I had a telephone consultation with an endo last week. He seemed knowledgeable on the thyroid and is trying to help me sort out my problems. He said that he thought I had liothyronine toxicity. I've never heard of this. He asked that I have a lot of blood tests, which I'm waiting for the results. So far, I have only one result - my potassium is above range. This is the third time this has happened. The two previous times, it's been normal at the retest. Should I be worried about this? I've googled it and I don't eat any of the high potassium foods except one banana a day.
He believes the tests will all come back normal. He wants to rule out all possible causes of my symptoms. He's also asked my gp to arrange a scan of my thyroid as I think this is very swollen.
I did ask if this could cause intermittent problems. He thinks it can. I've been really unwell since mid June. Then four or five days ago I started to feel a lot better. After weeks of lethargy and just sitting watching tv, I'm active again. My heart rate is still too high and I am very tired so I can't do anything for very long but I am now doing things. I've no idea why as I started to feel a lot better before starting the propranolol that he said I should take. This is usual for me. I have weeks of feeling really ill then quite suddenly I feel better. I think this is hashi's.
The consultant thought that the fact that I have been taking some of my liothyronine last thing at night has compounded the problem. He said liothyronine is not absorbed overnight. He told me the cause of liothyronine toxicity is an absence of eostrogen. I'm of a certain age!! Apparently most women lose most of their eostrogen during the menopause but a small number like me lose it all and that causes the problem. He said he needs to research the treatment once he's certain that is my problem. It's a bit ironic as I had absolutely no problems with the menopaus.
I wondered if anyone has come across this or at least heard of it. He did say it is extremely rare, hence him not being certain of the treatment.
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dizzy864
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Hi SlowDragon, I m prescribed 60 mcg liothyronin. Plus 125 mcg Levo
The consultant told me to reduce Levo to 30 mcg until at least the blood draw in 5 days. He wanted to know affect that had on bloods. After 4 days I was really hypo but I did last until the draw. Immediately after I went up to 40 mcg a day. That was last Wednesday. I have been really tired but I m not sleeping well probably due to the propranolol. Today I am feeling a little hypo. I m hoping to get most of the blood results on Monday when I have my repeat potassium draw.
I was not told propranolol affects thyroid meds, I was told it was to stop my severe headaches. They were getting better before I started taking it. I m to take 10mcg three times a day for 7 days. If I still have headaches I m to double that. I am really worried about taking it as I react badly to every thing. I ve had serious extreme reactions in the past.
What is it meant to be good for? I ve taken so many drugs in the past and had problems with them. Almost all of them were completely unnecessary as it was for wrong diagnosis!!!
I think I must be missing something! I m on T 3 for poor conversion. It makes no sense to take a drug that further affects conversion. I m seriously thinking about stopping it as it doesn’t sound like it can just be stopped in 4 weeks as I was told. I d already read you need to wean off it, which worried me.
I found it extremely difficult to ween off...was on 4 x 10mg per day ....took roughly 6 months to ween off...max I could reduce was 5mg per day.....wait 2-3 weeks, then reduce again. Last 5mg by far hardest. Reduced to 2.5mg. Then stopped completely one day per week. Next week stopped 2 days a week (not consecutive) etc etc
Propranolol is often prescribed for hyperthyroid patients, obviously you are taking a massive amount of thyroid hormones, so it could help ween levels downwards.
I did find propranolol extremely helpful in early days on levothyroxine, I was unable to tolerate getting dose high enough, propranolol enabled dose to increase to 125mcg ....without it I could get levothyroxine over 75mcg (probably due to adrenal issues) .....undiagnosed severe gluten intolerance and dire vitamin levels, meant I was however then stuck on propranolol 19 years....until joined this forum here, saw just how common hidden gluten intolerance is with Hashimoto’s. Got full testing done privately, as recommended here, including vitamins. Going gluten free was astonishing improvement. Spent following year after going GF improving low vitamin levels before small dose T3 added.
I m going to stop taking it. It’s making me feel odd - hard to describe but odd. I m struggling to sleep so getting very tired. It’s also really upset my tummy and it’s hard for me to not eat constantly as I m so hungry. That’s after only 3 days.
Also I was getting better before I started on it. I want to see how I get on without anything other than thyroid meds.
Thanks again for your help. It’s really appreciated.
look at the graph of T3 output in healthy people. The body naturally produces more T3 at night (10pm - 10am) than it does during the day. During the night when people are asleep the body does a lot of its "normal maintenance and repair". And to do that it needs T3.
It is possible that he is talking about absorption from the point of view that the gut slows down at night. But I doubt it stops altogether. I have occasionally gone to bed having eaten a sandwich late at night. There is no evidence from my point of view that it is still in my stomach by the time I wake up.
I'm assuming that by "liothyronine toxicity" your endo is using bigger than necessary words to say that he thinks your T3 level is too high and he wants to reduce your prescription (or he wants you to reduce how much you take if it is under your control). Why doesn't he get your Free T3 tested if he thinks you're taking too much?
Many, many endos don't like T3 despite it being the active thyroid hormone. But this endo sounds like he's using waffle to get you to do what he's comfortable with, which means he wants you to take Levo only.
...
Then four or five days ago I started to feel a lot better. After weeks of lethargy and just sitting watching tv, I'm active again. My heart rate is still too high and I am very tired so I can't do anything for very long but I am now doing things.
my potassium is above range.
It's possible that your fast heart rate could be caused by your potassium being too high. Do you avoid salt in your diet? You need a good balance between your potassium levels and your sodium levels. The body needs salt and taking too little or none at all can cause all sorts of unpleasant symptoms. See this post from another member on the subject :
Another possible cause of your sudden burst of feeling better is that you have Hashimoto's Thyroiditis (aka Hashi's) and you suddenly have higher levels of thyroid hormone in your body. Fluctuations in thyroid hormone levels as a result of Hashi's are common.
I m not convinced by what he said either. He s not so far saying I am taking too much T3. He told me I would need to increase after bloods and emailed my doctor when I told him I needed to. I am really happy that he s asked for me to have a scan. I m much more interested in that than anything he said. My doctor refused my request for a scan over a year ago. It’s also useful to have things eliminated. He really wants to see me to examine me but I ve refused to go to him because of where his surgery is. I m reasonably happy with him but angry it’s had to cost me £250. I should have been able to see an endo on nhs.
I m fairly convinced it’s hashi s. I ve done lots of research. Nothing else seems to fit. I ve told the endo that. He says he ll talk more when other things are eliminated. I was never convinced about toxicity as I can’t see how it would vary how I feel so much. All I can do is wait, but I don’t think there’s a definitive answer till I ve had a scan. I ve no idea how long the wait is for that.
How is your cortisol? I thought high potassium could be linked to adrenal issues and low cortisol (although T3 often raises cortisol and blood sugar) and also to kidney problems. Don't forget that a lot of fruit and veg (even potatoes) are high in potassium.
Thank you for your reply. Adrenals / cortisol are being tested. I eat strawberries and blueberries every day. I am vege so do eat a lot of fruit and veg. It’s impossible to get diet right!!
I had a blood test come back as high in potassium some years ago, my GP rang me and told me to go straight to A&E, the blood test was repeated and it was perfectly normal, the nurse taking the blood suggested that the person doing the BT at my GP surgery had probably done the potassium blood take first and that the syringes used are flushed with potassium and as such the other Vials should be done first to avoid a false potassium reading.
Could that explain your high potassium reading, just a thought if there is no other explanation.
I don’t know. It may be a coincidence but the same nurse has done the last 2 draws. I can’t remember about the first one I had. There s quite a lot of nurses at my surgery.
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