This gets rather repetitious, but I thought I'd put this study forward as yet another indication that thyroid therapy as presently done, does not result in a return to normal QoL. The study is open:
Impairment of Health-related Quality of Life among Indian Patients with Hypothyroidism
May 2018
DOI: 10.4103/ijem.IJEM_702_17
Channabasappa Shivaprasad, Boppana Rakesh,Kolly Anish Dwarakanah, et al
Written by
diogenes
Remembering
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Thank you Helvella, I was trying to find this, but the link in the email didn't work. I have an endo appointment on Wednesday and have had this discussion with him regarding adding T3 to my T4. He said the usual no proven efficacy, etc etc and said that the only improvements to the patients are in QOL, no effect on bio-markers! I told him I don't care about the bio-markers, I just want a good QOL and that's what everyone wants! Then when I told him about being heterozygous for DIO2 gene, he told me to up T3 by another 10mcg from 20mcg to 30mcg (without testing T3 first). I wonder why he wanted me to do that if there will be no difference in the bio-markers? I did test with my GP and there was room for an increase. I increased to 30mcgs, put 10lbs on in a month and developed mucin. I came off all meds for 10 days and then slowly started T4 and then added in some T3, titrating slowly and am now back at 100mcg T4 and 20mcg of T3. Have managed to lose the 10lbs through severe dieting, but still feel under-medicated. Very fatigued during the afternoons and some wrist pain.
I'm going to take this article to my endo, although I'm not sure it will do any good. Thanks so much for posting the link.
Hi smallbluething, yes it’s an interesting paper isn’t it. Oldest participant 49 - in itself that’s interesting as I understand occurrence increases with age. Its a common occurrence for university students to be used as subjects in research generally so perhaps the local health institute was by a university?
Yet another study measuring the mysterious abstract concept of 'quality of life'. I call it that because it's a real bugbear of mine how these papers abstract and abstract away from what quality of life actually means.
First they package it up as QoL, then they report the experience of hypo patients as 'they had lowered scores on 6 measures'. In this particular paper the only way you can see how much lower is in one table. The only way you can even tell which scales were relevant is in one paragraph, and that is a bit vague about whether it's discussing the outcome of this study or a different one! These scales are hugely abstracted with names like 'role vitality'.
The paper, like many others, does not use any space taking stock of what this might look like for the sample of patients. Does it mean they struggle with basic self care? Does it mean they aren't able to do full time paid work? Does it mean they feel in pain and sick a lot of the time? We're not even given any hint about what questions were answered.
Papers like this really support attitudes like Rita-D's doctor (sorry, I've forgotten how to turn a name into a link again). The whole experience a patient has of life, and their ability to cope, physical discomfort, mobility, maintain work, family life, hobbies, etc is summed up in this very abstract nonsense! So it's very very easy to write it off as unimportant. Even though its actually the definition of being sick or well.
Unfortunately we still have to be grateful, because these studies provide the evidence we need to convince medics (and maybe even ourselves) that we still have symptoms. It's just a real dehumanising slap in the face.
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