What if I never needed levothyroxine in the first place? Can it be stopped if it shouldn't have been prescribed ?

[Lisac122]

I would love updates on those who have stopped levothyroxine. Two years ago I went to annual pap smear and mentioned I was tired, gaining weight, feeling in a fog. Ob gyn did a blood test. Tsh was 4.21. She said that was elevated and levo would help these symptoms of underactive thyroid. Free t was .9 I was started on the lowest dose possible. Within two weeks I gained 10 pounds. I called Dr who said I was under medicated and increased it to 88 mcg. Next blood test showed 2.70 tsh and free t4 stayed .9. I continued on 88 for a year, gaining 30 pounds, despite eating well and exercising. I was miserable due to weight gain and self esteem. I now am nearly 40 pounds over what I started with before levo and enough is enough. I don't think I ever needed this drug in first place. My symptoms were probably pretty menopausal, although she told me they were related to thyroid. Once I started thyroid medicine, my periods stopped completely. I assumed it was immediate menopause but now I think it is also the levothyroxine that did it. I'm 50, and want to just stop this crazy med that I may not have even needed! Thanks for input from those who stopped, and what did you experience. Vainly, I'm most interested in if anyone lost weight by going off it.

[Clutter]

Lisac122

TSH 2.71 means you are still undermedicated. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

TSH 4.21 at diagnosis confirmed primary hypothyroidism. Many people have stopped Levothyroxine and most seem to feel well for the first couple of weeks but as the thyroxine clears their system they will usually experience hypothyroid symptoms including weight gain and it will take several weeks for symptoms to resolve when they resume taking Levothyroxine.

[Lisac122 in reply to Clutter]

I just can't understand a 40 pound weight gain over just a year. Instinctively and intuitively I feel somehow the levothyroxine itself is causing the weight gain and not the thyroid functions. My initial weight gain and symptoms were not necessarily bad enough to even go to doctor, I just mentioned it at a normal check up. In some studies, a tsh of up to 5 is still considered normal. I can't imagine taking any more of this.

[Clutter in reply to Lisac122]

Lisac122,

TSH 5 - 10 is considered subclinical. If you had no symptoms when you were diagnosed you could have waited until TSH was 10 but most people think it pragmatic to treat when TSH is over range rather than wait until the patient is very unwell with hypothyroid symptoms and weight gain which are then difficult to shift.

thyroiduk.org.uk/tuk/about_...

I don't think Levothyroxine is responsible for your weight gain, I think being undermedicated is why you've gained weight, but if you aren't convinced then stop taking Levothyroxine and see what happens.

[cleo26]

Are you taking medications besides thyroid medications?

[Lisac122 in reply to cleo26]

No, nothing. Othe than a multi vitamin I've taken for ten years with no problems. The only thing that's changed is taking levothyroxine. But thinking it could have been menopause symptoms versus thyroid, and I was put on medicine too quickly?

[cleo26 in reply to Lisac122]

Why did you think it was menopause systems? Just how you were feeling? Did you have any labs drawn to determine if you were peri or in menopause?

I have read of those gaining wait from levothyroxine: restartmed.com/levothyroxin...

[Lisac122 in reply to cleo26]

Would thst be the testosterone total female/child result? Mine was 27 ng/dl . Free female/child is 3.1

[cleo26 in reply to Lisac122]

Do you have ranges? For menopause testing typical labs are estradiol, estrone, progesterone, free and total testosterone, fsh, lh, sometimes shbg and prolactin. You’ll need to know what phase of your cycle, either first days of follicular or immediate post ovulation, luteal.

[Lisac122]

When I went back and did research on menopause it looked like a lot of symptoms were same as sluggish thyroid. I don't know, I am at wits end with this weight, and Dr said I can't stop taking it. I am just wondering if I truly didn't need it in first place, can I stop without doing lots more harm? Tsh was 4.21 when started on it, and I'm seeing that in some studies that's considered normal.

[greygoose in reply to Lisac122]

Yes, of course you can just stop taking it. And, if you do, your thyroid will just go back to doing what it was doing before - i.e. TSH 4.21. Which is hypo. You are hypo as soon as your TSH hits 3. Just because in some countries the TSH range goes up to 5 - I've even seen it as high as 7 - doesn't mean that anybody actually want a TSH of 5. Most of us would feel extremely ill with a TSH of 5. It's the ranges that are wrong. A truly 'normal' TSH - i.e. the TSH of someone with no thyroid problems - is around 1. That is someone who isn't on thyroid hormone replacement. People on thyroid hormone replacement - i.e. people with under-active thyroid - need their TSH a bit lower than that, because they need there FT4/FT3 that bit higher than a euthyroid person.

But, there's no reason why you shouldn't stop your levo, and see what happens. Although, I doubt it will help you lose the weight. Hypo weight-gain is caused by low T3, and you don't even know what your FT3 is. It could be that you have a conversion problem - i.e. the T4 you're taking (levo, storage hormone) just isn't converting into the active hormone T3. So, I really would advise getting your FT3 tested, before you decide to stop the levo. Just to be sure.

[cleo26]

Your numbers would traditionally indicated hypothyroidism symptoms. Perhaps you need a bit of T3 with your T4, and / or suffer other interconnected endocrine issues. There isn't enough information to determine. Please consult the site I provided. As Clutter indicated, you can stop it and see. If you do stop, taper your dosage.

You have not ruled out menopause though. Might want to check on that.

[Lisac122 in reply to cleo26]

And I thank you for your quick and honest replies. I feel better just knowing there are others trying to support me in this!

[Treepie in reply to Lisac122]

Perhaps you should consider private testing e.g. Blue Horizon 's thyroid 11 . This would give a fuller picture.

Medichecks do similar tests and usually have offers on Thursdays.

[Lisac122]

This is a great idea. I'd love to stop and then keep monitoring it to catch it right away