Rare diagnosis

[yorkshiregirl44]

Hi everyone,

Other than my thyroid condition i am being tested for a carcinoid tumour/syndrome.

I wondered if anyone else on here had been tested or diagnosed with this.

Iv had blood and urine tests done and have a scan booked.

Thanks

Christine

[Clutter]

Christine, fingers crossed the tests rule it out.

nhs.uk/conditions/carcinoid...

[yorkshiregirl44 in reply to Clutter]

I hope so. Iv been backwards and forwards to the doctors as you know for ages. It was a new doctor who listened to me and my daughter and she ordered tests. Yes im hoping i dont have this but at least then they might look a little further for a cause of my symptoms.

Thanks

[stoneym in reply to yorkshiregirl44]

Hi Yorkshiregirl, I had a 24 hour urine test for carcinoid tumour 2 weeks ago; the result is still not back from the hospital. I have been very worried since looking up what a 5HIAA test was, as my GP never mentioned what it was for. I'm trying to put it out of my mind. I've got so many symptoms.

Stoney, Winchester uk

[yorkshiregirl44 in reply to stoneym]

Thanks for your reply,

Im still waiting for my results, not quite 2 weeks yet.

Like you iv lots of symptoms but some are very vague. It was my flushing that rang some bells on the other hand i dont get all the symptoms.

Do you know what promted your doctor to test for this?

Christine

[stoneym in reply to yorkshiregirl44]

Hi again Christine, No, nothing specific was said. Just 'have a blood test, a urine test, an ECG., then get this prescription for anti-anxiety pills - they'll help.'

It was after my husband got the urine container, I later read the label 5HIAA, and googled it. That was the first I knew and it was quite a shock. - causing me great anxiety; [although I haven't taken any of the pills yet.] Perhaps I should, to prepare me for the result. My adrenals can't cope with any stress - let alone hosp. visits!

My symptoms on that day were - erratic wobbly, heartbeat, tachycardia, palpitations, diarrhoea, chest pain, couldn't stand, weak, felt extremely unwell for about 40 hours.

[I'm already sure I've got thyroid, severe adrenal problems and diagnosed privately with cfs ] - Just hoping for some good news Monday!!

Stoneym.

[faith63 in reply to stoneym]

if you have low cortisol, have them find out why. You may need HC or something too.

[faith63 in reply to faith63]

oh and i did have urine done for carcinoid syndrome also. Turns out it was long term use of Anti Anxiety meds and than withdrawal, that made me ill..for years after too. I would not take much of those pills.

[yorkshiregirl44 in reply to faith63]

Hi Faith,

Iv read that medication can affect urine results and so iv avoided those for my testing.

What was it that your doctor noticed that led to your test for carcinoid?

[faith63 in reply to yorkshiregirl44]

I had lots of anxiety, trembling, sweaty and a blood test showed high serum Serotonin. Did you have that test yet?

[yorkshiregirl44 in reply to faith63]

The blood test i had is calle CEA..a general tumour marker. My doctor should have done a carnoid spesific one. Im going to wait now until i get the urine test and the ultra sound results.

Have your symptoms reduced since you stopped the meds?

[faith63 in reply to yorkshiregirl44]

I have not been on Benzo's since 2010, have now developed Hashimotos.. less anxiety than i used to have but feel really ill most of the time.

[stoneym in reply to faith63]

Thanks for reply. I'm sure you are right about about needing HC. Of course my GP doesn't agree. A year ago I had a bio-test - (changes in the electrical resistance of the skin- I think it's like a lie detector) - This showed low cortisone - but then it also showed low many other hormones. I am taking Nutri adrenal and Cortol ACE to try and help.

And I'm seeing a private doc. 7th May - recommended on Thyroiduk's list, and hoping he can help me in this horrendous maze of ill health.

Expensive, but Gp's round here are next to useless.

[yorkshiregirl44 in reply to stoneym]

Hi Stoneym,

Iv been going to the doctors for ages now with eratic heartbeat, breathlessness, weakness, muscle and chest pain, some stomach cramping but not often. My last visit i mentioned dry flushing to my face which lasts only seconds.

Iv got Hshimotos, underactive thyroid and cfs. I dont have diarreah at the moment but have had it for many years due to crohns disease. For the first time in my life i have constipation.Iv an ultrasound booked for the 8th of may.

Like you when i read about carcinoid i was worried but now i feel relaxed about it partly becasue it is so rare and partly because even if it turns out to be cartinoid hopefully they can treat it and put an end to these on going symptoms.

This site is so amazing, when i posted about cartinoid i never imagined anyone would be in the same position, that in itself lightens the load a little.

I hope you get a good outcome from your tests and well done to your doctor for looking outside of the box.

Christine

[stoneym in reply to yorkshiregirl44]

Thanks again Christine,

Yes, sharing our worries does seem to help lessen them. (I think it was actually a fill-in GP that put me for the test)

I have to pay privately for all other tests as my GP doesn't agree I need them; and then wont recognise the private ones either.

I'm seeing a private doc soon from the Thyroid uk list, who deals with thyroid, adrenals and cfs. Wish I'd spotted him sooner as he's only a mile away; had to wait 6 weeks for an appointment - so hoping that suggests he's good.

I hope your result is good and look forward to hearing the follow up news.

Stoneym

[yorkshiregirl44 in reply to stoneym]

what part of the country are you in?

I saw Dr.P a good while ago, he recommended several suppliments for adrenals and thyroid.....i only tried them for a short while then went back to my usual thyroid meds.

My CFS was diagnosed at a private clinic first and then again on the nhs, i then went onto get a fibro diagnosis.

Its all very costly and even more so when theres no improvement.

[stoneym in reply to yorkshiregirl44]

Hi Yorkshire girl

I am living in Winchester; have been hoping to move for years but don't have the energy.

I have a book by a Dr P. but I'm not sure if this is the Dr. you mean? I recently started taking Nutri thyroid and I'm sure my temp has gone up a bit already, for some of the time. Also taking adrenal stuff as they are often in hyper, scary mode.

I was diagnosed cfs by Dr Myhill; my GP was so annoyed he told me to find another dr. I haven't heard of the NHS diagnosing it. GPs round here don't accept private tests as valid.

Yes, this has cost me hundreds, maybe thousands. I don't count it up!!

Stoneym

[helvella Administrator]

Nick Robinson is returning to work after an operation for a bronchial carcinoid tumour:

telegraph.co.uk/news/bbc/11...

Earlier story:

theguardian.com/media/2015/...

Maybe his getting back to work already is encouraging?

[yorkshiregirl44 in reply to helvella]

Yes it is encouraging.....hope he makes a full recovery.

[helvella Administrator in reply to yorkshiregirl44]

And we all hope you don't need an operation or (therefore) a full recovery. Fingers crossed on your behalf.