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Could this be Addisons?

(9 Posts)
orchid29 Sun 29-Sep-19 18:05:45

I've been feeling terribly for three months now with fatigue, joint and muscle pain, heart palpitations and low blood pressure (last time it was taken was 90/70 but that a month ago when I was not as bad as I am now). My vision seems off and I have serious memory and concentration issues. So far all my blood results came back normal with my vitamin D being at the bottom of the normal range.

I researched this a bit and I came across Addison's disease. two things made me stop and take notice: 1) it is more likely to go hand in hand with hypothyroidism (I have that but all my levels are normal) and 2) I have developed hyperpigmentation in my face and a few other places on my body a few years ago which is supposedly typical . I had my cortisol levels tested and they were low but within the normal range (172nmol).

I spoke to a GP and she agreed to refer me to an endocrinologist but the next appointment is 3 months away! I cannot wait that long as it is really impacting my work (basically only working 50% and just a question of time until my boss notices) and so am thinking of going privately. Do people think it is likely enough to be Addisons for it to be worthwhile?

What is putting me off is that I don't have any weight loss though I am craving salt and very thirsty. My hyperpigmentation is also not particularly in creases and scars which I think is typical. I had my sodium levels checked two months ago and they were fine, though at the time I was not feeling salt cravings like I am now.

JulietTango Wed 02-Oct-19 03:06:25

Cortisol levels vary so much during the day that without knowing the time your blood test was taken it's difficult to say if it's normal or not.
Eg at 9am they should be close to 400. At 3pm in the afternoon your 172 could be considered high and at 4am it could be as low as 30 and still be quite normal. Although i do understand your test wouldn't have been taken at that time of day.

A lot of your symptoms match Addison's. Nausea and vomiting is a big one too (?).

Tiredness, I was sleeping around 20 hours a day.

My hyperpigmentation was that bad it was like washing off a fake tan each time i showered.

Salt cravings - i could drink a cup of hot Marmite made with 2 teaspoons of Marmite.

I wouldn't rule out Addison's on your symptoms and yes it's worth getting an SST which is the diagnostic blood test but be aware if you're still producing cortisol it can be counter productive because a lot of endos see that you've reacted to the ACTH and think you're ok. If you do have this test make sure they also test your ACTH when they take the baseline cortisol. You'll know whether they do this because it needs to be put on ice immediately and tested straight away.

It can also cause low blood sugar because cortisol tells the pancreas to stop producing insulin. So if there's no cortisol you'll just go on producing insulin and have low blood sugar.

Puddypuddy Tue 08-Oct-19 22:59:53

It's sounds very like daughter was diagnosed in January.She had hyperpigmentation,low bp,rapid heart rate,no appetite,salt cravings,dizziness & exhaustion.
I think you should go to A&E & also google signs of an adrenal Crisis.It's a rare disease so very often misdiagnosed.

orchid29 Wed 09-Oct-19 10:07:21

Thank you for all the advice.

@JulietTango, yes I should have mentioned the time of the blood test, sorry. It was 172 at 9:30 but then I redid the test once at 12:50 and it was 245, which makes no sense to me. I was somewhat more stressed when I was taking the second test, but I though if I did have Addison's it wouldn't be able to increase my cortisol levels in response to stress, or am I misunderstanding this?

I don't do marmite smile but I am quite happy eating pure miso paste...

@Puddypuddy thank you for your advice, I am a bit hesitant to go to the A&E because they keep thinking I am just making things up and send me home. I did google the signs of the adrenal crisis though, thank you for recommending that. Out of interest, did your daughter have any muscle pain and weakness at any point?

For the moment I feel a little better and am looking into a few other avenues with my GP while I am waiting for the two months until my endocrinology appointment.

ToLiveInPeace Wed 09-Oct-19 10:19:18

Another possibility for your symptoms is postural orthostatic tachycardia syndrome, along with (often together) hypermobility syndrome. GPs and even cardiologists don't always know about POTS, so worth doing your own research. Hope you find some answer soon.

ToLiveInPeace Wed 09-Oct-19 10:23:42

Might be useful:

MiniMum97 Wed 09-Oct-19 10:27:49

What are your vitamin D levels and when you say your last results were in normal range what they they with the ranges.

LetsSplashMummy Wed 09-Oct-19 10:28:55

I had a lot of similar symptoms just from sodium deficiency (I have a gut absorption complication which can cause this). I drank diorolyte (sp?) every two days until my BP improved.

If it is Addisons or not, you can probably alleviate some of the worst symptoms by hydrating. Also, my GP always says "up to 3 months.." and the appointments are often much sooner. Good luck, keep making a fuss!!

JulietTango Wed 09-Oct-19 19:54:22

Lots of people have variable cortisol readings while their adrenals are failing but not yet dead. That could explain the higher reading at lunchtime. Normal adrenals experience a smaller peak around that time. I have a graph which shows the levels which could be expected with normal adrenals. If you'd like this let me know.

And to answer a question not directed to me, yes I had muscle weakness and aches before diagnosis.

If you look at that Facebook page linked above please ignore the people posting about adrenal fatigue. It isn't a medically recognised condition and the saliva test is of no use in diagnosing Addison's. It's more commonly used to diagnose Cushing's.

For what it's worth the symptoms I experienced above were when my SST results were
Baseline 0
30 minutes 0
60 minutes 0

Do you have problems with low thyroid? With me it slowed my metabolism enough that my bodies cortisol requirements were lower than they should have been.

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