You may recall that I blogged a few weeks ago about succeeding in getting my Endocrinologist to give me a trial of T3. At that time, I posted a photograph of me taken on diagnosis day in September last year (pic above). I was pretty poorly and after five months increasing T4 to 200mcg, I still wasn't right, even though my last FTF was 'normal' (FT4 22 (11-25), TSH 0.27 (0.27-4.200)). After a struggle with GP and Endo, I was given 20mcg of T3 to be split into two doses, with my T4 reduced to 150mcg. (I was informed by lovely people on this site that if I had 20mcg I should probably have had my T4 dropped a bit lower. I called the Endo's secretary, but she hasn't called me back yet.. Marvellous.)
I started the addition of T3 on 27th February.
The first two of days I took my two split doses and had a MASSIVE nauseatingly bad headache all day. I saw sense and split my 20mcg into four and for the next ten days or so, I had four split doses which put the headache to bed. I didn't have any rapid heartbeat as such - during the first 48 hours when I had the headaches, I had a heartbeat which felt normal (i.e. I couldn't feel it), but I'd get a huge THUD every few hours. Once I'd split the dose into 4, this went.
I've got good things to report - I haven't had a hypo-nap in the afternoon for a fortnight! I've been for a walk round the park (which is one mile round trip) which I haven't done for months. I can walk up the stairs much easier, without the gasping for breath and weak, wobbly thighs! And it would seem that the T3 is dealing nicely with the mucin - (I was peeing for Scotland for the first fortnight or so and lost 10lbs - sorry, too much info!).
I've also lost the puffiness from my face and feel like I'm beginning to recognise myself again as my features resurface through the swelling..
Which is all great, until I had a follow-up appointment with the neurologist who wanted to give me an EMG and to see a psychiatrist, last October, as "all of my symptoms are obviously in my head!" I saw him ten days ago. He said that the swelling in my face had gone down and asked me what other symptoms I was still experiencing. I told him about my hypo symptoms which although greatly improved, some are still there:
mild cramps (compared to the scream-out-loud cramps I had in September )
Plantar fasciitis (much improved, in fact, hardly feel it today)
fingertips tingly and numb - although improved
difficulty getting upstairs - gravity x 100, again much improved
Weak hands
fatigue (but much improved from September when the nurse had to help me out of bed)
Dry skin, dry hair and brittle nails, but showing improvement - I had to file my nails for first time in months.
I'm still suffering hair loss, but can see that my eyebrows may need attention between my brows very soon. I haven't done them for two years!!
My hag hairs on my chin are slowly re-appearing (ladies over 40 will understand this one!)
Upper arms very sore - and also feel very 'full'. Cannot pinch skin
Thighs the same - cannot pinch skin
Forearms - seem less full, tissues are softer and I can pinch skin. (as per YouTube video)
Inner arms very tender when having blood drawn or blood pressure taken (improving as arms become 'less full')
I said that I felt that I was still probably slightly under-medicated as I'd only been on T3 for a fortnight. He actually bristled at this and looked over the rims of his glasses at me. He said that he would determine this with my Endocrinologist. He asked me who he was and at which hospital and said that he'd write to him and find out if he feels that I'm under-medicated, as though I would not possibly be able to form an opinion on this. After all, it's only my body.
I should have mentioned that he had three very young, female, and lusciously beautiful student doctors in his room with him ( and - no, nobody asked me if I minded that they were there), so I believe he was indulging in a bit of willy-waving because everything I said after that fell on deaf ears.
He didn't examine me but told me that I should "never have been allowed to leave the hospital in October without the EMG and psych report which I ordered" (I had apparently been seen by another consultant as he had fractured his skull on the morning of my admission. This statement was met with horrified gasps from the assembled student doctors.)
I showed him a photograph which I had had taken on diagnosis day in September. He took one look and said "Goodness, that's myxodaema." I said "I know."
When I told him I believed that my symptoms were hypo symptoms and that I did not require the services of a psychologist, he took up a pencil and drew three circles on a sheet of A4. The middle circle he told me was people with many symptoms. He drew an arrow from the centre circle to the left hand circle which he notated as being 'patients with many symptoms which fit into a specific disease'. The right hand circle he notated as 'patients with many symptoms which do not fit clearly into any specific disease, so therefore were more than likely depressed and needed CBT or psychiatric help'. I don't know why I didn't nut him! (apologies, obviously not condoning violence here!).
He said that he would arrange for me to 'come into hospital for a few days for these very important tests'. I asked him how long it would be and he told me that it would probably be within 4-6 weeks. I thanked him profusely and left. You see, we're just about to exchange contracts on our house and plan to move house in 3 weeks, so with any luck I'll be able to write to him and tell him that unfortunately I shall be unable to attend due to the fact that I've gone back home to Scotland. Please God.
I'll attach a couple of photos which I think shows the changes better than any blog - I put these on facebook earlier, so apologies if you've already seen them there.
Thanks again SO MUCH to everyone on this site for helping me begin to understand this frustrating disease. It's still very, very early days for me, but I feel much better on 4 weeks of T3/T4 than I ever did on 5.5 months of T4.
And best of all, my husband said that I've been laughing much more regularly this week - and as the swelling is receding, he says he's beginning to recognise me again too!
Long may it continue! (My paranoia is already suggesting in an evil whisper that my new GP in Scotland will not like the idea of T3 and withdraw it! Dr S will be having a new patient then methinks!!)
Night, night, sleep tight!
Karen x x
Hope not! 
They hurt all the time, it's so hard to walk, this in itself has added another 3 stones to my weight. 
Back on t4/t3 combo
Method for first retest on T3/T4 combo?
Was doing well on T4/T3 Combo but symptoms have returned after 1 year on the same dose
Can I get your opinions on my TSH and the usefulness of T3/T4 please
Does high RT3 matter on t4/t3 combo? 
