Still feel awful without HC, don't know what to do

[Guest guest]

Hi,

I was on 20mg of hydrocortisone. I stopped it too quickly. I feel awful.

Started it again but since I have been at leas t a week on 5mg or nothing

(because I thought it was causing me heart problems) I restarted it on 10mg.

I don't know if it's too quick or if I should go back on 20mg immediately.

I feel awful, lots of dizziness, nausea, headache and I am very very anxious,

can't sleep at night. These look lack of HC symptoms to me.

I don't know what to do. Please help.

Vivien

[Guest guest]

Do you have an adrenal saliva test results from genova that you can post and

then maybe someone could tell you an " ideal " starting dose according to your

results.

Its dangerous to keep stopping HC as when you go on a high dose your body stops

producing its own cortisol, also taking a small dose ie 10mg can be counter

productive as its not giving your body enough hc that it needs but yet your own

cortisol production is slowing down.

Steve

>

> Hi,

> I was on 20mg of hydrocortisone. I stopped it too quickly. I feel awful.

> These look lack of HC symptoms to me.

> I don't know what to do. Please help.

> Vivien

>

[Guest guest]

Hi Vivien

How did you stop it? how quickly i mean?

how long were you on it?

are you under the care of any doctor?

when i was told to come off hc i was told to do it very slowly, over about 4

weeks, and i was only taking 10mg at the time!

what happens if you take more, do your symptoms go/lessen?

chris

>

> Hi,

> I was on 20mg of hydrocortisone. I stopped it too quickly. I feel awful.

[Guest guest]

Dear Steve,

I was told I could come off it pretty quick, but obviously I did it too quick.

I know it's dangerous. I made a mistake. My doubt now is if I can go back on

20mg immediately or if I have to increase it gradually since I didn't take it

properly for about 10 day.

I am on 10mg now but I really feel awful, so I wonder if I have to go back

immediately to 20mg.

My starting dose was 7.5 first 10 days then 10mg next week, then 15mg next week

and then 20mg next week.

Thank you for your help.

Vivien

>

> Do you have an adrenal saliva test results from genova that you can post and

then maybe someone could tell you an " ideal " starting dose according to your

results.

>

[Guest guest]

Hello

I was told that I could stop it fairly quickly, but obviously I did it too

quick.

Yes I have been stupid I know, but now I need help please.

I was on HC for 3 months, I had worked my way up to 20mg which I have been on

for the last 2 months.

I was decreasing it for about 10 days and at the end I was having chest pain so

I stopped it completely because I was scared, but of course I made things worse.

I didn't take anything for 2 days. My last dose was 5mg.

Then I started it again on 10mg and the chest pain disappeared but I have severe

dizziness, nausea, headache, anxiety, insomnia, depression, muscle pain etc.

Yes I am under the care of a doctor but at the moment I can't get hold of him.

I went to the hospital last Friday to check my heart and it's ok but the

endocrinologist there told me to go back to HC immediately and I stupidly didn't

ask him how quickly.

He told me to go back to my dose and then decrease it 2.5mg every fortnight. I

will do that.

But now I need to know if I can go back on 20mg immediately because on 10mg I

feel very unwell.

I am scared to take more, that's why I have been waiting until today to take

15mg.

I feel a bit better today but I still have dizziness.

My question is how long do I have to wait before I can go back to 20mg?

I am scared I will overdose as before all this happened I had been messing

around with my doses for 10 days.

I so desperately want to go back to 20mg even today. Do you think I can?

Thank you for your help.

Vivien

>

> Hi Vivien

>

> How did you stop it? how quickly i mean?

> how long were you on it?

>

> are you under the care of any doctor?

[Guest guest]

Its a tricky one with HC you dont usually work up to a certain dose and start

low, hc you ideally want to start at quite a high dose.(20mg can be considered a

high dose)

Im not one to advise but if it was me i would go to 20mg and then start tracking

my temps imediately, to get an idea if its a good enough dose and then if its

just low thyroid causing the symptoms or you if need more hc.

Steve

>

> Dear Steve,

> I was told I could come off it pretty quick, but obviously I did it too quick.

> I know it's dangerous. I made a mistake. My doubt now is if I can go back on

20mg immediately or if I have to increase it gradually since I didn't take it

properly for about 10 day.

[Guest guest]

I was on HC for 3 months, I had worked my way up to 20mg which I have been on for the last 2 months.I was decreasing it for about 10 days and at the end I was having chest pain so I stopped it completely because I was scared, but of course I made things worse.I didn't take anything for 2 days. My last dose was 5mg.Then I started it again on 10mg and the chest pain disappeared but I have severe dizziness, nausea, headache, anxiety, insomnia, depression, muscle pain etc.Yes I am under the care of a doctor but at the moment I can't get hold of him. I went to the hospital last Friday to check my heart and it's ok but theendocrinologist there told me to go back to HC immediately and I stupidly didn't ask him how quickly. He told me to go back to my dose and then decrease it 2.5mg every fortnight. I will do that.But now I need to know if I can go back on 20mg immediately because on 10mg I feel very unwell.I am scared to take more, that's why I have been waiting until today to take15mg. I feel a bit better today but I still have dizziness.

Hello Vivien,

I can't advise as I am not a doctor, but if it were me, I would go back to 20 mg from tomorrow and hold it there and see how it goes. If we are talking about HC and not prednisolone, then 20 mg is still a physiological dosage and you won't have to worry about overdosing.

The doctor who told you to stop the HC immediately was incredibly stupid. He should know better, but unfortunately he is not alone with this incredible lack of understanding the adrenal function. Follow the advice of your endocrinologist. Go back to 20 mg for a few days or so (it will be ok) and then very, very gradually reduce by 2.5 mg every fortnight and you should be all right.

Best wishes,

[Guest guest]

Hi Chirstina,

thank you for your reply.

In now way I am blaming the doctor, he only said " pretty quickly " . I took that

" pretty quickly too far " . I TAKE FULL RESPONSIBILITY. I was stupid.

Thank you!

Vivien

> Hello Vivien,

>

> I can't advise as I am not a doctor, but if it were me, I would go

> back to 20 mg from tomorrow and hold it there and see how it goes. If we

> are talking about HC and not prednisolone, then 20 mg is still a

> physiological dosage and you won't have to worry about overdosing.

>

> The doctor who told you to stop the HC immediately was incredibly

> stupid. He should know better, but unfortunately he is not alone with

> this incredible lack of understanding the adrenal function. Follow the

> advice of your endocrinologist. Go back to 20 mg for a few days or so

> (it will be ok) and then very, very gradually reduce by 2.5 mg every

> fortnight and you should be all right.

>

> Best wishes,

>

>

>

[Guest guest]

Hi Vivien

no one will think you stupid, so please don't think that.

When you were on 20mg, did you feel better than you do now? When did these

symptoms come on?

> I didn't take anything for 2 days. My last dose was 5mg.

> Then I started it again on 10mg and the chest pain disappeared but ***I have

severe dizziness, nausea, headache, anxiety, insomnia, depression, muscle pain

etc.***

Did these come on when you took 10mg, or are they lingering symptoms? If they

are lingering, then could it be they are lingering because 10mg was enough to

take away the chest pain, but not the other problems?

> He told me to go back to my dose and then decrease it 2.5mg every fortnight. I

will do that.

> But now I need to know if I can go back on 20mg immediately because on 10mg I

feel very unwell.

> I am scared to take more, that's why I have been waiting until today to take

15mg.

When I was given HC on the NHS, i was given 30mg and told to taka it in 2 doses,

20mg, 10mg. They didn't say build up to it.

> I feel a bit better today but I still have dizziness.

> My question is how long do I have to wait before I can go back to 20mg?

20mg is a physiological dose.

> I am scared I will overdose as before all this happened I had been messing

around with my doses for 10 days.

ok well if you stabilise on 20? How were you taking it before? Can you take

the same dosing schedule?

> I so desperately want to go back to 20mg even today. Do you think I can?

Bear in mind that people do start on 20mg, even 30mg, and 'stress dose' (rightly

or wrongly) by 5mg, or 10mg at a time. HC is not to be taken lightly but you

are taking physiological doses.

Are you recording all of this - ie, wake up feel bad, and take 5/10mg hc, and

feel better/worse? That will help you know whether HC is making you better or

worse.

I would listen to your body - you are only taking physiological doses, listen to

the endo you saw and get in touch with your other dr asap.

have you read this page:

http://www.stopthethyroidmadness.com/adrenal-info/

>

> >

> > Hi Vivien

> >

> > How did you stop it? how quickly i mean?

> > how long were you on it?

> >

> > are you under the care of any doctor?

>

[Guest guest]

don't be so harsh on yourself! you did what you thought - and were told, or

were led to believe - was right.

Chris

>

> Hi Chirstina,

> thank you for your reply.

> In now way I am blaming the doctor, he only said " pretty quickly " . I took that

" pretty quickly too far " . I TAKE FULL RESPONSIBILITY. I was stupid.

> Thank you!

> Vivien

[Guest guest]

When I was on 20mg I felt great. Full of water retention but great. That was the

perfect dose for me. I was taking for 2 months 20mg divided in four 5mg doses a

day and I felt great.

I started feeling unwell when I decrease it.

All the symptoms that I have now came when I stopped the hc but I was confused

and I didn't know ho to start taking it again.

I took 15mg today and feel better.

Listening to my body told me that being on 10mg was too low for me.

Yes I have been monitoring my temperature and pulse every day and there is no

difference as when I was on 20mg of HC.

Thank you for your help.

Vivien

>

> Hi Vivien

>

> no one will think you stupid, so please don't think that.

>

> When you were on 20mg, did you feel better than you do now? When did these

symptoms come on?

[Guest guest]

Ok well that says a lot

have you had any synacthen tests done? 9am cortisol, with CBG, too? Urinary

free cortisol?

Chris

>

>

> When I was on 20mg I felt great. Full of water retention but great. That was

the perfect dose for me. I was taking for 2 months 20mg divided in four 5mg

doses a day and I felt great.

> I started feeling unwell when I decrease it.

[Guest guest]

In now way I am blaming the doctor, he only said "pretty quickly". I took that "pretty quickly too far". I TAKE FULL RESPONSIBILITY. I was stupid.

Hello Vivien,

No, you were not stupid, just inexperienced with the use of HC. But you will have learned from this episode and in future you will know what to do J

I am a bit concerned about your comment about having water retention when on HC, but nonetheless feeling great. Has your doctor ever checked your electrolytes (Na and potassium)? Might be worth doing.

With best wishes,