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Hi,
From August of 2012 I had been experiencing pretty much sudden health issues: vomitting, dizziness, fainting, leg pain, headaches, breast lactation, heavy periods & fatigue - vomitting being the worse. I visited the doctor on many occasions and was just brushed off, I believed it was because I was young (I was 19 im 20 now). It is only when one morning in september I woke up with a severe migraine, couldn't talk & was unable to stand. My partner took me to my doctor who rang an ambulance straight away as my bp was also 75/56. On arrival to the emergency department they were unsure as to what was wrong, I was unresponsive for a few hours & was told they checked for meningitis but that was clear. I was admitted to hospital & when I was able to communicate i told them my symptons and they found I had an elevated prolactin level and also a low cortisol level of 54 (the lower limit in the UK is 140) following this they performed a short synacthen test & I didn't respond well to that, my levels only increased to 92 and so the consultant said she would perform another to be sure & refer me to endocronology. They performed the further synacthen test which came back the same however this time I was seen by a different consultant who told me everything was fine. Confusing! I have now been an outpatient for 6 months & nothing has been done about this - i am still vomitting & have all of the previous symptons and have been told it's simply stress?? What do I do??
From August of 2012 I had been experiencing pretty much sudden health issues: vomitting, dizziness, fainting, leg pain, headaches, breast lactation, heavy periods & fatigue - vomitting being the worse. I visited the doctor on many occasions and was just brushed off, I believed it was because I was young (I was 19 im 20 now). It is only when one morning in september I woke up with a severe migraine, couldn't talk & was unable to stand. My partner took me to my doctor who rang an ambulance straight away as my bp was also 75/56. On arrival to the emergency department they were unsure as to what was wrong, I was unresponsive for a few hours & was told they checked for meningitis but that was clear. I was admitted to hospital & when I was able to communicate i told them my symptons and they found I had an elevated prolactin level and also a low cortisol level of 54 (the lower limit in the UK is 140) following this they performed a short synacthen test & I didn't respond well to that, my levels only increased to 92 and so the consultant said she would perform another to be sure & refer me to endocronology. They performed the further synacthen test which came back the same however this time I was seen by a different consultant who told me everything was fine. Confusing! I have now been an outpatient for 6 months & nothing has been done about this - i am still vomitting & have all of the previous symptons and have been told it's simply stress?? What do I do??
Horsey is right on the money in her suggestion.
Until you get in to see such a centre, you may be able to find an excellent neurologist with many years of experience.
This is for the following reasons:
1. He/she would have seen MRI images like yours and would be able to make a better diagnosis than a radiologist or than a neurologist with less experience.
2. If he/she cannot resolve your ailment he will surely be able to guide you to an endocrinologist or a pituitary centre. Either way, a referral from a neurologist should make accessing an endo or pit centre easier. They are less likely to fob him off than you.
In my experience (pituitary tumour and a period of low cortisol), showing doctors your tests and medical images are not enough. Showing them to EXPERTS is what makes a world of difference. Two doctors looking at the same MRI can EASILY arrive at very different diagnoses.
Until you get in to see such a centre, you may be able to find an excellent neurologist with many years of experience.
This is for the following reasons:
1. He/she would have seen MRI images like yours and would be able to make a better diagnosis than a radiologist or than a neurologist with less experience.
2. If he/she cannot resolve your ailment he will surely be able to guide you to an endocrinologist or a pituitary centre. Either way, a referral from a neurologist should make accessing an endo or pit centre easier. They are less likely to fob him off than you.
In my experience (pituitary tumour and a period of low cortisol), showing doctors your tests and medical images are not enough. Showing them to EXPERTS is what makes a world of difference. Two doctors looking at the same MRI can EASILY arrive at very different diagnoses.
There is a organization in Bristol called The Pituitary Foundation. You might give them a call. They know the ins and outs of the NHS and can direct you to pituitary specialists. Good luck.
horselip
horselip
Thanks so much for your response.
Whilst I was in hospital they did perform an MRI to look for a pituary tumour - they said there were no abnormalities. Although I did visit an opticians a week prior to being admitted to hospital and they told me I had pressure on my optic nerve, which the doctors seemed to not be able to explain. I have read articles on the net that says just because you don't have a pituary tumour does not mean you do not have a problem with your pituary, but nothing else was investigated.
I do crave fries & crisps a lot, maybe if I monitored my cravings I would be able to establish if there was a pattern. I had my potassium checked which was at a normal range.
Do you know if there are pituary centres on the NHS? I don't mind going private as I done this for my endometriosis.
Whilst I was in hospital they did perform an MRI to look for a pituary tumour - they said there were no abnormalities. Although I did visit an opticians a week prior to being admitted to hospital and they told me I had pressure on my optic nerve, which the doctors seemed to not be able to explain. I have read articles on the net that says just because you don't have a pituary tumour does not mean you do not have a problem with your pituary, but nothing else was investigated.
I do crave fries & crisps a lot, maybe if I monitored my cravings I would be able to establish if there was a pattern. I had my potassium checked which was at a normal range.
Do you know if there are pituary centres on the NHS? I don't mind going private as I done this for my endometriosis.
I am so sorry that your doctor is not skilled - but you need to find a pituitary center.
With elevated prolactin and low cortisol, you have more than one issue going on and it needs, in my layman eyes, more investigation. You may have a pituitary lesion or just a failing pituitary.
In regards to the vomiting - do you crave salt, and do you feel better if you try salty things? I would suggest trying to increase sodium intake and seeing if that helps. Low cortisol is a salt-wasting condition, so if you can up your sodium intake (and keep it up) you can help keep things in a safer zone. There are meds to help retain sodium, but your doctor has to be intelligent enough to give them to you and you need to know if your potassium is low or high so you know to avoid potassium or need more.
It is likely not stress with those labs.
With elevated prolactin and low cortisol, you have more than one issue going on and it needs, in my layman eyes, more investigation. You may have a pituitary lesion or just a failing pituitary.
In regards to the vomiting - do you crave salt, and do you feel better if you try salty things? I would suggest trying to increase sodium intake and seeing if that helps. Low cortisol is a salt-wasting condition, so if you can up your sodium intake (and keep it up) you can help keep things in a safer zone. There are meds to help retain sodium, but your doctor has to be intelligent enough to give them to you and you need to know if your potassium is low or high so you know to avoid potassium or need more.
It is likely not stress with those labs.
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