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.

Blood Test Results - July 2009

Picked up my blood results this morning....and for the first time in several years my Thyroid Stimulating Hormone (TSH) and Free T4 (FT4) are actually within normal ranges, and my TSH, at 0.65 is not far off the optimum of 1.0. All well and good, but then shy do I still feel so shit? I can't help wondering, and hubby is of the same opinion, that these blood test results are merely a lucky snapshot in time, catching me as I swing through the *normal* ranges, on my way from being hypO to HypER yet again....I guess next month's results will prove or disprove that particular theory.

Still no sign of any testing for Free T3 and T3. My T3 levels haven't been tested since April 09, and my Free T3 hasn't shown up on any results since September 2008....I don't know why the labs don't test these two any more....last time they were tested they were both well out of range, and I'd really like to see where they are now, in relation to my TSH and my FT4

On analysing the rest of my results it seems that my LDL-cholesterol is coming down, and my cholesterol is well within range, despite minimal changes in my diet and my (lack of) exercise routine. My LDL-Cholesterol is still slightly above normal at 3.53 (range 2.6 - 3.38) and my Cholesterol reading is well in range at 5.3 (range 4.0 - 6.7) So I wonder if my increased LDL cholesterol/cholesterol is linked to my hypO status? When I was very hypER, back in February of last year, my cholesterol levels, if anything, were at the low ends of the normal range. And when I went hypO, my cholesterol levels went up for no apparent reason.

Another thing of note is that longer I'm staying on Carbimazole (current does is 5mg/day), the lower my white blood cell count is going. Since starting on CBZ my WBC count has gone from 9.4 to 6.4. And also of note, my neutrophils have dropped from 6.08 to 4.52 Something else to definitely keep an eye on, as one of the most serious side effects that has been recorded with the use of CBZ is agranulocytosis, when your WBC and neutrohpils drop suddenly, you suffer bone marrow depression, and you become very ill very quickly with a raging sore throat and high fever.

This time around, due to a patch of dark skin and dark hair under my chin, my doctor requested that my hormone levels were tested...but the amount of information I get back from these is negligible to say the least, as its hard to decipher the lab ranges on the report sheet. As far as I can tell, my follicle stimulating hormone (FSH) levels are OK at 12.7, my Leutenising Hormone (LH) levels are good, at 2.7, and I think my Estradiol (oestrogen?) levels are low, at 98...but as I said, instead of plain old lab ranges on the report sheet there is instead a paragraph of gobbledegook, so this is pure guesswork on my part. There was no note from my doctor when I collected my copies, so I assume all is OK, or at least 'on plan'. Will try and discuss my hormone levels with my Endo on Tuesday if I remember to ask him, maybe he can explain the gobbledegook to me?

After an idle hour or two, playing on MS Excel, here are some graphical representations of my blood results to date...I find it handy to do these up and print them off for every Endo appointment. That way, if I meet yet another new intern, we don't spend wasted time going over my case history from the beginning each time...

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....

All Change on the meds front

Popped into my doctor's surgery today to get some forms filled in, and she decided to check my blood pressure whilst I was there.

I've been on Centyl-K since February, in an attempt to lower my blood pressure, but it was still consistently high.

She decided to stop the Centyl-K, and try me on another hypertension medication, Omesar Plus.
In her words, the Centyl-K isn't working, I may as well be popping Smarties!

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.

Hot or Cold?

I've always been *hot*...ha ha, no, not in that way!

But I usually love winter, and loathe summer. I overheat in summer, suffer from heat stroke and heat rashes regularly, and any prolonged hot temperatures always made me feel very ill. (well, as hot as it can ever get in Ireland and the UK)
Alternatively, in the winter, I could swan about in flip-flops all winter long, walking the dogs through frosty fields, simply washing mud off my bare feet before I came indoors, and wearing t-shirts and thin cotton trousers all winter long, only resorting to a jacket of any sort when it was raining.

Now I'm tipped over into hypO I've suddenly swapped thermostat, and I find I am permanently cold. NO matter what I do I can't get my feet warm. I go to bed with thick woollen sicks on, worn under my bed socks. Hot water bottle. Electric blanket on. Oil-filled radiator plugged in and t-stat turned up. Poor hubby is trying to sleep, dripping with sweat, while I lie there trying to get warm enough to drop off to sleep. I sit in the study (working) or lounge (lounging, ha ha!), in a fully insulated house, with the central heating on, and despite being fully dressed, several pairs of socks etc I've generally got a hoodie and or a fleece jacket on, often a woolly hat and scarf too, usually at the very least I've got a blanket wrapped around me and I just feel SO cold. Hubby keeps turning the thermostat up for me, the house is intolerably hot for him, yet I just feel constantly chilled. "