reaction to synacthen

[Buffstera]

A day and a half ago I had SST (9am cortisol 170 nmol/L, fatigue, Orthostatic Intolerance, mild hyperpigmentation, fertility issues, hypothyroidism, pernicious anaemia)

Still waiting for results but also still have side effects, has anyone else experienced this?

I got really flushed in the test itself along with nausea, dizziness, fatigue, mild leg pain, tinnitus and confusion. Next day I woke up with lower back pain either side and still brain foggy, which has continued today. Feel like I ran a marathon and have the same ‘flare’ type symptoms I get after extreme stress or activity.

[SlowDragon Administrator]

What’s the range on SST result - 170 looks low

I got really flushed in the test itself along with nausea, dizziness, fatigue, mild leg pain, tinnitus and confusion. Next day I woke up with lower back pain either side and still brain foggy

Yes that is the experience of some members

What are your most recent thyroid and vitamin results

Which brand of levothyroxine are you taking

How much levothyroxine are you currently taking

Hopefully not still left on 75mcg

Presumably you have Hashimoto’s?

Have you ever had thyroid antibodies tested

Are you now seeing endocrinologist

List of recommended thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

[Buffstera in reply to SlowDragon]

170 was my morning cortisol (100-650)

Waiting for SST result

I’m on 100mcg Levothyroxine and have not tested positive for the antibodies but I only tested for that once a few years ago, at the point of original diagnosis. TSH recently 1.34 and FT4 around 15 or 16

I supplement vitamin levels so they’re ok at the moment.

I just wasn’t expecting any reaction and the nurse was surprised by my reaction to SST so wondered about others’ experiences

[Marshmello1 in reply to Buffstera]

Did you get your results? They managed to give me my pre-injection result of 169 n/mol but failed to get my after injection result due to me flaking out. Docs referring me to endocrinology now

[Buffstera in reply to Marshmello1]

Baseline was 108nmol/L and post-test was 459nmol/L , ACTH was 20

Issue is it was done just before 3pm so baselines are meaningless, and I’d taken my ADHD meds, which I now know increase cortisol. Plus they tested loads of other stuff for which I supplement daily or needs to be done at a specific point in menstrual cycle.

My follow up appointment isn’t till Feb 2024 but I’m trying to find out if I need to restest. Will you see someone soon?

[Marshmello1 in reply to Buffstera]

Ah interesting so I take defetamine for my sleep disorder which I know they use for some adhd patients too. I asked my gp that question about wether my meds would in theory raise my cortisol, she never answered. I took my meds on both days I has cortisol checked. She's asked for me to be referred urgently what ever that means.

Such a minefield isn't it 😮‍💨

[Marshmello1 in reply to Buffstera]

169 was my morning cortisol that day

[Buffstera in reply to Marshmello1]

Total minefield. Mine was 167 originally and GP didn’t want to refer me at all. It took 3 months & a letter from a cardiologist to get them to agree to a routine referral. Endocrinology department wanted me tested immediately as soon as they got it, but that’s why I got an afternoon appointment - it was longer wait for 9am

[J675]

I had an SST last week and I felt similar to what you described, but not quite as bad. In my case, the reaction turned out to be my body's need for additional support and more thyroid hormones. I'm desperately undermedicated as I can't tolerate anything more than a small dose of T3 at the moment. I had a bit extra T3, which not only settled these feelings but I could also tolerate the extra for once. Unfortunately, that only lasted a couple of days.

[Buffstera in reply to J675]

Oh interesting - what were your TSH/FT4&3 levels? I didn’t know being under medicated on thyroid could cause that reaction in SST

[SlowDragon Administrator in reply to Buffstera]

Being under medicated for thyroid can lead to adrenal exhaustion

Adrenals try to compensate for lack of thyroid hormones

It becomes chick and egg…..low thyroid levels leads to low adrenal levels…and low adrenal levels can make it difficult to tolerate increasing levothyroxine

[J675 in reply to Buffstera]

T4 was -92% (yes, minus) and my T3 was 23% through ranges. My TSH was something like 0.02. Pre SST my cortisol was 270. But I'm fine, apparently, and there's nothing wrong with me (according to the lazer sharp private endo who I actually had to pay for this wisdom).

[Buffstera in reply to J675]

Minus 😦 I didn’t know possible

[Marshmello1]

I had my test Monday and flaked out within 2 minutes of being injected. Eyesight went first, then the hearing, sweating so much it was pouring off my fingers. Blood pressure sank through my boots. And weirdly my sweat smelled like urine? Nurse said I will unlikely get a result as they couldn't draw blood at 30 minutes mark due to them having to put me on a bag of fluids in one arm and anti sickness in the other. 😮‍💨

Did feel wobbly for a couple of days afterwards and still not 100% today. Strange.

Hope you feel better soon.

[Buffstera in reply to Marshmello1]

Omg!!! That sounds awful! I’m feeling much better now thanks, not 100% but way better. What was your morning cortisol if you don’t mind sharing? Have you had results yet (if they got enough blood)?

[Marshmello1 in reply to Buffstera]

Not had results of the first bloods yet . The intial 9am cortisol was only on the lowish side just over 300. A month or so ago.

Been feeling absolutely awful for ages. Constant low blood pressure. Dizziness, heart palpitations, fuzzy headed, lack of concentration, extreme tiredness (but I do have idiopathic hypersomnia) , muscle aches, nausea, headaches, upset stomachs, random sweats, waking up same time every bloody night, just feel so old!!

My ferritin is way down so on iron tabs. They've also assumed I've gone into perimenopause at 38 as I had a hysterectomy at 34. So on hrt.

[Marshmello1 in reply to Marshmello1]

The 9am cortisol was a result from a month or so back. Not had this weeks morning results. That didn't read very well

[Buffstera in reply to Marshmello1]

Gotcha. Yeah I’ve been getting random joint swelling and the feeling of fever. A family memory has cortisol not much higher than mine and has had severe (taken to A&E) cramps and pain 😕

[Marshmello1 in reply to Buffstera]

Oh wow bless them that's awful.

[Jumbelina]

I had a synacthen test a few years ago, ordered by an endocrinologist. (I have Hashimoto's.) What I remember about the test is that as (I imagine) the cortisol kicked in, I had a pronounced sinking feeling in my stomach and a feeling of apprehension and dread. On the other hand, if I'm given adrenaline (It's sometimes in dental anaesthetics and I can always tell) I become very agitated and unable to sit still- I have to pace about.

[Buffstera in reply to Jumbelina]

I wanted to nap! Had no dread at all just overwhelming sense of ok, bed time now 😭

[Marshmello1 in reply to Buffstera]

I forgot to add that bit as well , all I wanted to do was sleep after