able to write to

my GP recommending Hydrocortisone I think my GP would agree to

prescribe in those circumstances. I need a maverick Endocrinologist

in the South of England. Any ideas?