I cant tolerate Levothyroxine: Hi I started... - Thyroid UK

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I cant tolerate Levothyroxine

phronsias profile image
13 Replies

Hi

I started taking Levothyroxine when I was first diagnosed April 2014, I was taking 75 mg , I started to have severe chest pains, mostly at night but would last for easily 10 days at a time. I vomited, felt very shaky, hands trembled and in the end I felt Levothyroxine was poisoning me. I went to my GP, whom I had been telling from the beginning that I had problems with the Levothyroxine. He prescribed Liothyronine. My health improved almost immediately and for 5-6months I had no real issues. Then I started to gain weight again, palpitations, feeling exhausted, increased sleeping and waking with a sense of a hangover. I saw my endocrinologist and we agreed I should resume taking Levothyroxine, half a 25mg tablet, as I may be allergic or intolerant to Levothyroxine. I've took them for 2 weeks. I started to have vomit reflux and chest pains, severe at times, so I contacted my GP and endocrinologist and was told to stop taking them. I've been left in no-mans-land. I won't see my endo until 17th July. She has told me point blank she will not prescribe a natural form of T4. My last lab test results are Free T3 level - 4.6 pmol/L Free T4 level - 8 pmol/L TSH level - 7.07 mu/L.

Can anyone tell me what is the best course of action please.

Francis

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Clutter profile image
Clutter

Welcome to the forum, Phronsias.

Do you have the lab ref ranges for FT4 and FT3 (figures in brackets after your results)? FT3 looks reasonably good but that's a guess without the ref range.

How much T3 are you taking? TSH 7.07 is too high. Your endo should have increased your T3 dose. I'm not sure why anyone would think a piddling 12.5mcg Levothyroxine would improve anything. If you threw up shortly after taking Levothyroxine and T3 you may have lost the T3 before it was absorbed.

If you don't tolerate Levothyroxine you might have problems with the thyroxine in NDT. Because it isn't licensed for use in the UK most NHS doctors won't prescribe it. Most members using NDT buy it on the internet and self medicate. Some are able to persuade their GPs or endos to monitor them even though they won't prescribe.

phronsias profile image
phronsias in reply to Clutter

Hi thanks for your reply.

lab ref ranges are...

FT4 9.0 - 19.0

FT3 2.60 - 5.70

I take 10mg of T3 in the morning.

I was told to increase to 20mg of T3 after 7 days, but I had severe diarrhoea, was told to reduce to 10mg for 2 days and increase to 20mg, this time I woke up vomiting, so was told to stick to 10 mg.

Regards

Frank

Clutter profile image
Clutter in reply to phronsias

Frank, FT3 is surprisingly good but TSH is high so you need more Liothyronine. Get a pillcutter from a high street pharmacy or use a fine bladed craft knife to quarter the tablets. Try an extra 5mcg about 6 hours after the first dose. If you tolerate it well, add another 5 mcg after a week or two. If 5mcg is too much initially crush the 5mcg quarter and divide it into 2 x 2.5mcg doses and build up from there.

phronsias profile image
phronsias in reply to Clutter

Thanks

I'll give that a try now. One other thing, on the end of my blood results printout it says "notes; high risk drug monitoring" I don't understand this, any thoughts?

Regards

Frank

Clutter profile image
Clutter in reply to phronsias

Frank, Possibly because of the adverse reactions you've had? No idea really. Ask your GP at your next appointment.

phronsias profile image
phronsias in reply to Clutter

Hi

I took an extra 5 mcg yesterday and the day before, I felt rotten when I woke up this morning, so I haven't taken the extra 5mcg, on the bright side I've lost nearly 1 kg. I'll see how I feel tomorrow.

All the best

Frank

Clutter profile image
Clutter in reply to phronsias

Frank, go back to your previous dose for a week or two and then increase by 2.5mcg. 1kg loss in 2 days isn't good, it means you are overstimulated and that's what is making you feel rotten.

phronsias profile image
phronsias in reply to Clutter

Will do, thanks

Parbrook profile image
Parbrook

You could try a different brand of Levothyroxine as you may have an allergic reaction to the brand that you were taking.

Different brands have different fillers and binders.

phronsias profile image
phronsias in reply to Parbrook

Hi thanks for your reply.

I have tried a different brand of Levothyroxine. It gets to the stage when I cant bring myself to put the pill in my mouth.

Regards

Francis

Phronsias,

Have you tried the lactose free Levothyroxine?

You may find it has such an entirely different make up, that you can tolerate it.

If it is the actual thyroxine that you can't tolerate than obviously this wouldn't work either.

flower007

Clutter profile image
Clutter in reply to

Flower, levothyroxine injections won't contain the fillers contained in tablets. I suspect Phronsias is intolerant to thyroxine as she didn't tolerate NDT either.

phronsias profile image
phronsias in reply to Clutter

Hi guys

I should have said that I'm a man. I haven't tried NDT but would like to. I will ask about lactose free Levothyroxine.

Regards

Francis

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