Cowboys, handbags & my new Endo

I seemed to be waiting an inordinately long time for my pre-appointment visit with the nurses (the dreaded weighing chair), and so I took some time for people watching in the over-crowded waiting room. Over-crowded because in the three weeks since I was last there, the contractors have moved in, blocked off the main corridor access for the out-patients department, and put up a wall where once there was ample seating, and thus reduced the waiting area in the busiest out-patient departments to less than half the space...chaos, and so unrecognisable that I walked straight through the place, after taking a double look in confusion, only to find myself in OP2, wondering how I'd got there without walking through OP1.

The first thing I noticed were all the new faces with ID badges, shiny new interns bustling about. Some over-brimming with confidence, and looking like they'd settled right in....others looking like they still didn't know where they where, why they were there or what was happening....I reminded myself to ask specifically for the senior registrar...just in case I was unfortunate enough to be allocated to one of the latter. Another thing that struck me about the female interns was that they all seemed to be surgically attached to their handbags...every time they came out of the consultation room, to go to the nurses station in order to collect the next patient's file, the handbag was there, hanging off the shoulder. Is this some sub-conscious comfort thing among young female interns....or is there some major crime spree going around the hospital? If the thief was foolish enough to steal my bag he'd be sorely disappointed to find a wallet packed full of old receipts, instead of money; a microchip scanner for dogs; and very old mobile phone, due to make its debut on the Antiques Roadshow sometime soon.

One other guy who drew my attention was just wearing the most fantastic outfit. He had a very well-worn pair of tan Cuban heels, boot-cut denims and checked shirt. All topped off with a beautifully cut green wool jacket, a beautifully ornate pocket-watch & chain and the obligatory stetson. When he informed his wife he was going outside for some fresh air, I'm fairly sure he was actually going to check their horses, no doubt tied to a hitching post, out there in the car park somewhere. Wonderfully eccentric, and he pulled it off really well, you couldn't help admire the care that had gone into putting it all together. Really wish I'd had the courage to strike up a conversation with him and his wife, as I'm sure they'd have been just as interesting as their clothing suggested. She had the boot-cut jeans, checked shirt and a neckerchief, and even if they'd sat opposite ends of the waiting room from each other you couldn't help but pair them up.

After an hour and half of not hearing the nurses call my name, I tapped one on the shoulder. "I promise you this isn't a hurry up, as I can see how busy you guys are, but I came in at 2.15pm, and you guys are usually very efficient at calling patients in the the pre-appt weigh-in, so I'm just wondering if my file got missed?" She apologised and went to see where my file could be, and immediately came back, blushing with embarrassment. She had indeed, by mistake put my file on the wrong pile, and they had all totally missed it. The led me straight to the dreaded weighing chair, and we're graceful enough to stay silent as they noted the increase in the last few weeks....I really must get off this *I'm still recovering* trick, and cop on to stopping the slide before it gets away from me!
But, if nothing else, it shows that it pays to know how the system works...or I might well have found myself sitting for many more hours before anyone noticed my misplaced patient file.

The new registrar, who called me within 10 minutes of my visit to the nurses room, seems like a nice guy, and I think we can work well together. He was highly recommended by the nurses, and they know me well enough by now to tell me the truth.
He did initially start off by explaining the bog-standard basics of how the thyroid works, what it does, about TSH, the pituitary gland etc...I let him continue for a minute or two, and when I started finishing sentences for him he laughed, and said "you obviously know all of this already". I replied that whilst I wasn't a doctor, my thyroid had pretty much consumed my life for the past few years, in both literature, education & research, as well as the hard-to-ignore physical symptoms. He seemed genuinely pleased to hear this.
I guess he has to cover all the bases when he sees a patient for the first time, so fair play to him for explaining things in a way that even the most confused patient could follow. Although he was preaching to the converted, I'm delighted that he went to the effort.

He was really pleased with my latest blood results, as indeed he should have been, and when I tentatively suggested that the TSH of 1.1 was pretty much perfect he drew circles around my results, on the page, and said that my current results are exactly what we need to aim for, and then strive to maintain...all in all, so far so good.

He asserted that as far as my height, weight, build etc were concerned he reckoned that my current dose of 150mcg was the right dose to stay on, but obviously regular blood tests, certainly in the early days post-op, would quickly pickup any signs that a dose change may be needed. And also that if I lost significant weight in the future, my dose would likely be reduced (another big positive for losing weight!)

I mentioned the occasional dizzy spells, which are getting less regular, and he said alas that was indeed down to the Eltroxin...but as long as they were only every now and then, there was no need to investigate further. However, if they did escalate, I should go straight to my GP and get it checked out. He explained that in a normal person, with a correctly functioning thyroid, the thyroid levels would naturally rise and fall throughout any 24 hour period, and now that the actions of my thyroid were being replaced wholly by medication, there was no way to naturally mimic the daily peaks and troughs of T4/FT4 demand, only to judge how much I'd need and hope it was distributed as needed...and that is why the occasional dizzy spell is experienced.

And on the same subject, I brought up the suggestion of taking my Eltroxin at night, before I go to bed, instead of messing around in the morning, and having to stay food & drink free for up to an hour after taking my meds...and he categorically said that no, I really should take them in the morning...as one of the peak demand times for T4/FT4 was at the beginning of the day, when you get up and do stuff and need to feel well enough to be active. And by taking the Eltroxin at night, I risked insomnia and sleeplessness from having the full dose of T4 in my system, and then also having it depleted somewhat by the morning when I needed it most. If what he's saying is true, then it makes sense. So for now, until I can find some compelling research articles that say otherwise, I will dutifully follow his instructions, and continue to think about ways of doing it that I will find sustainable for the rest of my life.

We discussed my desire to start a family, and he said that what he would want to see are three consistently good blood test results. My first set of bloods, post-op were 'OK', my latest set were 'Perfect'. If the next set were also 'Perfect' we can discuss it further, but he would prefer to wait for a third 'Perfect' set before giving us a definite green light. Due to the fact that we *will* have further thyroid level complications during pregnancy, so he would prefer us to be as close to perfect as possible, which should make things easier to control when they start going bad again.

And once again, it seems our wedding anniversary weekend will conclude with a visit to hospital.
Regular readers might remember that we got married in a local hospital, as a quirk of our county's civil registration procedure.
Last year we spent the morning of our first wedding anniversary, with me having a CT Scan done - gosh was that only a year ago? It seems that SO much has happened as a result of that CT Scan and the results it yielded. Here I am 11 months later, without a thyroid gland and I feel like that was a lifetime ago.
Our second wedding anniversary will most likely be spent having a long weekend away in the camper van, touring some wild & beautiful part of Ireland, with no fixed agenda...but we'll have to hurry back on the Tuesday, in time for my next Endo appointment on the 31st August. Hospitals and wedding anniversaries really *are* starting to become intrinsically linked, but as long as they are routine appointments, and not visits to A &E, then I'm happy to continue that trend!

Stones & Scalpels

Down another 1lb this week, which is OK.
Two 1lb losses in 2 weeks, and since starting these were the only two weekends I've so far spent at home, not drinking alcohol and not eating semi-crap...go figure? Clearly if I go out drinking & carousing over a weekend I lose more weight? Good thing I've got a 3-day music festival coming up at the end of the month!

And, I hesitate to say it, but that's my first stone gone...even though I promised myself, for my own sanity not to count this in stones this time, but instead to stick to 10lb segments...but, well...its my first stone...woo!

In other news, regarding my thyroid...the appointment with my surgeon *was* my pre-op consultation, and I'm now officially on the waiting list, and due to complications with my windpipe being compressed the surgery is supposed to be sooner rather than later. I will be admitted a week beforehand because my thyroid is so toxic that they have to get my levels as near to perfect before the op, otherwise the complications afterwards will be more severe, yikes! So, guys & gals, it could be next week, next month or next year...but more likely to be within the next few months.
I mentioned my GA fears to him, with regards to my weight etc...but he said he's operated on 'larger ladies' with no problems, and the operation really does need to be done ASAP because of the windpipe problem so they are unwilling to let me go too long.
Still, I'm going to keep plugging away with the Xenical as it really is the only thing that has worked for me for years. And I'm now "Double Wii Fit-ing" each day, to really go to task on the cardio and aerobic exercises....overweight or not, I want to be as heart-fit as I can be before the anaesthetist plugs me with happy juice!

As you know, I have Grave's Disease/Hyperthyroidism, complicated by a large, toxic, multi-nodular goitre...however I have only just learned that this pesky goitre has compressed my windpipe down to less than 8mm in diameter!!! Hence the problems I have with breathing, swallowing and snoring like a "pig with bronchitis, on a freight train" I feel I surely should have been informed of this after my CT Scan last summer...I distinctly recall my Endo saying the scan was fine and everything was good...ho hum!

So there you have it...my weekly update...the weight is still coming off, and the surgery plans have been brought drastically forward!

CT Scan & Wedding Anniversaries

We got married in a local hospital...a curious and, some may say, quaint quirk of my county's civil marriage process...so it kind of felt right to be starting our first wedding anniversary celebration attending another hospital, this time for my long awaited CT Scan appointment.

I had pre-warned my husband that we were likely to be sat in the waiting room for a good while. An hour or so would be a good guess-timate, as that was my average waiting time whenever I came to hospital for an appointment.

So we settled ourselves into the hard plastic chairs, ready for the long haul....with a good pile of magazines, books and as a last resort, the iPod.

You can imagine my surprise then, when almost as soon as my backside settled in the chair I was called through for my scan....and less than 20 minutes after walking into hospital through the main doors, we were exiting the main doors...all finished...and no plans for the rest of the day, other than meeting a friend loosely arranged for after lunch, due to the aforementioned, anticipated long waiting time for my appointment.

The scan itself was easy and stress free. I guess I didn't do enough homework on the various types of scanners, as I was expecting to be slid into a claustrophobic tube, and shut in there for eternity...but instead, I was gently scooted back and forth through what was essentially a giant doughnut, whilst a pre-recorded voice, with a nasal Australian accent, instructed me on when to breathe, how to breathe, and how long to hold my breath, as I gracefully moved back and forth through the ring of the doughnut.

And thus finding ourselves free and easy at 9.30am, appointment done & finished in less than 20 minutes, we re-arranged the meeting with our friend and hit the road.... to spend the rest of our anniversary weekend touring the west of Ireland in our camper van.

Wonder how I can incorporate a hospital visit for our 2nd wedding anniversary next year? I can see its going to be a trend with us!

Another day, another Endo

Today I got to see the Senior Registrar, and what a lovely, funny man he is!

We briefly chatted about my consultation with the ENT surgeon, and he made a few phone calls to see if he could do anything to put the 'hurry up' on my CT Scan appointment.

We discussed my weight, and the fact that I really do need to get it off, especially if I do decide to go for the thyroidectomy. He has referred me to a dietitian, to see if they can help...because as far as we can both see I'm doing all the right things, and getting all the wrong results. Of course my thyroid isn't helping, and so in order to find a way through the gloom we're both hoping that a dietitian might have a few more ideas.

He gave me some info leaflets on both the thyroidectomy, and the RAI, and then said that although the decision is still totally mine, he thought it important for me to consider a few things.

Radio-Actve Iodine Treatment (RAI)

• Obviously a lot less invasive, but....it doesn't always work first time and thus might need to be repeated.
• *might* reduce the size of my goitre, but this isn't guaranteed, and if it does reduce it, it won't completely get rid of it, so I may still have the breathing/snoring/swallowing problems.
• I'll have to stay isolated from *everyone*, including my husband, for up to 10 days afterwards. Stay away from young children for up to 2 months.
• We wouldn't be able to start a family for up to 2 years afterwards.

Surgery

• Will remove my goitre.
• Will remove my thyroid gland completely
• Will mean I'll have to take thyroid replacement medication for the rest of my life
• Will allow us to start planning a family as soon as my bloods level out after the op
• Carries risks, as any surgical procedure does, some of which may be short-term, some of which may be permanent, and include damage to the parathyroid glands (rendering the patient hypocalcaemic), voice box, laryngeal chords, damage to nerve endings causing loss of sensation, numbness etc etc.
• Not to mention they are digging about very close to some extremely important arteries there in your throat, namely your carotid.

Decisions, decisions, decisions....but I guess all this is academic until I've had my CT Scan, then we'll all know exactly what is where in there.

Routine Bloodtests 14th July 2009

I should have done these yesterday, but figured a trip to the hospital to see the ENT surgeon was enough excitement for one day. I'm currently on a monthly blood test schedule, as requested by my Endo, and as I'm due to visit him next week I normally schedule tests one week before my Endo appointment, in order to get the results back in time for him.

Was due to work in the shop today, so headed down to the doctor's surgery bright and early to be first in the queue....but no matter how early I get there (8.50am this morning) the car park is always already full when I get there, ho hum!

For some reason the needle really hurt going in this morning, and I'm truly not a wimp about these things....but my arm has remained sore all day!

I mentioned the strange patch of dark skin and dark hair under my chin (about the size of a 50c piece), and we joked that with everything else going on the last thing I need is to be growing a beard! She took an extra vial of blood and said she'd get my hormones checked this time around too.

She checked my blood pressure, and for the first almost the first time ever she was pleased with the result. When it came in at 150/80 even I cheered! Its always consistently lower when I check it at home, and after checking the accuracy of my personal BP monitor against her own sphygmomanometer in the surgery a while back, we concluded that I can occasionally suffer from white coat syndrome (Google it!) when it comes to checking my BP in the surgery. So, it seems we've finally found a blood pressure medication that seems to suit me. I did ask if there was a cheaper, generic alternative....my current BP medication (Omesar Plus) comes in at €1.24 per daily dose....and she raided her 'Sample Cupboard' and gave me 6 weeks worth, totally free of charge...result! She's done this for me in the past, and it really helps when my cash flow is so miserable.

She tried to ring the hospital x-ray department to see if she could do a 'hurry-up' on my CT Scan appointment, but all the phones were engaged, so she promised she would try again for me later, if only to make sure that a request had indeed been put in by my endo for an appointment on my behalf.

I weighed myself in my pyjamas this morning, and came in 13 lbs lighter than yesterday....amazing what a full set of clothes, and a pair of steel toe-cap boots can weigh!

Hopefully my blood results will be back on Friday, if not Monday at the latest, so I can update my graphs for whichever clueless intern gets to deal with me on Tuesday...watch this space!

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....

Endo takes my Goitre seriously!

When I was getting my bloods done the other day, in preparation for today's Endo appointment, I mentioned to my doctor that nobody at the hospital had been too concerned, or even interested in my goitre, no matter how often I mentioned it. I also showed her how much the right hand side had swollen up in recent weeks. She laughed and said "one look at that, and they'll be *VERY* interested this time, trust me!"

She wasn't wrong.

Once again, I was given a consultation with another fresh-faced young intern, but I didn't stay with him for long. One look at my goitre sent him scurrying for the Consultant Endo, and the rest of my appointment was with the boss himself.

He has decided to refer me for a CT Scan to check out the goitre, and also to an ENT consultant...just to make sure they have that covered. He mentioned the possibility thyroid surgery again, but also reminded me of the RAI option - essentially the decision is mine, I just need to do my homework and make the decision, if it comes down to it, but in the meantime it was worth setting the wheels in motion in case I decide to opt for surgery. I guess the goitre is what is worrying them, more than than my malfunctioning thyroid. He reassured me that it all still could come under control with the meds, and all this is purely speculative, but bearing in mind waiting lists for referrals etc we may as well go ahead and make a start.

My bloods are still out, my TSH is too high, and my Free T4 is too low - indicating that I'm very firmly in the Hypo camp right now. So we've dropped my Carbimazole from 30mg/day to 15mg/day.