This is NOT an April Fool!

"Hello love, this is not an April Fool" is how I started the telephone call to the husband this morning.

"But I really don't feel very well, and I think I need an ambulance" is how it continued.

Can only imagine how the poor fella felt upon hearing these words. He was over an hour away in Kilkenny this morning, instead of being at the farm less than a mile away...but I felt so odd, so very ill, and I knew the quickest way to get an ambulance here was to let him deal with it.

We live in a rural part of Ireland...where your address is your townsland, not your property name. Properties around here don't generally have nice identifying names, like "The White Cottage" or similar, and a host of local houses, farms and dwellings would all share the same postal address. And roads don't have names or numbers either. We've been here for 7 years, but if chatting to a local, trying to describe where you live, all efforts draw a blank face, until you say its T** M****'s old cottage or next to J** E*****'s dairy parlour...and then the facial expression changes to one of total recognition. And I knew that time was running out for my mental capacities, and me trying to explain to the Emergency Dispatch operator where exactly to send the ambulance was going to be nigh on impossible. So I handed that responsibility to my husband so that I could concentrate on trying to remain upright, and trying to keep breathing...a feat which was getting more and more difficult to maintain by the second.

What was going on? Well, at the time I didn't have a clue. All I knew was that something was seriously wrong. It had come on suddenly, and was getting worse, very quickly!

That morning, as usual, I got up, set the coffee machine going, took the dogs out for a wee, poured a mug of coffee. Took a blood pressure pill, with a swallow of coffee. I'd been up a bit during the night with bad period pains, and could feel them just starting to niggle. Day 2 of my cycle,and if any day is going to be bad, typically it is day 2....so as I have done, on every other bad cycle day (thankfully few 7 far between) I decided to take a Difene, to get a head start on it, before the pain took hold and nothing would shift it. Difene shouldn't be taken on an empty stomach, but not feeling hungry, I drank a glass of milk with it instead. As I have done almost every other time I've taken it, or other meds that need to be taken with or after food.

I settled with my mug of coffee, to watch a bit of mindless television, do a bit of knitting (rock & roll!) and sort out in my head what I needed to do for the day ahead.

Then, woompf...my head felt hot, very hot, psycho hot...like it was going to explode. I swear, if I'd looked in a mirror at that very second I would not have been surprised to see my whole head raspberry red and glowing. Then the itching started...mad itching, everywhere, I just couldn't scratch fast enough, hard enough, or in enough places at the same time. It felt like my entire skin was crawling. Then my heart started racing, I had the sense of mind to check my pulse in my neck, and it came back at a whopping 130/min...yikes! I fumbled for my home blood pressure machine, and struggled to get it on my left arm...all the while the itching was unbearable, and my head was boiling. "ERROR", try again, "ERROR". Chest feels tight, struggling to get air in....so that's when I decided I needed to make a call. "Hello love, this is not an April Fool..."

I tried 3 more times to get the blood pressure machine to take a reading, but I just kept coming back with "ERROR".

Husband phones back, the ambulance is on its way.

So, my practical side kicks in, and I think of the things I need to do before they get here whilst I can still just about stand and move about. Legs are very wobbly, breathing is now really hard work and my head is spinning with mega-dizzy spells, but I get the dogs shut away. I find my hoody, and make sure my mobile phone is in my handbag. I put my handbag near the front door. I grab my meds box and stick it on the kitchen table. That way I can easily direct the paramedics to see what I have taken that morning. I am surprised looking back now, remembering how awful (and scared) I felt at the time, at how sensible, practical and organised I was, in getting stuff sorted and ready for their arrival. But by the time they got here (not sure how long, but less than 10 mins) I had given up. Front door was wide open, bedroom door was wide open, and I was lying on the bed, unable to stand up anymore, in total agony from severe abdominal pains which have come out of nowhere, and seemingly have come to join the *fun party* that the rest of my body is having at my expense. My head is feeling like a piping hot baked potato, chest so tight I can barely draw breath, my speech is slurred and finding words in my head is almost impossible and my pulse has now massively slowed down and is so feint I can hardly feel it. And, whilst going through all this, all I can think of is "I hope ***** isn't working today because the house is a mess!" (our landlord is a paramedic).

When they do arrive I see that another paramedic friend is working today instead, and the very first thing I manage to blurt out is "I'm so glad its you working and not *****, please don't tell him about the mess in the hallway." A girl has to get her priorities right! But that outburst takes away all my remaining energy, and I collapse back on the bed, and can only then manage to grunt and gurgle at them in answer to all the questions they're firing at me. I have stuff stuck on me, things poked in me, torches shined at me, hands pressing me, and feel their blood pressure cuff inflating again and again and again. Its not reading, so they take a 2nd blood pressure machine out of the ambulance and that takes two more efforts before it finally gives a reading....low, very, very low...obviously too low for my humble home machine to detect, and the paramedic's first machine couldn't read it either. They do more stuff to me, fire more questions at me, then I'm put in the ambulance.

Various sticky electrodes are stuck on me, and I'm plugged into the heart trace machine. The abdominal pain is becoming totally unbearable, being strapped flat on the ambulance trolley is not helping, I feel I want to curl up in a tight ball and moan loudly, instead they plug the happy gas mask on my face. My friend is wondering if I've tweaked my vagus nerve, causing the blood pressure to crash. But that only explains one symptom doesn't it. I'm feeling a little better, and almost able to hold a proper conversation. But the abdominal pains are coming in waves now, so I go quiet every now and then and ride the pain through as best I can.
We discuss last night's meal, in case food poisoning is another option. But I get the impression he's really scratching his head over this one.
The conversation keeps coming back to the Difene. Did I eat anything, have I taken it before, why did I take it, what as it prescribed for.
At one point I ask them to turn back (only half joking) because I've left my knitting on the table. Surprisingly they don't.

When we get to the hospital I feel fine. I really do feel fine. I joke that if they are heading back to my home town (where the local ambulance station is located) could they give me a lift. They are having none of it, and I'm taken into the A & E department. By this time my blood pressure is almost back to normal. My blood sugars are good (they always check this, I obviously look like I *should* be diabetic). My pulse is back to normal. Only the dizziness and abdominal pains remain. They are similar to period pains, but in slightly the wrong place.

The duty doctor tries to take bloods...I say tries...I really have no idea what he was doing. But by the time he'd finished there was blood all down my top, all down my arm, all over the bed, all over my thigh...and very little in the sample tube. He stuck a cannula in, so that if more was needed he didn't have to go digging. I swear I looked like car crash victim by the time he finished taking blood. I am SO thankful to have a wonderful GP who is seemingly a true artist when it comes to taking blood samples...no pain, not even a scratch, no marks, nothing. If I would give her 10/10 for her phlebotomy skills, I'd struggle to give the A &E doc 1/10...! I don't know quite how he did the cannula either, but all the while the cannula was in I couldn't bend that arm, and it was almost constant pain, felt like I had a knife in there, stuck at right angles. Perhaps it was intentional, to keep my mind off my other symptoms?

He paraded a line on fellow doctors past me, all asking the same questions and doing the same things to me. But it all kept coming back to the Difene.

Then the news filtered back from the labs that the first blood samples had haemolyzed...quelle surprise! And so he came at me with the test tubes again for more blood...and even with cannula in place, still managed to spill more blood all down me!

At this point the abdominal pains were all but gone, and I hadn't had a dizzy spell for a while. Getting fed up with his incompetence, I was ready to go home. But oh no, he was adamant that I needed to be admitted overnight, for observation. We had a bit of a row over it, and he dragged out a form for me to sign, acknowledging that I was leaving against medical advice. I said I didn't want to leave against medical advice, but I didn't want to take up a precious bed space when I was clearly feeling fine, so would much rather he discharged me.

The bloods came back fine. They also did a thyroid panel, standard procedure because I don't have a thyroid gland, but those results wouldn't be back for 2 days. But the immediate blood results were all grand. I repeated that I wanted to go home. He insisted I stay in overnight. Round and round we went.

I got sent to the Clinical Assessment ward. 3 More consultants came and asked me the same questions, poked me in the same places, and all muttered about Difene. One more consultant came in, read through my notes, murmured to himself. Then stated that whilst they would like me to stay in for observation, they were also happy for me to go home if I preferred, on the understanding that if any of the symptoms occurred again I was to come straight back. Yay! A compromise I was entirely happy with! They removed my sexy hospital ID bracelet, and a nurse, sent from the gods, finally removed the evil cannula...without spilling a single drop of blood, amazing! The final diagnosis was that although they couldn't say 100%, the mostly likely candidate was an anaphylactic reaction to the Difene. Mild in many ways (no throat swelling etc), serious in others (racing pulse, BP crash, shortness of breath), but if that was mild, I can only imagine how scary a full-on anaphylactic attack is...this morning I was truly terrified.

My husband rocks, and I apologise wholeheartedly for giving him the phone call from hell this morning. The remaining Difene tabs are going back to the chemist tomorrow, to be disposed of.

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!

My Head Is Spinning

"I don't know what's going on right now. I'm a little foggy, a little dizzy. It's crazy. Crazy!" Robbie Ginepri, American Tennis Player

I know exactly how he feels! I have been getting dizzy spells the last few days, just little ones...but they're becoming more frequent.

My pharmacist warned me about dizzy spells and feeling woozy when I first picked up my script for Eltroxin. She said if I felt a bit weird to head to my GP and get my blood pressure checked, just in case. She claimed that Eltroxin could sometimes cause your blood pressure to plummet, as your body adjusted to it etc.

So I checked my BP at home just now, after my most recent dizzy spell, and its fine (and yes, I have checked the accuracy of my own machine against my doctor's sphygmomanometer). My BP came in at 123/87....at the high end of normal, but not quite into the high-normal range, if that makes sense...but definitely not low, which is what the pharmacist warned me of.

Looking forward to getting my blood tests done again next week, was just discussing with hubby that I *think* I might be going slightly hyper....just a hunch. But the last couple of days I can't sit still, I want to be doing stuff constantly...real ants-in-your-pants, fidgety frustration and anxiousness (without being quite full blown anxiety) to get up and go...do stuff. I'm going to bed stupid late (around 2am) and lying there with my head buzzing to bursting point with thoughts and ideas, because I'm not tired, then up early in the morning raring to go, but with nothing to do, and getting frustrated with that...or with so much to do, but not enough cognitive organisation to get stuck into anything, so I don't know where to start!
I also can't keep a thought in my head for more than 30 seconds, and I imagine trying to hold a sensible conversation with me right now is a total nightmare, as I keep jumping from subject to subject, with no logical train of thought....just blurting things out as they come into my head, because if I don't I'll forget what I was thinking about.

Low BP...eek!

Checked my blood pressure not long after I posted earlier, as I was feeling really, really crappy and it came in at a worryingly low 113/55
Will keep an eye on that for the next few days...due to go into my GP for blood tests next Monday, and hopefully I won't have to go in beforehand!

I'm on medication for High Blood Pressure (Hypertension)...namely Omesar Plus...and it would be nice not to have to take them anymore, but I'm not holding out much hope...I think it was just one of those blips.

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....