Sorry, I really should have waited another day for yesterdays update but I wasn’t due to have blood taken again until next Friday, but it got moved to yesterday afternoon!
And results are back in already on my app which is impressive! So it’s looking like my numbers (well T3 and T4) are all nicely back in range now. I’m on 20mg once a day. I will now forward these results on to my consultant (I had them taken at my GP) for a dosage adjustment but last time it took a week for him to get back to me. I’m worried about continuing this dosage as it’s going to push me hypo surely? I understand it will take much longer to bring my TSH up and I need to continue the Carbimazole but surely now at a much reduced rate?
Any advice please? Should I drop it to half a tablet until I hear from him? Or one every other day? I have to say I have been pretty rubbish at taking the tablets regularly and missed a good three days when I went away and forgot to pack them 🙈 So def haven’t even taken as much as I should have from day 1 (mainly because I’d forgot but also because for a while I was in denial and didn’t want to take medication).
29 May
T3 30.6 (range 3.5-6.5)
T4 58.8 (range 10.5 - 21)
TSI 14 (Range = <0.56)
TSH <0.03 (range 0.35 - 5.5)
20mg twice a day
21st July
T3 7.2 (range 3.1 - 6.8)
T4 19.9 (range 12 - 22)
TSH 0.007 (range 0.27 - 4.2)
Dosage decrease to 20mg once a day
22 Aug
T3 5.4 (range 3.5-6.5)
T4 13.6 (range 10.5 - 21)
TSH <0.03 (range 0.35 - 5.5)
Also I was told by my Endo that my eyes would go back to normal once in range but I still have big puffy bags under them and def not normal. Does this mean I’m stuck with them for life?!
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Ladywiththebaby
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You need to be referred to a specialist in Graves ophthalmology / TED.
You might care to check in with the Thyroid Eye Disease Charitable Trust who can signpost you to specialist clinics, mainly I think attached to large teaching hospitals throughout the country, where you are treated by both an endocrinologist and eye consultant in the specialised sector.
OK then - take along all your blood tests results and ranges -
and mark alongside the more recent results the dose of AT drug being taken at the time.
In this way the specialist can read of your thyroid journey as well as you explaining everything that has happened and your concerns surrounding your eyes.
I would 100% recommend seeing a TED specialist opthalmologist. TEDct helped me locate one in my area. I wasted too much time seeing ophthalmologists who didn’t know enough about TED. As per last post, are you now taking selenium?
Good that you are informing endo of recent blood results. Hope he/she gets back in touch soon. Like you I responded very quickly to carbimazole. My starting dose was 20 mg (end of April 2019) and due to results of 2nd blood test probably 6 or 8 weeks later, dosage was halved. Knowing very little at the time, I was feeling very pleased with myself, thinking that this was going to be a breeze and I’d soon be off meds altogether. At my first endo appointment in August 2019 my consultant was pleased with the decrease in my levels and advised to continue with 10 mg dosage. By the end of September I had started to gain weight and began feeling really tired, quite depressed and my eyes had become really irritated. I had a blood test in early October and my GP confirmed that the carbimazole had pushed my levels too low (t4 - 9.09) and so reduced my dosage to 5mg. I honestly feel that this drop into hypothyroidism was the trigger for my TED and listening to other peoples stories, hypo episodes can also worsen pre-existing TED - Very sad, but I don’t think all endos appreciate this.
It seems that you are getting regular blood tests at the mo and that you are keeping a close eye on your levels and symptoms, which is brilliant. You are right not to rush to come off meds too quickly. For me, titration has worked well. I am still on carbimazole - just 1.25mg/day but my levels are steady andI’m happy to continue like this. My TED has burnt out, but it definitely left its mark.
Thank you - yes thanks to this forum I appreciate the dangers of being over medicated which is what I’m worried about! I don’t expect my Endo to come back to me very quickly so I plan on halving my dose again and even then I won’t take it every single day (because I never have remembered to so far and that seems to have worked so far!). Really really don’t want to go hypo. I kind of fluked my regular blood test but actually my private Endo told me to reinstate my NHS appointment and I have that coming up next month so hopefully they will take blood for that so it might be ok and I won’t go too far down the wrong road if I do become over medicated!
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