Adrenal tumour - anyone here with experience wi... - Thyroid UK

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Adrenal tumour - anyone here with experience with it?

Incoguto profile image
14 Replies

Hey everyone,

My aldosterone levels are very elevated at 409 (range up to 190). I'm waiting for the adrenal MRI. My endo said he's suspecting adrenal adenoma since my ACTH was low, blood cortisol high, unable to raise thyroid meds or raising and having symptoms.

Anyone here diagnosed with it or know anything about it?

Thank you 🤗

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Incoguto profile image
Incoguto
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14 Replies
Rollercoaster44 profile image
Rollercoaster44

hi - i had an adrenal tumour but it was a myelolipoma and considered non secreting. I can remember having tests for the aldosterone to check for Conns Syndrome. Have they done urine tests as well as blood? Aldosterone tests from memory can be influenced by other medications and i remember having one test lying down and another sitting up as the ranges were different for each situation. Have they also tested renin levels?. Im guessing you may have high blood pressure too.

Incoguto profile image
Incoguto in reply to Rollercoaster44

Hey, thank you! 😊 was it discovered accidentally if you don't mind me asking?Only blood was done and I had the test upright and the ranges were for the upright position. I wonder if thyroid meds are influencing aldosterone or being hypo. No renin was done yet. I don't have high BP, just normal BP, but it goes higher when I increase thyroid meds. My sodium is low.

Rollercoaster44 profile image
Rollercoaster44 in reply to Incoguto

Yes mine was found after having a liver scan as liver bloods were abnormal. Adrenal tumour and gland removed and everything went back to normal. My sodium is usually only just in range and often slightly below range…..been like that for many years now….and my blood pressure still high and meds dont seem to have that much effect. Hows your potassium levels?

Incoguto profile image
Incoguto in reply to Rollercoaster44

Ah I understand, thank you for the insight. How are you feeling with low sodium? I feel dehydrated and dizzy. No effect of meds on BP? Any ideas why? Just curious.Potassium was 4.2 last time checked some weeks ago (3.5-5).

I'm not optimal on thyroid meds and cortisol is over range

Blissful profile image
Blissful in reply to Incoguto

No renin was done yet

I'm pretty sure that for a fully meaningful interpretation of aldosterone, then renin should be done from the same blood draw i.e. at the same time.

My sodium is low.

Where is potassium?

A friend of mine has primary hyperaldosteronism. Over a 20 year period he was prescribed various drug cocktails for high BP and none of them worked. Eventually renin was tested and he was prescribed spironolactone.

A random link:

healthline.com/health/hyper...

My friend in an Octogenarian - you are as yet a young girl so I hope you get to the bottom of everything in a more timely manner :)

Incoguto profile image
Incoguto in reply to Blissful

No renin unfortunately, I did a private test in a lab at my own request because I had electrolyte imbalance and didn't know at the time I needed renin too.Potassium is 4.2 (3.5-5.1), but once it was as low as 3.5.

Oh wow...20 yrs with no relief. I'm 39, but have been unwell for 6.5 years. Hopefully will get to the bottom of it soon, thank you so much x

Rollercoaster44 profile image
Rollercoaster44

feel fine with the low sodium…or at least i think i do., although my hubbie reckons i drink alot of fluids. Possibly some tiredness and muscle weakness but that could be thyroid or just about anything else as im at that special age for a female. As for the blood pressure meds not being that effective who knows and all the docs ever seem to want to do is try another tablet alongside……tried that once with amlodipine and felt dreadful. Im not too sure where my cortisol is. A saliva test done about 9 months ago suggested low levels and my gp wont do a cortisol test as says its not necessary. Im sure the MRI scan will reveal all.

radd profile image
radd in reply to Rollercoaster44

Rollercoaster44,

I'm always low in salt too and have found adding salt to my water helps not only rehydrate better but raises sodium levels to within range. This has stabilised my BP too. I use Dr Myhills Sunshine Salt just because it's supposed to have all the minerals in. If I exercise (& sweat a lot ) I use an electrolyte drink which has helped improved my stamina.

Incoguto profile image
Incoguto in reply to radd

I do the same, everyday I drink electrolytes and put good quality salt in my food and juice or water. Still sodium is a bit low, but in range. However, I am hypo so, that doesn't help!

radd profile image
radd in reply to Incoguto

Incoguto,

I know elevated angiotensin causes high aldosterone that contributes towards the usual bloating during a women cycle, and I’ve been reading your posts with interest as years of untreated/mistreated hypothyroidism usually results in low aldosterone levels.

The adrenals leak salt and craving salty foods due to the urinary losses is common in hypos. When working well, potassium & sodium have an inverse correlation but a hypos induced low sodium levels are another symptom ignored by conventional medicine due to misunderstanding, as potassium levels don’t always correlate high.

Low sodium doesn’t have the same immediate dangerous implications of elevated potassium but is still an important determinant of several biological pathways in the nervous system, and especially the brain. This is functional medicines belief of the POTS association (also common in untreated hypos) because of plasma volume deficits and diminished aldosterone-renin ratios (mine was appalling for years).

The renin-angiotensin system helps control vasoconstriction and increases BP but adrenal dysfunction basically ****s this up. There are emerging very definite markers in determining an 'adrenal fatigue/HPA dysfunction' diagnosis but conventional medicine simply over look it all.

You would assume that elevated aldosterone would withhold more salt and opposed to releasing it 🤷‍♀️. Anyway, I’m pleased for you that an adrenal tumor has been eliminated.

Incoguto profile image
Incoguto in reply to radd

Hey radd🤗thank you, this is really interesting. I have read one study somewhere that hypothyroidism can cause high aldosterone too, because of some issues with antidiuretic hormone, so kinda holding the salt in (I have water retention), but also not having enough of it in cells because I'm hypothyroid (does this even makes sense lol).Absolutely agree, I had an episode when my sodium dropped to 127 (range was 135-145), I went to A&E because of severe dehydration, was losing conscioussness, was vomitting and couldn't walk, so I'd say low sodium can have such detrimental effect. Only here in Poland one of the doctors said that low sodium is a hypo symptom and she told me to put salt into everything.

Incoguto profile image
Incoguto in reply to Rollercoaster44

Thank you 🤗 my mri scan od adrenals came back clear, so onto the next thing!

Shellian profile image
Shellian

Check put the AMEND website , lots of info on Pheochromocytoma and symtoms on there.

Incoguto profile image
Incoguto in reply to Shellian

Thanks Shellian❤️it seems nothing was found on my adrenal glands or abdominal area

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