It took longer than I expected I must say - around 7 years since I started my (real) thyroid journey, and about 5 since I last spoke to a GP about it, but the call has finally come. No more T3 until they have bloods.
Of course I have bloods, but they almost all show me being over the acceptable, green part of the scale. Not by choice, just two weeks ago I tried to lower my levels again and by friday just past I was a shaking, nauseous, dizzy, achey shell of my 2.5mcg more self, and so I put my dose back up again. Yesterday I did 8 hours in the garden and today a dog walk, Pilates class and bike ride. The difference is phenomenal.
I’ve actually just ordered another test, figuring that I could drop that 2.5 again to get the bloods within range, then show the GP. But another bit of me doesn’t want to do that.
So here I am. Do I comply? If I don’t they’ll stop my T3 which I’ve been damn lucky to have on the NHS for the last 5 years. Do I drop my dose, wait a week, take a test and feel crap just to meet the criteria?
I always knew this day would come. I don’t know if we have a new practice manager, and new eagle-eyed GP or what, but it’s really annoying to be faced once again with having to explain myself.
oh, and that explains why my script I requested three weeks ago hasn’t appeared yet…. Funny, they don’t stop insulin without asking do they? 🤬
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Murphysmum
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If you're talking about getting your TSH back in range it can take a lot longer than a week for it to rise enough and go back within range. More likely months, maybe years if then.
In many ways you don't have a choice whether to have a blood test or not as you are aware they will likely stop your T3 prescription if you don't. Hobsons choice really.
Its probably better to face up to the situation and have a plan B in place in the event they want to reduce your dose. Your GP can't change your dose anyway, it does need to be an Endo who does that.
You can take responsibility for any adverse (alleged) effects of a supporessed or low TSH as per NICE guidelines.
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility”
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “
no, no really funnily enough, I was talking about my T3!
Even on teeny amounts of T3 my TSH was suppressed, Eve the private endo I saw at the time said something like we’d fight that battle if it came to it with the GP! Even she was a little concerned that it shouldn’t be so low, but was happy to settle for that over the no life that I had at a the time. (which was the only thing that disappointed me about her!)
What about " getting" covid and being really unwell for several weeks then say you need time for your body to settle after the virus as covid can interfere with thyroid levels. In the meantime you need your T3.
Obviously they wont want you having a blood test whilst infectious. There's a lot of covid about so its not far fetched. I was meant to have an NHS thyroid check in February but havent bothered and they havent chased it up.
I've got to say your situation is the reason why I've never pursued T3 on the NHS and source mine myself. Its not ideal but frankly trying to keep TSH obsessed doctors happy at the expense of your quality of life, has never seemed like a price worth paying.
I put the insulin point to one of my endocrinologists (I never seem to talk to the same one twice) who was trying to stop my T3 during the high cost times and was told that, unlike withdrawing insulin from a diabetic, withdrawing T3 from me wasn’t going to kill me as I would have T4… I told him I begged to differ. To go back to just Levothyroxine would leave my life so diminished that I would decide it wouldn’t be worth living anymore… to which he laughed! I felt like strangling the smug little git there and then. But then I told him I lived in Wales and, being based in England, he had no jurisdiction there and I kept my T3! That wiped the smile off his face!
Start by listening to see if they want to remove the T3 after the blood test. Then point out that you have been so well on the current dose that you have not seen them for years, so why change it? Ask if there is a reason they want to take you off T3 - money, the old heart/bones thing? They wont admit it is money, so they will give you health reasons.
Look up helvella blog with lots of useful reading, and print off the ones that show that research has found the heart/bones thing not to be true.
They do not know what your natural levels are before your thyroid went sideways, they may have been what you now test at. Make up a test you had years and years ago which showed your thyroid hormones were pretty much in line with what they are now, then ask they why they want to change anything and make you ill?
I have never found the direct challenge method works with GPs, but act slightly stupid and gentle and ask them to explain their reasoning so I can think about and understand it. It goes against the grain, but works quite often. Hope it works out well for you and you keep the T3.
It’s funny, I always had this stuff at the back of my mind as I expected to be challenged one day, but it’s taken almost 6 years for it to happen so I’m totally unprepared.
Fortunately I actually found my previous set of bloods were in range for both T3 and TSH - I recall I was a bit baffled at the time as I felt rubbish, but the higher TSH might explain that and I had kind of overlooked it as I have entirely ignored that result for so long!
I think you’re right too, I’ve always found the acting somewhat dim option to work best…!
The only time I was ever straight with a medic was when I had my hip replacement and I spoke to the pharma at the private hospital re my T3. I had decanted some from a blister pack into a different brand plastic tub as it was more convenient, so when he asked for the brand/expiry etc if my meds it was all completely wrong. After I explained he just said “fine, it works for you you’re clearly doing it right so I’ll trust you to take them as you see fit” - so incredibly sensible!!
Your TSH will be supressed no matter how much T3 you are taking, so there's no way of making that right, my Doctor has finally come to that conclusion. I must admit to being a bit naughty when my blood test comes up for renewal and as I am on Thyroxine and T3 I just take the thyroxine for the couple of days prior to the blood test and not the T3.The Thyroxine result is usually low anyway. It doesn't seem to make much difference and the T3 comes up well within range, so everyone's happy!
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Requesting blood tests
blood test request form 
Latest bloods - GP reducing my levo :( 
Blood test results..perfect but still feel dreadful.
