Showing posts with label FT4. Show all posts
Showing posts with label FT4. Show all posts

Thursday, 15 July 2010

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 Justify Fullwaiting 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!

Saturday, 10 July 2010

*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...

Tuesday, 22 June 2010

Noooooooo !

Just back from my first Endo appointment since my thyroidectomy. Dragged my long-suffering husband along with me, as I didn't want to risk driving again, so soon after my weekend adventures.

The appointment went well. We've decided to stick with my current level of meds (150 mcg Eltroxin), his argument being that my FT4 is high at the moment, which should hopefully trigger my Pituitary to stop pumping out TSH. He also stated that this soon after the operation my whole system is still under stress, so we don't want to be chopping and changing the meds too hastily at this point, in other words give the dust a chance to settle, to allow us to see more clearly what is going on.

I asked him if I should be abstaining from taking my medication on the morning of future blood tests, or to just keep popping the pills as normal. He mumbled something about 'circadian' as if to himself, then declared that I should take my pills as normal (around 7.30-8.00am) and this would have no bearing on blood tests taken the same morning.

I also explained that I had learned from various sources, about taking the Eltroxin first thing in the morning and not eating or drinking anything for an hour afterwards (especially milk or coffee!). He agreed with this, and asked me how I was coping. He correctly assumed that this was the approach I was taking with the Eltroxin. I explained my morning ritual, of setting an alarm, popping the pills then going back to sleep for an hour...and sadly, he agreed that this was a good way of doing it. I was hoping he'd tell me some other miracle way of getting optimum results from taking these pills, without messing around with my sleep in the morning...but no such luck. maybe once we have my levels better I can slowly start to experiment....I don't want to f*ck around setting alarm clocks an hour before I want to wake for the rest of my life, nor do I want to sit around counting down the minutes to my first cup of coffee!

He asked me to make my next appointment in 3 weeks....yikes! If I have too many blood tests at 3 weekly intervals we're going to have to majorly cut down the food budget to afford them, but hopefully this won't last long, and I can get on to a more financially sustainable blood test interval soon.

And finally, as I headed to the door to make my next appointment with the receptionist, he dropped an absolute bombshell on me. He won't be there in 3 weeks time...in fact he won't be there again....he's transferred to another department!
Nooooooooooooooooooo.
...just when things were going so well, I really felt we were getting somewhere, and I found an endo who was a delight to work with, a genuinely nice guy, and who didn't treat me like a chart number, who always asked how I was feeling, regardless of the numbers....woe is me :-(

I can only hope that his replacement is even half as good. Watch this space...

Friday, 18 June 2010

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 :(

Saturday, 12 June 2010

Out with the Old

My Post-Surgery appointment letters for both my Endo and my Surgeon turned up in the mail yesterday, I'm back to see them on the 22nd & 24th of this month respectively.

And so I've pencilled in this coming Tuesday with my husband to go and visit my GP, and get my bloods drawn. (I still can't drive after the op, so he needs to take me wherever I want to go)

And it occurred to me that this next set of blood tests signified the dawn of a new era for me....my first set of bloods sans thyroid gland...and so my blood tests slate is effectively wiped clean, and we're starting all over again.

So, just to allow me to mourn the passing of all my old lab tests, here, for one last time are my most up-to-date lab graphs...



[the FT4 range 'wobble' is where the labs changed their testing technique,
and thus the ranges changed]


Looking forward to making new graphs, with my new results, in my new life :)
If nothing else, because they give my Endo a good chuckle - he loves them, and loves to show them around to his med students ha ha!
But also because *I* find them interesting, even if no-one else does!

Friday, 17 July 2009

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...







Tuesday, 19 May 2009

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.