Levothyroxine : After 2 years I have now decided... - Thyroid UK

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Levothyroxine

Johnljc profile image
20 Replies

After 2 years I have now decided to come off my medication altogether .

After having a week off and going back on recently, it made me realise how I'll they were making me .

I have informed my doctor who has spoken to a specialist (currently waiting for appointment to see endo) and they are happy for me to do so .

They have told me to go for monthly blood tests to monitor me whilst I wait to see specialist.

I cant describe how happy I am .

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Johnljc profile image
Johnljc
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20 Replies
Assiya profile image
Assiya

Good for you but I am curious why you not want anymore and why you started them in the first place? I see more ppl just stop. But I read here that if not take jou will slowly die...I do read also so many ppl felt much better with different diet etc.

Do you have hashimoto follow special diet?

Johnljc profile image
Johnljc in reply to Assiya

I'd rather not take a tablet,feel good and be happy....... than take a tablet feel awful and miserable .

shaws profile image
shawsAdministrator

I can quite understand someone stopping their thyroid hormones - particularly if there's no improvement.

However, if you are hypothyroid you could strain everything in your body as it will not have sufficient T3 to saturate all of the T3 receptor cells and the brain and heart contain the most.

Do you have a print-out of your recent results, with the range so that members can advise upon them.

Johnljc profile image
Johnljc in reply to shaws

Serum free t4 level... 14 pmol/L 7.86 - 14.41 pmol/L

Serum tsh level... 5.48 mu/L 0.35 - 5.50 mu/

Next bloods in a month , plus doctor is testing for additional stuff too

Angel_of_the_North profile image
Angel_of_the_North in reply to Johnljc

No FT3 result? That's the most important.

NWA6 profile image
NWA6

Hi Johnljc. I wonder if a bit more info would be helpful to others? Do you have an autoimmune diagnosis? What led to you beginning Levo? What symtoms did you experience with and without medication?

Johnljc profile image
Johnljc in reply to NWA6

With meds .... blurred vision , muscle fatigue, breathlessness, moodswings , throbbing thyroid , no energy, no libido , brain fog , bloating, pressure on my head .... to name a few

My week off medication most of these cleared up .....a week back on all of these returned .

I'm awaiting to see a specialist and my bloods will be tested monthly

To me it's a no brainer coming off

NWA6 profile image
NWA6 in reply to Johnljc

There’s no doubt that some people don’t do well on the normal Levo and it certainly sounds like you’re one of them. I guess I’m just curious and like to know what’s what. Do you have an autoimmune condition? What tests/basis were you offered treatment? I suppose that’s what would concern me. If you have an intolerance to the Levo yes you’ll feel better not ‘poisoning’ yourself on a daily basis but what’s the alternative if there’s still a clinical need?

Marz profile image
Marz

I would re-read your last post/thread where there is so much helpful information.

Vits and Mineral levels ?

Johnljc profile image
Johnljc in reply to Marz

I'm waiting to see a specialist before I want to self diagnose

Marz profile image
Marz in reply to Johnljc

Don't think I mentioned self-diagnosis anywhere !

Johnljc profile image
Johnljc in reply to Marz

Where did I say you mentioned it .... chill chill

There's also the possibility that you were not taking enough.

Also stopping taking Levothyroxine can also make you feel better.It certainly did that for me, but only for a short time before the symptoms return and slowly get worse and worse and you are forced to start taking them again.

Johnljc profile image
Johnljc in reply to

Thays why I'm being monitored with monthly blood tests until I see a specialist

Lora7again profile image
Lora7again

I hope you don't become ill John because untreated thyroid disease can make you bedridden and very depressed. I know this because I was virtually bedridden for over 2 years until I decided to self medicate ..... I had no choice because I had no quality of life.

Johnljc profile image
Johnljc in reply to Lora7again

Only time will tell ..... taking the tablets was putting me in a dark place , and now I have stopped I feel so much happier.

I'm looking forward to what the specialist says , but I never want to take levothyroxine again , I feel like I've lost 2 years being on it

Lora7again profile image
Lora7again in reply to Johnljc

Ok I understand I have been there myself. I would make sure all your vitamins are not too low because when I was first diagnosed my vitamin D was 7 and my Ferritin was also very low and that can impact on your health. If you need any help or advice you can always come here because there are a lot of knowledgeable people on this site.

Johnljc profile image
Johnljc in reply to Lora7again

Folate , b12 etc getting tested next bloods

Assiya profile image
Assiya

What were your complaints before you took levo ? Have you adjust a different lifestyle?

You may feel well for now, but if you can't make enough thyroid hormones, you will eventually become very ill, go "mad" and die, but not for a few years. At least you won't know how ill you are because the brain malfunction will prevent you from understanding what's wrong. Why not consider sourcing your own NDT if you don't get on with levo? The NHS won't care if you die as long as it your decision. so they can't be blamed.

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