Tuesday, 21 June 2011

My guilty secret...

If you want to think I've got OCD after you read this you can think what you like, as it happens - I don't!

However, and I'm a little shy to reveal this, since I first realised that this illness was going to take a bit of time to sort out I have been faithfully completing a symptoms chart on a daily basis so I can keep track of whether I'm getting less fatigued, more energetic, more clearer headed, etc, over time....

Sometimes when I see my doctor I take along a copy of this chart to try and give my doctor more information about what is going on with me. Usually they quite like that. Of course different doctors can respond in different ways. I had one once who didn't like it at all and was actually quite rude to me. I didn't see her again!

After I got over the worst of the brain fog my chart became a spreadsheet, but originally, when I was first very ill and truly a small sorry fuzzy little thing with hardly no braincells at all that functioned terribly well, it was a very scribbledy hand drawn affair, because that was all I could manage to assemble.

product of my slow coach little brain cells back in 2010!

It was one of the things that made me realise my head was starting to clear when I was able to concentrate well enough to put all my precious symptom data (yes I am truly that sad!) onto a spreadsheet and make it a graph. The guy I see at the fatigue clinic tells me my graph is a work of art! All I want is for it to show some answers.

But the problem with the damn thing is that it never shows a nice clear positive upward curve to recovery. It always comes out as a jagged line, I get a bit better, I do a bit more, I get a bit more tired again, it goes up and down. Slowly over the long term I'm convinced I'm better. Those around me tell me I unquestionably am. But I look at the chart and it's kiind of difficult to read.
Excdel but my jaggedy graph - is still hard to read after the initial definite drop in fatigue!

I guess so much of how I'm feeling is subjective and what I might have scored as a '6' or a '3' six months ago is maybe not the same as what I'd come up with nowadays. Still it's frustrating. I wish it was all simpler.

I've just spent an hour updating my spreadsheet for the last 8 weeks since I saw my endocrinologist last. I've got an appointment tomorrow. I say "my endocrinologist" but actually I have no idea who I'll see because so far I haven't seen the same doctor more than once at the clinic I go to! That's how the NHS works. Weird and annoying. I would like to be able to see the same doctor and for them to get to know me a bit so they can see changes for themselves and for me to understand how they like to be communicated with and for the two of us to be able to collaborate a bit on me getting better.

I don't think I'm even going to take my graph tomorrow. I don't want whoever I see to think "we've got a right one here, crazy graph lady." I'm just going to tell them the facts as I see them about how I feel a bit better but I'm still not right and listen to what they have to say and hear what my latest blood tests results are and HOPE that the appointment will be useful and that there might be some kind of positive action that can be taken towards me continuing to feel better than I do now.  Could my meds be adjusted any more? Are there any other tests it could be worth doing? Is this as good as it's going to get? Do I just have to be patient for a while longer?

OOOghhch it's a slow old process.

I'll let you know how I get on. Sigh.


  1. I hope it's not too late to say.......Take the graph!!!!!!

    I thought I was the only one that puts everything (and yes, I mean everything) into a spreadsheet and make graphs and all of it...I do it too! I even have different things colour coded!

    It is a slow frustrating process...I agree there! Keep us posted on the appt, I'll be thinking of you!! :) xx

  2. this morning I have cracked the code!! Yes my little graph WILL now go to the Endocrinologists after all!

    Although variances from day to day make for a messy jaggy looking graph, looking at the monthly average really shows a clear picture: I get a bit better each time my meds are adjusted and last spring summer I got a lot better in exactly the same way that I am doing this spring summer. So there appears to be a clear seasonal trend as well as a link to medication.

    This seasonality is definitely something to ask my endo about - could it be linked to Vitamin D levels? When I started taking Vitamin D and then doubled the dose a few months later, it looks like it may have made as profound a difference as increasing thyroid meds.

    lots of you on twitter have been sharinig that you also graph your symptoms, I'd love to get a discussion going on here about what you chart and how you analyse the data.....how about it?

  3. Yay for not leaving the graph behind!!

    I'm definitely up for a discussion on charts and the like...count me in for sure!!!

  4. some on then missus, what do you chart and how do you do it? has it changed over time? Is there any similarity with the graphs I've shared above? I am convinced now the way forward is to capture data daily but then to analyse using monthly averages as that is the only way I seem to be able to see actual trends. Thyroid hormones are so incredibly slow acting. What do you think? What do others think and do? I'm dying to know!!

  5. My charts have a few more things graphed on them; mine include all my major symptoms that give me hell...they are: fatigue, dry hair/skin/fingernails, how active I am, concentration (I can't concentrate if my life depends on it while quite hypo!) and of course, the brain fog. Each one is a different colour. Mine looks quite similar to the one you've posted that was done on excel just with more lines for all the different symptoms I chart.

    Now, as well as that, I have the same information with the same symptoms in a spreadsheet so I can list my TSH/FT3/FT4 levels and the current dosage of thyroid meds I'm on at the time as well as the amount and severity of the symptoms.

    I include data in the spreadsheet daily; but then get fortnightly averages and the graph is made using the average over a period of a fortnight. I found monthly too much of a big period to go by, because that hormonal time of the month always sent the sypmtoms raging and so the averages were looking quite the same so I do it fortnightly as so there's averages taken without that time of the month coming into play.

    I've found thyroid hormones (particularly T4) are slow acting and take a while after a med adjustment to see changes in the graph.

    Told you I sound quite obsessive over it all...I swear I'm not though!! LOL!

  6. I used to track my temperature but only at the beginning as recently I have felt so well apart from still being exhausted by early evening so stopped. I am rubbish at doing anything regularly since this so havent been writing anything down re my symptoms which I also used to do. Generally I am rubbish now! Ha ha! I must improve and this looks a good way to go! Cheers x

  7. I found tracking my temperature alone to be too inconsistant and not worth the effort LOL!

    I found too many other things (not thyroid related) could alter my temperature and it wouldn't show an accurate 'picture' of my thyroid situation at all.

    But of course...that's purely my opinion and I'd love to hear from Lorraine or anyone else who has their thoughts, particularly if they disagree with me and had success with tracking temp alone!!!

  8. Hi Lorraine. Firstly thanks for sharing your story. I was diagnosed in June 2010 with autoimmune thyroiditis. I too have noticed a pattern emerging, I seem to be most poorly between March and June. In the last year I’ve had a lot of blood tests and the only thing that showed up was very low vitamin D levels. I’m now taking D3 supplements, but the doctor advised sunshine is the best and fastest way to restore levels. I’ve been spending 15-20 mins in the sun as often as possible without sunscreen (which feels very naughty and won’t do the wrinkles any good) and I do feel better.

    A graph is a great idea, I plan to get one underway. Now to decide which of my ‘favourite’ symptoms to include ;-)

  9. hi Natalie, Hippie, Denise and Claire!!

    Temperature is an interesting one - lots of holistic doctors talk about how low morning temperature can indicate hypothyroid, my endocrinologist said this is not accurate though and your experience seems to back that up Natalie.

    I have evolved what symptoms I track and how I score them over the 2 years since I was first diagnosed.

    The main thing I keep track of now is just how tired I am, how active I am and how stressed I am (as I've learned this makes a big difference to fatigue, even though I think of myself as pretty laid back and pragmatic about life, I've realised stress does have more of an impact on me than I used to appreciate, as my earlier post on the subject explained)

    In the past I've logged: foot pain, brain fog, pins and needles sensation on my head, everything I eat (sugar, high GL carbs and dairy can affect me adversely), my menstrual cycle, you name it...

    I picked up a thing at EPP the other day from a company who looked like they had created some new way for patients to log symptoms online, will dig it out and post details on here, might be interesting...

    I tried using the Medhelp thyroid tracker and found it was no use.

    So far everything I've done I've created myself but the Fatigue clinic had some good tips about not just scoring fatigue, activity and stress levels for the day as a whole but seeing what patterns emerged over the course of a day.

    the vit D stuff is VERY interesting, I now take a vit D3 supplement too and try and spend some time in the sun each day when it's available. My endocrinologist is monitoriing my levels carefully. He's just advised me to cut down a bit...