Re: NHS Waiting list for Short Synacthen

[Guest guest]

I never did get my short synacthen test! I was meant to have had one

after my endo appt in December, but the half-witted " doctor " who was

covering my usual endo didn't bother to organise one. My usual endo

was then meant to organise on for me after a consultation in Feb, but

this hasn't happened.

From what I can gather, this test will only show whether you have

's disease, which is very rare, and even then, the test isn't

that reliable. If the saliva tests show low cortisol, which I suspect

it will as it did for me, then buy some Cortef and treat yourself.

It's like a magic pill. No more yawning and exhaustion! I'm not sure

how long I'll have to take it for, but I don't care. Problems with

Armour aside, I've not felt this good in a long time!

Good luck! Jane

[Guest guest]

-

hi

sounds like you have similar experiences with nhs as me no they are

not happy to look at your salivary tet results as they are a new

test not recognised on the nhs i had normal cortisol levels and

synathegan test showed normal. the salivary test is more reliable

and accurate but ony a private integrated dr will recognise them i

have been ill in hospital twice nhs says do not have adrenal

insufficency but salivary tests showed they i did have so refused to

do anything. one point in your favour is you having low cortisol

blood levels in morning just shows there is definately a adrenal

deficency going on i had been taken a herbal substitute liqorice

for adrenal deficency and look forward to seeing private doctor on

14th no you are not alone as i discovered there are many more people

out there i have throid hashimotos thyroiditis which i discovered by

myself getting my blood test results from my dr which drs not

worried about until your tsh goes above 10 not listeneing to

patients only there blood tests i have been off work for over 6

months now

julie

>

I

have

> hypothyroidism and take high doses of medication (levothyroxine and

> liothyronine) and have supressed TSH despite low frees. My endo

tested

> my morning cortisol which came up low at 130 nmo1/l (range 250 -

850).

>

> I last saw the endo on 28th May and she said she would organise a

Shot

> Synacthen Test which would take place " within the next two weeks " .

I

> telephoned last Monday as I hadn't heard anything and the two weeks

> was almost up, and I asked if it would be within the next week or

so

> as I am feeling quite unwell. I was told again that time " I can't

say

> but it should be within next two weeks " . The Endo's secretary

> telephoned me today to ask me to come in on 23rd July for the

test!

>

> This will mean it has been two months from the date the endo said

it

> would be done within 'two weeks'.

[Guest guest]

MODERATED TO REMOVE MOST OF LONG MESSAGE LEFT. PLEASE DELETE WHAT YOU CAN OF

OTHER MESSAGES BEFORE CLICKING SEND. SHEILA

________________________

hi yvonne i advice you if you feel very unwell to go to accident and

emergency and get admitted a way to get things speeded up for you

julie

In thyroid treatment , " " <cherimoya@...>

wrote:

>

> I don't want to have to self medicate but if they really can't see

me

> until 23rd July, and if the 24 hour salivary test shows low

cortisol,

> would you in my position consider self medicating, for example with

> 20mg cortef daily from an online pharmacy?

>

> Anyone else had to wait longer than 2 months for a short synacthen

> with the NHS?

>

>

>

[Guest guest]

Hi Jane

Thank you so much for your reply. Where do you buy your Cortef from,

and do you also take DHEA? What dose are you taking? I am seriously

considering self medicating because I simply cannot carry on feeling

like this. My allegies are crazy at the moment despite taking

antihystermines and I feel really exhuasted all the time. Also have

muscle weakness and permanent viruses, and constant low blood sugar.

I'm so pleased to hear that taking Cortef has improved your health.

You sound so positive! Do you have a medical bracelet (such as

medicalert) or anything to say that you are taking cortef, incase

anything happens? One thing that scares me about self medicating is if

I got sick and couldn't keep down the medication I would not have the

option of hydrocortisone injection (without an s diagnosis) and

could go into withdrawal very quickly. Also in the event of a car

accident, or needing surgery, there would have to be a way of

informing the medics. I am curious to know, how have others who self

medicate got around these issues? And do any of you wear medicalert

bracelets to say what medication you are taking? Also if I had to come

off the medication, for example if the laws changed and I couldn't

order any off the internet, yet at the same time did not have adequate

stock to come off it very gradually, now that is a scarey thought too.

> I never did get my short synacthen test! I was meant to have had one

> after my endo appt in December, but the half-witted " doctor " who was

> covering my usual endo didn't bother to organise one. My usual endo

> was then meant to organise on for me after a consultation in Feb, but

> this hasn't happened.

>

> From what I can gather, this test will only show whether you have

> 's disease, which is very rare, and even then, the test isn't

> that reliable. If the saliva tests show low cortisol, which I suspect

> it will as it did for me, then buy some Cortef and treat yourself.

>

> It's like a magic pill. No more yawning and exhaustion! I'm not sure

> how long I'll have to take it for, but I don't care. Problems with

> Armour aside, I've not felt this good in a long time!

>

> Good luck! Jane

[Guest guest]

Hi

Just wanted to wish you the very best of luck for the 14th. It sounds

like you really have been through a tough time. I suppose I should be

grateful that the NHS at least take my Hashimotos seriously and

medicate me hugely on 150 mcg thyroxine and 90 mcg liothyronine.

Probably far too high of a dose, because of the desperate need for

cortisol. I do worry that the short synacthen won't show the extent of

my problems and that the NHS won't be prepared to see the salivary

test results, or will kick me off their books. There is something in

the news at the moment about a lady who had cancer and paid out

privately for a drug that the NHS refused to give her, following that,

the NHS then refused to give her any treatment at all. Apparently they

have a rule that if you chose to go the private route the NHS should

then refuse to treat you for that illness in the future? Utterly

ridiculous! My endo was OK about me medicating with Armour a few years

ago, not sure how she would feel about cortef though, because its

implications are rather more serious I suppose.

Take care, I wish you the very best of health and hope that the Doctor

you are seeing on the 14th is able to help you.

Hi

> sounds like you have similar experiences with nhs as me no they are

> not happy to look at your salivary tet results as they are a new

> test not recognised on the nhs i had normal cortisol levels and

> synathegan test showed normal. the salivary test is more reliable

> and accurate but ony a private integrated dr will recognise them i

> have been ill in hospital twice nhs says do not have adrenal

> insufficency but salivary tests showed they i did have so refused to

> do anything. one point in your favour is you having low cortisol

> blood levels in morning just shows there is definately a adrenal

> deficency going on i had been taken a herbal substitute liqorice

> for adrenal deficency and look forward to seeing private doctor on

> 14th no you are not alone as i discovered there are many more people

> out there i have throid hashimotos thyroiditis which i discovered by

> myself getting my blood test results from my dr which drs not

> worried about until your tsh goes above 10 not listeneing to

> patients only there blood tests i have been off work for over 6

> months now

> julie

[Guest guest]

Hi

This is quite appalling and you do NOT have to accept this. Send a copy

of the letter you have written here immediately to your local Primary

Care Trust, with a copy to the Head of Practice at your surgery. Tell

them how ill you are and that you are finding the standard of care from

the NHS appalling. This is YOUR health, and there are always doctors on

call when other doctors are away on holiday. Do NOT take their word that

a short synacthen test cannot be done until late July. There is no

poiont in your seeing your endocrinologist without these test results.

However, I would definitely take your NPTech Results to both your GP and

your consultant and tell them that it is because of their lack of care

that you felt the need to go outside of the NHS to get the tests you

need. Remind them again, this is YOUR health and you will do whatever

you can to regain it.

She either of them try to tell you that they do not recognise NPTech

Services or their results, assure them that NPTech Services is a growing

independent clinical laboratory, which is run and managed by registered

health professionals (HPC registered). Tell them that NPTech Services is

inspected and accredited by the UK Clinical Pathology Accreditation (UK)

Ltd (CPA), a body which is nationally recognised as providing a set of

quality standards for pathology laboratories, both public sector (NHS)

and independent. In its endeavours to provide an ongoing quality

service, NPTech also subscribes to National External Quality Assessment

Schemes (NEQAS/WEQAS) which exist to promote good laboratory practice in

clinical laboratories in the UK by external assessment

It is estimated that up to 70% of patients' diagnoses depend on

pathology laboratory tests. It is essential, therefore, that

laboratories ensure that the services they provide are fit for that

purpose and that continual improvement is a number one priority.

Should they still refuse to recognise the results you put before them

(especially as they have dismally fialed to test your adrenals

themselves, then make it very clear that you will take this matter

further. If you need any help with this, just shout.

We allow doctors to push us around all over the place without saying a

word, but the time does come when you say " enough is enough " .

Assertiveness is what you need here . It might be an idea to write

all this down ready to send a letter to your GP or

endocrinologist before you see them so they know exactly where you are

coming from and that you NEED them to take your NPTech results

seriously, otherwise, you need a letter from them telling you EXACTLY

the reason WHY they do not recognise NPTech.

Luv - Sheila

>

> Hi. Having posted in this group a couple of weeks ago (thank you for

> all your replies) I am once again having problems with the NHS. I have

> hypothyroidism and take high doses of medication (levothyroxine and

> liothyronine) and have supressed TSH despite low frees. My endo tested

> my morning cortisol which came up low at 130 nmo1/l (range 250 - 850).

>

> I last saw the endo on 28th May and she said she would organise a Shot

> Synacthen Test which would take place " within the next two weeks " . I

> telephoned last Monday as I hadn't heard anything and the two weeks

> was almost up, and I asked if it would be within the next week or so

> as I am feeling quite unwell. I was told again that time " I can't say

> but it should be within next two weeks " . The Endo's secretary

> telephoned me today to ask me to come in on 23rd July for the test!

>

> This will mean it has been two months from the date the endo said it

> would be done within 'two weeks'. Also I am due to see the endo again

> on 16th July, which is before I will even be having the test. Their

> excuse for not being able to do the test until 23rd July is that " we

> don't have any doctors there until that date as they are all on annual

> leave " . I asked if it can be done at a different hospital in the

> meantime, but she (the Endo's secretary) said no.

>

> I have also done a 24 hour salivary adrenal stress test and sent it to

> NPtech this morning. Should hear in a week or so. But apparently the

> NHS won't even look at those results? I wonder if my GP will be angry

> if I show the results to her when they come through. Or if my Endo

> would be angry and take me off her list if I post a copy of the

> results to her? Anyone else have experience of this?

>

> I'm feeling worse and worse each day. I've had a virus for four weeks

> now and just can't shake it off, but the NHS aren't interested. I am

> so exhausted I can't even put that feeling into words. If what they

> say is true and they really don't have any Doctors until 23rd July, it

> makes you wonder what they do if they get someone in with an s

> Crisis, let them die because there isn't a Doctor there?

>

> I don't want to have to self medicate but if they really can't see me

> until 23rd July, and if the 24 hour salivary test shows low cortisol,

> would you in my position consider self medicating, for example with

> 20mg cortef daily from an online pharmacy?

>

> Anyone else had to wait longer than 2 months for a short synacthen

> with the NHS?

>

>

>

[Guest guest]

Thanks Sheila. Great reply, have printed it. Once I get my NPTech

results I'll get into action. Can any of you advise how long it took

to get your NPTech results back? I posted them yesterday morning, but

apparently the samples have to settle in their fridge for a couple of

days before they can test them?

>

>

> Hi

>

> This is quite appalling and you do NOT have to accept this. Send a copy

> of the letter you have written here immediately to your local Primary

> Care Trust, with a copy to the Head of Practice at your surgery. Tell

> them how ill you are and that you are finding the standard of care from

> the NHS appalling.

[Guest guest]

Hi

I buy my Cortef from www.internationalpharmacy.com. I bought a bottle

of 100 x 10mg tablets, which I then cut in half to take. I take 4 x

5mg per day; the first on waking, then four hours later, then four

hours later than that and then just before I go to bed. I worked up to

this following the instructions on the stop the thyroid madness

website (google them if you've not yet visited their site).

I don't have any medical alert bracelets or anything like that and my

GP doesn't know I'm doing this. However, because I haven't got any

other medical problems (other than the hypothyroidism), I don't think

it matters too much for me. If you suffer from other problems, it

might pay to be cautious. I was so desperate by the time I got my

saliva results back, I couldn't face trying to convince my GP that

they were worth listening to!

I was really nervous about self-medicating but am glad I've taken

matters into my own hands. Good luck! Jane x

[Guest guest]

Once they have received your results , it usually takes about a

week, though they mght email you the results before then.

Luv - Sheila

>

> Thanks Sheila. Great reply, have printed it. Once I get my NPTech

> results I'll get into action. Can any of you advise how long it took

> to get your NPTech results back? I posted them yesterday morning, but

> apparently the samples have to settle in their fridge for a couple of

> days before they can test them?

>

>

>

>