Carcinoid Syndrome?

[starletuk]

Hi,

I am new on here and am really hoping that someone can help :-)

I was prescribed prednisalone (40mg/day) back in January as had severe headaches with blurred vision, and my dr thought I may have a condition called Temporal Arteritis (I have since seen a neurologist and had this ruled out). However, at the moment the neurologist is keeping me on the steroids as I have had a high ESR level for over 10 years now, to which the steroids lower. I am now on 35mg/day.

Anyhow, I was getting along fine with this apart from the usual steroid weight gain until 11 weeks ago. I was at work and developed chest pains and a fast pulse. I was taken to hospital but released later that day.

Since that day I have developed the following symptoms which are getting worse week on week:-

    * Fast Pulse (up 128)
    * High Blood Pressure - but this will also randomly drop very low)
    * Shortness of Breath
    * Very Red Flushed Face
    * Severe Sweating
    * Fluid Retention


This symptoms will start with even the slightest amount of physical exertion (going up one flight of stairs - even standing in the kitchen cutting vegetables) - but the curious thing is that they will also start randomly even if I am just sitting in a chair resting.

I am taking 4 Furosemide daily for the fluid retention as I have ballooned up so much (my poor ankles, arms, leg and chest have almost disappeared), but they are very hit and miss as to whether they work or not - which my GP doesn't understand. I am also taking beta blockers to slow my heart.

My GP and Endocrinologist are now investigating whether I may have Carcinoid Syndrome or a Pheochromocytoma. I have done 2 24hr urine tests and am doing a 3rd today. The 1st one came back with high levels of 5HIAA and slightly raised levels of Noradrenaline, but the 2nd came back with normal levels of 5HIAA. My GP said that could either be that the first test gave a false positive, or if I do have carcinoid that the tumor was behaving itself on the day of the 2nd test?? I am also waiting for a date for a CT scan of my abdomen now.

I saw a cardiologist this week who was completely dismissive of me as I wasn't a pure cardiac case, and told me all that is wrong is caused by the steroids - but none of the other doctors think this.

How do you know who to listen to and who is right?

I just know that my health is deteriorating week on week, I am struggling to continue to work full time (although they are being very supportive), and I just want a diagnosis now so that I can start to feel better.

Any thoughts/comments/suggestions would be hugely appreciated.

Many thanks

Fiona

[thyroidian]

This is a very interesting post, and im sure you will get the input you need on this post.
This forum as some very good knowledgable people,
Lets start, you was on 40mg of prednisolone, for headache and blurred vision, where temporal arteritis was ruled out by a neurologist.
Have you had a brain scan MRI?
Your neurologist as left you on 35mg of prednisolone now since january, for an high ESR.
Has your neurologist not looked into why you have an high ESR? or what could be causing an high ESR, or has he just left you on the steroids to lower your levels.
Well it sounds to me like you may have the symptoms of cushings, which could be caused from over use of the prednisolone,

Cushings causes, fluid retention, cardiac problems, sweating, high blood pressure, and flushing, along with a whole of other problems, eventually leading to a thinning of the bones, leading to spinal fractures,
Pheochromacytoma, is an adrenal tumour, usually very tiny, the symptoms are flushing and usually abnormal high blood pressure.
Although they are usually found on the adrenal, i have heard of them in other places too.
My urologist, as removed one from out of the bladder.
Have you had a CT scan of the abdomen, and chest?
Carcinoid disease usually causes severe flushing, and usually these tumours are found in the lung, but can be elsewhere.

Has no-body tried taking you off the steroids gradually, to a complete stop. and then see if the symptoms of flushing, sweating , cardiac, and fluid retention, actually subside.

Have you had a blood cortisol done? usually drawn about 8am in the morning?

I think you need some evaluations doing, as the over use of such a high dose of prednisolone over 5 months might be causing you to experience cushings, which is an excess of cortisol in the body, and overtime if this high level of cortisol, and other adrenal hormones stay high, can cause you a string off problems, like the ones you are experiencing now.
I would be questioning now why i have an high ESR, you say youve had it ten years, and also asking for a gradual reduction over time to come off the prednisolone, to see if the symptoms subside. Then if they dont, be looking for the pheo, or other

Im sure you will get better xpert opinions than this, but this is the road i would be taking.
The prednisolone may be your first port off call, and this could be the cause off your symptoms, when i took steroids for 6 months, i developed symptoms and signs off cushings, and my symptoms were very much like yours, i had to gradually come off the prednisolone, but just dont stop taking them,
You need expert advice of your doctor, to do this.
Sorry i couldnt be off more help
Good luck
Nicola

[starletuk]

Hi Nicola

Thanks for getting back to me.

Yes I do take Thyroxine, 250mcg daily at the moment and my levels do seem to have stabilised now. They also found that I have a Vitamin B12 deficiency so am also having monthly injections for that.

Will definitely request be tested again for cushings tomorrow.

Have been on the lower 30mg dose of prednisolone for nearly a week now and the headaches are returning with the blurred vision...

Also the fluid retention is getting worse - the last 3 days my ankles and feet are still as swollen when I get up as when I go to bed!

Of course I will let you know how I get on - I really appreciate your help and interest.

Best Wishes

Fiona

[thyroidian]

Hi Fiona.
Glad your neurologist is trying to get to the bottom of the high ESR levels, and doing a MRI to rule out any abnormalities, and vascular.

Its a joke on the NHS, as i live in england too,and ive had my fair share of waiting,
When your poorly it feels like youre waiting for ever.I have had to go private on a few occassions, just to get seen quicker. what a joke.

Glad the GP is working with you, and slowly reducing the steroids,even when you stop completely it might take a little while to see the difference,so just be a little patient.
Do you take thyroxine? for the hypothyroidism,

I would ask the GP for another cortisol blood test, and what are your thyroid blood levels?

Cushings can affect all systems,and also vascular systems also, so you definately need this looking into.

Please will you let me know how you get on with all your tests, CT scans, and your referrals .
Im very interested to this post, as ive had similar symptoms,
Im wishing you well, and if you need me for anything else, just give me a shout, or private message me.
Look forward to hearing of you
Nicola

[starletuk]

Hi Nicola

Thanks for your reply - some really useful points which I shall take along to my doctor when I see him on Thursday. In answer to your questions...

- My Neurologist is referring me for a MRI brain scan and to also scan the arteries in my head. I have had a head CT scan which was clear. She is the one who has picked up about the ESR levels and wants to get to the bottom of it, and is also referring me to a Rheumatologist, Gastoenterologist and a Kidney specialist. Sadly in the UK everything seems to take forever on the NHS and am waiting for appointments for these - just got a rheumatology appt for 10 weeks time.

- My GP is going to start bringing down the steroids at 5mg/week to see how we go on that.

- My Endocrinologist (I also have hypothyroidism) tested my cortisol levels for cushings a couple of months ago and the bloods came back as normal. I saw him again last week and he is going to refer me for a triple phase ct scan of my abdomen and am having bloods taken in the morning for hormone levels in the gut. This is for the carcinoid syndrome I think.

From what you have said about cushings I think it's worth asking them to repeat the cortisol tests again now, as like you say, it fits all of the symptoms that I have got.

Thank you so much for your help :-)

Fiona