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 wish I could live in the dream world my consultant inhabits

December 27, 2009 at 11:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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It’s official – I had a flare at the end of October/early November … and more, I suspect. No kidding. I think I knew that, but this time it actually showed in the bloods! That’s a first for me!! I’ll give the consultant his due though – he was as amazed as I was that the bloods actually matched with how I’d felt, so he does at least appreciate that one can feel totally lousy and have no indication in the blood tests whatsoever, and vice versa.

Anyway, we agreed that things were going pretty well at the moment and that it didn’t seem sensible to go on increasing the MTX willy-nilly if things were OK. I explained that I knew I was much, much better than last time I’d seen him (which I think was well over a year ago, as I’ve since seen a registrar and a nurse but not the man himself), but that they certainly weren’t perfect, and for the first time he admitted that I probably wasn’t going to achieve perfect … I’d kinda figured that out, but still a slight blow to hear him say it!

He then cheerily added that never mind, compared to what he usually saw I really wasn’t bad at all. He has no idea just how bloody irritating this comment is – he’s said it before. I think last time I was too dazed and generally fed up to actually respond, but this time I was properly prepared and I pointed out that I wasn’t comparing myself with his other patients – I was comparing myself to myself before this whole R.A. business started, and that when I do that I don’t see my current self in a terribly favourable light. The nurse who sits in with him (as a chaperon and to make sure he remembers to fill all his forms in!) was nodding sympathetically and understandingly behind his back. I got the feeling she’d heard this comment from him before and had thought exactly what I was now saying. Anyway, he sort of blinked a bit, looked rather surprised at being answered back to and mumbled something that was vaguely conciliatory … I think.

Then he bid me to enter his dream world by saying, “If the MTX doesn’t keep things under control, if you have another flare, we’ll put you on these terribly expensive new drugs called biologics or anti-TNFs.” (He does tend to forget I have a brain.)

I snorted – very rude, but it just sort of happened! I said something like, “Have to be one hell of a flare for the NHS to let me on to those!”

“Oh no,” says he, “just an ordinary sort of flare.”

Well, that’s certainly not the impression I’ve been given by the NRAS magazine, the people on the NRAS forum (other R.A. sufferers, generally in a much worse state than me, who have failed the ‘DAS test’ for anti-TNFs), the press, people I met in Barcelona, the nurse practitioner, the GP, the practice nurse … just about everyone else really. Since this is the man that told me I should see him in three months last time, when it was totally impossible for anyone to get an appointment closer than six months, and the man who told me that all I needed to do if I had a flare was phone and I’d get straight through to someone on the helpline (not true as it’s usually unmanned and then they don’t call you back) I don’t feel too filled with faith about the biologics comment either! I dare say though that his “ordinary sort of flare” would be the ordinary sort of flare that his other patients have, not my little fizzle!

Well, hopefully the MTX will now do its job properly and I won’t need to ever find out whether he’s living in a dream world or I’m just being unnecessarily pessimistic about my prospects for biologics!

Physiotherapy – what’s it all about?

November 9, 2009 at 3:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Wren posted a comment asking about physio and I thought it might get a bit long-winded for a comment answer, so I’m making a post out of it!

This was Wren’s comment – sorry Wren, just realised that this answer is going to come a bit too late for your appointment! “On another subject: How often do you see your physio (physical therapist)? What do you do at the appointments? Are there special exercises? I’m curious because I keep reading of others having PTs they go to frequently, but this is something that I’ve never done, or even had suggested by my doc. I’m seeing him on Saturday morning, and I plan to ask about it, but in the meantime, how does this work for you?”

I personally see my physio every two weeks at the moment, but that’s a timing that we decided between us and it’s changed over the months I’ve been seeing her. I started seeing her weekly when things were really bad and we’ve moved on to two weekly. We tried three-weekly but that didn’t work out – by the time I saw her after three weeks my shoulders were in agony!

There are indeed special exercises, but again they’re entirely individual to each patient. I think it’s fair to say that generally you don’t do any exercises during a flare, reduced exercises during a “fizzle” (if you have fizzles, as I do!) and you try really hard to do them when things are fine, but frequently forget! Luckily I have a very understanding physio (this is afterall the woman who recommended a year’s supply of cake, but she says I’m not allowed to post that story!!) and she appreciates that it’s hard to remember to do the exercises when things are good!

What we do at the appointments is 1) Talk through how I’ve been over the last couple of weeks since I’ve seen her 2) Decide what needs doing this time 3) Do it. Usually, what needs doing is either ultrasound on my knee(s) or ultrasound on my neck and shoulder(s) or both. Again, I’m lucky to have such a flexible and understanding physio. By the time I got to see her, I’d been seeing another physio privately for months. Long story – see here and we’d established that ultrasound works for me. Again, it’s a very personal thing. Some people find acupuncture fantastic, especially, apparently, for knees – I don’t. Some people find ultrasound completely useless – I don’t.

If there’s a different joint giving me problems we’ll talk through that and discuss if there are any exercises that might help, or whether ultrasound, TENS etc. might help.

I have a whole selection of exercises that I should do regularly for my neck, shoulders and knee, and a bunch of others to ease morning stiffness in other parts of me. The knee, neck and shoulder exercises are more to strengthen the muscles in those parts, so that they can do a better job of supporting the joints, rather than to actually do anything to the joints themselves.

The attitude of the nurse practitioners is ‘use it or lose it’, so the consensus seems to be that the more you exercise (within limits), the better. Not being the world’s most active person the only time I’m likely to overdo those limits is when I’m having a flare (where minimal exercise is fine) or if I’m doing crochet, embroidery etc. and don’t want to stop although my hands hurt!

I hope this helps explain the whole physiotherapy/physical therapy thing a bit, but it is, I stress again, only my own very personal viewpoint, and I know that every physio is different (because I’ve seen at least five over the years) and every patient is different. I reckon if you find a physio that suits you it can only help, so why not give it a try?

It went well!!

August 17, 2009 at 4:34 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well … I saw the rheumy nurse on Friday … and thankfully it was NOT the same one that I’ve seen in the past, and this one was a) human b) non-patronising c) cheerful and, perhaps most importantly, d) helpful! OK, so she read the doctor’s notes all wrong to start with and got in a bit of a muddle, but I’ll forgive her that given the points above! Although, as suspected, having an appointment in August was a bit of a waste of time in a way, at least this nurse says definitely now she’s met me she’s happy for me to phone in September and say if I feel the MTX needs increasing, in which case she will increase it.

Interestingly this nurse is someone that one of my friends has seen in the past and thought was awful … obviously a personality clash, just like the one I had with the previous nurse I saw. At least I’ve been lucky enough to change.

We also discussed this whole three months/ six months between appointments thing and although the news wasn’t good, at least she was frank about it. What it boils down to is they’re underfunded and under-staffed and while they’d love to see me every three months, it ain’t gonna happen. However, they have apparently improved the helpline (hoorah for that as it was rubbish when I used it last!)

I’m bloody glad I’m not flaring!

August 13, 2009 at 2:25 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I can now claim to know the car park at the hospital where I have physio quite intimately. I know how many spaces there are, I know what sort of trees surround it, I know the view across the fence over the corn field, I know there are blue tits and great tits and some sort of finch foraging in the trees, I know that the oak tree has a few early common spangle galls on it.

No, I wasn’t doing some sort of strange nature survey of the hospital car park – I was waiting for the RAC! Yes, the car has broken down AGAIN! Having lost my marbles and my rag, I have now also lost my car! (Well, hopefully not permanently, but it’s in the garage.)

My wonderful hubby drove out to see if he could help and,although he couldn’t, he waited another hour with me until the RAC arrived. It was a 2.5 hour wait in total – not fun.

Fortunately the RAC guy (who was nowhere near as lovely as the adverts would like you to believe, but OK) got the car going – but I had to take it into the garage because it was still showing faults.

I was patting myself on the back last night thinking how well I was coping with all this … but when I got home it all finally hit me. I felt absolutely exhausted, headachy, aching all over, sore hands, sore feet … hmm, so looks like a fibromyalgia AND RA flare, I thought. Lovely …

But no – I made myself get an early night, convinced myself that the car would probably be OK,managed not to worry too much and … well, I’d like to say I feel a million dollars today but that would be rather overstating things, but AS YET I am flare free. Yippee!

I can’t promise that’ll still be the case if there’s real car disasters on the horizon, but I’m OK for now!

Could be that having just had physio helped too!

Hospital appointment lost …

August 11, 2009 at 9:01 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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So, as I said in my last post, I got home from a cracking weekend away to find a letter telling me that due to my health professional being on annual leave, my hospital appointment for September 2009 was being postponed … for six months. Now it won’t surprise those of you who know me that I slightly lost my rag … it’s probably sitting somewhere with my marbles.

On Monday I phoned the hospital – the receptionist was suitably puzzled, perhaps even astonished, at the amount of delay, buy all she could do was put me through to the nurse practitioners’ secretary, and all she could do was add me to the cancellation list for September. ‘If you get to the top of the list, we’ll let you know and give you an appointment.’ She didn’t sound like she thought there was much chance of that.

So I asked her who I should make an official complaint to. She told me to contact the Patient Liaison Service and she put me through. This actually was NOT how you make an official complaint, but it was nevertheless a wise decision on her part as when I eventually spoke to the PaLS lady she was excellent – and sympathetic, unlike the secretary who had probably worked as a doctor’s receptionist before getting this job, and so I ended up NOT putting in a complaint…

But before I spoke to the excellent PaLS lady, I had to do the usual leaving of a message on the answerphone, waiting for a response, not getting a response, writing a stinking complaint letter and sending it off.

In my stinking letter I explained that not only was I having this appointment canceled, but in fact when I looked back at my diary it seemed that I had actually only seen the n.p., in April 2008. This is someone I am supposed to see every six months, interspersed with six-monthly consultant appointments so that I see a ‘rheumatology health professional’ every three months.

So … if I didn’t get to see her until March 2010, that would be a gap of just under two years in what is supposed to be a six-monthly appointment schedule!

I also pointed out that NICE guidelines state that a patient whose RA is not under control should be seen monthly. I didn’t hold out much hope for that argument, and I was right – ‘Well they are only guidelines, and we have to do what we can, but …’ but hey, when NICE are on your side you’ve got make the most of it! It doesn’t happen often!

Aaaaaanyway … the rather lovely PaLS lady (who turned out to be an RA patient herself) sent my letter to the RA manager, the nurse practitioner etc. and got a response back for me within 48 hours, and phoned me for a chat. She agreed with me that saying ‘your health professional is on annual leave’ when in fact what had happened was that yes, she was on annual leave but they’d also had one nurse leave suddenly and another drastically reduce her hours (and that from a group that was only four-strong in the first place), did nothing to endear them to their patients.

She explained that if I had a serious problem I could contact the helpline. I explained (again – it was in my letter) that actually things were pretty good at the moment, BUT the registrar I saw in June said that I should see someone in three months (i.e. September) to see if I needed to up my methotrexate if it was working. Now I wouldn’t see anyone until December (my consultant appointment) and I didn’t think that was good enough. Then she said that she thought the nurse p. could probably actually sort that out over the phone and up the MTX after talking to me if she thought that was the right thing to do.

Now that would suit me just fine – getting it all sorted over the phone without having to drag myself into Norwich and waste an afternoon … so I said that was really useful to know and that I would therefore not be making an official complaint at this stage … and then we had a nice, friendly chat about RA and the local support group etc.

So it all ended very amicably and pleasantly and I went off a much happier penguin … and prepared to give ‘em hell at the beginning of September when they told me that actually they couldn’t do it over the phone. Cynical? Moi?

But wait … is that the mobile I hear ringing … Yes … it’s the nurse practitioner’s secretary …

See the next thrilling installment for what happened next …

A wonderful weekend

August 8, 2009 at 10:48 am | Posted in Me, rheumatoid arthritis (RA) | 4 Comments
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Last weekend was almost perfect … it would have been pretty much perfect if it wasn’t for the dratted hospital … but more of that later!

On Friday I went to stay with a friend on the north Norfolk coast and in the evening we went nightjar watching … or nightjar listening at least. It really was a magical experience – imagine standing in a woodland clearing, near dark, with no one else around (except my friend of course) and hearing something like this recording on the Natural Suffolk blog. And we didn’t just hear them – we saw the male and female, and heard the male’s ‘wing clapping’ display flight. I’m not a bird watcher, even if my friend is proud to be a ‘birder’ and refutes the fact that she’s a ‘twitcher’ although that’s highly debatable, but that was just an unforgettable experience. I have dismally failed to convince either my mother or hubby about how exciting this was … I’ve probably failed to convince you too, but if you have a listen to the recording you might get some feel for what it was like!

It was slightly more successful than our afternoon jaunt to search for black darter dragonflies. Apparently they’re common’s’muck in the area we went and my friend never fails to spot them … with the exception of this time, of course. Clearly they were all shouting ‘Penguin alert, Penguin alert’ and diving for cover in the reads … that’s hubby’s theory, anyway. We still had a very enjoyable walk though, and saw many other dragonflies and damselflies and a number of other interesting things that we totally failed to identify, not helped by the fact that I’d left my camera at my friend’s house so couldn’t take pictures to identify later!

Saturday morning was a rather more successful trip to Holme Dunes, where I took some photos of six spot burnet and common blue butterfly on sea holly that I’m rather pleased with. I’ll post a couple here.

Common Blue Butterfly on Sea Holly

Common Blue Butterfly on Sea Holly

Six-spot Burnet moth, Holme, Norfolk

Six-spot Burnet moth, Holme, Norfolk

Needless to say really, having just described several walks and quite a bit of standing around, the RA is behaving itself rather well … and continues to do so. This weekend the same friend is coming here to go ‘damselfly twitching’ locally to me, where the rare Scarce Emerald Damselfly (Lestes dryas)
can be found. (Interestingly (I think) it’s common as anything in the US and is known as the common spreadwing, but here it’s really quite rare.)

Scarce Emerald Damselfly, Lestes Dryas, The Brecks, Norfolk

Scarce Emerald Damselfly, Lestes Dryas, The Brecks, Norfolk

I know this is an RA blog and not a natural history blog, but I’m celebrating the lack of RA (and the sunshine of course) by indulging in a much more fun interest than my health! One RA related thing though – the aforementioned hospital annoyance. I got back home on Saturday evening to find a letter from them – your appointment <which had been booked since March 2009 incidentally> has been cancelled due to the fact that the health professional you were due to see will be on annual leave. It’s been moved from September 2009 to … wait for it, wait for it … March 2010!! I will be posting separately about this when I have the time! In the meantime I shall just say Grrrrrrrrrrrrrr. And bloomin’ good job the RA’s OK right now!

New NICE guidelines on RA

March 9, 2009 at 9:56 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:

  • Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
  • A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
  • Quoting direct from the NRAS site (www.rheumatoid.org.uk) “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!

And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy.  They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs.  (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)

Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some information.

I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.

Neck brace – AHA! There are lots of front fastening ones out there

January 28, 2009 at 9:30 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I had another physio session today – a very good one. Although I actually felt slightly worse coming out of the hospital, I feel significantly better now and I’m attributing it, rightly or wrongly, to the physio. Anyway, I mentioned to my physio that back fastening neck braces (aka cervical collars, neck collars etc.) were a pretty stupid idea IMO. She looked rather astonished and then said, ‘Of course! You’re quite right. Well they probably make them … but of course the department will just buy in the cheapest option.’ Yup, that sums up the NHS, but then again, I’m very, VERY glad we’ve got an NHS, for all I moan! There are lots of places on line to buy front-fastening collars. The cheapest one I’ve found is here but there are lots of other options. I shall be buying one just as soon as some of my clients pay me!

I’ve started Methotrexate – and yes, I’m glad!

October 30, 2008 at 9:53 pm | Posted in Me, rheumatoid arthritis (RA) | 5 Comments
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But before I tell you why I’m glad I have to tell you about my slightly hysterical Rheumatology Nurse Practitioner (aka rheumy nurse) appointment. Although I had pretty much read everything there is to know about methotrexate for the lay-penguin, the good, the bad and the ugly, and although the consultant had already said I should go on to methotrexate, before I started it I had to make a separate appointment to see the rheumy nurse, so she could ‘give me the methotrexate chat’. And give me the methotrexate chat she did!

To be fair to her she was quite human to start with, apologising for the whole mix-up with the early arthritis clinic etc. (Not that she admitted any liability of course – just apologising ‘on behalf of the whole hospital’.) Then she launched into ‘the chat’. Well, she was so heavily on autopilot that she actually repeated an entire paragraph, word for word, and didn’t even know she’d done it! But then she topped it all with the most patronising comment I’ve ever heard.

She explained that you had to take methotrexate on one day of the week, the whole weekly dose in one fell swoop, and that you then took folic acid a few days latter. The killer comment was, ‘It’s very easy to remember. You take m-m-m-methotrexate on a M-M-M-M-Monday, and f-f-folic acid on a F-F-F-F-Friday.’ I was too gobsmacked to come out with a sharp comment like ‘Blimey – what do you do if you have a patient with a stutter?’ or ‘P-p-patronise me again and I may have to h-h-hit you,’ which was rather a shame.

Anyway, the good news is that I’ve been on the m-m-methotrexate now for about six weeks and although I’m certainly not on top of the world I do, on most days, feel a lot better than I did. And an added bonus is that although it’s not making me feel nauseous (most of the time) it IS putting me off my food – which is great as I’d like to lose about two stone … I’ve lost 9lb in the last three or four weeks, and although I know I have to be careful to eat a balanced diet and I know it’s not healthy or sustainalbe to lose weight TOO fast, I’m still rather chuffed. (I know that appetite loss can be a real problem with methotrexate for slim people, but it won’t be a problem with me for quite some time!)

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