NEWS: Monitoring thyroid hormone therapy is necessary

Original article HERE

Monitoring Thyroid Hormone Therapy Is Necessary - Marilyn Linton

More than a century ago, a 46-year-old woman's life was saved when her dangerously underactive thyroid was treated with dried sheep's thyroid. Since then, thyroid hormone therapy has become the gold standard of treatment for hypothyroidism (an underactive thyroid gland), though the hormone, called levothyroxine, no longer comes from the minced up glands of animals.

In fact, levothyroxine (produced in a lab) is among the top five prescription drugs sold in North America. Over nine million prescriptions for Synthroid, one brand of levothyroxine, were written in Canada in 2005, making it the second top-selling drug next to cholesterol-lowering Lipitor.

These drugs, also known as L-thyroxine or T4, provide for the thyroid hormone if your thyroid gland is unable to make enough. And there are lots of underactive thyroids out there, because hypothyroidism affects three percent of the world. M. Sara Rosenthal, a thyroid expert, writes in The Thyroid Sourcebook that roughly four to seven percent of people over the age of 60 are hypothyroid.

An aging society that's increasingly hypothyroid explains, in part, the zillions of pills taken annually; but many younger people also take it to address fatigue, cold intolerance, depression and a host of other everyday maladies. There's also the view that thyroid supplements work as a weight management tool. So no wonder that this medication has shifted in the public's mind from life-saving medicine to life-enhancing therapy.

Now, a recently published study underlines the fact that thyroid supplements are potent medicines that should be monitored annually by a doctor and respected by those who take it. In the study, conducted by a team of researchers from Toronto, elderly people who were taking medium to high doses of levothyroxine were found to have had two and a half to three times greater chance of suffering from a fracture than those who were taking a lower dose.

Eighty-eight percent of the people studied were women, says Dr. Lorraine Lipscombe, research scientist at the Women's College Hospital Research Institute. "We wanted to see if there was an effect of levothyroxine treatment on the risk of fracture on persons over the age of 70. Results of our study suggest that maybe these people were getting too much thyroid because their fracture risk was higher with these higher doses."

Of the 213,511 people studied, a total of 22,236 (10.4 percent) of people experienced at least one fracture during the study period which was between 2002 and 2007. The study was done using population health data bases in Ontario; hospital records were used to identify fractures.

The majority of people are diagnosed with hypothyroidism in middle age, she explains. "While initially they get monitored to try to get the right dose, once the right dose is determined, often times they stay on the same dose for years." As people age, their thyroxine requirements fall but their doses often remain unchanged into old age. "We are beginning to realize that the dose that was appropriate for them in middle age is no longer appropriate for them as they enter older age. People who are on thyroxine should go to the doctor and make sure that they have had a recent blood test to see if they're on the right dose."

Regular dose monitoring may not be done for a variety of reasons: People who have been on one dosage for years and who feel good on it may assume that the dosage is still appropriate; doctors themselves may overlook their patients' need for a blood test (which is necessary to confirm thyroid hormone levels), particularly when older patients present with other problems that need tending to.

Experts report that too much thyroxine speeds up the body's metabolism and thins the bones, but it isn't just the fractures that are worrisome. Too much of this hormone increases the risk for serious heart arrythmias, and muscle weakness. "Our job with this study was to raise awareness that thyroid hormone levels need monitoring. We estimate that about 20% of seniors are taking levothyroxine, so this has a big impact."

New guidelines?

The study, published in the British Medical Journal, suggests that the ideal dose of thyroid drugs should take the age of the patient into consideration. In Canada, one levothyroxine brand is called Synthroid; another is Eltroxin. If you're taking either, do not stop them, but check with your doctor at your next appointment about whether your dose needs to be changed.

The butterfly gland

The thyroid, a butterfly shaped gland situated at the base of the throat, naturally secretes a hormone that is responsible for regulating the metabolism rate of the body. Hypothyroidism, the lack of thyroid hormone, is treated with levothyroxine.

The Thyroid Sourcebook

M. Sara Rosenthal's excellent book tells you everything you need to know about the thyroid, its diseases and disorders. The thyroid cancer survivor and consumer health specialist also covers the latest treatment options and complementary therapies, the best tests, and how to spot bogus websites in the thyroid e-health movement.

The Thyroid Sourcebook - M. Sara Rosenthal Ph.D

The Thyroid Sourcebook For Women - M Sara Rosenthal Ph.D

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!

*1* is the magic number

Forget *3*, in thyroid-land *1* is the magic number!

For those of us doing battle with our thyroid glands, or in my case now sans thyroid gland, juggling medication levels to emulate our thyroid function, 1 is the magic number. Not all doctors and Endo are aware of this purported holy grail of TSH readings, but so much research and information out there in the real world points to the fact that a TSH of 1 (or as close as dammit) is desirable for optimum well-being.

I've only been near the magic 1 twice since I my first official thyroid blood panel, taken in 2004. The first one was back in July of 2009, with a TSH of 0.65...alas that was a very short lived 'blip', in June '09 my TSH had come back as 4.64, and by August '09 it had dropped to 0.01, firmly back in hyper-land. I can only assume, that somewhere between September '08 and January '09 it also crossed the magic 1.0 threshold, albeit for a day or so, as it swung from 0.03 up to 18.3, well into hypo-land. and most recently, the last time was a month before my thyroidectomy, when the bloods taken on 12th April '10 came back with a TSH of 1.36.

But yesterday, I came back from my GP's surgery staring at a copy of my latest lab results, with a magical 1.1 in the TSH column. FT4 wasn't so bad either at 20.7, just 0.6 above normal ranges...and as explained to me by the kind folks on the Thyroid-Disease Support Forum it was suggested that since I no longer have a thyroid gland at all, a slightly high FT4 is OK, if not desirable. "Barbara" on the T-DSF wrote "when you are on complete [thyroid] replacement you need more T4 because of poor peripheral conversion to T3 in your body tissues. A normal thyroid produces mainly T4 and it also produces a little T3 too but once your thyroid stops working, either by disease or removal, you need extra T4 to compensate."
As I understand it, form the crash course I'm currently undergoing regarding life without a thyroid gland, I need to be aiming for a TSH as close to 1 as possible, and FT4 slightly above range...and if this latest set of bloods are anything to go by, I'm there, right here, right now!

But...and there always has to be a but...only by subsequent blood tests, presumably scheduled within the next 2-4 weeks, will we know for sure if it is all levelling out and reaching some kind of 'perfect' thyroid equilibrium, indicating my bloods are spot on, and in turn, that my medication levels are perfect...or if my TSH will continue to drop (2 weeks ago it was 4.07 (indicating I'm possibly over-medicated) or indeed, bottom out and start to rise again(indicating that I'm under-medicated).

Still lots of hypO cramming to do before I see the NEW Endo on Tuesday, but I feel I'm just starting to get my head around how to lead a gland-less life, and will have some newly-learned armoury to take in with me to my appointment, just in time for the *all-switch* medical staff rotation that takes place in teaching hospitals across the land...

A few articles of interest, regarding 'optimum' TSH...

*Normal* TSH - An article on optimum TSH published by Thyroid Australia Limited

UK Guidelines for the Use of Thyroid Function Tests - go to page 25

TSH, Temperature... - An article by Dr Raymond Peat MA PhD

What is the Optimal TSH Level for Thyroid Patients? - An article by Mary Shomon

And finally, I love the idea of this, and look forward to giving it a go!

Yoga Can Help Thyroid Conditions - an article by Dear Thyroid, posted on Opposing Views


In other news....I would have posted this blog yesterday evening, but I got ghoulishly caught up in the media circus regarding Raoul Moat and the inevitably fatal end-game, and I ended up glued to Sky News until 4am...

Driving Miss Stiffneck

I drove out late this afternoon to collect my blood test results.

This is the first time I've driven since the op...and in hindsight, it was perhaps a little too soon. I still have very little neck mobility, so checking to the left & right at junctions and roundabouts was interesting to say the least. And because I drive ancient old German cars, with no power steering or other modern nonsense, sharp corners and turns were harder work than my neck & shoulders would like them to have been. I have a feeling I'm going to pay for my precocious driving adventures later this evening, and possibly tomorrow too...so, in anticipation of that, whilst I was out I stocked up on extra painkillers too ha ha!

I think I'd have just ploughed right through the middle if I'd had to deal with this set of roundabouts today...



With regards to my blood tests, I was little dismayed to see that I'm slightly hypO. I say dismayed, but lets be realistic...I guess perfect bloods, and the perfect Eltroxin dose, immediately after my thyroidectomy was impossibly optimistic.
My TSH came in at 4.07 (range 0.15-3.2), and my Free T4 came in at 21.8 (range 9.9-20.1). Only marginally hypo really, but with results like that, the labs obviously didn't bother testing the FT3 and T3.
I'm certainly not experiencing any major hypo symptoms, certainly nothing like I've experienced in the past when I've been hypo before...which I'm glad of, because those few months, back in 2009 were truly a living hell!

My Urea levels are above normal for the 2nd month in a row. Definitely something to mention to my Endo next Tuesday. This month they were 8.0 (range 2.5-6.7) and last month they were at 7.1. For the previous 2 years they have consistently been between 4.0 and 6.0 so definitely something I'd like to investigate further. It may just be because I've rediscovered my love for filter coffee, and I'm not being as disciplined regarding my water intake these days.

Delighted to see that my WBC count is higher this month, higher than they've been since almost forever. Up to 7.8 (range 3.9-11.1) from last month's 6.1 my WBC has never been out of lab ranges, but there has been a definite downward trend since I started taking the Carbimazole, something I've been keeping an eye on even if neither my doctor nor my Endo have been too worried about it when I've drawn it to their attention. And I hope that is because I'm no longer taking Carbimazole, a side effect of which for some people is lower WBC counts.

I'm meant to be heading off camping with some friends tomorrow night, but I really am going to have to wait and see how much of a fuss my neck makes after driving today...I hate to admit it, but I may just be trying to do too much too soon :(

Painkillers, Bloodtests & Cinnamon Bagels

Today I'm sore again. My neck / throat hasn't physically hurt for a good while. Its been uncomfortable, its felt awkward, it's nearly always stiff, it generally feels like someone has a good tight, choke-hold around it....but it hasn't been sore. Yet today it is hard to swallow, no, painful to swallow...and ironically, swallowing the painkillers this morning was the hardest thing to do. I almost gave up on lunch completely, and was tempted to make a cup-a-soup instead. Its not sore in a 'sore throat' flu way, but sore as in it felt like I was trying to push food or liquids down past a very solid (and bruised) brick...and occasional stabbing pains in my chin area, and in the left-side of my neck.

I don't know why today should be any different, why I have this throat / neck pain. I have a stupid little theory that my painkillers are working so hard on my period pains - which usually cripple me, to the point of lying on the floor flailing & wailing like I'm in labour, and which are currently barely even making background noise in the pain-stakes - that they aren't working on my neck pain. Highly improbable, but its an explanation which my head is happy to settle with.

Hubby and I headed off to my Doctor this morning (I'm still not able to drive) to get my blood tests done, in anticipation of my Endo appointment next week. The first trip was a wasted effort as she had swapped her Nursing Home Visit from Wednesday to Tuesday, so we went home for an hour or two. I made a Chocolate Biscuit Cake (diet is back on the shelf for another week ), whilst hubby made the most of his morning off from work, and caught up on Top Gear re-runs on the Dave channel. We went back after 11.30 am and it was 2nd time lucky. I explained about today's pain, and how I hadn't had actual pain in my neck since I left hospital, but she reminded me that after a thyroidectomy, my oesophagus was likely to be sore for a surprisingly long time. And that it would most probably continue to remind me occasionally that I wasn't as healed as I thought I was.

I also surprised myself by explaining to her that whilst in general I feel OK, I also feel like I'm still 'treading water', only now instead of waiting for my op, and thus in my head for the rest of my life to begin, I'm now sitting around waiting to start feeling hypO. I was just sitting there in the waiting room, thinking to myself how cold it felt. Then I started looking at the other people sitting there, and wondering if they felt a little cold too, or if it was just me. I almost collapsed with relief when one lady piped up to her neighbour and commented on how cold the waiting room was, given the sunny weather outside! Phew, not just me then! Until that moment I don't think I'd even confessed to myself how much I have been possibly over-analysing every little feeling and trying to fit them into the well-known list of classic hypO symptoms.

We also discussed the info I'd discovered on possibly interactions between Xenical and Levothyroxine / Eltroxin. And she reassured me that she had a few thyroid patients successfully combining Eltroxin and Xenical, showing good weight loss, with no significant impact on the efficacy of the Eltroxin. So once the Chocolate Biscuit Cake is safely eaten up and out of my fridge, I'll consider digging out the magic blue pills again. She reassured me that they would be monitoring my thyroid levels *very* closely over the next few months, and that any dose changes needed, would be picked up very quickly. So now was as good a time as ever to start back on the Xenical, if I wanted to do so. But she did also say that if I didn't feel ready to knuckle down on the diet again, and wanted more recovery time, to make my own judgement as to when to start back on the diet pills again. She knows, as well as any of us girls do, that sometimes, when you're feeling low, or in pain, or just a little sorry for yourself...chocolate *IS* the only remedy! :)
(And chocolate is most certainly *NOT* an option when you're taking Xenical!)

In other news...is there a world shortage of Cinnamon Bagels, or is it just localised to my town? I'm hooked on them...but my long suffering husband took me from shop to shop searching for them, and in the end I had to settle for 'fruit loaf' instead....and there is just NO comparison.

Eltroxin Hell & Chocolate Heaven

Of course it is inevitable that if you need something urgently from a pharmacy, it's a Sunday.
Or even better, in this instance, its Bank Holiday Weekend, so the pharmacies won't open until Tuesday.

I've noticed the same law applies with my dogs...if they fall ill, or have an accident, requiring veterinary attention it'll nearly always be on a Sunday...and trying to find a co-operative vet on a Sunday around here is even harder than finding an open pharmacist!

So this afternoon, having run out of Imodium, I found myself on the phone to the local Out-Of-Hours Doctor Service...begging the doctor to tell me that this diarrhoea hell will eventually stop, and asking the hours of the On-Duty pharmacist.

Of course, across the whole town, only one pharmacist is opening....for only one hour per day...and I've missed today's 60 minute prescription dash.

Which left me with no option, but to ride out the rest of today's Eltroxin side-effects, and, with the doctor's agreement, to delay taking my Eltroxin tomorrow until 12pm, when my husband can make a dash to the pharmacist to re-stock in Imodium, before he shuts his doors to the ill folks of this town again at 1pm.

The Out-Of-Hours Doctor assured me that my body would indeed eventually get used to my new dose of Eltroxin, and he promised it would be sooner rather than later...I hope he's right, because this is hell!

My husband and I have spent most of this evening driving around all the bigger supermarkets and petrol stations in the hopes that they may have a secret stock of Imodium, but to no avail. Seemingly I can buy all sorts of things off the shelf, but not something that will stop diarrhoea...and now why would that be? I'm quite sure I can do an awful lot more damage to myself with a couple of 12 packs of paracetamol, than I ever could with a boring pack of Imodium!

I'm now going to console myself by making up a huge Chocolate Biscuit Cake, in anticipation of Mum's birthday tomorrow. I just might have to cheer myself up by licking spoons, and licking the bowl while I'm doing it...and if the Eltroxin doesn't like it, well tough!

Out & About

Had a mini trip into town this morning...not sure it was wise in hindsight, but I was very glad to get out and do something, even if it made me feel absolutely shattered and extra-wobbly for the rest of the day.

Of course it was one of the hottest days we've had, so I felt a right wally staggering around town with a scarf wrapped around my neck. In hindsight, perhaps the 'freak-stares' that my scar would have earned would have been preferable to the sweaty, beetroot face I presented to the public instead.

But its Mum's birthday on Monday, so not trusting hubby's card-buying or present-buying abilities, I lost them in the supermarket, and went off to do some secret shopping.

Of course, all this had to wait until the after-effects of taking Eltroxin (see yesterday's blog) had done their worst, and my dose of Imodium had kicked in and started working...ho hum!

I know you're just dying to see how my neck looks now, so here you go gore-fans:

Uh oh - New Meds Blues

Took my first dose of Eltroxin this morning...and it went straight through me :(

Checked the data sheet, and sure enough diarrhoea and stomach cramps are listed as a side-effect.

99% sure that its the Eltroxin...as my other meds haven't changed at all in the last 5 days.

I guess only time will tell. At the end of the day, now that I'm technically hypothyroid, there aren't too many options for medication...so my body is just going to have to suck it up princess!

Other than that...I guess I feel OK. Still wiped out, wobbly & tired....but SO nice to sleep in my own bed last night.
Although I still found myself waking up at 2am waiting for my bloods to be taken, waking up at 4am for my blood pressure to be checked, 6am for the drugs trolley, and was most surprised that my surgeon was a "no-show" in my bedroom at 8am...although, if he had turned up, my husband would have been incredibly surprised! Ha ha!