Does anyone know what happens if you just decided to stop taking Levothyroxine apparently once its under-active it never repairs itself?

[truely73]

[bantam12]

If you are underactive and need replacement then stopping it would in time make you more unwell. You cannot function without some form of replacement.

[truely73]

Thanks hen, It's just so depressing taking the pills, that don't seem to make you any better than you were without them. I was just wondering if not taking any medication for it could lead to cancer of the thyroid or nodules or this only in severe cases? What's your experiences?

[RedApple Administrator]

For most people diagnosed with hypothyroidism, the replacement thyroid medication will be needed for the rest of their lives. This is going to be the case where the cause is for example, congenital, autoimmune thyroid disease or removal of the thyroid gland. If the cause of the hypothyroidism is 'idiopathic' (i.e. unknown), it is possible that the gland can improve it's production so that the patient no longer needs to take medication. This only happens in a small percentage of patients though.

Thyroid hormone replacement is considered to be a 'life sustaining medication'. In the worst case scenario, the consequence of not taking the replacement thyroid hormone that your body and brain require to function properly can result in Myxoedema Coma. More info on this here:

patient.co.uk/doctor/Myxoed...

[truely73 in reply to RedApple]

Thank you so much for your reply RedApple. My understanding is that my Thyroid went underactive as a result of me having Hyperthyrodism 10 years ago and once the thyroid goes overactive it damages the gland and will result in it going underactive in the future. I have been underactive for 2 years now and would really like to be back to being me again, I've got lost under it all and it almost feels consuming trying to work your way through all the information on the subject. Is there light at the end of tunnel, do you people get settled on this life long medication and feel better or will it always be swings and roundabouts??

[RedApple Administrator in reply to truely73]

As you were originally diagnosed with hyperthyroidism, it's likely that you have autoimmune thyroid disease, and hence will always need to take thyroid medication.

Many of us here have struggled as you are now, trying to get our 'old selves' back. And yes, it is consuming trying to work your way through, especially considering it's at a time when you feel so unwell. We should not have to do all this work for ourselves, but sadly, our doctors so often know little more than us, and we are left to find our own way.

Thankfully, we have this amazing support group where we can all rally round and help each other Shaws has made some good suggestions in her post below.

[truely73 in reply to RedApple]

Thanks, good to know there's someone on my side x

[shaws Administrator]

I understand the seemingly pointless taking of a pill which seems not to make any improvement in your health or even gives you more symptoms than you had before.

Do you have a copy of your latest thyroid gland blood test results (you can get a copy from the surgery) with the ranges and post on a new question. You could be undermedicated or maybe your GP could add some T3. It did help me. If you haven't had a vitamin B12, Vitamin D, iron, ferritin and folate ask for these to be done as the first two are usually deficient.

[Heloise]

Hi truely, I don't know if it's possible when you have been ill for a long time....there is probably a limit when it's no longer possible. When I was young and had pregnancies, I think your thyroid can malfunction in those circumstances and can return. I think many doctors believe you can restore good function when immunity is improved. I've been posting videos by a functional medicine doctor, there are 22 five-minute videos covering many of the causes of low thyroid and if you can define where you fall short, I think you can certainly improve your health. I believe your body CAN heal but the medical system is set up for disease control and has little interest in helping you do that.

youtube.com/watch?v=2xm60Lb...(Not working as expected?)

[truely73]

Hi Shaws, Thank you for your response. I asked the doctor about taking supplements and he said Vitamin D was the only 1 worth taking as all the others do not get absorbed into your system and just goes down the toilet. I don't know what all this T3 or T4 business is that everyone keeps talking about and I have never had my blood test results given to me, I am just told that the levels are fine and see you again in a year. I do suffer with abit of anemia especially after having the children, but I don't know if they tested for that, I don't think they will give me another blood test anytime soon as I really had to persist to get the last one done. Vicki

[truely73]

Hi Heloise, Thank you for your response. I will definately have a look at the videos and see if they can help, I have never heard of this before. I had an overactive thyroid after my 2nd pregnancy as I lost a lot of blood through a C Section and apparently it can be a trauma for the body so it goes into overdrive to compensate, that was 12 yrs ago (and no more children) and I was diagnosed with an underactive thyroid 2 yrs ago. Vicki

[Vivante]

I was told I would have to take them for the rest of my life.

[moorec1064]

I dont about that kind but my sister has been on Thyroid meds for a looong time now Drs here wont give her the same amount shes been on and she is very ill. Muscles hurt, back hurts, eyes hurt and water, ocular migraines, Terrible swelling all over her body. No energy, mood swings etc. They see this and still play with her perscription even when everything was going good on her tests. Dont understand how they can do that to a person. So sad and wrong.