Levothyrixine no longer working?: hi everyone... - Thyroid UK

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Levothyrixine no longer working?

1967rosebud profile image
9 Replies

hi everyone. Around 6 months ago I was diagnosed with Hashimotos. My Serum thyroid peroxidase antibody concentration was 173.9 ku/L and my TSH was off kilter. I was prescribed 25mg then increased to 50mg. After a few weeks I felt like a new woman. In the last month I’ve started to feel the same as pre-Levothyroxine if not worse. My skin is bumpy and irritated, I ache all over and can’t sleep well at all. Has anyone else found they go from better to worse again?

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1967rosebud profile image
1967rosebud
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9 Replies
Forestgarden profile image
Forestgarden

It seems to be quite common... you up your dose, feel better, then the body adapts and you feel worse again. I think it means you're ready for a dose increase. But, first get your ft3 and ft4 checked

1967rosebud profile image
1967rosebud in reply toForestgarden

thank you so much for your reply!

SlowDragon profile image
SlowDragonAdministrator

50mcg is only the standard starter dose

Bloods should be retested

Book retest early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Have you had vitamin D, folate, ferritin and B12 tested

What vitamin supplements are you taking

SlowDragon profile image
SlowDragonAdministrator

Read my replies to post above yours

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DippyDame profile image
DippyDame

Fear not....what you have experienced is perfectly normal!!

Your body was grateful to receive the replacement hormone and it's initial reaction was along the lines of "Whoopee that feels great" ...with symptoms resolved.

However this didn't last because your body began to recognise that it needed more, so the symptoms returned... making you think the levo wasn't working. Instead it was a cry for help!!

Your dose will need to be slowly increased until your system has the level of hormond it needs.

We are all different so your dose will related to your specific needs.

An old medic friend used to keep repeating, "Listen to your body it will tell you when it needs help"

Be prepared to be patient, there is no quick cure like paracetamol fo a headache....but there is a cure!

Slow Dragon has explained the testing and dosing protocol....follow that carefully.

A gluten free diet helps many with Hashi's.

If you need help post your test results, ask any questions you may have and members will advise....here, we're all on a similar journey.

Hang on in there...you're not going to feel rubbish for ever!!

Take care.

ICE187 profile image
ICE187

I felt worse before feeling better with each dose increase until I got to the "in range" level of tsh. I'm not 100% better yet, but much better than before I started levothyroxine. It's a roller coaster ride.

am111 profile image
am111

Your thyroid could have gotten worse over time, so you need more thyroxine now. Also, body adjusts and with a lower TSH, the thyroid will produce less thyroxine over time, so you will have to adjust. Test again and adjust.

PurpleChez profile image
PurpleChez

Hi 1967rosebud,

Unfortunately yes that appears to be the norm. I have Hashimotos and I'm very rarely stable for more than 8months before I need an increase in meds, usually showing shocking symptoms but only a very small change in blood results, which the GP would be happy to ignore!! I'm now on 125mg which for the time being suits me, but I know when I dont feel well and I have the confidence to challenge my GP.

You're on a relatively low dose. Don't be afraid to fight them if they say your bloods are within range. They should be treating the symptoms. You know your body better than anyone.

Good luck!

Lois71 profile image
Lois71

My daughter is being treated for the source of Hashimotos, the autoimmune system, she takes 10,000 IU of vitamin D, 400 mg of magnesium citrate, 200 mg of selenium, no gluten, no dairy (because of the casein), as per If his antibodies decrease, the levo dose will also be reduced. she has his second appointment on January 12th. She usually sees her endo through WhatsApp since he is in another country.

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