Stopping prednisone for short synacthen test - Thyroid UK

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Stopping prednisone for short synacthen test

dlp5 profile image
dlp5
8 Replies

Hi. I have been on various steroid doses for 10 years or so. I have been on 5mg for the past couple of years. I had a random cortisol test which was late morning and was 36. Another repeat one was 86. So having a short synacthen test. I have to stop my 5mg prednisolone 48 hours before then restart them after the test. Is this safe? I've always been told I mustn't suddenly stop them ??? Will it make me feel ill or anything if I suddenly stop??

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dlp5
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8 Replies
Emyloulou profile image
Emyloulou

I was told to stop mine for 24 hours and I must admit by the time of the test I was feeling quite yuk. I don’t think I’d fancy any longer without taking it.

I failed the sst.

dlp5 profile image
dlp5 in reply toEmyloulou

Hi Emyloulou. How much were you on? And did that mean when you failed you had addison's? Xxx

Emyloulou profile image
Emyloulou in reply todlp5

I was on 5mg split over 3 doses(2.5, 1.25 and 1.25) and yes I have adrenal insufficiency. I know take hydrocortisone rather than prednisolone x

dlp5 profile image
dlp5 in reply toEmyloulou

Can I ask why they gave you the test? Xx

McPammy profile image
McPammy in reply todlp5

The test is to find out if you have Addison’s or not. I had 2 synacthen tests last year. My cortisol was low at 68 (155-607). I past both tests which meant I didn’t have Addison’s. I was put in Hydrocortisone prior to the tests but they omitted to tel me to leave 48 hrs before the test. Then i past!! No wonder!! Anyway I struggled in for over a year of collapsing and could hardly walk. I also have hashimotos was on Levothyroxine only T4.

I found out through going to see a private Endocrinologist that I was hardly converting T4 to active T3. We only use T3 to get our energy from. I was put in T3 medication privately. Within a short space of time I could walk properly again and felt so much better. Within 4 weeks my Cortisol went from 68 to 466!! I needed T3 medication all along.

I’m not sure if you have thyroid issues or if you are on T3 medication???

dlp5 profile image
dlp5 in reply toMcPammy

Hi mcpammy I have quite a few health problems including lupus and others but have been having thyroid type symptoms but with normal thyroid tests. My rheumatologist had at one point done a random cortisol test which was very very low. She omitted to tell me for about 4 months as she's not the most reliable so I then had a repeat one which was still still low so hence the synacthen test. I have been messed about so much I am in a way hoping that they find out that that is the problem. Obviously I don't want Addison's but then if I could get treated I might start to feel a bit better. Thank you for your answer it's really interesting and it's always good to hear other people's stories take care xx

Emyloulou profile image
Emyloulou in reply todlp5

I was tested as I was very symptomatic and starting t3 just made things worse. I was off work for 7 months, lost 6 stone in 5 months, had constant nausea, low bp and blood sugar, tremors etc and just generally felt incredibly ill. Even with a tsh of 147 I didn’t feel that ill.

Although my cortisol levels weren’t horrendously bad at just over 200 my sst was very blunted and only reached 280ish. The steroids gave me my life back and I’m now back at work full time and doing everything I want to do x

dlp5 profile image
dlp5 in reply toEmyloulou

Hi Emyloulou. That's good to hear. I have health problems but also have been having horrendous symptoms on top of my normal health issues. I have been checked thyroid wise although I'm not sure that they did all the tests that are available. I don't know enough about it but from what I have read I don't think I've had them all. Anyway my rheumatologist did a random cortisol test in the morning which was rock bottom. I wasn't told about it for about 4 months because she's not fantastic at keeping up with things. And the best of it is I have been going to the most traumatic time imaginable in my personal life. So I had a repeat test which again was very low. So I am now due to have the synacthen test this week. I am just worried about stopping my prednisolone. I'm hoping that they actually find out what it is that's causing me to feel this way even if that means it's Addison's. perhaps then they will treat me properly and I might start to feel better. thank you for sharing your story with me and for taking the time to answer me. Xx

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