Hello, this is my second post concerning the fact that my Consultant's Registrar wants to lower my T3 from 10mg but keep me on 54 mcg of Levo as my TSH is supressed. I have no thyroid after it was destroyed with RAI.However his Registrar was abrupt, merely telling me that my T3 must be reduced because of my age, and that I had to expect to feel worse afterwards.This seems to suggest cost cutting by N.IC.E and arguably also age discrimination as I wonder if the Registrar would suggest lowering T3 to a 30 year old?
I assume the Consultant can override the Registrar in this, but how do I word my letter to him? I have had fantasticfeed back from others on this site,everyone has been so helpful and supportive, and read all the recommended articles but am struggling to find the best ammunition to send when I write to him to my Consultant to , ask him not to lower my T3 but do not want to antagonise him. So I need really good evidence i.e. articles from The Lancet, BMA, Jama, Pub Med,to back up my case but there are so many out there can anyone suggest the ones that are most relevant to use please? Many thanks!
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HilaryWB
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Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially if on inadequate dose
Low vitamin levels tend to lower TSH
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations …..though some areas are much worse than others
I am in Scotland. Presently under the NHS , My Endo consultant ( Ninewells Hospital) has prescibed T3 no problem after reading my notes and talking at length with me. It was a young Registrar who decided to lower it, not my Consultant
(I am not sure if I am allowed to name him, but he is known to be a fervent supporter of prescribing T3 when needed).
thanks, I will do doubt get a letter telling me my T3 is to be lowered, and bloods were taken at the time I saw the Registrar, so I assume my GP will get those, so I will get a copy and then I will post them on this site , to see what others think. I do intend to write to the Consultant anyway to discuss the reason for the Registrar lowering myT3 is and see what he has to say about it. Thank you so much for all the support I am getting, I will also print out some of the articles that others have suggested !
My Endo consultant ( Ninewells Hospital) has prescibed T3 no problem after reading my notes and talking at length with me. It was a young Registrar who decided to lower it, not my Consultant + [the fact that] my Consultant's Registrar wants to lower my T3 from 10mg but keep me on 54 mcg of Levo as my TSH is supressed. I have no thyroid after it was destroyed with RAI.However his Registrar was abrupt, merely telling me that my T3 must be reduced because of my age, and that I had to expect to feel worse afterwards.
particularly when added together with this 👇
[not] my Consultant + he is known to be a fervent supporter of prescribing T3 when needed
and your previous posts, along with their valuable replies, as well as doing a bit of looking-up on your behalf (because, yes, his name managed to slip through on one of your posts and I'll pm you with the 2 links I found), tells you (and us) all we need to know [via an educated guess], about this registrar (note the small r!).
Basically, he comes across as a wet-behind-the-ears doctor (small d!) who needs a lot more educating - not only on the endocrine system/thyroid, etc., but, in etiquette with patients - and that really isn't your place to be doing that: that's for his Consultant after you've sent him that perfectly reasonable letter/email* (*his email is in one of the links I'll pm you).
Meanwhile, I'm passing on this meme I found on this brilliant forum, which sums-up the sum total of that registrar's knowledge of the thyroid/TSH for you to keep in mind when you think about him! 😎😏😉
Courtesy of a registrar Hilary had an appt with, "99% of drs" with no clue is now 99.01%!!
I assume the Consultant can override the Registrar in this,
One would hope so, particularly as his Registrar seems in his 'panic' (or ignorance/misguided thinking) to be overturning everything you have gained since being treated by him, which in turn risks undoing all the good he has done and returning you to the life you had for 40 years when you were wrongly treated. You really wouldn't think or believe that any self-respecting Consultant with his credentials would want to do that, would they? 🤔 So, I think you can safely leave this Consultant to deal with his registrar! 😏
but how do I word my letter to him?....................am struggling to find the best ammunition to send when I write to him to my Consultant to , ask him not to lower my T3 but do not want to antagonise him.
1) Why would you want to send anyone 'ammunition'...that they could then fire back at you?! 2) How do you think writing a perfectly reasonable letter to a/the Consultant who has given you your "life (and eyebrows!)back in 6 months by adding T3 and lowering my Levo." will 'antagonise' him? Let alone a Consultant as enlightened as he is who, as you have said yourself, "...when I was prescibed T3 by my endo after 40+ years of misery on Levo alone (as my GP , like 99% of them didn't have a clue about Thyroid disease ) my Endo looked up from my notes and said "God Knows how you are still alive!"" - He's a pussycat or, if you will, a Tiger or Lion Endo who is obviously fighting his patients corners with them according to their clinical need ("My Endo will put forward my case for my clinical need for being prescibed T3") and all you are doing is advocating for yourself, as well as [maybe] confirming to him that he knows what he's doing, you respect that, are grateful for this and would hope it would continue. 😊
As for wording the letter (or email, as you could always email him and attach a letter?): using words like, 'with respect', particularly starting a sentence that way if you want to put forward an argument is pretty effective (a tip I learnt from a lawyer in medical negligence claims!); kindly; evidence shows; express your gratitude for him giving you your life back (without being too gushing, of course!) won't go amiss; other than that, make it as brief as you can with bullet points (you have all you need for those in your previous posts and don't need to go on the defensive over his registrar but, to leave him to deal with that); and, finally, I'd personally copy that letter into your GP surgery with a brief covering letter (or use email again if your GP surgery allows?) for them not to alter your dose/do anything until you have heard back from the Consultant.
I need really good evidence i.e. articles from The Lancet, BMA, Jama, Pub Med
IMHO, if you want to include any articles, particularly on the continuation of T3, you won't go far wrong by quoting from one of the much missed diogenes articles - the late Dr John Midgely (link from pinned posts following below) - and perhaps, as I note you are in Scotland, as diogenes actually appeared in front of the Scottish Parliament in 2017 arguing for the case of continuation of T3 (2nd link below from an OP posted by humanbean 5 months ago in case you missed it, which has the YouTube link to his appearance) and your Consultant Endo being a University Lecturer in Scotland he may already have heard of him. ☘️🤞🍀
healthunlocked.com/thyroidu...<Post with link to YouTube Video to 2017 Scottish Parliament hearing which also contains a useful link to bullet points used at that hearing
Other than that, as Marz has pointed you in the direction of Tania Smith and Thyroid Patients Canada, which I have also found invaluable like so many others on the forum, if you're wanting to narrow it down perhaps these links from there may be relevant:
Apologies for not having left an indication of what each link is, as there may be more, and the last link, though doubtful of its relevance in your case, I've provided merely because it's a classic (and disturbing) example of what happens when somebody with a clue (in your case, your Consultant Endo) comes along and starts treating the patient and symptoms instead of being clueless (the registrar/GP's/so many Dr's we're all too familiar with) and going by numbers and/or scare-tactics and questionable guidelines and, in the process just like you, gives them their life back after years of suffering. Oh, and you can't go far wrong by following many of DippyDame 's posts and here's my final link to one of her posts I found useful 😊👍
Past, this, just do as greygoose suggests and imagine the ignoramus of a registrar sitting in front of you in his underpants whilst giving you his opinion and whilst you're dressed in the finest clothes befitting of your [superior] knowledge of your own body and thyroid journey. 👌
With apologies for the length of this, as well as for tagging so many people, it's just that as someone who has not only been so poorly treated for nigh on 30 years but, never treated for the Hashimoto's I've had whilst having a [changed] diagnosis from Grave's Disease/Hyperthyroidism to one of Hypothyroidism now written in my notes/on my SCR and with all the suffering that goes with that, I just get so frustrated when I see yet another doctor like this registrar coming along and trying to change the very thing that has given them their life and health back.
Best of luck and please keep posting and let us know how it goes. ☺️💜🦋
Thank you so much, all these tips are great, it really is a minefield trying to deal with all this alone! Mind you I understand that NICE want to limit T3 ,(imo because of the cost) and still claim that Levo and the TSH test are adequate! Maybe that and because of my age they don't reckon I deserve to have that expensive T3!! I will post my thyroid results whenI get them, it will be interesting to see what they are!
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