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Hormone testing in Australia

beaverfury

beaverfury
Messages
503
Location
West Australia
I naively asked my GP if I could get a full range of hormones tested to get some idea of my levels.

He replied that spending public money on these tests was morally indefensible as they wouldn't indicate anything treatable. I get his point even if I am a bit miffed with his wording.

I asked what would be morally defensible to test and walked out of his office with only testosterone and thyroid tests made available.

How are other Aussies accessing diurnal cortisol testing, ACTH stimulation, DHEA testing etc ?

Are there private labs in Oz that will test these ?
 

Gingergrrl

Senior Member
Messages
16,171
He replied that spending public money on these tests was morally indefensible as they wouldn't indicate anything treatable.

Wow, that is so horrifying I don't even know what to say :mad::bang-head:. Can you see a private endocrinologist or only by GP approval? There is a 24 hour saliva cortisol test that you can do on your own and send to the lab but not sure if available in Australia?
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
It's almost at the point in Australia as a male you need to have your clackers cut off before they will treat you for low testosterone as we have very narrow ranges before they will treat. As for dhea cortisol or high estrogen in men they won't treat any of these, unless cortisol is tested low and further testing shows addisons.

You may get a script for testosterone creams but these don't seem to work in the majority of guys long term. Injections are the gold standard treatment but the govt are making it even harder to get. Most gps wouldn't risk their license prescribing testosterone injections because of the whole drugs in sports propaganda .

antiaging and alternative docs may test more and prescribe testosterone creams dhea etc but you will pay a lot extra. The cost of dhea in Australia is ridiculous as compound pharmacies are ripping us off costing approx $50 a month where overseas prices would be a few dollars a month if that. To order in dhea from overseas is illegal unless you have a special import license, are prescription isn't enough.

I think using the drugs in sport propaganda for deny hormone therapy is BS, but also think maybe big pharma can make more money from all the conditions low testosterone causes such as depression, pain, arthritis, diabetes, etc. Instead you may get a prescription to treat depression caused by low testosterone.

I'm not sure what the answers are for these issues in Australia. I have heard of guys with just hormone problems not cfs, living in Thailand etc where treatment is easily accessible and cheap as chips. But I wouldn't try bring anything into this country as more than likely end up in jail even amounts for personal use.

I would be interested to know if anyone knows any different or if things have changed or knows of a good Dr.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
@Gingergrrl A GP needs to refer you to an endocrinologist in Aus. I'm guessing an endocrinologist would have much the same attitude.

My GP thinks testing is only necessary if I was showing clear symptoms of adrenal failure. Ho-hum.

I guess if I want speculate and play detective with my hormones I can't expect Tony Abbott to pay for it.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
@heapsreal I didn't realize it was like this in Oz. I suppose I have been reading a lot of PR and assuming we had similar options to US citizens.

No matter. I'll just put the hormone testing on the backburner for the moment.... along with life, career, relationship etc.
I might get my clackers cut off anyway, just for good measure.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Situation is as heapsreal said in Australia.

The difference we have from the England ME/CFS situation is they get pushed into GET and CBT and the psych views of things where as here in Australia we will just get completely ignored by most doctors as far as tests and also even treatments for the abnormalities they do find if we did manage to get the test. I saw over 30 doctors before I found one even willing to try to treat my symptoms!!! (this was a country area)... the situation can be quite crazy here.

..............................

beaverfury.. You could try going to a Qualified Naturopath (by that I mean Government accrediated as they all are meant to be here now but check) and asking for things like 24hr cortisol test. (cortisol testing is a good one). They'd have no problems at all helping you get that test.

I managed to FINALLY convince a doctor to test my cortisol by copying online news articles on the finding that those who have CFS tend to have low cortisol (and someone from the CDC in this article was saying that too, thou they didnt endose treatment but I used that to back up I should be tested).

By that article I did finally manage to use to get a doctor to do 24hr cortisol urine testing (your doctors should of done a morning blood cortisol test as that is a fairly standard general test most of us our doctors do without us asking but that test often misses our cortisol abnormality)

My 24hr urine test, was abnormal 2 out of 3 times this test was done (irronically the doctor then said the reason was cause i dont do exercise and said "just exercise more" to fix it"). Interestingly in my cause my normal cortisol blood tests are always normal range, so my cortisol must be very very low at another time to make my 24hr tests abnormally low by the lab range.

.....


Many with ME/CFS do have low testosterone and all guys with low energy should have this tested as a standard thing.. if your doctor hasnt done that.. you need to get rid of him.

Thou Im female and my normal testosterone level "seemed normal" by that test result, it turns out it wasnt.. I dont know about males but in us females it has to be "free tesosterone" checked and there is also a certain ratio thingy too used to see if its ok. Turns out I had basically almost zero when these better tests for it were done with someone who was a specialist in this (but my normal GPs didnt know enough to do right tests and know how it should be with ratio).

My specialist (gyno actually) inserted a testosterone implant in me to help my testosterone deficiency.. unfortunately I am majorly sensitive to that (turned me into a sex crazy person who was too sick to have sex and made me feel aggressive.. not pleasant). I think every female with ME/CFS Ive come across who has had testerstone for their deficiency with this has bad reactions to it, it seems to give a lot better result for males.

Ive have normal endocrinoligsts fairly useless when it comes to ME/CFS hormonal issues, they have no idea even what to look for and are usually so far up themselves that they get offended if one oftens suggestions for tests. (ive seen 2-3).

I do have a GP who many with CFS goes too who has a special interest in hormones.. people other doctors cant fix go to him and swear by him (non CFS people). So I went to him and he aims for "optiminal ranges" of things too rather then just within range which for some eg if they are just within.. they still could have an issue.

Due to new rules in Australia last year, there has been a big crackdown on doctors like that who prescribe outside of the what most other doctors do. They've even now put new rules onto these ones so they are far more limited in how many tests they can do.. You used to be able to go to one of those doctors and he'd order soooo many tests, it was great. Now there are limits and if gone over "per appointment done", medicare wont cover, with these doctors carefully watched. So this new rule requires a person to have to go to the doctor over and over and over till all the tests are done. Its crazy.

eg I got caught with this again not too long ago with my allergist this time. He didnt want to do skin testing on me which would test lots of things at once as I dont know what I reacted so badly too an ambulance had to almost be called, he said I could get same reaction throu a skin test and he wasnt willing to do one without knowing what thing to avoid which caused my issue. So instead he wants to do the safer blood tests for the various allergens, trying to find out.

Turns out the blood tests are under that blood test limit rule..and only a few can be done at a time and I dont have any idea what I ate that meal which did it as I ate LOTS of things. So this is going to mean 3-5+ visits to him just so I can get all the blood tests I need to work out my allergies as they arent now allowed to do many tests at once.

So he's had to give me an epi-pen with me having no idea what I reacted too as Im too sick to be able to keep going back so I can have more blood tests.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@heapsreal I didn't realize it was like this in Oz. I suppose I have been reading a lot of PR and assuming we had similar options to US citizens.
.

The states of Australia really vary too as far as ME/CFS goes. Western Australia is a terrible state for it, my cousin is there and she never got a ME diagnoses even thou she has severe ME and saw lots of doctors and specialists and ended up on a disability pension at 17-18 years old for an "unknown" illness.

She found in WA all the doctors and that she saw believed ME/CFS was a psych illness and hence they wouldnt diagnose her with it as they could see she ws very ill. (she had been an athlete with a scholorship at the WA institute of sport. she had been hoping to be in the olympics). I guess the doctors think only lazy people get ME/CFS too and hence she didnt qualify.

East Australia is the better states for this illness, they even get things like heating and cooling rebate if you have ME/CFS and problems with heat there. In SA.. that is a discluded illness for it and I cant get even thou I go unconscious in the heat and have ended up in hospital needing a drip when Ive got too heat affected.

All the better doctors for ME are on the East side of Australia. SA doctors are "CFS" ones.. believers in the PACE trial and that CBT may help thou we have no CBT experts here for CFS so one is never sent to one for CFS (thank God for that) . I find CFS doctors still helpful as at least throu those if one pushes them hard enough if you can find the energy to do that, one may be able to get some treatment for a few symptoms. (before I found CFS specialists, I got no treatment at all for anything)

CFS specialists are interesting too as each has their own little interest area...eg one of mine thinks CFS is caused by food issues (he's right into insulin issues so had me tested for those and I did have hyperinsulinemia), another thought that half of causes were due to rickettsia so used to test all his CFS patients for that (half of them in Adelaide had that but not me..that's one thing you may want to put down on your list for maybe one day testing), another his area of CFS interest is hormones and MTHFR issues.

I ended up with 3- 4 different CFS specialists at once, as I was trying to cover all the areas of my issues and they never seem to be interested in any of the others just their own interest with it. Many of them work soooo slowly too, it may take 3-4 visits before they finally decide to treat a symptom. At that rate I would of been seeking treatment for my symptoms for the next 300 years (so it helped having more then one of these specialists).

Im nowdays under only 2 CFS specialists (which Im trying to get back too) but thinking of also adding another . as thou he doesnt treat the symptoms I have, he thinks the other specialists in this state are backward (he's a bit ahead of those) so Im thinking maybe he could be good for paperwork support at times when Im battling something (he may understand the PACE trial was screwed up).
.......

Is the Western Australia ME/CFS society still inactive? Sometimes one can find better doctors for us throu our societies that's how I found my specialists.
 
Last edited:

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
The states of Australia really vary too as far as ME/CFS goes. Western Australia is a terrible state for it, my cousin is there and she never got a ME diagnoses even thou she has severe ME and saw lots of doctors and specialists and ended up on a disability pension at 17-18 years old for an "unknown" illness.

She found in WA all the doctors and that she saw believed ME/CFS was a psych illness and hence they wouldnt diagnose her with it as they could see she ws very ill. (she had been an athlete with a scholorship at the WA institute of sport. she had been hoping to be in the olympics). I guess the doctors think only lazy people get ME/CFS too and hence she didnt qualify.

East Australia is the better states for this illness, they even get things like heating and cooling rebate if you have ME/CFS and problems with heat there. In SA.. that is a discluded illness for it and I cant get even thou I go unconscious in the heat and have ended up in hospital needing a drip when Ive got too heat affected.

All the better doctors for ME are on the East side of Australia. SA doctors are "CFS" ones.. believers in the PACE trial and that CBT may help thou we have no CBT experts here for CFS so one is never sent to one for CFS (thank God for that)


More doctors and more competition on the east side helps. But with rising health costs over the last decade every govt has been trying to find ways to cut costs.

From where I see it the public health system is always about saving money and the private system is about making money. With cfsme we aren't even stuck in the middle because we don't have a recognized illness.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
@taniaaust1 Yeah, I might have to find a good Alternative doctor or accredited naturopath in Perth.

More money thrown around getting to know new medical professionals. As you say, they often have their own bias towards treatment.
I thought there might be some private lab facility where you just pay for specified testing.

WA still is the wild west. Even the doctors have banjos.

The WA me/cfs society is active. The site doesn't have doctor recommendations tho. I will just google one up.
 
Messages
15,786
@taniaaust1 - Have you tried specifically using your tachycardia as a way to get the cooling rebate? Heat tends to raise heart rate as a way to cool off (by circulating more blood close to the skin) when you get too hot, but that isn't a great thing to be doing when the heart rate is already way too high.