Went for a review to endocrinology on Tuesday (14th)
Finally a good result!
After the first visit to the nurse practitioner and her reducing my dose to 75mcg as per last post, I got to see the consultant.... was very anxious and ready for a battle but he was lovely 😊
Said the TSH was quite often low and sometimes undetectable in some people but they functioned better. Said I was probably one of those who were better with a higher dose thyroxine even though my pituitary was suppressed.
He was more interested in how I felt and not what the results said.
He said even if there is no detectable TSH on my next review in 8 weeks we can negotiate to have 5 days 100 and 2 days 75 (negotiate!!)
Pointed out the risks (mainly osteoporosis) but said it was just a risk and something I should think about.
I was in 5 mins!
Faith in the NHS restored!
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Countrylou
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Oh but I did forget to ask about the sub centimetre nodules present on both lobes of the thyroid as per thyroid scan: will ask next time 🤔
"Said the TSH was quite often low and sometimes undetectable in some people but they functioned better. Said I was probably one of those who were better with a higher dose thyroxine even though my pituitary was suppressed.
He was more interested in how I felt and not what the results said."
WOW!!!! Amazing. It is rare to find someone so enlightened
"Pointed out the risks (mainly osteoporosis)..."
Medics are told there is a risk of osteoporosis etc, if TSH is suppressed but there is apparently no real evidence for it. As long as your vitamin D level is OK. If not, take it with vitamin K2 and magnesium if the supplement is over 1000iu.
Also, don't take Calcium supplements if you can help it, especially the vitamin D/Calcium combination they are fond of prescribing for low vit D (such as AdCal). Apparently inorganic (mineral) calcium supplements can definitely increase the risk of bone and cardiovascular problems. Increasing calcium in the diet is the way to go if needed.
Compared to many you still have a brilliant doctor there! And he respected you enough to just give you the warning (even though likely mistaken) and leave the decision to you
A few months ago I found such a gem in my local practice who actually admitted that he didn't know much about the thyroid (they don't teach them at med school) and asked me for information!
I don't know about the other doctors as I mostly see one of the practice pharmacists, who are more likely to go strictly by the rules. But to just to have one doctor who will listen and respect the fact that some of us do know what we are talking about is such a gift and blessing.
Mind you, if we try to treat medics with respect, they might be more willing to return the favour. Though, sadly it seems that is so rarelyt the case.
After a bit of a run-in with a pharmacist the other day (we were both being polite while at the same time trying to convince the other they were mistaken) I realised that because I was so on the defensive he may have felt as disrespected by my attitude as I was by his.
It's such a fine line though, even handled with kid gloves some still won't listen. What I hate most is the patronising "I'm the doctor (or nurse or whatever) dear, and you are only a patient. Therefore I know what is best for you".
And they probably feel the same about some patients who really ARE a pain in the neck and think they can order the doctor about by waving a newspaper article at them and demanding they do what it said!
The lovely doctor who helped me so much was quite impressed when I gave him some information on thyroid treatment that he asked for. He said that instead of just giving him "An article from the Daily Mail", I had actually done some research.
I take the Vit D spray (1spray in the morning and 1 at night) I’ve been lactose free for 4 years and don’t take a supplement although I have become addicted to Goat Yoghurt ... not sure is this is as bad. Get plenty of Calcium in food though
The risks 're oesteoporosis were found in research on people with hyperthyroidism (i.e. where their suppressed TSH and over range fT4 would also mean an above range fT3 (though they didn't measure fT3).
It is your fT3 result you need to be in range (in top quarter of range) and take notice of, not fT4 or TSH. If they failed to measure fT3 you need to go by signs (temperature, pulse) and symptoms to make sure you're not over medicated.
The same age as me so not elderly ... you might actually need more than 100mcg it all depends how you feel. Do you feel well on 100mcg? Also the TSH is pituitary gland hormone and gives no indication of how your thyroid is functioning it is the T4 and T3 that counts. I am not medically trained but I have gained loads of knowledge over the last 10 years from sites like Elaine Moore's in the US and other sites in the UK.
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