The 25mcgs of levo I was taking was enough to switch my own ability off but not enough the replace it so my T3 and T4 are dropping even lower and are both well towards the bottom end of the range (especially the T3)
My GP wants me to remain on the 25mcgs and not do anything about it which surely is going to cause me to just get worse and worse isn't it?
Is it safer to continue on the 25mcgs knowing that it's causing me more damage or should I come off it completely until someone sensible can take over?
I'm just concerned that I am feeling so ill (which may also be related to my shockingly terrible menopause) and I don't have any room to feel more ill than I am as I've had to take lorazepam the last couple of days just to manage the level of anxiety I'm feeling over feeling so poorly.
What is the best route here to do for best?
I know I could also just double up on my levo now myself but I'm frightened as I have a heart condition which includes non sustained ventricular tachycardia (a potentially dangerous heart rhythm) and it can be triggered by some medications and I know that levothyroxine is particularly irritable to hearts.
I just don't know what to do for best.
I just want to stop feeling like I'm dying.
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If endo has discharged you …..if GP won’t increase dose
Then you need to see different thyroid specialist to get dose levothyroxine increased slowly upwards in 25mcg steps until Ft4 and Ft3 are at least 60-70% through range
Typically that’s around 1.6mcg per kilo of your weight per day
Roughly where in U.K. are you
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
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Problem is that I just don't think I can afford to see anymore private ones and nearly every single private one I've seen have completely dismissed my low T3 and T4 and none have even wanted to put me on levothyroxine.
The only endocrinologist who's ever wanted to put me on levothyroxine is the NHS endo who's released me 🙄
So even if I can find money to see someone, is it going to be another waste with them saying my T3 and T4 are fine?
I mean, maybe they are because they are worsening on the levo so maybe I shouldn't be on it and upset the status quo?
Maybe my body is just meant to have low T3 and T4?
My TSH leapt from 3.2 to 1.1 on 25mcgs but lowered the T3 and T4 so if I go upto 50mcgs is my TSH going to end up going hyperthyroid as it jumped so much on such a small dose of levothyroxine.
I have substantial heart problems and I really cannot run the risk that levo is going to bring on NSVT in me as other medicines can do this.
I genuinely don't know what to do and have no where to go to ask.
I'll keep taking the 25mcgs for the meantime but does that mean I'm just going to get worse and worse?
I need an endocrinologist who will probably help me and I can pay for that privately but I can't afford to keep seeing doctors at 300 quid a time that say my thyroid is fine.
My vitamin levels are all ok.
My vitamin D has jumped from 46 to 132 and my ferritin has increased a little and now around 65 I think. Vit B12 has always been good.
I take the sprays , vid D and K and iron as I can't tolerate tablet supplements due to side effects.
I'll have a look through the list and see if I can find someone.
I wanted to go to Miles Levy because his colleague Trevor has been saying some wonderful information on the pituitary site about T3 and T4 but last time I checked, I couldn't see Professor Levy for months.
Have you considered trying to find out if the NHS endo. who put you on medication will see you privately? Or ask him to put you back on his NHS list? He will be horrified if he could see what's happening.
Low T3 is not good for the heart. The heart has a lot of T3 receptors in it and needs a good reliable feed. So you can get problems with too much, but also too little.
50mcg is still considered a starter dose, but of course I can't advise you regarding your particular condition. I have permanent Afib, but that's much less serious. Do you have a cardiac nurse you can speak to? How about your cardiologist? In theory a cardiologist should understand the need for T3, although mine didn't and told me some scary rubbish about it that frightened me half to death at the time. He was so wrong. He has since retired and gone private!!! His replacement discharged me from clinic so I've not been reviewed since 2020. Rubbish. I've had to ask to be referred all over again because I have some concerns and I need to see a cardiologist about them. Hey ho!
I would see if I could speak to your heart team about this if I were you.
Then if they can reassure you but not help in other ways (I'd hope they could give your GP a right telling off!) you could cut a 25mcg tablet in half and increase by 12.5mcg at a time if you wanted to be ultra cautious.
Would that dose be enough to start increasing it though because the 25mcgs has decreased it so I don't want to take more and find my levels drop even further. That's what's frightening me so much
It won't increase it, but it's a cautious way to increase slowly. You could do 12.5 for a couple of weeks to make sure there was no reaction and then up to the full 50mcg for 4-6 weeks before testing.
If your FT3 continues to drop on that dose it's still too low for you. But you can't jump up more than 25mcg a time.
Being low on thyroid hormone means you have flat batteries and you can feel terrible like that. I do! What I meant was raising the dose by 12.5 won't raise the T3, but should slow down the decrease, ready for the next increase.
How did you feel and what were your blood levels before you started Levo?
The lower the TSH goes the less it asks your thyroid to produce more hormone, hence the drop in levels. So you will need to over ride that loss of TSH. It's odd it fell down there so fast. But it is what it is and right now you either need to stop it completely (but it will take a while to recover and you will feel possibly worse) or keep going.
Do you have access to a cardiac team for a chat about it?
Do you normally take your thyroid medication at night? if so, what time of day did you do the blood test? How long from the last medication was the blood draw?
My TSH in November after I'd been on the levo a couple of months was 1.8 so it went from 3.2 to 1.8 to 1.1. The only thing is that this test was done in the afternoon so potentially if it'd be done in the morning, it might have been closer to 1.8 like November.
I have a cardiology appointment tomorrow morning actually but they are fkkking useless so I don't expect much help from them.
I take my meds around 2am so I took it at 2am then had the bloods done at 5pm so 15 hours later
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What do I do next? Is this T3 results low?
On T4/T3, planning to have a baby, is this safe?
Latest blood results 
Is it dangerous to just stop taking Levo?
T3 makes me very Sleepy :( What can it be?
