Re: My Daughter's SST Test - what a fiasco!

[Guest guest]

Hello ,

Thank you for your reassurance - I feel alot better knowing that the timing is

not all that important for my daughter. Yes, you have got it right re: all the

timimg of the test and bloods etc. I didn't find out what blood tests they were

running, though the paed originally said that she would be looking at TSH and

thyroid antibodies. Don't know if there is anything else.

Interestingly, my daughter has been alot better today - the headache has not

been bothering her until this evening when it got really bad again. She says

that she hasn't felt so stiff or tired and she looked a diffferent child. I

presume that this must be something to do with the cortisol response. Yesterday,

she said that she didn't feel any different.

I will let you know the results when I get them - the paed will be writing to me

apparently. Maybe if someone does have primary 's then they would act

alot quicker ( I hope so!)

Best wishes,

> How very annoying, but at least your daughter has got that behind her

> now... the test will most likely be all right, but why have a handbook

> outlining the procedure and timing when they then don't follow the

> instructions? Presumably they are there for a good reason......

> grrrrrrr.......

[Guest guest]

Often after having the injection of Synacthen, some patients

feel absolutely fantastic afterwards but this is usually a temporary measure

only. It is caused because the adrenals have been stimulated. The effect can

last up to 24 hours.

Luv - Sheila

Interestingly, my daughter has been alot better today - the headache has not

been bothering her until this evening when it got really bad again. She says

that she hasn't felt so stiff or tired and she looked a diffferent child. I

presume that this must be something to do with the cortisol response.

Yesterday, she said that she didn't feel any different.

.._,___

[Guest guest]

Thanks Sheila. Do you or anyone know if people feel well on the day of the test

- is the effect of the stimulation quite quick? It is just that my daughter said

that she didn't feel any different on the day of the test, but felt so much

better when she woke the next day.

She is back to feeling awful today!

Best wishes,

> Often after having the injection of Synacthen, some patients feel absolutely

> fantastic afterwards but this is usually a temporary measure only. It is

> caused because the adrenals have been stimulated. The effect can last up to

> 24 hours.

[Guest guest]

Hi ,

I had an SST while I was in hospital not long ago - I felt great within 5 mins

and jumped out of bed and went walkabout to the Cafe for

a coffee, tookit outside and had 2 cigarettes one after the other lol.

Strolled back up to the ward just in time and had the blood drawn 30 mins later.

No one told me I was meant to stay where I was lol.

Even stranger - both my TT3 and FT4 had been falling for months, they

even did 24 urine to see where all the replacement was going....didn't

show up there either. My liver function was elevated though.....

Next day liver function was normal and I had a FT4 of 15 and better

still - FT3 of 5.1.......weird but good.

Love Tess

>

> Thanks Sheila. Do you or anyone know if people feel well on the day of the

test - is the effect of the stimulation quite quick?

>

[Guest guest]

wow Tess, thank you so much for posting - great within 5 minutes - that is a

really quick reaction. Feeling good enough to walk around as well - my daughter

was quite happy to lay on the bed the whole time, luckliy I knew from the advice

gave me on here that she needed to stay laying down! We were not told

either. My daughter did not experience feeling great within 5 minutes - more of

a delayed response - delayed by hours! She has also told me that her breathing

was better the following night and morning, perhaps this is related to better

thyroid function as a result of extra cortisol. She also started to sweat -

something she never does.

Hope that the test was useful for you.

Love

> I had an SST while I was in hospital not long ago - I felt great within 5 mins

and jumped out of bed and went walkabout to the Cafe for

> a coffee, tookit outside and had 2 cigarettes one after the other lol.

>

[Guest guest]

Hi ,

I can't remember whether anybody said they felt no difference on

the day of the test, only that some say that after the test and for the next 24

hours, they felt pretty good, after which time, they started to get back their

rotten symptoms again.

Luv - Sheila

Thanks Sheila. Do you or anyone know if people

feel well on the day of the test - is the effect of the stimulation quite

quick? It is just that my daughter said that she didn't feel any different on

the day of the test, but felt so much better when she woke the next day.

She is back to feeling awful today!

[Guest guest]

I felt rotten on the day of my test, simply because I had to get up 4 hours

befor my usual getting up time, to get to the hospital by 9AM. I had hoped the

test would give me a boost, but I felt no diffrence and infact almost went to

sleep. The following day was an ordinary crap day.

xx

>

> Hi ,

>

> I can't remember whether anybody said they felt no difference on the day of

> the test, only that some say that after the test and for the next 24 hours,

> they felt pretty good, after which time, they started to get back their

> rotten symptoms again.

>

> Luv - Sheila

>

>

>

>

[Guest guest]

Yeah ,that quick - it was quite weird at first like I could feel it rushing

to my head.....and I liked it lol - probably quickest I've

moved this year :-)

They marked mine normal but it's to be redone....Cortisol was 147 or thereabouts

on the first blood test - 495 after 30 mins.

Hope your daughters will be ok.

Love Tess

>

>

> wow Tess, thank you so much for posting - great within 5 minutes - that is a

really quick reaction. Feeling good enough to walk around as well - my daughter

was quite happy to lay on the bed the whole time, luckliy I knew from the advice

gave me on here that she needed to stay laying down! We were not told

either. My daughter did not experience feeling great within 5 minutes - more of

a delayed

>

[Guest guest]

Dear ,

After my DW had a Synacthen test, she had by then been in hospital a week or so and this was part of the work-up ~ anyway she wanted to go shopping that very instant (5-10minutes after the injection).

She'd just had a week's worth of twice daily cardiac arrhythmia ( with torsade de pointes ~ and lived ). They didn't think she should have been with us by the Friday of that week ~ anyway another hospital offered to take her in ( and their consultant was not on holiday ).

So, she got a cardiac defibrillator, a complete adrenal hormone 'refill package', quite a few mineral replacements and as many calories as she could tolerate.

A text-book example of thyroid storm with weak adrenals, hypokalemia inducing anorexia, hypomagnesemic induced long QT gap etc.

Can give the lecture if needed .....

best wishes

Bob

illustrates the critical importanc of doing the adrenal test before giving 'buckets of thyroxine'.

>> Hello ,> > Thank you for your reassurance - I feel alot better knowing that the timing is not all that important for my daughter. Yes, you have got it right re: all the timimg of the test and bloods etc. I didn't find out what blood tests they were running,

[Guest guest]

Dear Bob,

Goodness me. Thank you for replying - what an experience and thank goodness your

daughter finally got the right help that she needed. I am still very confused

with my daughter's symptoms as she is overweight and one Dr has described her as

Cushingoid, yet all the cortisol test are low. Still, will have to wait for the

SST results.

Best wishes,

They didn't think she should have been

> with us by the Friday of that week ~ anyway another hospital offered to

> take her in ( and their consultant was not on holiday ).

>

> So, she got a cardiac defibrillator, a complete adrenal hormone 'refill

> package', quite a few mineral replacements and as many calories as she

> could tolerate.

>

> A text-book example of thyroid storm with weak adrenals, hypokalemia

> inducing anorexia, hypomagnesemic induced long QT gap etc.

>

> Can give the lecture if needed .....

[Guest guest]

Thanks Sheila.

x

> I can't remember whether anybody said they felt no difference on the day of

> the test, only that some say that after the test and for the next 24 hours,

> they felt pretty good, after which time, they started to get back their

> rotten symptoms again.

[Guest guest]

Thanks Tess - we can't wait for my daughter's results. My daughter liked the

feeling of feeling well too - it was just a brief glimpse though!

Love,

> Yeah ,that quick - it was quite weird at first like I could feel it

rushing to my head.....and I liked it lol - probably quickest I've

> moved this year :-)

> They marked mine normal but it's to be redone....Cortisol was 147 or

thereabouts on the first blood test - 495 after 30 mins.

>

> Hope your daughters will be ok.

[Guest guest]

Thanks for replying . Sorry to hear that the test made no difference to you.

Were the SST results normal?

x

> I felt rotten on the day of my test, simply because I had to get up 4 hours

befor my usual getting up time, to get to the hospital by 9AM. I had hoped the

test would give me a boost, but I felt no diffrence and infact almost went to

sleep. The following day was an ordinary crap day.