stopping meds: endo was useless wasnt prepared... - Thyroid UK

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stopping meds

mandy72 profile image
14 Replies

endo was useless wasnt prepared for anything, my symptoms are not thyroid because they are not improving on meds so i was told to stop for 3 months until i see him next

can i have some links please of the dangers of stopping meds

looks like ill be buying my own now too

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mandy72 profile image
mandy72
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14 Replies
Clutter profile image
Clutter

Mandy72,

Did your endo have access to your historical thyroid results? I seem to recall that TSH was >13 not too long ago. TSH >10 is overtly hypothyroid. If symptoms aren't relieved by thyroid medication it may be that the medication doesn't suit &/or adrenal function may need testing.

I think it would be helpful to ask for a second opinion before coming off meds.

I'm not aware of any links on the dangers of stopping meds. What will usually happen is FT4 and FT3 will drop and TSH will rise.

mandy72 profile image
mandy72 in reply to Clutter

he had all my notes in front of him and because i was feeling so unwell no matter where my TSH was he said i should stop meds and if things dont improve then he will get dr to investigate and if things get better then its the meds, he wasnt an easy endo to talk to i asked about nature throid and he said he would not put his job on the line to give me that and said there were no other meds he could give me

my cortisol is very high and he said the results were rubbish and not from a trusted place and i dont have cushings as was tested last year so i was to take no notice of the results

ive oordered so iron tests to do myself

looks like ill be going down the self medicating route

he allso said it was safe to stop the meds.......so if thats the case why are we even put on them

just feel so depressed at moment

Clutter profile image
Clutter in reply to mandy72

Mandy72,

We're put on thyroid replacement to raise thyroid levels and relieve symptoms of low thyroid. I have no thyroid and have had to stop taking thyroid meds for up to 4 weeks. It was unpleasant as TSH rose to >100 and took months to recover but isn't actually dangerous as far as I know.

Maybe your endo is trying to see whether T4 and T3 is making your symptoms worse. Patients do have adverse reactions to Levothyroxine and Liothyronine. One would hope that he would consider prescribing liquid thyroxine in case it is the fillers in T4 and T3 which are affecting you.

mandy72 profile image
mandy72 in reply to Clutter

i would rather try the liquid thyroxine on a trial but hes addament i stop

i feel lousy as it is and i know it will get worse

Clutter profile image
Clutter in reply to mandy72

Mandy72,

The last time I stopped taking thyroid medication was because I thought I probably had a build up of thyroxine which was making me unwell. I stopped thyroxine for 8 weeks and substituted T3. Felt no better after 8 weeks on T3 only so I stopped the T3 too. Early in the 3rd week off meds I could feel symptoms clearing and they were gone by the end of the 3rd week. At the endo of the 4th week I resumed Levothyroxine and by the end of the day had severe palpitations and tremors so I knew it wasn't due to a build up then. I added T3 to Levothyroxine and it calmed the adverse effects Levothyroxine only caused.

Clearing a build up of thyroid meds may help but I don't think it's realistic to expect you to do so for 3 months.

mandy72 profile image
mandy72 in reply to Clutter

i really dont know what to do for the best

Clutter profile image
Clutter in reply to mandy72

Mandy72,

Ask for a second opinion?

mandy72 profile image
mandy72 in reply to Clutter

do i call the endocrinology department or through PALS?

Clutter profile image
Clutter in reply to mandy72

Mandy72,

Try the endocrinology dept.

mandy72 profile image
mandy72 in reply to Clutter

ill give them a call monday

greygoose profile image
greygoose

On T3 only, I stopped for six months. Some things, like my breathing, got better off the T3. But, after about 5 months, I noticed I was getting weaker, and putting on a little weight. So, had my TSH tested, and it was about 35/40. I went back onto T3.

mandy72 profile image
mandy72 in reply to greygoose

so how are you now on T3?

ive been saying all along its the meds.levothyroxine and T3, it has to be as i was ok on nature throid last year until my cortisol levels went up

greygoose profile image
greygoose in reply to mandy72

Yes, I'm back on T3. I couldn't tolerate T4 or NDT at all. I'm ok on T3. It wasn't because I was ill on it that I stopped it, it was something non-related.

mandy72 profile image
mandy72 in reply to greygoose

ah right got ya

i think i might stop for a while get the iron results and go from there

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