Stopping thyroid medication

[Kerry1971]

I am thinking about weaning myself off my thyroid medication. I'm on 150mg of lethrothyroxine and have been on it for 10 years. I now weigh more than I ever have done and eat healthier than I did before. I would like to see how I cope off the medication as I'm not convinced it is working. When I was diagnosed 10 years ago my TSH was 177.7 so I was very under active. I still managed to work full time and lead a normal life. Has anyone else tried to come off medication? If do how did it work out? I feel like I was doing better before I was diagnosed than I am now taking all the drugs. What are your thoughts?

[thetinlid]

No! never think that you can do that.....your thyroid is the boss of your body, this tiny organ gives messages to your blood pressure, body temperature, appetite and a thousand other things and the most dangerous thing it also does is to mess all your hormones around and CAN cause you to have CANCER of the thyroid if you stop taking it, you will have to take this for the rest of your life. I started my treatment 2001, you must also have regular blood tests for your T3 and T4

[Saggyuk in reply to thetinlid]

Yes, it is hugely unlikely that you can stop your thyroid meds as it's unlikely that you have any function left in it anyway. However, I should add that I halved my thyroid dose by going gluten free and reduced my antibodies and feel massively better so that is worth a try. It does not mean that my thyroid has magically started working as I still show no sign of producing any T4 myself (I'm on T3 only so would be easy to tell). It only means my body can either use the thyroid meds more efficiently so I don't need so much or I am absorbing more of it now stomach issues have resolved also meaning I need less. It was easy to know I needed to reduce my dose as my body told me quite obviously as I became hyper so was quite apparent.

You would be better posting your last thyroid results on here for advice as to whether you are under-medicated. Also it would be worth getting any nutritional deficiencies such as vit B12, Vit D, folate ferritin etc checked and make sure they are optimum.

[Kerry1971 in reply to Saggyuk]

I am already gluten, dairy and soya free because I have STC and had major surgery to have 1/3 of my large bowel removed 22 months ago. My last blood results were

TSH 0.28 (0.35-4.50)

T3 4.6 (3.5-6.5)

I had tests for iron vit d and b12 and all were normal except my b12 was a bit above the normal range. I don't have the actual results.

[RhubarbAndCustard in reply to Saggyuk]

Hello I am really intrigued by going gluten free, I have graves disease. How long have you been gluten free for? And how long was it until you noticed the benefits?

[Kerry1971 in reply to RhubarbAndCustard]

I went gluten free after my bowel surgery 20 months ago. If I eat gluten it blows and blocks my bowel up. If I eat dairy it gives me bloating and the runs. I have STC so the rest of my bowel doesn't work properly by itself so I also take laxido daily. I can't say I have noticed any difference with my thyroid symptoms to be honest. That goes more on if my medication is at the right dose x

[Saggyuk in reply to RhubarbAndCustard]

I've been gluten free for three years now but only fully for just over a year as had a lot of gluten trials over two years to get a diagnosis of non-coeliac gluten intolerance - this was essential as was having difficulties regarding other people taking it seriously with my daughter who was showing the same problems. It completely depends on which symptoms, some start clearing up in a month and others three months, some six months. They tested my thyroid before and after each six week gluten trial and every time was the same pattern with no med changes. Normal tsh, then after six weeks of gluten, it climbs to 30-50 and then takes three months after gluten to go back to normal. SO I would suggest three months to really know for sure. It also has to be 100%, any crumb and I'm still ill. Other things earlier were things like waking up easier and head fog, minor digestive issues and more energy are more quicker but depends on other things. I'm still wrestling lifelong deficiencies such as iron, vit d etc which make it a little more complicated but they are much improved from what they used to be. I can't say it will work for everyone, but you have nothing to lose in trying really so def worth a shot.

[Kerry1971 in reply to Saggyuk]

Yes I have been gluten free for 18 months and dairy and soya free for 5 months.

[Glynisrose]

My first thought would be that once you are taking the thyroxine it is for life and to srop is to give up your life.

[greygoose]

You cannot live without thyroid hormone. End of. Stopping your levo would mean a long, slow death. Horrible death.

If you cannot lose weight, the odds are you cannot convert the T4 (levo) you are taking, to T3. Without adequate T3, you will not lose weight. But, to know that, you need comprehensive labs. I'm guessing that your doctor only tests TSH - at most an FT4. But, you need your FT3 tested, too. Could you possibly get private tests done? If you are a bad converter, there are other things you could take to raise your T3 - levo is NOT the only form of thyroid hormone replacement. Even though doctors like us to think it is.

But, it's not just about hormones. It's also about calories - are you getting enough? Low-calorie diets, in an attempt to lose weight, will have a negative effect on conversion of T4 to T3, and will make you put on more weight.

And, it's about nutrients. Hypos often have low levels of nutrients, which will also impede your efforts to lose weight. So, to start with, you need to get your vit D, vit B12, folate and ferritin tested. If your doctor won't do them, then you could have them done privately.

What you have to remember is that doctors know nothing about thyroid, and have no idea how to best treat patients. It's more than likely that it is your doctor keeping you sick. But the answer is not to just stop your hormone, the answer is to learn as much as you can about your disease, and take charge of your own health.

[Kerry1971 in reply to greygoose]

I am gluten dairy and soya free because I have STC and had 1/3 of my bowel removed 22 months ago. My last blood results were

TSH 0.28 (0.35-4.50)

T3 4.6 (3.5-6.5)

My B12 was above range and vit d and all other results were normal but I don't have the figgers as I got to results over the phone.

[greygoose in reply to Kerry1971]

Well, you really need to get a print out, because there's no such thing as normal. When a doctor says 'normal', he means 'in range', but the ranges are so vast, that it's where in the range you fall that counts. Just 'in range' isn't good enough.

Your FT3 isn't even mid-range, so no wonder you can lose weight. Most people need it up the top of the range to be well. Did you not have an FT4 result? Did you ever have your antibodies tested? Or do you know you have Hashi's? Most Hashi's people are bad converters, so that's probably your problem, too.

[Kerry1971 in reply to greygoose]

Didn't test t4. Yes I do have hashimoto's but only had antibodies tested when first diagnosed 10 years ago. I was never told it was hashimoto's but he said I had an autoimmune disease which was attacking my thyroid making me hypothyroid. I then left with a prescription for lethrothyroxine.

[greygoose in reply to Kerry1971]

Well, that sounds pretty much the way it always is. They either don't know or don't like to tell you, you have Hashi's, for some reason. But very strange they don't test the FT4. Without that, we can't tell how well you're converting.

[elwins]

I agree with grey goose I have been on thyroid medication for the last sixty odd years and alway understood it was for life.

[jamesal0]

Hi Kerry. I tried that and it damages your organs within a few month, your kidney function will start looking bad, white blood cell counts drop, blood pressure and pulse drop. My pulse got down to 45 some days. Bad idea.

Think about a couple of ideas. Reduce you Thryoxin dose so your TSH goes up to 3-4 mark. You may feel better but still be getting enough to live a normal life. Consider a change to NDT or T3/T4 synth combo for 12 months and see if you like it.

[greygoose in reply to jamesal0]

How on earth does having a higher TSH make you feel better? If the TSH goes up, it's because the FT3 does down, and hers is already pretty low.

[Kerry1971 in reply to greygoose]

Yes I thought the lower the TSH the better. Should I add another 25mg to my dose of lethrothyroxine and see if I feel better?

[greygoose in reply to Kerry1971]

I would, if I were you.

[soppysokes in reply to greygoose]

That's what I always thought to go but each time I get tested I always get all done and very often when Tsh is higher my ft3 is higher too. Weird!

[jamesal0]

I know it doesnt make much sense but on thyorixin I run a TSH of about 4-5 and feel very average. As soon as I push the Thyroxin up to try and achieve a better TSH I feel ghastly. Heard ache, yuck tongue, night sweats, twitches, heart pulp, numb peripherals etc. I tried every brand of Thryoxin I could buy in Australia and nothing helped. Anyway I just though it was worth a try. Personally I would bit the bullet and go NDT.

[Kerry1971 in reply to jamesal0]

I have thought about it but don't know how to get it without going private and spending thousands

[humanbean in reply to Kerry1971]

It isn't necessary to spend thousands of pounds.

If you want to buy NDT then write a post asking people to send you a private message with a reliable source. You don't have to involve a doctor, and to use Thai NDT you probably can't (as far as I know).

The cheapest sources for NDT are from Thailand. There are three different brands - Thiroyd, Thyroid-S, and TRMan.

I would suggest starting with the cheapest one, which is Thiroyd, next is Thyroid-S and then TRMan. I haven't bought any NDT for a long time but the last time I saw prices quoted for Thai NDT it varied from about £40 - £100 for 1000 pills. Common doses of NDT might be about 1 - 5 tablets a day, so how long 1000 pills lasts will vary a lot.

[humanbean in reply to Kerry1971]

To get tested without a doctor, see these links :

bluehorizonmedicals.co.uk/T...

bluehorizonmedicals.co.uk/W...

thyroiduk.org.uk/tuk/testin...

[SilverAvocado in reply to jamesal0]

Jamesal0, some people struggle to raise their thyroxine dose. I believe adrenals are usually the culprit, although I don't know much about it. You will find it discussed on the boards quite often.

[jamesal0]

Yes agree

for me 200 x 125 Thyroxin is $25 and take 1 per day

100 x 60 NDT is $120 and I take at least 3 per day.

But Thryoxin makes me feel terrible and NDT gave me most of my pre Hashies life back.

[Kerry1971 in reply to jamesal0]

I'm in the UK so get free prescriptions on the NHS. Just to see a private DR and then have all the tests would probably cost £1000 but would love to give it a try

[glo42]

I am given to understand that thyroid medication is needed for life. I believe it would be

dangerous and cause even more health problems if you stopped taking the tablets... Think very carefully and take notice of others on this brilliant site who are much more knowledgeable that many doctors, most of whom know little or nothing about the complex

workings of the thyroid gland. I hope you will begin to feel better in yourself soon. xx

[Hidden]

Consider just self medicating then but keep stum to your doctor so he still monitors your blood. Or telling him, he may support you if you buy NDT or t3 yourself x

[SilverAvocado]

Hi Kerry 1971, I'm really surprised no one has commented on the blood tests you've mentioned:

TSH 0.28 (0.35-4.50)

T3 4.6 (3.5-6.5)

You're feeling rubbish because you're undermedicated. The freeT3 is the most important if the thyroid panel, as it's the active hormone, and tends to best correlate with symptoms.

The rule of thumb is that you should be in the top third of the range, so for your range higher then 5.5. You are in the bottom half.

So you definitely have room for an increase. You could try 25 or 50mcg, then see if you improve. If things are straightforward, you may need 2 or 3 increases to raise it.

Things may be less straightforward, as you may be converting poorly, many people do. This means to T4 in your Levothyroxine is not getting changed into T3 effectively. So it might be that you have a fairly high freeT4 right now, it's just that its not getting used properly. In that case you will need to try some other things, either taking T3 or you may get improvements by treating other areas. But those are a question for another day, after you've explored just increasing what you've got.

The vitamins and minerals are also worth confirming. Many hypos have deficiencies (or are low enough in NHS ranges to be causing symptoms).

[Kerry1971 in reply to SilverAvocado]

Thanks for this. I am going to put my dose up another 25mg and will also pop into the dr and get a print out of all my other blood results.

[Eddie83]

Not a good idea. You need to find out why hormone T4 is not working - you obviously are not converting to T3. You need to find out if you have Hashi's (and take steps to reduce antibodies), or have nutritional deficiencies, and/or simply need to take supplemental T3 or NDT.

[Wolfiesmom08]

Don't stop your medication. Last year I was convinced my dose was giving me headaches and I cut it in half and several weeks later I was hit with symptoms that felt like I was going to die. Terrible panic attacks, anxiety, severe nausea to the point I could not tolerate eating. Pounding heart and violent shaking. This was all due to my adrenals pumping out adrenaline so I could function. One I read the tired thyroid blog and realized my symptoms were related to severe hypothyroidism I increased my dose but it took weeks to feel human again.

[Mags_23]

What ever you do, please do not just stop it!!! I really don't want to frighten you, but my Mum stopped taking her Thyroxine for 6 weeks (as instructed by her GP as her levels where too high) and we found her in bed one morning having a seizure, she ended up on a Ventilator for 6 weeks and almost didn't make it. So be very careful what you do.