So this week was the anniversary of my official Graves Diagnosis.
A reason to cheer and celebrate? Hardly. A reason to reflect? Yes.
My pre-op is on April 3 with the removal of my thyroid scheduled for mid-April, hopefully will not be delayed.
Recovery – at least 10 days. Knowing me I will try to shorten that but practically I have accepted it will be around two weeks and so I have already begun to rearrange jobs.
These blogs are my way of expressing my feelings. It is a cathartic way of dealing with the crazy couple of years I have had. Hopefully, it may be useful to someone who may also be suffering from an undiagnosed over-active thyroid.
Preparing to set the butterfly free
This time in a month and it will hopefully all be over.
Well, anyone who has thyroid problems would say that is not going to be the case, but one problem will certainly have disappeared. it will have been carefully removed from my neck and the butterfly, as the thyroid is known, will no doubt fly into an incinerator along with the other medical waste. Bye bye thyroid.
I shall be swapping one medication for another, but thyroxine is not as harmful as the drugs needed to control Graves’ Disease. I will say goodbye to Beta Blockers and boy I can’t wait to get rid of those blue capsules with their little specs of slow releasing medicine that make walking up hill like ploughing through treacle.
I shall say goodbye to the PTU – oh its real name is ridiculously long and PTU is so much easier to write, but the journalist in me says it should be spelt out so Propylthiouracil (told you PTU was easier). It can take a while to make sure you are on the right level of thyroxine to balance your endocrine system as something has to tell the rest of your body what to do.
It has been a long time since my last blog, but that is more due to pressures of work rather than nothing happening. In November I saw another different specialist in the clinic at Rochdale Infirmary and he increased my medicine from 150mg to 200mg. Once again that ‘definitive treatment’ was mentioned and I again reiterated that I was not willing to try RAI – Radio Active Iodine. However in December the additional medication resulted in a week of around two hours sleep every night – enter stage right the biggest zombie you have ever seen. I was turning up on jobs completely delirious and unable to hold conversations. Ha, not good for a journalist.
So I rang Dr Prakash’s secretary on December 14 and said I had had enough, I wanted the operation, I couldn’t function on no sleep and so the medication was returned to 150mg. Then I waited for my letter, and I waited, and I waited.
In January – when I knew clinic would be on I rang. I was informed that everyone had been off for the Christmas break and there was a backlog of letters in need of typing but that my letter to the surgeon had not even been dictated by the consultant yet. Stress and anxiety are a side effect of this maddening condition, so you can imagine what effect that had on my state of mental and physical wellbeing.
Two days later and a carbon-copy letter arrives. It is addressed to Mr Shepherd, the ENT Consultant at Fairfield General Hospital, now that name is familiar. Hold on a minute, that was the clinician that I was wrongly scheduled to see a year ago when this insane journey began. OMG he is going to be doing the operation and I was so rude to him last year. Yikes.
However, I look a little more closely at the letter and see that it states date of dictation December 15 and the letter is dated January 5. I accept people need a Christmas break but I sure as heck didn’t get one.
The letter says, ‘I shall be very grateful if you could arrange to see her with regards to a total thyrodectomy.’ There done. Definitive decision made. What’s next?
More blood tests from the end of the year show my levels are in range but no TSH, Thyroid Stimulating Hormone, the missing link in my pituitary gland that controls the thyroid. The consultant lowers my medication to 100mg, but the letter takes two weeks to arrive. My GP gets their letter, but no one tells me to reduce the dose so I keep on taking the evening ‘pill of poison’ as I have taken to calling it, fondly. Well it tastes that vile it seems to be rather appropriate.
As January starts, so does even more regular work as I try to keep everything in balance. The head at another school was so impressed with the school paper that I produced with his students he contracts me to produce one every half term… then two primary schools request after school clubs so their pupils can produce termly newspapers. Of course I can do it. Meanwhile I balance and juggle and fight my own body sometimes on a nightly basis when it won’t let me sleep.
I have been referred but I still do not know when I am going to be seen. So I call. “Well, I can’t tell you when you will get to see Mr Shepherd. It will be before the end of February though.”
OK, that’s not too long to wait. The letter arrives. Yes, a date, and it is in February – the 27th. That is as close as it could get to the end of the month seeing as how the clinic is on a Monday.
Bury is not quick to get to when your appointment is 9.15am and you are competing with school traffic. I arrive at 8.45am and find the clinic just in the front door and to the left. Then I wait. I listen to an incredibly articulate Asian boy trying to engage all the nearby adults in conversation and then I wait; as does everyone else. An hour later and a nurse says, “Mr Shepherd’s clinic has been delayed by 45 minutes because of technical difficulties.” I think to myself, I have been waiting 30 minutes in any case. Then a tall gentleman comes through the swing doors and a murmur goes through the packed waiting room. ‘It’s him,’ I think to myself.
“We will be in next,” a lady says to her friend as it nears 10am, “as my appointment was for 9.30.” “Don’t think so,” I mumble to myself. More patients are called and then I hear, “Catherine Watson Leeevack?” Why they always have to add extra eees I do not know. I stand up and I can see the other ladies scowl slightly, knowing that I am getting to see the consultant ahead of them.
“I am very sorry,” I start and quickly explain the mix-up when I was paying to see someone privately and I had been put on his list. Yes he does remember but remains professional. I tell him a friend of mine was a patient of his and he remembers her; that fills me with confidence.
He asks why I have rejected RAI as most people prefer that to having their neck cut open and I explain that I don’t like the potential long term implications. I get no arguments and he respects my decision.
He answers all my questions. How long might I have to wait – 18 weeks. How long is surgery – around 1 1/2 hours as I don’t have a goitre. Which hospital? Fairfield. How long is recovery? Two weeks, 10 days before driving or until you can turn your neck round. Yes you will have staples and a drainage tube that will be removed after 3 days. Admission is the same day as surgery and an immediate cessation of all medicines. Home possibly the following day or day after.
Yes, next stage has started, although I can’t hide my disappointment at the thought of 18 more weeks. Two days later and a letter arrives. I ring the appointments’ centre immediately and am told the operation has been scheduled for mid-April and can I attend a pre-op at North Manchester General on Monday April 3. YES.
So that is where I am now. More blood taken last week after which I was astonished to be contacted by the receptionist the following day and told my results were already back, and there was no problem with getting a copy for my consultant. What a difference.
My endocrinology appointment is on March 28 and then hopefully surgery on April 18. I am so lucky to have found the reason for my weight loss and hopefully a solution to the problem. If this helps anyone suffering similar conditions to seek help early then it has been worth writing.
(The photo shows my scarf collection – my way of knowing I am ready for what is to come)