Steroids. SHORT SYNACTHEN TEST looking for help please!

[boudy14]

a few seconds ago boudy14

Morning cortisol level 4.2, having ecth test, anyone tried the steroids?

Good afternoon

Looking for advice please. I was diagnosed with ME in November and since then been having various tests. Genova did my adrenals, morning level 4.2 and by the eve 0.8. Anyway long story short the nutritionist was costing a fortune so saw endocrinologist. He knew nothing of the adrenal support dr wilsons I was recommended to take and also said Genova can give false results!

On Monday I'm having the short synaceth end test but am worried what steroids he will suggest

Anyone got experience if this? Are my results low? What have you tried? I am completely lost in this as the docs just want yo stuff me full of pills

Thanks x

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[Hidden]

Hi boudy14, what was your total cortisol for the day? My total was 15.3 range 22-41, I got sent for a short synacthen test and told my results were normal. I often faint, have lost all my underarm hair and most of my pubic hair, and i've read these can be symptoms of low adrenal function. I shake, have nausea, and can't cope with any kind of stress. My gp even said because I had 6 years of steroid injections into joints, this would have caused problems with my adrenal function. But nothing, no treatment!

My advice is don't expect anything from this test!

[beaton in reply to Hidden]

Total agree,synacthen test is useless .I too used to have steroid jabs but was advised against having any more because of the adrenal effect. x

[Hidden]

Yes, total waste of time, unless you have Addison's nothing seems to get treated. Really poor, yet again people are just left to suffer. Xx

[boudy14]

I think the total was about 15? The doc saw these results from Genova and almost poo pooed them! He seems good this endo dr but I am equally going to push for more answers as I'm off work ,have a beautiful boy who simply cannot see his mummy as unwell as I have been the last few months xx

[Hidden]

Hi boudy14, my doctor saw my adrenal stress profile and just said I don't know how to interpret them! So I said just look at the total and ranges!

Just out of interest boudy, do you get a lot of diarrhoea and have really weak painful legs and feet? Something I just can't get rid of. I inject B12 and thought it was nerve pain, but to be honest it's not much better. Pain is awful in my calves for the last 9 years, ring any bells?

Hellish being a mum like this, mine are grown up, but I have small grandchildren, who stay quite a lot, I know what you're saying, just totally wiped out all the time.

Do you have any fainting? We seem to have similar levels. I'm fainting a lot in the shower, and if I try to do too much physical stuff.

I hope you get some answers. X

[boudy14]

Hi helcaster. Sorry to hear of what your going through. It's tough and frustrating. This was the endocrinologist that I am now seeing. My doctor holds her hands up and says she has no knowledge of this and my cfs/fibro

Luckily no I do not get bad tummy but do get leg pain presumed it was the fibro? No fainting either

What were u recommended? X

[Xanthe]

Hi Boudy14,

I know I have adrenal fatigue - Dr P tested me a year ago and confirmed this. Since then I have improved using Nutriadrenal extra (NAX) and following the lifestyle and nutritional guidelines in Dr Wilson's book. However, an illness knocked me back big time last summer and when I was retested my cortisol profile was as flat as a pancake. That scared me so I put myself on a physiological dose of bio-identical hydrocortisone (HC) (Adrenal Max Support from Regenerative Nutrition) as well as NAX. I checked with D P who confirmed that it was the right thing to do (for me). My GP had organised a short synacthen test (SST) which was judged to be "Normal" so the endo would not treat me - in Dr P's view my adrenals might stand up to day-to-day levels of stress, but not anything bigger, so I must carry on with the support. I'm due to review that soon and maybe start to reduce the HC dose. As far as I understand it the SST is only really useful for identifying the extremes of adrenal problems, but you can still be ill with problems at a lesser level

I also have ME and have read much about it over the past few years. I suspect that some people diagnosed with ME may have treatable thyroid and/or adrenal problems. Either way, check out Dr Sarah Myhill's website - there's alot of useful information there and guidance for htose unable to see her (she is so busy that she has closed her patient list)

[boudy14 in reply to Xanthe]

Hi xanthe. Thank your for your reply. I am new to all this so can you tell me what nax is? & hc and sst?,

I have read dr wilsons book and do follow some of the points. I take the dynamite adrenal but am noticing no differences hence me now seeing an endo. I'm tired out by mid morn and cannot keep living like this as have a young son who needs me

You mentioned the stress, I am the same, can deal with little things but anything more sets me back. I think I recognise what is the adrenals ans what is the ME now

[helvella Administrator in reply to boudy14]

You will find many of the abbreviations used by people here (and generally in relation to thyroid) are here:

dl.dropboxusercontent.com/u...

Rod

[boudy14 in reply to helvella]

Thank you

[Xanthe in reply to boudy14]

HI Boudy, the abbreviations in brackets are for the words written beforehand in my original message, so NAX = Nutri adrenal extra, an adrenal support nutritional supplement used by many people.

[boudy14 in reply to Xanthe]

What is the difference of bio identical hoc the adrenal support and hc from docs?

[Xanthe in reply to boudy14]

As far as I understand it, bio-identical HC is a molecule that does the same things as HC. Apart from this I'm not sure how or whether it differs much from HC the GP might prescribe. Dr P loked at my tablets and was quite happy with them. Adrenal Max Support is the product name or the bioidentical HC that I use. As an alternative, oyu can buy hydrocortisone cream over the counter at chemists. "Adrenal support"v used more generally can mean anything that does just that - support the adrenals, including nutritional supplements such as NAX which hep the glands rebuild.

[hogie82 in reply to Xanthe]

Hi Xanthe,

I too am seeing Dr P who has advised I may need some hydrocortisone if my increased dosage of NAX doesn't start to pick me up.

I was wondering how your recovery is and what dosage of the adrenal max support you were taking and whether you weaned off of it quite soon?

Thanks

[Xanthe in reply to hogie82]

Hi Hogie,

I was on 2.5 adrenal max support tablets. I had been at this level for about a year alongside bioidentical hydrocortisone I bought from Nutri-Link Ltd. I have recently reduced the adrenal max to 2 tabs/day and the Hc to 2.5 mg/day (from 10mg).

I have also cut out my Nutrithyroid as I am having a short synacthen test soon. I shall try reducing the adrenal max to 1.5 and see how it goes for a few weeks. So far, I have felt more fatigued and stressed than usual - I'm not sure if this is due to lack of thyroid support or the reduced adrenal support. When I last saw Dr P he warned that I might need some form of adrenal support for the rest of my life.

I'm sorry that I can't be more specific - I find that you have to experiment a bit and alter doses according to how you feel.

Good luck!

Xanthe

[hogie82 in reply to Xanthe]

Thank you. Yes Dr P said the same to me. So if I am correct you were taking about 20mg of cortisone a day? can I ask how long you took to get up to that level and if it made a massive difference to how you felt. I feel like I have struggled for so long and need a boost that I hope hc would give me.

[boudy14]

Wonderful thanks xanthe. The adrenal support you take has a little less than the dynamite I was recommended. I have had to wean off for the sst Monday & can notice a difference already