Addisons / Pituitary Issues

[Beaubird83]

I’ve been under investigation since the end of August and I’m getting nowhere fast 😔

It all started with migraines, so bad that I was hospitalised, having fits and blacking out. They prescribed me a number of medications to ease them but they’re not working for long enough. I’ve been waking OH up in the night with fits so I’m now on anti epileptic medication which is touch wood working.

In addition to this, I’ve been leaking from my boobs for about three weeks now. They keep swelling randomly, and I get needle stabbing pains in my nipples throughout the day at random times.
I’m not allowed to take anything stronger than paracetamol as it makes the migraines worse.

I’ve been constantly dizzy and nauseous for the entirety of these issues, and I’m having some memory issues where I get brain fuzz and can’t quite remember what I did the evening before or what I ate etc.

The doctors are really struggling. I’ve got really high prolactin levels which are consistently rising each week, really low hormone levels which are getting lower each week, low phosphate levels and high calcium levels. I also have very high blood pressure.
I saw my doctor on Friday for my latest blood results and she was so alarmed she started telling me that my OH needed to call 999 if I have ANY changes as it could be an Addison crisis but it’s not yet diagnosed.
I’ve been referred to endocrinologists and for urgent mri and ct scans. I’ve got to go back Monday morning to get hormone testing done.

I’m just fed up of being fed up. I’ve had a headache for forever, and I just have no energy. I don’t actually know how I’m getting dd1 to school and dd2 to nursery, I must have a reserve tank of energy reserved for them! I’ve been signed off work until I get a diagnosis and OH is worried as hell.

Has anybody been through anything like this? I’ve had Raynauds for years which apparently could be linked!

I have Addison's and recognise none of what you have described.

I had very low blood pressure (60/30 at it's lowest). I craved salt, slept for hours each day.
I did have nausea towards the end but more diarrhoea than sickness. Although I thought it was the spoonfuls of Marmite i was eating.

I was told i was lucky i didn't start fitting but that it would be caused by the low blood pressure.

Now all this is primary Addison's (adrenals not working) rather than secondary (pituitary gland problems). I don't think you get the symptoms associated with low aldosterone because your adrenals are effectively still working it's just that your pit gland isn't asking them to produce cortisol and the adrenals produce aldosterone as a matter of course.

I'm happy to answer questions if you have any others

I’ve also got Addisons and aside from the dizziness and nausea I never had any of your other symptoms , I had extremely low bp , to the point where I couldn’t stand up for more than a few seconds , lost 4 stone in as many months unable to eat and vomiting . I also have raynauds and hypothyroidism .

Please see your GP & push for an MRI and an appointment with an Endocrinologist with some urgency.
Be aware that I am not trying to panic you!

But, I do speak from experience of complex pituitary problems which cause me a range of chronic medical conditions & unpleasant symptoms that aren't far from yours.

I am not a doctor and I am not diagnosing you, but it is worth considering that you could have a benign pituitary tumour. This is NOT going to kill you! But it will continue to make you increasingly poorly until you are properly diagnosed, treated & the growth removed. If it is this, you will feel significant improvement almost straight away plus ongoing improvements when any hormonal deficiencies are replaced.

I recommend the Pituitary Society's website for information on your situation. If I'm right - & you may not feel it now! - honestly you are lucky that knowledge of the pituitary gland has increased so much over the last few years.
I wish you the best for a quick resolution.

Sorry, I didn't rtft re being already on the way to mri & etc!

Needless to say, my cognitive issues haven't actually improved with hormonal replacement 😆

I have Addison’s and a prolactinoma. I thought I was going crazy before I was diagnosed as everyone kept telling me I was fine (!) The high prolactin I’ve had for 12 years now and I just l take Cabergoline to keep it under control. It’s then thing that gives me the least worries. The Addison’s is more of a trouble. But it’s generally easily diagnosed once they’ve picked it up- you need a morning cortisol test. Anything under 100 is an instant diagnosis (mine was 0) and anything under 200 should be further investigated- you might have an sst test (you can google this). Ideally levels should be about 500 but through the U.K. Addison’s forum on Facebook (well worth joining) people are struggling to get diagnosed even with levels of about 200-300 as endocrinologists tend to just monitor at those levels.

I wish you all the best getting some answers.

@Beaubird83
How are you?
Any diagnostic progress?
Hope you are home & stable 💐