Cortisol deficiency (Addison's??)

[Chip_y2kuk]

So for a long time I've had a problem jumping up too quickly and feeling faint and on occasion passing out... I got told it was postural hypotension and to get up slower and left it at that

I started with what appeared be a return of asthma and was given a steroid Inhaler the fainting and some other issues went away /became noticeably better

I then had to stop asthma medication for a mannitol test and the issue of jumping up and feeling faint came back

I mentioned this to the respiratory consultant and he said "It would be unusual for someone of your age to have postural hypotension, however the inhaled steroid would replace lost/missing cortisol in the body" and I'm being referred to an endocrinologist... this was all while telling me the asthma I've been treated for isn't asthma (I have no detectable markers for asthma)

Could it really be controlled by inhaled steroids (I understand this is just an accident and if it is I'm likely to end up on tablet steroids) ?

What other symptoms am I likely to have?

I've had unidentifiable blood sugar issues after having various tests that where normal, but suffering with in growing hairs and feeling woozy but can correct it with sugary stuff (Lucozade and a mars bar)

High pulse (sinus tachycardia) and low bp.... which gets doctors excited for some reason

I know I need to see the endo, but just curious could it be?

[MaisieGray]

There's generally more to Addison's Disease than simply dizziness on standing; and more causes of postural/orthostatic hypotension than simply increasing age - there's a diabetes connection for instance. I wonder if when you were given your diagnosis, if PoTS was considered? The symptoms of PoTS and orthostatic hypotension can be very similar, & a number of people experience both problems at the same time. People with PoTS have an increase in heart rate of 30 beats per minute or more within 10 minutes of becoming upright (or to more than 120 bpm). Some people with PoTS also drop their BP and, occasionally, heart rate, because the abnormalities in the autonomic nervous system that cause PoTS can also cause a drop in BP. This combination of findings is common in chronic fatigue syndrome for instance.

The reason I mention PoTS apart from its similarity with postural hypotension is that one of the treatments for it is fludrocortisone, a steroid .....

[Chip_y2kuk in reply to MaisieGray]

I've not technically been given a diagnosis respiratory consultant says probably.... But an endocrinologist needs to diagnose it... I was hoping he would link it to a respiratory condition however he linked it to a hormonal issue (this was while he was telling me I most definitely didn't have asthma that I've been treated for for 4 years after it came back and had since I was 9 months old.... I'm 32 now)

[MaisieGray in reply to Chip_y2kuk]

Ill health is not for those without a sense of humour In the same way that the police go back and review unsolved crime cases with the benefit of new techniques, it would be great if all our old diagnoses could be reviewed in light of new knowledge LOL. My similar symptoms with standing up, but also with standing still for any time, were diagnosed by my Neuro as part of my Essential Tremor.

[Chip_y2kuk in reply to MaisieGray]

Tell me about it I went to him with uncontrolled asthma I'm still with him but now we are looking at what it is and I need to see an endocrinologist to look at this potential cortisol related issue

[MaisieGray in reply to Chip_y2kuk]

Good luck, and let us know how you get on with the Endo.

[purple64]

This is interesting I have the same thing and when it's really bad, usually when I am out, I get really sweaty feel faint and once I can sit down with a drink and a biscuit I feel ok. At home I get dizzy from sitting to standing also if I stand for too long. Do you lose your balance? Sometimes I find myself going backwards or to the side. So far no one has told me what is causing it. I did have a cortisol blood test but not heard anything. I also have low BP. I was advised to drink more water and increase salt but doesn't seem to have made any difference. Let us know what they say.

[purple64 in reply to purple64]

Forgot to say I also have asthma 🤔

[Chip_y2kuk in reply to purple64]

Yes I do that I've got up and gone sideways and grabbed the couch before

The respiratory consultant says it would be very unusual for someone my age (32) to have postural hypotension

I've also passed out a few times and the last time I did it I I fell backwards bashed my head on the bathroom door and left my foot behind doing a nice injury to my ankle (not broken but plastered for a week)

As I say it went away the day after I started taking steroid inhalers came back for a day when I stopped for the mannitol test and went away when I started them again

As for drinking I drink plenty of water I carry a litre water bottle round work with me and can empty that in a day and refill it sometimes or drink pints of juice at home so I don't think dehydration is my issue.... sadly I think the consultant might be into something with the cortisol deficiency just need to see the right type of consultant now

[heathermr]

I am having a similar experience at the moment. I have had asthma for most of my adult life but its been well controlled with inhalers with just an odd attack usually when I have had a chest infection. Recently my asthma has ramped up considerably despite no chest infections and I am having to have regular courses of steroids to combat troublesome tight chests, breathlessness and shaking or wobbling. Its now so bad that I can't get off the steroids at all, despite me reminding the Drs that I have had a head injury and am looking at pituitary failure. Finally I persuaded them to look at my cortisol levels and did a blood test. Suddenly it has been absolute panic because the cortisol level came back as very low and the drs are in full panic mode. What a surprise! I am just about to go on holiday and they are twittering about going to hospital so I have opted for the steroids to keep me going until my return and then they will have to sort out the Endo appt I have been waiting 6 months for. I have already lost my TSH completely which means I need complete replacement thyroid hormones in the form of T3 only. My battle axes are ready and my sword is already drawn on that fight!

Heather

[Chip_y2kuk in reply to heathermr]

I haven't seen the endo yet... So I could be waiting for 6 months??... I really hope not

[purple64 in reply to Chip_y2kuk]

I had to wait 5 months for my first appointment for thyroid 🙄