ok here we go again, total frustration with endos. im on a combo trial t4/t3 as you will see from my previous posts. i had previously been on NDT but due to no availability had to go to gp (at least my endo at hospital agreed to a trial of t4/t3). however, my TSH is still suppressed at 0.18 and T4 is10 so at the very bottom. I am feeling surprising well (after adjusting the dose myself) but they just bang on about the TSH being the important one and a suppressed TSH is a risk for strokes. I had to try and be tactful and said i had read up about this and that is was low T3 that caused strokes but he wasnt having any of it. he also said its strange that i was sleeping well taking my meds before bed and suggested i take them in the morning. i told him it was easier to work it taking them in the evening. They had suggested 50 levo and 20 T3. I adjusted it to 75 levo and 15 T3 and i am feeling well. he wants me to take the dose they recommended i.e. 50 levo and 20 t3 and get another blood test in six weeks. i hate being reliant on them - we are at their mercy. i dont know whether to do what they say or keep on doing what i am doing. Any suggestions?
another disaster: ok here we go again, total... - Thyroid UK
another disaster
Many many people on T3 find taking split doses of T3 and T3 at bedtime improves sleep
Many Endocrinologist think T3 is like speed!
T3 for many is calming and relaxing
As long as Ft3 is within range you’re not over medicated
exactly, try telling them that. He kept saying its strange I am sleeping well taking it at night. This is what we have to deal with. He didn't take a t3 test as they say it only has a short duration and is not helpful. initially, they did do a t3 test and it was just around the middle or so. I am reluctant to try their doses as i feel well on my own dose. i am worried that if they don't get the TSH to go up they will discontinue my T3 - i don't see why i should lower my dose and feel worse just to suit them - btw when i stated i wasn't worried about my TSH being suppressed as long as the other two readings were fine and i felt well, he still went on about strokes and said "I dont know where you are getting your information, but its wrong" - I didn't get a chance to tell him about Dr Toft's opinion plus i don't want to antagonise them too much as they will dig their heels in say i'm difficult and wont listen to me at all.
Do you wear a Fitbit or equivalent?
Very helpful to show printed proof of low resting heart rate and activity levels
Absolutely ludicrous not to test Ft3, Ft4 and TSH together
Get your own full thyroid and vitamin testing privately
Many of us need GOOD Ft4 and GOOD Ft3
Many would be very unwell with Ft4 that low ...ludicrous to suggest reducing further
Especially as Ft3 not even tested
I would not alter anything until you get both Ft4 and Ft3 tested
Far too often endocrinologists reduce levothyroxine dose far too much
What dose levothyroxine were you on before T3 added?
What was Ft4 before T3 added
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 third or half of daily 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?
What vitamin supplements are you currently taking?
When were vitamin levels last tested
yes i did all of the above re tested. i dont have a fitbelt but i take my temp in the morning and at other times - it averages at about 35.6. my T4 has always been low - prior to starting the combo it was 9 and now it is 10. before starting the combo i was on Thiroyd for about four and a half years and felt well on that but t4 was always low and tsh always suppressed but i felt well
Well on NDT TSH is almost always suppressed and frequently Ft4 is low ....most important results on NDT is always Ft3
But on levothyroxine plus T3 this doesn’t work the same as NDT....we often need Ft4 as minimum halfway through range....sometimes higher
If TSH has been suppressed for years it’s highly unlikely to rise...
so if they want me to take 50 levo and 20 lio surely my t4 will go down again (it was 10 with 75 levo) - they are only bothered about the TSH - he told me that straight from his horse's mouth, they only prescribe by the TSH. fighting a losing battle then
If you can get a supply of levo, you could just take what you feel well on and lie.
As you are on T3 they should have measured FT3 as well. You need FT4 and FT3 results. Some folk manage with low FT4 levels when on a combo. Others need FT4 over half way through range. When I was on 50mcg levo and 20mcg lio, I lost my voice and felt awful as my FT4 was 10 - 0% through range. I am now on 100mcg levo and 20mcg lio having worked my way up over the last 4 months. Things are improving!
We need to find where our levels are best for us and it sounds as if you have found a good place at 75mcg and 15mcg. I would continue with that if you can.
As for low TSH. That is what happens when we take T3. There may be some risk involved but studies are not conclusive and a lot of the research used hyper patients as their study group to look at the effects of low TSH. They do not say what the level of the frees were in the hyper groups. One study looking at osteoporosis found that the hyper = low tsh patients didn't have degraded bones, the problem was rapid turnover of bone structure not allowing bones to mature.
It is a difficult situation you are in as you are reliant on the endo for your meds but you know how you feel.
Forgot to say that in the rhythm of hormones T3 peaks about 4am normally. The body works through the night - the brain doing its filing and the gut its processing. This is why it makes sense to take some T3 at bedtime.
I know i am in a difficult situation, i have gained so much information from this site and other links that have been shared but at the end of the day, the NHS have a set protocol and unless you have a free thinking endo and not one of the sheep, its hard to get heard. Do you think i should just keep doing what i am doing and maybe not take my meds for three days before the test - would that make a difference to the readings? i am in a quandary as i have good energy levels at the moment
Come back with new post once you get full thyroid and vitamin test results.....currently your working blind
would that make a difference to the readings?
It would make a difference to your FT4 and FT3, but not your TSH. As SlowDragon said, if it's been suppressed (although, frankly, I wouldn't call yours suppressed) for a long time, it might never rise again, because your HPT axis has been down-regulated.
Low TSH causing strokes, eh? That's a new one. Usually they go on about it causing heart attacks and osteoporosis. Soon, they'll be claiming it causes gum disease, or in-growing toenails! Anything to scare the patient into obeying their commands. But, in actual fact, they are not there to give you orders. They are there to advise about your treatment. Whether or not you take that advice is entirely up to you. Ask your endo if he's ever heard of 'informed consent'.
i will keep that in mind greygoose when i next speak to whichever endo i get next time (its been different ones for the last three discussions) but he just was not willing to listen to any differing viewpoints about low TSH. However, he did say if i continued to be happy with a suppressed TSH i would be taking a huge risk of having a stroke - even though i told him how well i was feeling
The thing to do is ask them for proof of what they're claiming. As I said, I have absolutely never heard before that suppressed TSH causes strokes. I would tell him that, and say I would like to know more, and could he give me a reference or something, so that I could read it myself. Then, post it on here and let everyone pick holes in it.
You have to remember that in med school, they were taught that all patients were idiots, and had no idea what they were talking about. Which goes a long way to explaining their attitudes. It's really hard work convincing a doctor you do have some intelligence, that you're not just a brainless lump sitting in front of them, whining about imaginary symptoms. But expressing an interest in learning more, sometimes works. 
yes i will but i may do it by letter as i have a short fuse when i come up against stupidity and i dont want to antagonise them but yes you are right. i may even send in some papers by Dr Toft and others. (they will really hate me) but at least i can show them what i want to do and i am taking responsibility for my own health
Yes, that might be best. It won't do your health any good to lose your temper - always makes me feel worse. I have a short fuse - and a terrible temper! - too.
I have the opposite tendency, to cave in and apologise instead of standing my ground!
Well, of course, it does depend how ill you feel at the time. There are times I've just said a meek 'ok' and left with my tail between my legs. Sometimes you just don't have the strength to fight - and I think they take advantage of that. So, it's nice to give them a shock from time to time. So, sometimes, I bare my teeth and go for the jugular.
But, also, the things they say are so astoundingly stupid, you just go into shock and can't get a word out! It all depends.
lol so true especially going into shock - that was my experience today when he said his department only dose on the tsh
Very well said !
I realise why I am so attached to this site . Helps me know I am not the only one determined not to be talked down to ..
thank you all for your support
I would be a bit sneaky ! Needs must ! Certainly go by how you feel
Not easy battling with ‘the wise ones’ is it ...
no its bloody hard
Interesting he wants you on 20 mcg T3 and yet is banging on about the TSH. Not sure he knows what he is doing ... time to go it alone and do what feels best for you.
lol thats what i thought, increasing the T3 would surely lower the TSH - these are trained endos at the RIE in Scotland
Yes, but trained in what? They're probably diabetes specialists who think they can wing it with thyroid, but have no real knowledge. That's the way it usually is.
yes most patients in the outpatients ward are there for diabetes - i dont think they think the thyoid is particularly important compared to diabetes
They don't. They also think it's a doddle to treat. And, that if you're still complaining about symptoms when they think you should be 'cured', then there has to be something wrong with your brain and you need to see a psychiatrist. The dear doctor Tony Wheetman actually came out and said that in so many words, making him one of the most hated doctors on this earth!
lol yes you are right. i remember about 7 years ago after i had my RAI for my toxic nodule and i was becoming more and more hypo and the weight was piling on, i visited my endo and told him how i was feeling (i.e. tired, no energy, weight gain dry skin - i said i had always been a size 10 and within three months i was a size 14). he condescendingly put his hand on my knee and said "i think you are a bit depressed, i can give you something to help with that") if i had had more energy i would have bashed him up nicely but i was forearmed for this having been told that was a popular response from a doc to say you were depressed
Oh, they think all women are depressed! But, it's just wishful thinking, because depression is easier for them to deal with than thyroid problems. Yes, I've had that, too: here, take these lovely prozac tablets an leave me the hell alone! lol
Speaking as someone who is currently learning the hard way about the hazards of changing Levo doses to please a Gp, if i were you i would be tempted to stick with your instinct and leave it alone. Obviously i understand your dilemma about keeping him on side to continue prescribing.
At the very least i would insist on having it IN WRITING from him exactly what he was hoping to achieve, by altering your dose, including an statement that you currently feel fairly well, AND stating that you can return to your preferred doses if you feel less well. on his suggested dose.
If he's not prepared to do that , then i think you should question his motives.
I only let my levo be reduced because of over range and rising T4/low TSH, which seemed reasonable to try at the time , but i wish i hadn't agreed, that was last July and i still am not back to where i was activity wise.
And you have the added possibility that you are being set up to fail so they can prove there is no need for T3.
They do like to bang on about the risk of strokes/osteoporosis , but even if that is a risk , they don't seem to worry if their change of dose sticks you on the sofa for month's /years, when you were previously walking about on your legs every day.
I'd like to hear them justify how that is not a much greater risk for deteriorating your bone/heart health.
Sorry , that turned into a rant , and you probably know it anyway!
yes agree 100% i honestly dont know where i would be today if i wasnt a member of this site
Ditto
GP to another GP - "I had a patient who actually questioned my advice!"
WHAT?
Yes, acually started giving me lists of papers to prove her point!
Oh, a woman?
Yes. of course, it was thyroid related.
Huh! Did you look at the papers?
No, of course not, I did not go through all that medical training for nothing!
Did you actually attend the half hour lecture we had on the thyroid?
No, I skipped it. Did you?
No, it is not important.
Quite. Women and their moods!
So what happened?
I told her she was depressed and gave her a prescription, you know the one they are pushing at the moment and I get extra money.
Good idea. We cannot have patients thinking for themselves!
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Get and and go, has got up and gone.
