Saw my GP yesterday evening a little worried about how he had received my letter and pulse article. I have only just transferred there so don't really know him. At our last appointment he had said my results were normal and shrugged his shoulders when I asked why my hypo symptoms were all back worse than ever! So I asked him if he would test ft3,and vitamin D as they weren't done to see if I was not converting and said I was considering buying it over the Internet and he told me not to obviously and agreed to order the tests including tpo antibodies and meet again in a week. So on Monday I went for the blood test and after some advice here (thanks) I sent him a copy of Pulse article by Toft q6 and a letter explaining my symptoms again and how the number were in range but not normal for me as someone who has been taking thyroxine for 21 yrs at various doses and said that my TSH ideally should be <1 as per pulse article etc and about how the weight and the inability to lose it was really getting me down and that n the hypo symptoms meaning I can't do much with my kids struggled at work and can't dance as much as I did. (. I was dancing salsa 5 times a week before my I started going downhill again)
So went in appointment and he thanked me for the letter saying it was very informative and helpful! Phew said he will help. Then the tests! The lab had refused to do them !!! Tpo ab and ft3 were refused by lab as tsh in range, saw it on his screen and the earlier test on pth ( parathyroid ) was refused as my calcium was in range(only just!) So you finally find a GP who will listen and help and he can't get the tests he wants because the lab says so!
So without any further tests to go on he increased my levo to 150mcg (said has to do it a step at a time) and test in 6 wks then asked me if I had faith in him to manage it all or if I would like to be referred to see endo as I had a lot of knowledge and researched the subject well he said the specialist would be able to order the t3 tests even tho he couldnt and answer more of my questions than him. So I said tho it wasn't that I didn't have faith in him I would like to see a specialist. So he referred me and upped my dose. I will get a choose n book letter.
A small step but in the right direction! Happy that I moved doctors surgeries and this GP is young and willing to learn and help so I left with a new levo and vitamin D prescription and a smile on my face.
Will blog again when I see endo or go back to gp in 6 weeks
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suzafc
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You could start asking questions through your local PALS team as to why lab refuses what your doctor requested. But you might lose the will to live before you get an acceptable answer.
It's a great improvement from the last one who said all my symptoms were weight related and i needed to stop eating a couple of days a week, yet failed to tell me my TSH had gone up from 1.6 to 4.64 in a year!
On the Lab front i'll wait and see if the Endo can successfully get the tests done. Just need to work out which one to choose when the letter comes.
I have read that any increase in TSH that is more than 0.75 is 'biologically significant'.
My nursey who agreed to do the ft3 test put, 'thyroid study' on the request chit. Whether this did the trick or not I don't know but the lab didn't refuse.
My local lab also refused to do T3 when asked in Jan as my TSH level had dropped to within normal. However my GP phoned and requested the test. The lab has agreed to do it with the next test if my GP adds a note following up his phone request. I wonder if you GP could phone the lab - or you could offer to pay for that one test?
oh well done, that was good, you have found someone who is willing to 'listen' (something apparently easy to do but in practice so so hard to do well!).
Do you already have in mind a 'good endo' to go to?
I know there are 2 in the local area that i an trying to choose between. Don't know if i can find any information on I have ordered the Thyroid uk information pack does this include list of recommended nhs or just private doctors?
did you try to post here on this forum for recommendations? you can post a question (example: does anyone know a good endo in 'so and so' area? replies via private message please).
Great news - your GP sounds caring and willing to be educated My GP couldn't get my fT3 tested, but as the endo has now asked for it, it gets tested every time In fact this was the only reason I went back to the endo for a second time. Good luck with your appointment - maybe you could ask for some endo suggestions on here, so that you get a good one xx
Yes I think I got lucky and he isn't the gp that the new practice allocated but he was covering when i got an appointment but he is part of the group practice so hopefully I can keep seeing him. I will ask for Endo suggestions as you and nbd have said. Thanks Sue xx
when and if people do suggest an endo to you I think you should ask them 'why' they think he/she is a good endo.....as a doctor who is 'just polite' but then does not know much and/or does not help people to improve on alternative medications (ie T3/NDT) and only goes by blood test results does not sound like a very good endo for my specifications
You can email louise.warvill@thyroiduk.org who has a list of Endos, one of whom may be in your area.
It is great that your GP was understanding about your Pulse article etc., and it is a learning curve for him too. If the Endo isn't too good you can always refer back to your GP and help him with your treatment.
I'm glad you had a good GP visit. I know some labs can refuse to do a T3 test but some people have found that if you ask the GP to write "possible conversion problem" on the lab request they will then do it. Because the test is the only way to know if someone does have a conversion problem.
Since getting T3 tested by a GP is rare, how many people with conversion issues go undiagnosed?
I'm afraid though that this doesn't seem to always work in our favour. I managed to get ft3 tested as my ft4 was down to 11.0 and my TSH up to 2.4.
The result came back high ft3 and the endo my GP spoke to about this said, 'As she is converting so well without help then she is fine - in fact maybe even hyper not hypo'. It left me without a leg to stand on given all the symptoms are hypo.
Regardless, I've now just had a full TFT done privately for the whole lot in one sample so will see whats what and plan my next move!
I always say if you dont succeed with your first gp try and try again until you find a good one and latch on to that one as they are as rare as gold dust. Having a good gp is what made me better again she gives me input in my own care and that is invaluable for me
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