I take one tiny topic that keeps buzzing around my head. Bed-time dosing with levothyroxine has been reported in several published papers. And, when mentioned here, it has flushed out several people who had been doing so for many years (i.e. before recent papers).
So it is clearly one option with the possibility that it will be better for some patients.
And yet, the Patient Information Leaflets, Summaries of Product Characteristics, textbooks, other guidance documents, seem resolutely stuck to taking it in the morning.
And I really cannot see where the mechanism is for these documents ever to get updated.
No pharmaceutical company is going to revise them with the latest information and patient experiences. They will do just enough to keep them the right side of the regulators and avoid censure.
No doctor is going to advise the pharmaceutical company to change the documents.
Anyone writing a textbook will refer back to the PIL and SPC and may even not mention bed-time because these documents do not.
And so it goes round to the next generation of doctors. To be perpetuated seemingly forever.
That is why I believe it is up to us to question, complain, make suggestions and, eventually we hope, get at least some things changed.
(I made this specific point the other day in a complaint about a PIL I put in to both Teva and MHRA. The main subject of the complaint was use of the word "beta-sympatholytics" in a PIL. That is a term which is not widely used anywhere. So how would a patient know if they were taking one or not?)
No Idea if I'm taking one! lol Shall have to look it up.
It's so sad that groups like this are necessary, but thank goodness they are here. Wonder how many lives they've saved (mine for a start) and how many endos have killed!
Interesting that in one of the lists there you can see propranolol. And in the PIL there is a specific, separate, entry for propranolol - which doubles the confusion.
Which link are you refering to? The Wiki link? Just google beta-sympatholytics. If it's the first link, then google the title : why doesnt my endocrinologist know all of this?
Yes I went back and tried the link again and it worked perfectly! Don't know what went wrong before. A very good thought-provoking article, but it made me feel despairing!
Know what you mean. Unfortunately, Dr Holtorf is referred to as a 'quack' by some other doctors which gives our UK doctors the perfect excuse not to take him seriously! I despair too sometimes. x
I think it is disgraceful but most GP's are following the advice given by the British Thyroid Association with regard to thyroid gland problems and do not appear to know any clinical symptoms whatsover or listen to the patient.
I have always taken my meds in the morning as that's what it said on the leaflet.
My daughter was diagnosed with Hashi and was referred to an endo 4-5 yrs ago. She takes her meds at night and always has, but I only discovered this since I joined this site.
I guess the endo told her to do this as we have the same GP surgery, so there are people out there willing to embrace change.
Thanks for this greygoose! It is so true! I've just changed my GP from the older one to the younger one although he's probably at least 15 years out of medical school. He is still more 'teachable' than the older one who gets extremely defensive if questioned. I did manage a minor victory when I slapped a meta analysis of studies supporting adding T3 to the T4 I was already on. He prescribed me the T3 there and then so I'll stick with him.
I've been diagnosed with fibromyalgia and CFS amongst other conditions but I firmly believe that these problems are thyroid related as they appeared at the same time as my thyroid gland failed but haven't gone away with my current treatment although the T3 does help a bit.
This forum is the best one on HU (imho) and I get so much hope from the blogs on here. I won't - I can't give up on ME!
I couldn't agree with you more about the fibro and CFS being 'related' to thyroid. In fact, I would go as far as to say that they ARE un/under-treated thyroid. They've been invented as a get-out clasue for lazy and/or ignorant doctors. The fact that they haven't gone away yet, although helped by T3, to me means that you're not on enough T3. But I'm not an 'educated' doctor! lol
I do think that under-treated thyroid IS the cause of the fibro and CFS. I've been trying to find a letter from the only endo I've ever seen in which he says I feel better when my levels are high (strangely my TSH remained high too!)
I know I kept it because my Mum went through the same thing and I didn't expect to get the same treatment elsewhere. Sending you a PM with a little more info but I might get my wrist slapped if I posted it here.
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