SYNACTHEN TEST

[Ladybex]

Has anyone heard of this test or know about it please... just had phone call from hospital saying I should have it and I don’t understand ....

[MaisieGray]

Yes it's a common enough test of adrenal insufficiency. Under normal circumstances, pituitary ACTH stimulates the secretion of cortisol from the adrenal gland, and the test is based on the measurement of your serum cortisol level before and after an injection of synthetic ACTH is given to you.

[Ladybex in reply to MaisieGray]

Thank you Maisie ... I’m feeling so unwell and hoping for Dr’s to determine exactly what’s wrong...

[MaisieGray in reply to Ladybex]

Hope it's useful for you Ladybex . Let us know how things go.

[Ladybex in reply to MaisieGray]

I will hun and wishing you well

[HLAB35]

Try and get an early appointment for the test.... you also don't want to be left waiting too long by people faffing about (like what happened to me) as I believe it is possible to get a false normal result if you do it later in the morning.

[McPammy]

I’ve had two synacthen tests last year. They normally do this test at 9am. As this is when ones cortisol is supposed to be at their highest level. They will take a blood draw to check your cortisol. They will then give you an injection of false ACTH. ACTH stimulates your adrenals to produce cortisol. Cortisol is our own natural steroids. Which fight illness and gives us strength in the fight or flight scenarios. Once you’ve had the false ACTH injection they will take another blood draw to see how high your cortisol has risen after 30 mins. They should also do your ACTH bloods and T4, T3, TSH.

You won’t feel anything except maybe some strength returning if you are low in cortisol and your adrenals are not working well.

This test is to determine if you have Addison’s disease or not. Addison’s is when your adrenals are failing. Your adrenals sit in top on your kidneys and produce cortisol when required.

When I had both my synacthen tests last year i past. Meaning I haven’t got Addison’s. However, my Cortisol remained too low. After a terrible year for myself, I finally went private and found out I am a poor converter T4 to T3 and also had a positive DIO2 gene test. I had suffered with Hashimotos for 11 years on T4 Levothyroxine only. Once I finally started on T3 medication my cortisol went from 68 (155-607) to 466 within 4 weeks. T3 medication was my answer to low cortisol and also my Hashimotos. I had remained under medicated for 12 years. I should have always been in T4/T3 together. No my weight is reducing, my skin is almost perfect and most importantly my strength and energy has never been so good for over 12 years. If you pass the synacthen I would look into T3 medication helping if your cortisol remains low.

The test is straight forward and you shouldn’t feel anything negative from it.

Good luck 😉

[Ladybex in reply to McPammy]

Wow thank you mcPammy that is great info ... will keep you updated and wishing you well 😊

[hemp66 in reply to McPammy]

How much roughly will it cost to go private TAI

[McPammy in reply to hemp66]

Sorry I haven’t any idea how much a synacthen test would cost privately. I had mine on the NHS.

You could call a private hospital. Try Spire or somewhere similar. I’d guess you’d need to see an Endocrinologist also though privately.

Can you request this test via your GP or Endocrinologist. If your cortisol is low it should be done automatically on the NHS.

[Ladybex in reply to hemp66]

Sorry I don’t know private cost... mine is under NHS ...

[katemimi1 in reply to McPammy]

Would you be able to give me the details of the doctor you saw privately please.

[SlowDragon Administrator]

Are you still only taking 25mcg Levothyroxine?

This is only halfa standard starter dose of 50mcg

Anyone over 50 years old may be started on 25mcg, but dose should increase upwards

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

[Ladybex in reply to SlowDragon]

SlowDragon yes I’m still on levo 25mcg ... I’m 65 and tbh it’s not helping me, I’m still so poorly ....now Endocologist wants me to have a SYNACTHEN test ??

[vocalEK in reply to Ladybex]

Endocrinologist is scrambling for an explanation for your symptoms that does NOT implicate him or her in keeping you ill by withholding necessary thyroid medications.

[Ladybex]

Slow dragon ... still on Levo 25mcg ... I’m 65 but tbh I’m still ill it isn’t doing anything to help. Now waiting to see Endocologist who wants me to have a SYNACTHEN test ?

[humanbean]

One thing to be aware of is that when doing an SST test blood will often only be taken for cortisol testing. But in order to get full information from the test they must take blood for an ACTH test as well, and the sample for ACTH must be taken directly to the lab, on ice.

Read pages 68 - 70 to understand what the test involves :

imperialendo.co.uk/Bible201...

Make sure the test is carried out between 8am - 9am, skip breakfast until after the test, get to the hospital in plenty of time, don't be dehydrated, talk as little as you can get away with, don't have an argument with your partner or your kids, avoid road rage.

[Teresamarie]

Hi Ladybex

This test is easy to do. Something absolutely different from hypothyroidism. It is s test for cortisol in your system through the day. I have secondary adrenal insufficiency and four once this was addressed I immediately felt better but took almost a year to get right. Forge on my friend. It sounds like you are being tested because of something your endo sees. The good people here will help you through.

Best to you

Teresamarie

[Ladybex in reply to Teresamarie]

I really hope so teresmarie I have been unwell for over a year and am told I have hypothyroidism and fibromyalgia ... taking levothyroxine 25mcg and it’s not doing anything 😥

Hoping for solution

Thank you 😊

[Teresamarie in reply to Ladybex]

I take 75 mcg of name brand levo called synthroid. It made a major difference when I switched from generic to name brand. Easy fix for my horrible symptoms!

[humanbean]

Regarding your levothyroxine, your problem, as far as I can tell, is that you are over 60 (I think) and doctors have been told that treating older people for "mild" hypothyroidism is not really necessary because treatment makes no difference to them and their symptoms.

This, as you have discovered, is absolute nonsense. Just because someone is over 50 or over 60 does not mean that they need a lot less thyroid hormone to feel well. You are being kept on far too low a dose, and your doctor is a sadist.

I don't know if you're aware of this...

Blood tests have reference ranges which tell people what is considered to be "normal" (a stupid word in this context).

So, for example, if you had a ferritin (iron stores) test done you might end up with one of these results :

1) Result = 15 ; Range = 13 - 150

2) Result = 85 ; Range = 13 - 150

3) Result = 145 ; Range = 13 - 150

The way doctors read those results is that all of them are "normal" and need no treatment because they are all within range. But which of these results is likely to make the patient feel at their best/worst? Many doctors don't seem to care.

Result 1 - Patient is likely to feel awful because their ferritin is low, they need more iron, and they are likely to feel very tired. Doctors are unlikely to care though. They are likely to leave the patient to rot, when prescribing iron supplements for a few months might make the patient feel better.

Result 2 - This result is considered to be optimal (or close to it) for a lot of people so the patient should feel reasonably okay.

Result 3 - This is a bit high, but the patient shouldn't feel too bad. They are likely to feel better than a person with result 1, but probably less well than the person with result 2.

...

Hypothyroidism - optimal results.

First of all, you should know that an average healthy person has a TSH of roughly 0.5 - 1.5. Yours is much too high for good health.

Free T4 needs to be very roughly 60 - 80% of the way through the range - everyone has a point at which they feel at their best, and it is rarely in the lower half of the range as yours is.

Free T3 needs to be very roughly 50% - 80% of the way through the range - everyone has a point at which they feel at their best, and it is rarely in the lower half of the range. I don't think your Free T3 has ever been measured, or I just haven't seen a result for it.

In untreated hypothyroidism the output of the thyroid reduces, TSH rises, Free T4 (or FT4) reduces and Free T3 (or FT3) also reduces.

When you start to take Levothyroxine (a substitute for the T4 your body can no longer make in sufficient quantities) your TSH should reduce, your Free T4 should rise, and so should your Free T3.

The body takes time to adjust to higher levels of thyroid hormones so increases in Levo dose have to be fairly slow - roughly an additional 25mcg levo every six weeks or so. As your dose of Levo goes up the TSH should continue to drop and your Free T4 and Free T3 should rise.

Your doctor is not giving you enough Levo to make your TSH even remotely close to the average for healthy people - it needs to drop quite a bit more. Your Free T4 and Free T3 are far too low and they need to go up.

You might find this thread of interest :

healthunlocked.com/thyroidu...

According to the table in the picture, healthy people in their 60s have an average (median) TSH of 1.6, and for 95% of people in that age group their TSH lies between 0.49 and 3.6. So again your TSH is way too high.

You need to find a GP at your practice who will increase your Levo by 25mcg to 50mcg per day, then retest your levels in six weeks. I realise this won't be easy. Do you have a husband/partner/adult child who would support you and would help you to get the extra Levo you need in an appointment with a doctor? The other alternative you have is to write a letter of complaint to the Practice Manager at your surgery saying that your doctor isn't listening to you and your symptoms and is keeping you under-medicated. I've never done this myself, and would not do it until or unless I had exhausted all other options.

I always take my husband to doctor appointments with me, but I make sure that he is familiar with the situation I'm in, so he can understand what is going on and back me up when I need it. It keeps doctors more polite, and they are usually more forthcoming when I want something that is reasonable.

[Ladybex in reply to humanbean]

Have taken that all on board .. I am 65 but single and am going to show your message to my daughter so we can look into this better. Thank you hun

[humanbean in reply to Ladybex]

If you want a really good book on the thyroid then this one is very popular. It's the first one I bought for myself and I found it very useful for getting me off the ground with understanding the thyroid and hypothyroidism :

amazon.co.uk/Your-Thyroid-H...

[Ladybex in reply to humanbean]

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