Size does matter at Christies Endocrine unit

Yes its definitely the case with Acromegaly!  Today i was back at Christies to undergo additional tests with the lovely nurses from The Endocrine Unit.

Myself and Amy left Wigan at 0645am and we were on time for our 830 appointment. Albeit a few nerves we were both in high spirits and from the outset had planned to end the day with a nice lunch/tea at The Metropolitan pub in Didsbury :)

The plan for the day was to have an Insulin tolerance test and an ECG. I had fasted from the previous day’s tea time.

“An insulin tolerance test (ITT) is a medical diagnostic procedure during to test cortisol in which insulin is injected into a patient’s vein to assess pituitary function, adrenal function, and sometimes for other purposes. An ITT is usually ordered and interpreted by endocrinologists. This test is potentially very dangerous and must be undertaken with great care.”

On arrival at the unit, i met Nurse S along with a Student Nurse (who i agreed could take part in the test). Nurse S was really friendly and put me at ease. I was seated on the Endocrine ward which i must say looked quite new and was spotlessly clean :)

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Anyway, it was immediately clear that the ITT test was potentially dangerous, that it must be carried out in a controlled manner and in a 121 environment ie. the supervising nurse would be with me throughout the test.

The senior nurse went into real detail about the test and the possible side effects. I signed a consent form but the nurse said she needed to have a further word with Professor T as i had three episodes of SVT in 2005/6 which required hospital treatment. The nurse said she was concerned about the possible stress on my heart.

Next i went and got weighed and they took a note of my height. Thanks to Amy we noticed that the height measurement was wrong and they missed two inches somewhere ;)

They also informed me that they could only do the test if my cortisol level was above a certain baseline which sadly i’ve forgotten. Anyway the nurse put in an indwelling cannula into my right arm then took a sample and sent it off for immediate checking. They also took my sitting and standing blood pressure which they said was a little high.

Next they sent me down for an ECG which came back normal.

On arrival back upstairs a nurse brought Prof in to see me who went over the concerns with my previous incidents of SVT. They decided not to carry out the ITT and instead they decided to proceed with a lesser test called a short synacthen test.

During the test, a small amount of synthetic ACTH is injected, and the amount of cortisol, and sometimes aldosterone, the adrenals produce in response is measured.

Just before the test Prof T informed me that he was also arranging a colonoscopy to test for polyps in relation to my confirmed acromegaly. He also mentioned that the results had come in for the glucose tolerance test from a few weeks earlier and that my growth hormone level stayed at 5 or slightly above during the test which apparently supported his diagnosis of acromegaly alongside my IGF of 1500+.

Oh and he said that pre-surgery he was prescribing cabergoline to reduce my prolactin levels  (as the tumour is secreting this) and in tern perhaps allow the testosterone to increase which should help with my general fatigue. Sounded good and i was told that the Acromegaly nurse would come through to discuss the risks with this drug that include addiction to booze, gambling and sex! Had to laugh :)

Prof also took a few secs to show me my recent MRI results. From the images it’s clear than my tumour is of a reasonable size and it is squashed over to my right side carotid artery. I should have images for you in a week or so as i have ordered from Wigan Infirmary. 

Apparently during surgery and due to the risks they may leave some of the tumour in/around this artery.

Ok so next Nurse M, the acromegaly specialist, came over and asked me to get involved in a research programme to understand the genetics of endocrine tumours . I agreed to this and duly signed the consent forms. The way i see it the more research the better and who knows they may find that i’m likely to pass it on :( (sometime).

After a few minutes the earlier nurses came back over, gave me a jab in the bum and the test began! Other than a few sensations in the head (not at all painful) there were no issues. I think that three sets of blood were taken.

At the end of the test i was give four pieces of toast + a sandwich for desert :) and the acromegaly nurse came over for a serious chat about cabergoline and a few giggles about sex and gambling. She has a great manner and told me to keep in touch and stop the meds if i notice any adverse conditions. She said the same thing to Amy which was nice.

Then i was sent downstairs to the Medical illustration unit to a nice lady who took photos of my face, hands and feet for the acromegaly. We had more than a few giggles and she also had a great manner which took my mind of my huge jaw :) Oh and i also agreed to share my photos for medical journals etc.

After this i collected my prescription and we headed off :)

Really positive about the day and upbeat we took ourselves off to The Metropolitan in Didsbury and had the best pub lunch i’ve ever had. I have grown up in/around catering within the family businesses and our lunch beat anything we have had before. I had a great pint of Landlord, large glass of red and their house burger! Amy had the ribs and she was suitable impressed . I would defo recommend paying them a visit. They also have a nice bear garden too.

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What happens next? Well i’ve started the cabergoline, am waiting to hear from the Surgeon at Salford Hope Hospital, waiting to hear about todays test results and lastly should get an appointment through for the colonoscopy and echocardiogram.

Lots of waiting but i’m fine with that and staying positive! Things could be a whole lot worse and just a few hours in Christies kept our feet firmly on the ground!

Thanks for reading.

 

9 Comments

    • Thanks JB. I know it may look obsessive but it has helped sharing things with other sufferers and my hold of things has improved massively. Jenny and the gang are often in my thoughts. Acutely aware of how lucky i am that my issues are treatable.

      This is my beautiful cousin Jenny Smith was Barbour (JB’s daughter) who sadly passed away March 2010. God bless her and her gang. Gone but not forgotten x

      My cousing J-B-S gone but not forgotten

  1. Thankyou for posting… I have just started reading… I will be following you for sure….. I had my surgery at Salford under Mr Gnanalingham. They are fantastic there. Keep positive and strong, you will be fine

    • Thanks Andrea. How are you doing since your operation?

      I am hoping to get a date through asap. Just started on the cabergoline and hoping it has a positive effect as opposed to a gambling addiction. Never gambled before but Margaret warned me :)

      Take care, Richard

      • lol… im off too see margaret and the gang in the morning.. have got to have a glucose tollerance test again…im hoping i can chat with a consultant got a few issues going on with my symptoms again…hope i can get some answers…my own gps done bloods and nothings showing up…. im exhausted all the time… love this page… thanks for sharing it and take care of yourself x

        • Thanks for posting and your lovely comments. I’m taking my cabergoline which seems to be having a positive impact but I feel that the acro is laying down routes. Knees hurting more than ever and still have no energy at all. I’m waiting on contact from Mr G at Salford hope with op details but the waiting game is causing increased anxiety. What gets me is that they seem go be waiting on removing the tumour before treating the acro. I can see why as the igf1 may come down naturally post op. All the while I am going daft thinking that the acro is making the most of pre op holiday. Hope you have a positive visit and get answers. You know you can ring nurse M anytime for advice?
          She gave me her number. If you ever fancy a nitter natter let me know. I’m on Skype too richardjm77. Take care, Ricardo

  2. Yeah, it’s a weird side-effect to be sure. I’ve been taking 0.25mg of cabergoline a week since May. I’ve not become overwhelmed with an irrational desire to gamble yet, but I’ve never been much of a gambler anyway.