I called 111 at 4 am this morning as I woke to go to the toilet and when I got back into bed had the worst palpitations ( my husband listened to it and confirmed it was very fast )my body starting shaking and felt very unwell, they sent an ambulance who confirmed after 1/2 hour my heart was still too high and took me to hospital, tests done along with thyroid and they said everything was clear and no signs of heart problems, but my TSH was too low 0.05 and to stop my medication for a few weeks , I said NO to that and if he gave me my results I would email to my Endo. My results on 100mcg thyroxine and 12.5 T3 ( split in 2 doses) are T4 -23 (9-23) T3- 6 (3.5-6.5 ) .
I will email them to him but as I’ve not felt that well for a few months do you think reducing back to 0.625 is the best option for now ? As it’s really scared me.
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Simplyred57
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Your FT4 and FT3 could be okay for some people but they may be just a tad too high for you.
There are a few ways of finding out for sure but does require you to cut pills and can take ages. The other difficulty is that you can't know for sure whether you need less T4 or less T3 (or both) and so trial and error has to be used - and doses of T4 and T3 shouldn't be changed at the same time, because then you wouldn't know which reduction was helping.
It's vital to keep good records of symptoms and doses while you are trying to find your optimal dose.
1) Stop your Levo completely (but keep taking the T3) just for a day or two or three or however long it takes for you to feel the tiniest little bit hypo. As soon as you get the first warning signals about being hypo, start your Levo again at a lower dose - you may have to cut pills to get the right dose. You could try any of the following :
a) Take 75mcg per day by cutting pills to create this dose
b) Take 50mcg one day and 100mcg the next in an alternating pattern to average out at 75mcg per day
c) Alternate 75mcg and 100mcg per day to average out at 87.5mcg per day
If you still have problems after reducing your Levo then you may have to reduce your T4 further or reduce your T3 - but changing T3 dose must always be done in very small amounts. And changing dose shouldn't be done quickly.
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There are lots of ways of fine tuning a dose of Levo but you'd need the agreement of your doctor to prescribe the appropriate dose of pills - see this article by helvella about how to do it :
It really helps if you can find your own ideal dose of T4 and T3. Many people have found themselves in the situation where their Levo and/or T3 are taken away or their dosage is reduced and they can't get them back when they need them. This is why finding your own optimal dose is best if you can do it.
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One possible cause of your problems is that you may have Hashimoto's Thyroiditis. This is the cause of hypothyroidism in 90% of people with the disease in the UK and throughout many parts of the western world. In other parts of the world the main cause of hypothyroidism is low iodine.
With Hashi's your immune system attacks your thyroid. Cells in the thyroid get damaged and killed off. When this happens the hormones contained within the damaged cells are released into the blood stream. Hormone levels in the blood rise, TSH drops in response, then doctors freak out about you being overdosed and cut your dose. But nobody knows for certain what triggers immune system attacks - they seem to occur for many people very randomly. Eventually the attacks die down for a while, the thyroid hormone levels in your blood stream drop, your TSH rises, and because of the damage to your thyroid you become a little bit more hypo than you were before. If your doctor has cut your dose of thyroid hormones because of the immune system attack then you are in trouble.
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Another possible cause of tachycardia (fast heart rate) is low nutrients. Low iron and ferritin (iron stores) will raise heart rate. Low Vitamin B12 affects the heart too. Folate needs to be at good levels for your body to make use of the B12 you have. Vitamin D needs to be optimal too.
For thyroid hormones to do their job properly people need optimal levels of nutrients. You can either ask your doctor to test them or you can pay for your own finger-prick testing, then post the results on the forum and ask for feedback. You don't need a prescription from a doctor to get hold of supplements - they can easily be bought without one. There are lots of posts about private testing on the forum.
Thank you so much , I supplement with B12 and vitamin B , Vitamin D with K and magnesium on the recommendation from seaside susie, I will have them retested as soon as I can afford it. Don’t think my T4 has been this high ever, even before I started to take T 3, so think I will alternate I have some 50 & 25 thyroxine I can use. Yes Hashimoto is a possibility as grey goose said 20% of sufferers don’t have raised antibodies, and mine came back normal.
Get your iron/ferritin tested if you can. Or post the results if you've already had them tested recently. Low iron definitely affects the heart.
But in your case I think the most likely problem is that you've had or are going through a mild "hyper swing" or you are very, very slightly over-dosed. The last thing you need is to have all your thyroid hormones taken away!
Thank you I will make it a priority , I regularly eat liver and as suggested on the site and managed to raise my ferritin a lot . Probably should go gluten free to see if that helps too .
I think you're right not to just stop taking medication completely for WEEKS (!)
Your blood results actually look pretty good to me TS is suppressed because that's what happens when you take T3 meds. But I can see you're worried and your FT4 is right at the top of the range, so if it were me, I'd reduce the thryoxine a bit - maybe alternate 50 and 100 mcg (assume they're 100 mcg tablets) because I'm not a good enough cutter to cut into 4!
Obviously you weren't prepared for having your thyroid tests done in the early hours of this morning, so how long were the gaps between your last dose of levo, and the last dose of T3, and the blood draw?
And, the blood draw about… 5 am today? That would be find for the FT3. Maybe a little too long for the FT3, so you might possibly have a slightly false low for the FT3, so it might, in reality, be slightly over-range. Which is fine for some people, but maybe too high for you. If I were you, I think I'd reduce my T3 to 6.25 mcg for a while, just to see if it helps. But, I'd do it unofficially, just in case I need to put it back up again later, if the high level did turn out to be a Hashi's 'hyper' swing.
No, leave it as it is for now. You can't drop both at the same time. Your FT4 is not over-range, and if it is Hashi's the cause, it will go down by itself.
That looks a delicious cake. I had similar symptoms to you last year and was admitted to hospital suffering from a thyroid storm. I think you need to reduce your medication and then do a retest. I was also told my heart was ok even though they thought I was having a heart attack. I hope you are feeling ok now x
My niece made the cake and it was delicious 😋 yes it was a scary experience, and will reduce as of tomorrow and hopefully retest in 8 weeks , I’m feeling a lot better thank you 😊
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TS is suppressed because that's what happens when you take T3 meds. But I can see you're worried and your FT4 is right at the top of the range, so if it were me, I'd reduce the thryoxine a bit - maybe alternate 50 and 100 mcg (assume they're 100 mcg tablets) because I'm not a good enough cutter to cut into 4!
Making a complaint against a hospital
Been to hospital today
Scared and confused, at my wits end
Rushed to hospital via ambulance
Hypothyroid - recently diagnosed and scared
