In the Autumn of 2004, I started to experience the occasional bout of sweating. These slowly became more freqent and more severe, and in the Spring of 2005 I went to see the doctor. I had several sets of blood tests, which didn't show anything terribly interesting apart from my testosterone level being low. They booked me in to see the endocrinologist at the local hospital.
Sue was talking to some friends online, and someone suggested that I start taking Acetyl-L-Carnitine, which I did. It comes in horrible fat tablets, which I found almost impossible to swallow (which is saying something, as I'm quite an expert at swallowing pills), so we bought a pestle and mortar and for some time I ground them down before taking them each morning. In the Autumn of 2006, they started coming in lozenge form, which is much easier to swallow, so the pestle and mortar now stay on the shelf.
Since I started taking them, the sweats diminished considerably and almost ceased completely for a while, but they now seem to be slowly returning again.
Appointment to see the Endocrinology Consultant, Dr A B Johnson [actually, I saw Dr Wiggam] at 8:50 am. Report to the receptionist in Out-Patients No. 3. Bring my current medicines and a fresh urine specimen.
The current medicines was quite a collection: a preventer and reliever for my asthma, Betnovate and lots of different moisturisers for my skin, a general vitamin supplement, Linseed Oil, Omega-3 Fish Oil, and Acetyl-L-Carnitine.
Dr Wiggam talked about the symptoms, checked my testes and ordered two 24-hour urine collections - not a trivial undertaking!
The report of my consultation, which arrived on 6 March:
I reviewed this gentleman in Dr Johnson's clinic today. We have been investigating Mr Hazelden's low testosterone levels with associated low luteinising hormone levels.
At his last visit we repeated all of his thyroid function tests. With the exception of his testosterone level, which was low at 7.8, his other hormone tests were all normal. (TSH 1.1, Free T4 15.8, Free T3 5.8, LH 1.6, FSH 4.5, Prolactin 225). His 24 hour urine collection [actually, I did two of these] for catecholamines and 5HIAA were also normal.
He tells me since his last visit his sweating has settled. [No, I told her it had settled before my first visit to her, after I started to take the Acetyl-L-Carnitine.] His symptoms otherwise remain unchanged.
I discussed his management with Dr Johnson. Initially his luteinising hormone level was low at 1.2. [This was before I started taking the A-L-C.] It is now [since I have started taking it] just within the normal range. This, in association with the low testosterone level, leaves us still slightly uncertain as to whether the underlying problem is with his pituitary or his testes.
I have explained this to Mr Hazelden today. We have therefore arranged for him to return for a 9 am sex hormone binding globulin measurement. At this time we will also repeat his LH and FSH levels and his testosterone level. [What she does not say is that I have to stop taking the A-L-C and then come back for this test in one week, by which time they hope the effects will have worn off, although they can't be sure of that because they don't know what it does...]
If these tests suggest that the pituitary is the source of the problem, we will arrange for him to have an MRI of his pituitary gland [They would then be looking to see if they can spot a tumour on the gland, which would explain the symptoms.] We would like to see him again in the clinic in 4 months time, by which point we should hopefully have the result of an MRI scan, if we decide this is the correct course of action to take.
Dr Sally Wiggam.
Spoke with the hospital today. Several times. Handwritten on their copy of the letter they sent in February is a note to say that they are scheduling an MRI scan. Perhaps it was also written on the copy sent to my doctor. Perhaps not.
Anyway, at least we know where we stand: they are concerned I may have a brain tumour. The plan is that this scan should be done before my next appointment with Endocrinology in June, but they can't say anything more about the date at this stage.
The letter from the hospital arrived today. The MRI scan is scheduled for 4:45 pm on Thursday 4 May 2006 at Southmead Hospital.
The scan happened - some more details on the family news page. I'm not likely to hear anything now until the next appointment on 20 June.
Managed to pick up a copy of the test results from the last blood test while I was at the hospital - the details they failed to send with the last letter.
The good news is: they don't want to cut my head open. The bad news is: they are still not sure what to do with me, so more tests.
We get to the hospital about 10 minutes early and I check in. The white board says they are running 45 minutes late. Called in to be weighed: they say 12st 1lb, but that is fully dressed with all the assorted bits I carry. Last night, I was 11st 9lb at home. The nurse says the delay should be less than 45 minutes as they have an extra doctor working, but in the end it is just over 50 minutes. Still, it gave me the opportunity to get through another few chapters of Stuart.
I missed the doctor's name - not anyone we recognised. The consultation did not start off well: "Have you had the MRI scan?" "Yes" "And when was that?" "The beginning of May" "And what were the results?" "I don't know. I was told I would get the results today." "Oh. So you haven't been sent any details?" "No."
She starts looking through the file again, and finds something. It seems the scan showed a small growth on my Pituitary gland, probably an adenoma, a few millimetres across. Not large enough to explain the problems with my hormone levels.
So, I have a Pituitary adenoma. As Sue commented later, this is quite bizarre: we have both been diagnosed with a small, probably benign brain tumour that was found in the place where they were looking for a tumour, but which they don't think explains the symptoms that caused them to look there in the first place.
We are assured that when these adenomas are small, "they tend not to grow." We both decide that this is probably not the time to ask, "so where do the big ones come from, then?" My guess is that they would say that the chances of finding a small but growing tumour are low: it has probably been around for some time, so if it is small, it has probably been small for some time, and hence is not growing significantly.
In a classic phrase, which Sue is sure to repeat frequently in the next few weeks, I am "nearly normal." Some 5% of people have an adenoma on their Pituitary. This sounds reassuring. Unfortunately, she then follows this up with the nicely ambiguous: if I were a person with no symptoms (so why would I be seeing a doctor?) then she would probably not be too worried about it. If I start getting headaches, that might count as a symptom.
So, what are the options? (a) I could just keep taking the Acetyl-L-Carnitine. Or (b) I can start taking testosterone, which could be done in three ways: an oily cream to rub into my skin, a monthly injection (which might cause mood swings) or as a 'buckle' in my mouth, attached to the gum somewhere. Possible complications of (b) are too much haemoglobin production leading to unwanted blood clots and prostate cancer; and a possible complication of (a) is osteoperosis.
To establish a 'base line' from which to monitor the blood and bone, I need more blood tests and a bone density scan.
The blood sample is taken before we leave, and if all goes well, the bone density scan should happen before my next appointment in two months, on Tuesday 15 August.
My bone density scan at the Rheumatology Department of the BRI, to determine the risk I have of developing osteoporosis. I should have been given a questionnaire to fill in, so the first few minutes are spent attempting to guess details such as: how much milk do you drink each week? Err... how much milk goes into a bowl of muesli? How many coffees do I drink in an average day? And what is an average day???
The attractive young nurse looks far too youthful to be operating this equipment. Perhaps she's doing work experience from a local school? I take all the metal out of my pockets, then take off my trousers and get onto a table with metal arm over the foot. "Don't worry," she says, "it will only move up to your chest. We are interested in your pelvis and spine."
It moves all the way up, right over my head. Are my glasses all right? "Yes, but I'm not sure why it did that." Try again, same result. Several more attempts, it's still not working. My suspicions are being confirmed. She calls in another girl, equally young. Her classmate?
They try several more attempts. It is still moving over my head, not my pelvis. Then the second nurse spots that the first one has entered my height as 0.17 metres. So why was it going too high? They correct my height... and it still does not work.
Nurse 1 says I must be confusing it - the poor thing is used to working with ladies. Not sure if she is serious or not. Some time later, she comments "You are being very patient." I think that means she is getting worried. Eventually it works, we're not sure why. They will let me know the results in three weeks' time.