Hello all, haven't posted for a couple of years when I suspected my GP was going to withdraw my T3 which she did without even the courtesy of informing me - just had it taken off my repeat prescription list! Stupidly I just let it go - religiously took my Vit D and B12 as advised here, also still had some T3 left which I eked out for a few months but, possibly like a lot of folks on here, I felt if I rocked the boat it wouldn't go well for me on my records. Then I came across on this site a paper which stated that NHS England had said after a consultation 'that patients already on T3 should be referred to an endocrinologist for a review'. I then found the actual guidance paper which went on to say 'the withdrawal of liothyronine should occur gradually in line with NHS consultant endocrinologist recommendations and may take many months'. Armed with this info I talked to my GP just before Christmas. Her immediate comeback was 'but you were prescribed this privately'. I wasn't, it was prescribed by the local NHS consultant endo in 2006 who believed in treating the patient not just looking at blood test results. Sadly now long retired. She then offered to refer me on to an endo after excluding any other problems that more blood tests might reveal. She also said she might forget the referral with Christmas coming up so I should call and remind her in the New Year. This I have done twice and now Ive had a call from the Practice to say she wants to talk to me about the referral. I might be wrong but my guess is she's not going to do the referral. My question is really where do I stand? I did a Blue Horizon DNA test last year which said I definitely needed T3 but I'm pretty sure she would just sneer at that. Can I ask for a private prescription from her or would I have to get the referral to the endo for that? Don't think there would be any point in switching Drs - they all pretty much toe the Practice line. Have listed below a few recent blood test results - no Vit D was requested which given that I have a history of low Vit D and my main problem is debilitating fatigue is puzzling.
How much levothyroxine are you currently taking on these results?
Were you on any T3 as well?
Ft4 is very low
Obviously you need Ft3 tested
Your B12 is likely too low (GP won’t agree)
Do you have hashimoto’s?
When was vitamin D last tested?
First step is to get FULL thyroid testing plus vitamin D
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Hi SlowDragon, thanks for your reply. Was on 125 mg T4/10mg T3 for approximately 13 years. Now on 100/125 T4 only although GP thinks I’m over medicated. Don’t think it’s hashis as antibodies were low last time I tested them (Blue Horizon) Periodise 21.0 (>34); Thyroglobin 16 (>115).
Last Vit D test was 40 sometime ago but I supplement both D and B12 myself.
So when my GP calls on Monday can I insist she refers me to the local endo?
Perhaps I should hear what she has to say and go from there. Have been thinking about the Blue Horizon Thyroid Eleven check for a few weeks now so will probably go down that route too.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
Is this how you did this test?
Ft4 is far too low. Only 13% through range
Should be at least around 70% through range
Helpful calculator for working out percentage through range
Thanks SlowDragon, that’s all really helpful and I will email Dionne at Thyroid UK but will request all those tests from my GP and follow the guidelines set out in your reply. If she won’t agree to them (and I know half the time it seems to be up to the labs as much as the Drs) I will get them done privately. One question I have - whenever I query that my vitamin and iron levels are in the lower end of range, my GP always says that is irrelevant as long as they are within the range. Is that correct?
Aah that’s interesting - will only treat deficiencies. It’s always seemed so ridiculous that my symptoms could possibly be alleviated by my vitamin and iron levels being optimum and she couldn’t see that but I now understand that she’s not obliged to see that. Thanks again Slow Dragon, I will post after my GP call next week.
As about 90% of population has multiple nutrient deficiencies...nhs would be completely swamped
But ...if they looked at the whole person (as demonstrated so well by Dr Rangan Chatergee...in Doctor in the House BbC series) .....just think how much the NHS pharmaceutical bill would be reduced
Am really enjoying these videos and what a lovely man he is - why can’t all Drs have this much empathy. Also managed to pick up one of his books this morning in our local second hand book shop - am hooked. Thanks again for pointing me in his direction.
This is a disgrace! How dare they just withdraw a medication you are dependent upon to function? Would they withdraw insulin from a diabetic? And just deleting it from the prescription without even having the courtesy to speak to you and explain beggars belief. The guidelines aren’t great, but your GP didn’t even follow these (funny how so many GPS flout the guidelines when they want to but stick slavishly to the guidelines about TSH when dosing.)
At the very least she should have given you Levo or upped the Levo you were on. You really really need to complain loud and hard. This should not have happened.
And how could you have been ‘prescribed this privately’ if it was on an NHS prescription. Doh! What a tw*t! It says nothing in the guidelines about the origin of recommendation for a prescription over 14 years ago and anyway, as you state, it did come from an NHS endo.
You must kick up a real stink about this. See you MP, complain to the Practice Manager, anyone! It makes me soooooo angry! You say you can’t change GP, but can you change to another practice? Remember, you are 100% in the right to insist your T3 is reinstated and that you are referred to an endo for a review. Stand your ground. I’d be taking a print out of the guidelines with a lot of highlighting on it to push in her face!
She is making you ill and harming your health. Ditch her. 🤸🏿♀️🥛
Thank you MissGrace for your indignation and concern on my behalf - I agree with everything you say especially them being happy to flout the guidelines when it suits them! I do actually need to change practice as we have recently moved - I stay with this one as they put test results up online and I feel I can at least monitor my results whereas the new one I would register with doesn’t. But if I end up going down the private health checks route that won’t really matter. Thanks again MissGrace.
You have a legal right to a referral. When I encountered similar problems with my GP I remembered what someone else on here advised and pointed out to the GP that she would be responsible for my ill-health that was a consequence of not having the medication I needed and not being given a referral. I worded it carefully, trying not to sound threatening while still being clear about a doctor's obligations to patients.
Many thanks for your reply Thyr01d, I am just sitting here making notes for imminent phone call and have incorporated your point about on-going symptoms into them.
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