Addison disease and thorough testing query? - Thyroid UK

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Addison disease and thorough testing query?

Hi all,

I have been wondering about adrenal fatigue/ Addison’s disease and came across the following.

If Addison’s disease is suspected, blood tests will be carried out to measure the levels of sodium, potassium and cortisol in your body. A low sodium, high potassium or low cortisol level may indicate Addison’s disease.

I had a test for Cortisol but no idea what the result was only that I was never called by my GP so assumed everything was fine. I’m now wondering if my cortisol was low but perhaps in ‘range’. Because it’s common practice for TSH, T4 and T3 to be in range when someone is actual hypo I was wondering if it’s common for adrenal fatigue to be mis diagnosed in the same way.

After looking at my sodium and potassium results I was wondering if I should be concerned and ask my doctor to complete a thorough test. I would be extremely grateful for any comments members have?

My results are in range but sodium was low in the range and potassium was high. Probably nothing but I’d hate to miss some5ing that could help me in my quest to get better.

Sodium 136 range 133- 146

Potassium 5.2 range 3.5- 5.3

I have a low basal temperature and pigmentation on my face, increased thirst and frequent urination, if that means anything.

Kindest regards everyone 💐

19 Replies
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The problem is, most doctors don't believe adrenal fatigue exists. If you don't have Addison's (very, very low cortisol) or Cushing's (very, very high cortisol) then you must be 'fine', according to their thinking. It's all black or white, no grey areas.

You had a serum cortisol test, I imagine? You should get the result from the doctor, it's YOUR result. But, even so, blood cortisol tests are notoriously unreliable. What you need is a 24 hour saliva cortisol test, where you take four samples throughout the day. But you wouldn't get that from the NHS.

But, in the meantime, try and raise your sodium by consuming more salt - sea salt, of course. Adrenals need salt. They also need lots of B vits (but get your B12 and folate tested first) and loads of vit C! Try and get plenty of sleep, and a high protein breakfast when you get up in the morning. :)

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GreyGoose thank you! I will follow your advice meticulously. Where would I get the cortisol test from? I will phone the GPs on Monday and see if they can locate my previous cortisol test, it will be interesting to see if it’s in range.

Why don’t the NSH do the saliva test?

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Too expensive. Also, very few doctors would understand the results.

Have a look on the TUK main page, under the heading 'testing'. I think you can get it through Blue Horizon, or someone like that.

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Ok brilliant will take a look. I’m going to ask my GP regardless if she turns me down and it transpires there’s a problem, I think I will throw one! I’m really fed up with all this crap! Bet you’ve been there done that and got the Tshirt! Not sure how you do it 😂

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Sounds like a good plan.

Every time I've mentioned adrenals to a bog-standard GP, they just stare into space and keep repeating 'adrenals… adrenals… adrenals…' as if they're trying to remember where they are. Or what they are! Never got anywhere except with the hormone specialist I saw in Paris.

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GreyGoose, you do make me smile😜

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:D

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greygoose

WOW !!! Great Advice . Thank You greygoose . You Get It !!! Personally I found that till my vitamins where not up to par and some added sea-salt I could Not raise my T3 /NDT . Most Dr's do not know anything about adrenals . I read a Great and very Valuable book by Dr Wilson "Adrenal Fatigue: The 21st Century Stress Syndrome ".

amazon.com/Adrenal-Fatigue-...

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Thank you. :)

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greygoose

It's a Pleasure that you and Only a handful Truly "GET IT " . Adrenals and Thyroids work in unison . It's a Big shame that many thyroid patients who are in dire need of T3/NDT can not benefit from them because of their adrenals being fatigued /insufficient . I had TT and was dosed on high T4 Only doses for years . Healthy thyroids make Both T3 and T4 . When I was allowed to finally dose with T3/NDT I had difficulty because my adrenals took a beating over the years .

I very Strongly Urge/Advice for any thyroid patient to Please address Adrenals prior to dosing with any T3/NDT for a successful Outcome . Most thyroid patients who finally do dose with T3 and are not successful blame it on the T3/NDT .

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Yes, but that's just not an option for so many in the UK. And doctors won't help them, even if there is a problem. So, they're rather stuck. Unless the find their way on here, that is. But, imagine, so many hypos who don't even have a computer. And others who do, but don't think about using it.

My first reaction, sitting in front of my computer, was to think 'I need a book!' lol So, I went onto Amazon to look for a book on thyroid - seems rediculous in retrospect, but that was the path of logic my brain took. So, on Amazon, there were so many books about thyroid! I closed my eyes and just pointed at the screen. And, as luck would have it, the book I was pointing at was Mary Shomon's 'Living Well with Hypothyroidism'. And, it was at the end of that book that she mentions her forum. And then the penny dropped! Oh, yes! I can research on internet! lol And, the rest is history. :)

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greygoose

Your a Million percent right . You won't get any disagreements from me. It's a Big Shame on the Dr's Part for not testing adrenal insufficiencies . What I'm saying is for those who Can to please have the vitamins at least Optimal so that adrenals can tolerate T3/NDT . That is why Great Forums like ours are growing by leaps and bonds because thyroid patients are not getting the care they need . They are seeking and searching for answers to their questions . Hopefully they get some answers from thyroid patients experiences on our forum .

I'm in US and when I told my Dr that I was having adrenal discomfort . His answer was "Don't Worry in two weeks you'll be fine ". So I guess it might be a Global Problem . Adrenals are either misunderstood or not enough is known about it ? Not enough attention paid to it . It's a Shame .

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Oh, I'm pretty sure it is a global problem, yes. :(

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Just because your doctor didn't come back to you regarding your cortisol test doesn't mean it was OK. You need to get a copy.

I've just had a doctor (private) have a hissy fit that a 2 year old cortisol test of mine wasn't followed up on. (I have no idea why I didn't push for follow-up, probably because I felt so let down by everything). She said it could be Addison's and must be repeated so I went to my GP to ask for a repeat and again (new GP) looked at the result and said "could be Addison's" and ordered the test right away. I get the results on Tuesday.

I have a list (from the private GP) of follow-up tests to ask for depending on the results of this one.

To be honest I'd hold off on the 24hr saliva test until you find that old test result because your GP will not take one jot of notice of it if you show him your result. I've had so many of them over the years, all they did was stress me because I couldn't fix the issue and no one else was listening! By all means, if your GP test comes back in range but a bit low or rather high, then do a private test because there is something you can do to try to fix things. But no one will take any notice of it for diagnosing Addison's disease so it's a waste of money if that's what you are looking for help with.

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Hi FancyPants54, thanks for the response. Do you know what your Sodium and Potassium levels were at the time of the test? I’m interested in low sodium high potassium being a precursor for diagnosis?

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No. No idea. They have not been tested.

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Hi rosserk,

just a word about the saliva tests. I had them done privately and then recently saw an endo privately ( who I have managed to get to see on the NHS, so my follow up will not be out of my pocket) . He said that he uses saliva testing, blood results are not so useful.

I have excess cortisol, not reduced levels. He did a physical and said he can't find any evidence of cortisol issues but as he had seen my saliva results, he would investigate further, when I see him on the NHS.

Regarding sodium/potassium, I had hair analysis done and that showed both my potassium and sodium were hugely excessive ( bloods towards top end of range). Maybe a hair analysis would give you further info? Not sure any Dr will be interested in it though.

All the best

Sueb

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Hi, thanks for your response 💐

I have next to no chance of getting my Doctor to refer me to an Endo and zero chance of her taking any notice of private tests.

I’ve just had an MRI that revealed I have a double foot fracture and reptured ligament. I injured my foot two years ago and it took two years for them to find the problem, I think trying to get a diagnosis of adrenal fatigue would be impossible! 😭😭

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Well that doesn't surprise me:-( my daughter has gait issues and managed to fracture a tiny little bone under the big toe. Xray person showed me the fracture on the screen. When the letter went back to the GP they said there was no fracture. I had a crush injury on my big toe area several years ago, no fracture apparently but you should have seen the state it was in. Anyway, I still have lose of function and nerve damage but I can walk, so I guess that's ok ;-(

If you can afford it, go Private for initial diagnosis, then you have ammunition :-)

All the best

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