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From: Yvonne on 16 Jul 2008 11:15
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?

Yvonne


From: Rod on 16 Jul 2008 12:34
Yvonne,

Your post, though much of it depressing (indeed, depressingly familiar),
does have its high point:

"Also I could feel my thyroid medication working for the first time in 4
years [...]"

I guess I am posting what is below as I want to try to help. But I doubt
it is going to be of much use.

I know little or nothing of endocrinologists - in the south or
otherwise. And certainly not enough to make a recommnedation. What I can
say is that the name "Lazarus" has come up quite frequently and at least
some of what I have seen suggests a sharp mind and more understanding
than most. Not sure where you are - Cardiff might be further than you
can manage.



Professor John Lazarus FRCPEdin
Professor of Clinical Endocrinology and Hon. Consultant Physician
Llandough Hospital and University Hospital of Wales, Cardiff

E-mail: lazarus(a)cf.ac.uk

Biographical information:

I have been in Cardiff since the early �70s after qualifying in Glasgow
and Cambridge. I spent 1� years as Visiting Assistant Professor,
Columbia University, New York in 1975/76. My main research interests are
in thyroid disease � particularly thyroid disease and pregnancy and also
iodine nutrition.

I am currently President of the British Thyroid Association and Clinical
Director for Medicine in Cardiff and Vale NHS Trust.


Taken from:

<http://www.rcpe.ac.uk/fellows_&_members/regional_advisers.php>

--
Rod

Hypothyroidism is a seriously debilitating condition with an insidious
onset.
Although common it frequently goes undiagnosed.
<www.thyromind.info> <www.thyroiduk.org> <www.altsupportthyroid.org>
From: Yvonne on 16 Jul 2008 12:50
Thanks Rod, thank you so much! I would definitely be prepared to travel to
Cardiff. Yvonne

> I know little or nothing of endocrinologists - in the south or otherwise.
> And certainly not enough to make a recommnedation. What I can say is that
> the name "Lazarus" has come up quite frequently and at least some of what
> I have seen suggests a sharp mind and more understanding than most. Not
> sure where you are - Cardiff might be further than you can manage.


From: Jerry on 16 Jul 2008 13:00
Yvonne wrote:

> 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.

hello there, Yvonne. If it makes you feel less concerned over doing that, I'll
point out that people commonly take 60 mg prednisone for months - for immune
suppression. (My father did so, too.) Prednisone gets converted to
prednisolone, and IIRC the ratio is 1 to 1. In turn, prednisolone is 4x
stronger than hydrocortisone.

So that is equivalent to 240 mg of hydrocortisone.

(Note that it takes a long time to taper off those doses.)

Also, have you tried supplements of DHEA or pregnenolone? You're not a
vegetarian or anything like that, right?
From: Yvonne on 16 Jul 2008 13:13
Hi Jerry

Thanks for your reply, it was reassuring. No I'm not a vegetarian and
haven't tried any suppliments other than vitamin C and sea salt, also
potassium.

Yvonne


"Jerry" <Jerry(a)nospam.not> wrote in message news:g5l9g3$qao$1(a)aioe.org...
> Yvonne wrote:
>
>> 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.
>
> hello there, Yvonne. If it makes you feel less concerned over doing that,
> I'll point out that people commonly take 60 mg prednisone for months - for
> immune suppression. (My father did so, too.) Prednisone gets converted to
> prednisolone, and IIRC the ratio is 1 to 1. In turn, prednisolone is 4x
> stronger than hydrocortisone.
>
> So that is equivalent to 240 mg of hydrocortisone.
>
> (Note that it takes a long time to taper off those doses.)
>
> Also, have you tried supplements of DHEA or pregnenolone? You're not a
> vegetarian or anything like that, right?


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