Throwing thyroid into the mix

June 15, 2010 at 9:10 pm | Posted in Me, rheumatoid arthritis (RA) | 5 Comments
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I went for monthly MTX blood tests today and remembered to ask if the thyroid results were normal – I’d assumed they were, since no one at the surgery had bothered to contact me. They weren’t.

Having said that, they weren’t all that abnormal either, so what are we doing about it? In their case nothing as yet, in my case getting rather confused …and cold …and tired … and achy … but mostly just confused. Until I went in and asked for the results I thought a thyroid test was just that, one test, one answer – OK, not OK, whatever. But no … it turns out there’s a test for thyroid stimulating hormone (TSH) which is produced by the pituitary gland and stimulates thyroxine production from the thyroid gland. Then there’s tests for the two types of hormone the thyroid gland itself produces, thyroxine (T4) and the other one whose name I can’t remember (T3). Counter-intuitively, if you have lots of TSH sloshing about it means your thyroid might be UNDER-active, because you have to produce a lot of TSH to get the thyroid to do anything at all. If you have loads of T3 and/or T4 (produced by the thyroid gland itself) then you obviously have an overactive thyroid as the thyroid is producing loads of the stuff. If you have very little then clearly you have an under-active thyroid.

Symptoms of the latter include feeling cold when it isn’t (box ticked), weight gain or difficulty in losing weight (box ticked), muscle aches (box ticked), abnormal menstrual cycles (oh yeaaaah!), decreased libido (what’s libido again, somebody?), irritability (well … erm … guilty) and memory loss (not sure, can’t remember). However, my levels of T-whatever – not sure if they tested for T3, T4 or both, are in the normal range. My level of TSH though is just outside the normal range – just a smidge too high. As a consequence the docs have decided to wait and see. I can totally understand the logic of this – apparently it does fluctuate and it’s not as if it’s wildly off the scale, so try again in another month and see if it’s still high, and if the levels of T-whatsit have decreased or not.

Really – I can totally understand that – but it’s just sooooo frustrating, as I sit here grumpily shivering, with period pains! (Oh yeah, and a flare just to increase the fun.)

One interesting thing – apparently the most common cause of hypothyroidism (under-active thyroid) is an autoimmune problem. Surprise, surprise!

As to the confusion – I’ve just about got it straight in my head that there are all these tests and roughly what they’re for, but nowhere can I find clear guidance as to what is and isn’t normal range for any of these tests – it seems that for TSH it used to be considered that up to 5.5 was OK, now they reckon about 4.5, or maybe 3.5, or sometimes 2 depending on who you ask, and apparently some authorities in the UK reckon up to 10 is fine! I’m just going to go off and find a nice sandpit to bury my head in for the next month.

I’m fed up with being a yo-yo!

March 24, 2010 at 10:46 am | Posted in Me, rheumatoid arthritis (RA) | 7 Comments
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On the plus side, at least a yo-yo goes up as well as down! I’ve had another mini-flare (fizzle, floret?) since I last posted, which is why I’ve been so quiet lately … well, that and the fact that work has been insanely busy lately. I rather strongly suspect the two are connected!

I have posted before, once or twice :-) on the importance of pacing yourself and a week or so ago I gave a great demonstration of exactly how now to do that! Worked long hours, worked part of the weekend, ignored the warning signs, took paracetamol or rubbed in magic herbal rub stuff and just kept on working … and of course woke up one morning almost unable to get out of bed. I did get out of bed … still had deadlines to meet, but came home early in a LOT of pain.

So, what would a sensible person do at this point? Take some painkillers, go to bed and have a bit of a snooze probably. I thought, ‘Well, I don’t feel well enough to work but I still have all this City and Guilds embroidery stuff I need to do, so I’ll go to bed with some research books for that …’

Eventually I reached a point where I HAD to go to sleep, but was still trying not to as I thought that would mean I wouldn’t sleep at night. I got to the point where I realised that I’d need matchsticks if I was going to keep my eyes open and gave in.

At this point I was still in a LOT of pain but did drift off to sleep … and woke up an hour later feeling fine! I know sleep is important, but that’s a really extreme example! And I did sleep well that night too. I must have been really sleep deprived and not even realised it!

Mind you, waking up with five to ten hot flushes (flashes) per night is not exactly helping on the sleep front.

Still, things are looking up – work is now steady (which means that I’ll be panicking in a week or two that there’s not enough), apart from one odd twingey pain in one knuckle I’m not bad on the RA front … the yo-yo is on the upswing again … and will hopefully sit at the top for a while at least!

No improvement in patient access to RA treatment in seven years

February 23, 2010 at 2:25 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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According to the Management in Practice website , which is a website for GP practice managers, the delay in getting patients proper rheumatoid arthritis treatment is the same as it was seven years ago. I suppose we should be grateful it hasn’t got worse!

Worryingly, to my mind, they say, “The Commons Public Accounts Committee has revealed that patients could suffer damage to their heart and lungs if access to treatment is delayed.” Well I have two things to say on that point. Firstly it’s not exactly a ‘revelation’ by the Commons Public Accounts Committee, but that’s more of a personal gripe about writing style than anything. More fundamentally there appears to be no recognition that patients could suffer permanent joint damage and a drastic reduction of quality of life if access to treatment is delayed. It’s as though ‘heart’ is the magic buzzword – if you put ‘heart’ in your article, at least when it comes to GPs who are forced to be target driven and probably have a big government target about reducing heart disease right now, then people might take action!

Mind you, they say that the average number of visits to a GP is four, before a patient is referred on to a specialist, and blame this on a lack of GP training. I would have thought that wasn’t soooo bad. It is hard to diagnose. It does vary enormously between patients. And it is possible to show symptoms that appear to be RA and then disappear – it happened to a good friend of mine. So I would have thought that an average of three visits (maybe not four) and attempts at less drastic treatment like ‘take Neurofen’ would not be unreasonable. I was very lucky – I had two visits before my referral and the GP spotted immediately that it might be RA and organised a blood test on the first visit. However if I’d been seronegative (negative RF test) then I shudder to think how long it might have taken!

Apparently, according to the same article on the same Commons report, “GPs receive on average only two hours of teaching on musculoskeletal conditions during their training, including minimal coverage of inflammatory arthritis.” I have to say I find that hard to believe, but if it’s true then it’s pretty scary, and it might explain why it’s taking 6-9 months to get people referred.

They also say that there’s a lack of awareness among the public of what symptoms to look for. I’m sure that’s true, and that does stop people going to pester their doctor when they have intermittent pain, but I suspect another thing that stops people going to see their GP is the difficulty in getting an appointment in the first place! But that’s another story for another post on another day …

Seeing RA under every stone

February 8, 2010 at 10:36 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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Is it me, or do others with rheumatoid arthritis see RA possibilities everywhere? I’ve told my bro, who has had neck pain for years and gets inflamed knuckles, that he really should get an RA test, even though it’s incredibly unlikely in a lad his age. (Unlikely but not impossible, as Rhuematoid Arthritis Guy can testify, and not an unreasonable suggestion given that he’s my brother and we do have family with RA.

However, it starts to get a bit silly when you’re sitting chatting to someone and start thinking ‘ooh, they get stiff in the mornings; could be RA.’ Well yeah, I have to remind myself, but when they say stiff they probably mean their muscles ache a bit because they went jogging last night, not that they can’t move their joints. But then again, RA is notoriously hard to diagnose, so when you’re sitting in the OT’s room chatting to another patient who is being treated for ‘carpel tunnel syndrome’ in both wrists, has been referred to the podiatrist because of pain in both feet, finds it hard to grip the steering wheel for any length of time, gets ‘dead arms’ in the middle of the night just like I do and finds it difficult to be a passenger even in the car for long journeys because when she gets out she’s ‘stiff all over’ … oh yes, and this all started with ‘the change’ … you can’t help wondering, can you? Or can you? Is it just me?

It’s hard to keep your mouth shut sometimes, but I managed it. For all I know she’s been thoroughly tested for it and hasn’t got it, but I couldn’t ask; I’d never even met her before that day. It makes me wonder even more because when I was diagnosed with RA I’d gone to the doctor saying, ‘Help – I think I’ve got carpel tunnel syndrome!’

I suppose I shall never know, and I really hope I’m barking up the wrong tree altogether, for her sake … but I can’t help wondering. Am I being silly?

Bloody marvelous, innit?

February 7, 2010 at 10:32 am | Posted in rheumatoid arthritis (RA) | 2 Comments
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Two days until my birthday and I’m right in the middle of a flare! On the bright side (which is what this blog is all about, although I have to remind myself of that right now), I’ve got most of a day off tomorrow and a full day off on Tuesday, and mum cooking dinner for us Tuesday night (chopped liver to start (sounds disgusting, ISN’T!), roast chicken and trimmings, and a naughty surprise desert have been requested).

Hubby has the day off on Tuesday, which makes a nice change. I just hope I feel up to doing something nice with the day!

Also my birthday starts early – Today Weeny, she of the not-so-great sympathy skills, and her hubby are taking us out to lunch. Pressies are piling up on the table downstairs and looking festive, ocassional bits of sunshine are peeping out through the gloom and the forecast for Tuesday is pretty good, so the outlook’s not as bad as it could be in spite of the various creaks and groans eminating from the penguin (and from hubby at having to listen to me creaking!)

Just when I think I’ve got a handle on this thing …

December 17, 2009 at 5:19 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 10 Comments
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I’m baaaaaaaaaaaaaaaaaaaaaack! Don’t suppose anyone missed me (sob) but if you did wonder where I’d gone, I’ve been quiet because I’ve been having MAJOR computer problems at work and major getting my City and Guilds embroidery modules done on time problems at home!

Yesterday I was completely convinced I’d sussed my R.A.! I know there’s a link with the weather and I know there’s a link with hormones. I haven’t kept a diary but I thought I saw a pattern emerging. The pattern I thought I saw was that hormones were in the lead – provided I was menstruating or there abouts then, regardless of the weather, I’d be pretty good. If was in the midst of hot flushes then I would be less good and even worse when it rained.

Of course that turned out to be far too neat and tidy! Today I’m menstruating again (oh joy!), grumpy as hell and full of aches and pains. Aaaaargh. Of course things are complicated by the fibromyalgia, but it all FEELS like joint pain right now (apart from the period-related back ache of course!) A little hard to be sure though.

Wet, wet, wet …

November 16, 2009 at 10:38 am | Posted in Me, rheumatoid arthritis (RA) | 8 Comments
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Ouch, ouch, ouch.

It rained all day on Friday, and I had to come home early from work because I was in a significant amount of pain and just not working effectively. It is entirely possible that teaching ‘the boss’ to crochet was not the best move for either my achy hands or our workload, but it was fun!

Ohoh, I thought, here comes a proper flare … then, curiously, in the evening I felt much better (even though it was still wet). The next day I woke up with one of my approximately five-monthly periods! I’ve said before that I often find I’m completely R.A. symptom free while menstruating, and sure enough I was almost symptom free over most of the weekend …apart from period backache of course … well, there’s always something.

It probably helped that we had a beautiful day yesterday, sunny, bright, deep blue autumnal sky, gentle breeze, trees clinging on to the last of their leaves, almost sparkling in a variety of fiery hues … lovely. (Why isn’t fiery spelled firey? Sorry, I have a tendency to go off on tangents like this … you may have noticed.)

Unfortunately it’s been pouring most of the night and it’s still pouring now … and I HURT! ‘The boss’ has a day off today so, as there are only the two of us, I ought to be here manning the (dead quiet) phones, just in case I miss something vital. Not sure how long I’ll stick it though! The problem is, the moment I do decide, ‘That’s it, I’ve had enough!’ and go home, I know some client will ring with something vital. (I even know which client … the same one that picks every single occasion when I’m away to find something urgent that needs doing!)

So I shall probably struggle manfully (womanfully, penguinfully?) on and just collapse these evening in front of some silly comedy on the telly or something. At least I know there is some silly comedy to collapse in front of. There’s Miranda at 8:30 – I’m still not sure about this. It’s only had one outing so far, last week, and it’s very old-fashioned Victoria Wood style humour, pretty basic gags, but the lead, Miranda Hart, is very good. Then there’s huge tracts of the wonderful ‘Jeeves and Wooster’ series to watch, as Hubby got the whole shebang from my bro for his birthday. It’s the series with Stephen Fry and Hugh Laurie in the eponymous roles. (Not sure I’ve used eponymous correctly there, but it’s a great word, isn’t it?) It ran to four series and is ideal to watch when feeling ‘carp’. The script takes a few liberties with the original P G Wodehouse stories, but I rarely find it worries me, and Fry and Laurie have absolutely become Jeeves and Wooster for me, to the extent that when I read the original books I hear Stephen Fry and Hugh Laurie’s voices in my head! (Hmm, afraid that last sentence makes me sound crackers, but never mind … I probably am.)

Right back to work … oh joy … Mantra for the day: “Me gusta mi trabajo, Me gusta mi trabajo, Me gusta mi trabajo…” (I like my work in Spanish … Hoping the mantra might a) help me learn Spanish, and b) convince me that me gusta mi trabajo! (I do … really I do … just not today!)

Seem to be OK today …

November 11, 2009 at 2:35 pm | Posted in Me, rheumatoid arthritis (RA) | 15 Comments
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I was getting to the point yesterday afternoon where I was fairly convinced I was having at least a fizzle … some reasonably significant pain in the afternoon, tiredness too, and by the time I went to bed I couldn’t find a comfortable position because however I lay something hurt.

I’d had a busy, fun evening and a very unhealthy dinner! Yesterday was the night of our local sewing/quilting/crafting/whatever group and as a friend of mine who works locally but lives some way away also goes along, I asked if she wanted to come back to ours for a quick bite to eat before we went. I warned her it would only be pizza because we were in a hurry … so not a healthy start there … and she kindly contributed a chocolate putting with chocolate sauce AND cream for afters! Oh dear … but yum.

Anyway, here’s the thing … I feel much better today! So perhaps pizza and chocolate pudding is my ideal RA diet?

Erm no … before i got lots of angry comments, I’m not entirely serious! But it does show how careful you have to be not to attribute RA (or lack of it) to things without doing some serious research and testing!

I hope the RA isn’t creaping back

November 6, 2009 at 2:02 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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I’ve had several virtually pain and stiffness free weeks now – fantastic! But for the last few days I’ve woken up just sliiiiiiightly stiff, and had little bits and pieces of rheumatoid arthritis pain in the evenings and at night … certainly not a flare, not even a fizzle, but just a bit worrying.

I have my six-monthly hospital appiontment at the end of next month and I was joking with my physio the other day that everything would probably jog along very nicely, with just the odd twinge and few minutes of stiffness, until the day after my hospital appointment,when I’d get a flare.

I hope it was a joke … especially as my hospital appointment is 23 December!

Some good news!

October 19, 2009 at 10:10 am | Posted in rheumatoid arthritis (RA) | 5 Comments
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The hot flushes are back with a vengeance! As anyone who’s ever had them, or has a partner who’s ever had them, will know,that is NOT the good news.

The good news is that although I’m quite convinced from previous fluctuations between hot flushes and no hot flushes, RA pain and no RA pain, that the two are correlated – for me, hot flushes usually means more RA pain and stiffness – this time the RA symptoms remain mild to non-existent. Further indication that the MTX is doing what it’s supposed to be doing.

Even the fatigue has reduced – I’ve had a really busy week – busy at work, making some bits and bobs for a charity stall run by our local sewing group, preparing for my mum’s 70th birthday (the house is full of cake, icing stuff, presents, wrapping etc.) – I had a ‘ladies who lunch’ and shopping trip on Saturday involving 50 minute drive each way to Bury St. Edmunds, and I managed the WHOLE weekend without a day-time nap.

I very nearly succumbed, but just managed not too. I hoped that would guarantee a good night’s sleep last night, but thanks to the hot flushes/night sweats, it didn’t. Oh well … can’t have everything. At least the RA is behaving itself!

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