After a blood test a few months back I was asked to decrease my T3 dose so they could increase my T4 prescription.
Despite a marked increase in hypothyroid symptoms in the months since the T3 drop and T4 raise, today a second endocrinologist has asked me to now drop the T4 a dose too as my TSH is currently too suppressed.
In fairness to this second endocrinologist she asked whether I’d prefer to drop a dose of T3 or T4, and for me it was a no-brainer; I’m keeping the T3 at the same dose.
However, for obvious reasons I’m hugely concerned about this second reduction of T4.
When I told the Endocrinologist of the increase in all of my Hypothyroid symptoms since the first T3 reduction, she said it could be attributed to other things, despite the clear correlation in my lived experience!
I’m to have another blood test and appointment in a few months, but in the meantime I’m so worried about how I’ll cope; I was struggling enough before I reduced the T3 last time, let alone after! The last few months have been an absolute write-off.
Not sure why I’m sharing here, except to vent. It’s like they’re giving me the illusion of choice with one hand, only to take away with the other. Argh! I’m so upset (again)!
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Abi-Abster
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I would suggest you compose a letter to your Endo and saying that on reflection and discussion with others you are NOT willing to drop your dose as your levels are well within range, the previous dose reduction has made you more symptomatic, you would prefer to be treated on those rather than a pituitary result!!
This was the toe to toe I had to have with my NHS Endo
Free T4 (fT4) 16.4 pmol/L (11.1 - 22) 48.6%
Free T3 (fT3) 5.6 pmol/L (3.1 - 6.8) 67.6%
You are no were near risking overdoing it and next blood test stick to 'our' timing rules 🤗
I'm annoyed with myself that I didn't give you the 'NO' talk yesterday 😩
Someone here (with a better filing system than mine will be able to send you a link to documents that show that T3 suppresses TSH
I’d already had a conversation about not taking the T3 before the test, but decided on reflection to go ahead anyway, as apart from anything else I was intrigued to know where my levels were after my last T3 drop/ T4 increase.
And, since the Endocrinologist had actually listened during my first appointment with her last time, I felt like I had the opportunity of a fresh start. More fool me!
Thank you all for your replies - got to run tonight but just wanted to say Thanks for now - will continue later!
There's an element of Endo training that you need to embrace in your role as Thyroid UK Ambassador 🤼♀️ my Endo didn't appreciate me point out her illogical TSH nonsense and that I upped my dose to a functioning level as her lower dose put me back to bed... but she does sign off on it now as can't argue with my in range fT3 & 4 and my ability to attend appointments showing absolutely no signs of over medication, heart rate, BP and temperature all on the low side.... we agree to disagree about TSH.. in my favour😁
Am tempted, as I have a new script from the GP - plus the new Endocrinologist gave me a prescription today - so I have pills to play with.
But the Endo wants a retest and appointment within 4 months, so I think it’s probably not a great idea right now. Unless I’m wrong and I can sneak it past her for the next couple of months, SlowDragon ?!!
I just can’t understand why some endos dose by T4, T3 levels and how we feel, and some rely so much on TSH. It’s almost like they have no consistent training in this area. 🤷♀️
It’s interesting, because there are scientific papers on the harm a low TSH can potentially do but not so much on -
‘Well, if you monitor your bone density via a regular DEXA scan and your heart via a regular ECG, a low TSH with T3 treatment is eminently doable’
You’d think the lived experience/ argument in favour of ‘how T3 can improve your life daily’ vs the ‘suppressed TSH’ might be balanced out - in my case for example, the T3 is worth every mcg!
read this link. I have secondary hypothyroidism from pituitary failure and this was ignored for years as tsh goes down which would usually indicate hypothyroidism but not in secondary case.
I have pituitary damage I couldn’t get any treatment in nhs I had to pay to see [ redacted doctor ] in London privately I am on levothyroxine and T3 now and improving.
I’m sorry you’re having this experience. Having been on the receiving end of similar, I know it sucks!
I’m learning an important lesson for myself right now that I will share in the hope it helps. It is that I can either make my gp/endo happy, or help myself get well. Ideally I can have both, but if not, being well is my priority. Realising this has helped me in two recent scenarios, including an appointment last week when I told my endo I’d tweaked my meds, which he wasn’t happy about and wanted me to reverse. I told him that I was unhappy about taking less as I was only just starting to feel well after about 5 years of treatment. And if he wanted to review me more regularly to check that remained the case he was welcome to. So my self-prescribed increase is now prescribed.
Wow WaystarRoyco , you have balls of steel! Well done you. I’m always concerned about annoying the endocrinologist and making them even less sympathetic as a result.
I’m going to keep reminding myself of your ‘either making myself happy or the Endo’ approach; you’re so right in every way! When it’s put that bluntly it makes perfect sense that as the ones living with it all day every day, our perspective should be received more weightily and/ or take priority.
Thank you for those nuggets of wisdom and may your Endo follow your chosen path indefinitely!
Oh Abi-Abster I used to be the same. But then I have generally been a people-pleaser till now, so it figures. I don’t know how it occurred to me that at some level I was allowing myself to feel dreadful in order not to upset someone who probably didn’t think about me from one appointment to the next. Gah! 😩 But now I’ve seen it, I can’t unsee it, if that makes sense
Your balls of steel comment made me laugh, though! I think most of us on here need them to get what we need. Wishing you strength as you grow yours too!!
I really sympathise, I have a similar problem with my NHS endo. He now says the T4 & T3 results don't matter as they can vary depending on when you take the medication and time of day the blood test is taken. My T3 is suppressed but I am taking T3 and he asked me to reduce levothyroxine but I said no. I had been having some irregular heart beats so I thought I would try a reduction and now I am half a stone heavier within a week, so going back to normal dose to see if it was just a blip as I had recently had an operation. Endo said he wanted to reduce my levothyroxine until my TSH is detectable! They just don't understand the implications! I usually delay my appointments in the hope I will see a different endo but so far no luck with that. Good luck with it all.
Ha Essexmum I’ve tried the delaying appointment approach myself, especially as there’s one endocrinologist I’m mildly scared of (she absolutely _hates_ that I’m taking T3 and has a real bee in her bonnet about it).
I understand the half-a-stone heavier thing; my bowel movements have reduced to 1 or 2 a week(!!!) since last time I was asked to drop my previous dose of T3. My belly is all immovable waste! Absolutely horrible and so unhealthy too. And this is only one result of the many negatives I’ve experienced since!
Like. How many obvious correlations to being undermedicated do they need?! Aaaaaarrrrggggghhhhh!
hi Abi-Abster you have every reason to rant…. You’re the one that has to live with fatigue and brain fog when someone decides to reduce your meds and ignores your experience as an expert patient. And I’d be pi**ed off if my hypo symptoms were put down to other mysterious causes (which no one suggests diagnosing or treating). Really hope you can make the case to keep in a dose that makes you feel your best.
Thanks Hashiboy it’s so unbelievably frustrating, especially when I know I don’t have to feel like this - and indeed haven’t felt like this in the years I’ve been successfully self-medicating with the help of this forum! So why willingly go backwards to the 20-odd lost years pre T3?!
Since the last T3 reduction I’ve had to go back to bed as soon as I’ve got up, and my pain relief meds have doubled. So that’s 2 quite obvious direct correlations, let alone the peeling nails (oh, Hello old friends!), sludgy brain and what feels like my first bout of ‘empty-energy depression’ in years (that’s the best way I can describe it, as it’s not like standard bouts of depression; for me it’s a physiological response to being under-medicated, as though my systems are down metaphorically as well as literally).
So yes, you’ve got it in one, I am extremely p’d-off that any of this could possibly be attributed to anything other than too little thyroid medicine!
Gah. I just want to not to have to fight for my right to good health. It’s exhausting constantly having to advocate for yourself.
I really feel for you and totally understand every symptom you describe. I think some people think hypothyroidism means you’re a little bit tired. Good luck and hope your dosing gets sorted.
Abi-Abster I’m currently month two of changing meds after agreeing to decrease T3 and increase T4 over eight months ….. I’m slowly hitting the brick wall and am starting each day like a zombie. The difference this time is I agreed a plan with my endo. I’ll test every 8 weeks and add in more T4 and log an agreed set of symptoms . The idea is that when I see my endo next year I’ll be able to say I’ve fully explore T3/T4 combos and have data on what suits me. We agreed before I started that I could go back to mostly T3 if a more T4 heavy combo didn’t work and that I could stop the experiment if I felt too rough. It’s a bit unpleasant but it feels like a properly thought through experiment rather than ad hoc dropping T3 because of a single TSH test. I don’t know if your endo would agree to something systematic like that and judge outcome on symptoms as well as TSH. They all seem to vary so much in how they approach our care. I’ve seen 5 NHS endos and two private all so varied, my last NHS guy was very friendly but wouldn’t prescribe T3 and a consultation lasted about 3 minutes on the phone, his predecessor was happy to prescribe T3, one of the private endos didn’t really think you could have symptoms on T4 and any symptoms were due to something else (I.e mental problems) and the next private endo was keen to try T3 only from the get go. Luckily my latest NHS one seems to be open to collect data even if he isn’t keen on adding much T3. We see endos cos we are the exceptional cases that can’t get well in primary care so it seems so odd that even with endos the approach is so varied. Sorry for the long post but I’m in a similar treatment place to you and your post really got me thinking.
Well, that’s the thing! I keep composing multiple letters in my head arguing my case - which I already did in person during my actual appointment (in terms of asking to increase my T3 back after the last decrease) - and I don’t know how to make myself understood if I’m met with such a brick wall that they not only disregard my perspective but want to reduce my meds again.
I was under the impression that T3 suppresses TSH even at a very low dose, that a suppressed TSH is part and parcel of T3 treatment. Thats what I wrote to my GPs and said. I copied my private endo into the letter and he now quotes me on this.
My private endo decided I should lower my Levo a bit last Jan to see if my TSH would rise from 0.01
I take T3 too. I reduced the levo for 2 weeks - then hit the proverbial brick wall and put it straight back up again. Told him 2 months later what had happened and said I won’t be doing that again I have a life to live!
In October I asked if I could raise my Levo by 12.5mcg twice a week as I feel at 33% through the ref range it’s too low and I’m struggling too much and have under active symptoms. He said it wasn’t needed.
I have added the 12.5mcg of levo twice a week now for 3 weeks. Feel marginally better. Sleeping well and the fatigue is not quite as bad. I’ll let him know in 6 months when we next converse.
Why do they always think it’s ok to treat us this way? I’d like to have plenty of energy, be able to go for a long walk and still function the next day, a full day out would be a miracle and an evening where I socialise past 9pm and don’t feel dreadful the next day would be something I haven’t done for about 7 years.
You rant on………. You have every right to feel this way……….luckily (or unluckily for all of us on here) we know how you feel x
Oh Lovecake this is all so familiar - I could’ve written it myself multiple times over the past 20+ years. And it’s so frustrating when we KNOW what would help!
Living with an undertreated thyroid is like wading through treacle half the time and having to go to bed and rest the remainder of the time. Why would we willingly do this to ourselves when we’ve experienced living with less treacle or even without it altogether?
And why aren’t we supported in feeling better? Thyroid meds are literally life-changing, so why not be prescribed medicine to enable this improvement?
The past 9 months since they lowered the T3 and bumped up the T4 have been absolutely horrendous. And now they want to reduce the T4 too! It’s like their duty of care is instead a duty of harm.
I’m assuming you’re having to self-prescribe and source your forbidden extra T4? Ridiculous we have to go to such lengths.
For my extra bit of T4 I’m breaking up a 100mcg tablet - not easy, but as best as I can. I reorder my meds myself and have managed to get nearly 2 weeks of spare 😈, so I’m not buying any yet. I found one place online that do 25mcg tabs, but realised they sell Teva and I don’t want that. Maybe I’ll look again next year. No time spare this year…..
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