ENT Surgeon Appointment - 13 July 2009

Out of bed early, after an exhausting week away. I wake up dizzy, and continue to have short dizzy spells as I got about my morning chores. A little perturbed I check my blood pressure. It comes in at 144/75, systolic is a little high at 144, but diastolic is good at less than 80...neither reading would explain the dizzy spells, so I put it down the last remaining dregs of this head cold I've been suffering from.
A quick bath, then I head up the road. I'm getting used to the alarming amount of hair that comes out when I wash my hair, regardless of the amount of conditioner I use...but its still distressing to see all that lovely hair just falling out all over the place, with very little encouragement. I often get my husband to detangle my hair after a bath/shower as I just find it too upsetting. Its easier to close my eyes and let him deal with it...out of sight, out of mind.

Its over an hours' drive to the hospital and all the way I'm chasing the ETA on my Sat Nav, inevitably I'm running late and getting stressed.
I land at the receptionist's desk at 10.57am, for an 11am appointment...and proceed to be ignored for 5 minutes as the two receptionists go about their business, discussing last night's TV with passing nurses, and basically appearing to do all they can to avoid dealing with me. I'm wondering if I'd mistakenly worn my invisible jumper when one of them deigns to notice me.
The checking-in process completed I take my seat, thankful that I'd remembered to pack a book into my handbag.

Two hours later and I'm regretting not putting two books into my bag, as I turn the last page on the book I started just two hours previously.

I sneak out of the open door for a cigarette, leaving my name with a fellow patient, also waiting patiently for their appointment, also two hours after their allotted appointment time.

Finally, 2½ hours after my appointed time of 11am I am called in to see Dr H. The first thing he asks me is if I've had my CT Scan yet. Sadly the reply is negative, and I can see from his expression that this meeting is kind of pointless without the CT results. We joke good naturedly about hospital efficiency. I point out that I am returning to the hospital in one week's time to see my Endocrinologist anyway, and wouldn't it be great if the CT Scan was scheduled for the same day, to save me an extra trip into the hospital...and we both laugh at this highly unlikely scenario. That would make far too much sense to whomever is responsible for scheduling such things.
Undeterred by my lack of CT Scan results, he proceeds to poke and prod at my neck anyway. He has a good poke in my ears (heaven only knows why?), pokes his torch up my nose....(well I suppose as an ENT Surgeon he wants to get his money's worth from any patient), before sticking his hands around my throat again for a further squeeze. He squirts yucky tasting stuff up my nose and assures me that my nose and throat will shortly go numb. I can taste ammonia, he tells me its benzocaine based....either way it stinks, and tastes horrible as it slides down the back of my throat....but it isn't half as unpleasant as the huge long scope he then pokes up my nose, and pushes down my throat. Quite a strange sensation....I don't think my throat is as numb as it should be, I can feel every centimetre of it and its at least 30cm long. Feels odd to talk to him, and answer questions, while this huge long piece of cable is sitting at the back of my throat, by way of my left nostril.
After it is removed my nose runs uncontrollably, and the attending nurse kindly passes me a packet of tissues. She advises me not to drink or eat anything for at least an hour, until the anaesthetic properties have worn off.
Dr H ponders what he has seen and announces that he thinks the Goitre on the right side has spread under my collarbone, and that this will make extraction more complicated. We will know more and have a clearer picture once this damned CT Scan has been done, but for now all we can do is speculate. Mysteriously he tells me that if it is down under my collarbone he won't be able to perform the surgery here....I assume 'here' means this hospital, but I'm not too sure what this statement means. he goes on to discuss other things and I forget to ask him to clarify this statement. I must remember to ask my Endo next week if he has any idea what this means.

Then the discussion turned to weightier matters...if you'll pardon the pun. He expressed concerns, on behalf of his anaesthetist, regarding my weight, and he stated that he'd like me to lose a minimum of 6 stone (preferably 8 stone) before he'd consider passing me over to his anaesthetist...I guess this means he won't be scheduling me for surgery either, until I lose this weight....regardless of my CT Scan results, and regardless of my thyroid problems. Oh, and he'd like me to ditch the smoking too...well that's a given, and is high up on my to-do list as it is.
I joked that I'd set about starving myself between now and my next appointment and he did have the good grace to apologise in advance for his crassness, as he quipped that "no fat people came out of Belsen".

I go back to him in 2 months time....14th of September to be precise, and I will try my hardest to have lost at least a stone or two by then. Oh, and I'll be pi**ed off if I haven't managed to give up smoking by then too. If I haven't had my CT Scan by then, well I guess it'll be yet another wasted appointment....got to love the Irish Health System....

Let's Talk Symptoms

I have no clue as to what is going on right now!

I feel awful, I feel grumpy, I'm snappy, my blood pressure has gone haywire, my monthly cycle has gone stupid, and is now a 14 day cycle!! I have the hands of a lizard. My hair is disgusting, its gone brittle and is falling out again.

I find my brain has once again gone to total mush. I forget what I'm saying half the time, I struggle to find simple words in conversation, which is very frustrating. I have the same conversation over and over again with my (very patient) husband, because I've forgotten that I've already told him something, sometimes I'm telling him again less than 5 minutes later. And at other times I swear blind I've told him stuff, only for that particular conversation to have actually only taken place in my own head. I forget many basic things, eg locking the door when I go out. What I've even gone shopping for when I get there.

Yesterday, even with a shopping list in my hand, I found myself wandering totally aimlessly around the supermarket, in a total dreamland. When I got to the checkout it took several minutes before I registered the fact that the girl on the check-out was asking me a question?

For the first time in years my hands and feet are constantly cold....and I'm the girl with the reputation for never getting cold feet, for wearing my flip-flops all year round, even in the snow and frost.

My right eye gets sore occasionally, a dull pain in behind the eye, and I've noticed in the mirror that the pupil in my right eye *sits* slightly differently to the left. If I'm reading a book and I close one eye, my left eye will focus on the text, but my right eye can't.

Once again I'm the pyjama-wearing slob, who just 'can't be bothered' with anything.

According to my latest bloods I'm now firmly in the hypO camp...and I'm hating it. I don't get to see my endo for another few weeks, and my doctor made me promise not to self-medicate and not to reduce my meds until I have discussed it with my endo. Which makes the morning ritual of pill taking very depressing, as I know with each pill I swallow I am making myself worse not better.

I don't know what advice I need from you all, or even what discussion I'm looking to provoke...but just being able to pour all this out to folks who might understand is very probably therapy enough. (My husband tries his best, and is an utter saint to put up with me, especially at this time, but he doesn't really understand what I'm going through)

Currently no-one seems too bothered by my goitre? There has been no further investigation since the ultrasound scan in 2004, by a different medical 'specialist'. My current endo has barely mentioned it, although its bigger now than it was 4 years ago. And the other side has started to grow a little too. Should I be pushing harder to get it investigated. Sometimes my throat hurts (aches) and often its hard to swallow, like pushing food past a brick in my throat...I'm concerned about this, heck I'm very worried about it, but seemingly neither my doctor or my endo are, so should I just relax and ignore it?

And one more thing...my hubby and I *would* like to start a family. I fully understand that while I'm on carbimazole that's a complete no-no...and I also understand that because of my thyroid problems it might not even be possible. I also need to lose a significant amount of weight. But as I'm 35 this year, we'd obviously like start trying sooner rather than later. So anyone been in that position. How long am I likely to stay on the carbimazole? What are the long term med options. Do I just give up on the dream of ever having children?

If you've made it this far, thanks for reading.