Levothyroxibe ...Thyroid medication

[Lily288]

Hello everyone. Have been away for a bit never left. lol Can any one tell me if you have been able to get off thyroid replacement therapy. Totally? I was prescribed a 100mcg dosage levothyroxine years ago for hypothyroidism. I have had to cut it down to half and all went well. And not long ago, to only a quarter of the dosage ie., .25 mcg and all is ok. I need to tell that I have been on a better diet and exercising. I’m aiming to throw this Levo out the window. I’d like to know if this happened to any of you. Thank you

[waveylines]

I have to say no it hasn't.....I feel terrible if I try to reduce my dose. As you've done halved the dose, have you checked your bloods for TSH, FT4 & FT3 levels. People can feel fine for quite a while but then become very ill. So I'd check your levels

[Lalatoot]

When you stop levo or cut your dose to 25mcg or less - I know because I have that T-shirt - you feel great for months and months. But then reality hits, or it did for me, and I became very ill.Success for you may depend on the reason for your hypothyroidism. If it is autoimmune then your thyroid will already be damaged and may not be able to produce enough hormones whatever you do.

Just watch for retention of fluid and a puffy looking face, maybe a little anxiety that you have no reason for, a bit of staggering. And maybe test your hormone levels occasionally. I wouldn't want you to go down the same route that I did.

[greygoose]

Last time you posted, you had a TSH of 9, I think. So, that is telling you that no way can you come off your levo. You cannot live without thyroid hormone, and no diet changes or exercises will change that.

Did you ever find out if you have Hashi's?

When did you have your last blood test? Did you get a copy of the results?

[Lily288 in reply to greygoose]

Hi Greygoose. Sorry it’s taking me so long to reply. Yes, it’s been awhile since I posted. I somehow lost the website . But to get back to my TSH being 9, yes, this was a long time ago. I can’t remember that it was the result of a bunch of bad happenings in my life causing stress. Concerning my last doctors appointment., my doctor seemed only concerned with the status quo than my well being although kind of nice about it. I’m not on any low calorie diet, never was on any diet but I eat healthy foods also called organic and I exercise mostly walking .. In the span of almost 40 years since I first began to take Kevi starting at 209mcg decreased to .50 mcg and now about .25mcg, I may have had a couple of episodes where one could call Hashis according to its symptoms, so no it was never established as such. I have plenty of energy, mostly sleep well . What I was most concerned about now, was to see if anyone on the healthunlocked list had been successful in quitting the Levo altogether. Thanks much

[tattybogle]

so it was about 6 years ago that you felt overmedicated and reduced from 100mcg to 50mcg where you felt better again (with a bit of an experiment of 25mcg, then 30mcg before you settled on 50mcg) so you were on 100mcg for 20 yrs, then 50mcg for 6 years.... is that about right ?

then 'very recently' you tried reducing to just 25mcg .... how recently ?

Presumably you've had some blood tests during these 6 years ? If we had some Blood test results to look at it would be much easier to find an explanation for why you might be needing less.

ie . have you ever had a thyroid scan ?.. do you have any nodules that might be producing a bit of T4 ?

Did you ever find out if you have 'autoimmune' hypothyroidism (hashimoto's) ... or whether there was another cause for your initial treatment with Levo ?

What prompted you to reduce to 25mcg recently .. did you feel overmedicated again ?

i would be cautious ... just because you have been ok on 50mcg .. i don't think it follows that you would be ok with less or none at all .

Some people do find they become overmedicated on a dose they had been fine on for many years previously , (as they get older or something changes eg menopause)... for most people it is just a small reduction they need ... i used too take 150mcg for 17 yrs .. now after menopause i only need 112.5mcg.

But i still expect to need it for life....because i know i have autoimmune disease attacked my thyroid .

Your reduction from 100 to 50mcg is unusual.... but you've apparently been well on the lower dose.. which is why it would be very interesting to see blood results history over this time.

[Lulu2607]

Hi Lily. I agree with what's been said here. None of us want to be hypothyroid but I assume it's a bit of a one way street, unless the reason for your hypo state was temporary for some reason? There are of course a lot of things you can do to improve your health generally, but they won't get you off the thyroid medication completely. If anyone has miracously 'cured' themselves I imagine they probably won't be using this forum! They may also have got very rich from the sale of their book on how to do it!

[Lily288 in reply to Lulu2607]

Can you explain further why you might think that I’m looking for a a miracle when in fact I’ve stated that I’ve been exercising and have changed my eating habit... I will however add that I have been learning how to live worrying less or stressing out for naught; trusting in God my Saviour which I believe is a huge factor in our or any illnesses. So yes, you can be healed of any but it takes doing our part.

Thanks so much for your input. I á appreciate all concept.

[Jazzw]

I guess it’s not impossible Lily—there are a number of people out there on that little old wide world web who are adamant that you can kick the levothyroxine (although it often seems to involve buying a lot of other supplements (from them!) to take instead, or embarking on a joy-free diet… ).

Being slightly more serious… I think it can depend on why you ended up on thyroid hormone replacement in the first place. If it wasn’t autoimmune in origin then you may still have the makings of a decent thyroid working in your neck—it could have been a temporary issue when you were diagnosed.

I think the warnings you’re seeing here are valid though—I think it’s rare to be able to completely stop (and stop forever). You’ve been managing on a lowish dose for a while after all, which would suggest your own thyroid is taking up the slack. But if your TSH is still around 9-ish, that taking up the slack is coming at a cost—your pituitary gland is literally having to scream at your thyroid to make enough thyroid hormone. That’s why folk are mentioning that too—in someone with normal thyroid function the pituitary can ask much more nicely maybe by politely raising your TSH to something between 1.5 and 2. Not 9…

I think many of us have tried, many have failed. But if you go into this knowing what to look out for then at least you’re equipped for the journey. You might be ok… at least for a while.

[Lily288 in reply to Jazzw]

Hi jazzw Thank you so much for your entertaining and very informative reply... You gave me a lot to think about... good leads for my own research but I’ll still appreciate your input. I may surely be able to get me little ‘ole body to go 100% smooth... Aging doesn’t help but I’m feeling pretty good still.... no running out of gas. “buy electric” lol

Just to tell, my TSH is unavailable at the moment because my last doctor’s appointment I was given the same prescription Levo 100mcg. I cut it in half ir quarter pieces depending on how my hair is doing. If my hair and eye brows looking yucky or kind of falling out, I cut back on the Levo.

I’m planning on having my blood tested soon I can.

I’m thinking it’s better than 9-ish.

Thanks again so much.

It is very much appreciated. 😊

[Jazzw in reply to Lily288]

I wish you all the best with it—let us know how it goes.

Just one last thing though (call me Columbo 🙂)… if your hair and eyebrows are falling out, that could well be because of not enough levothyroxine rather than too much.

But you’re almost at the point of taking none at all by the sound of things. I suspect you’ll know quite quickly whether this is going to work for you. I genuinely hope it does—but if it doesn’t, you’ll be in good company if you decide to come back here for assistance—I promise there’ll be no “I told you so” from me. As I said before, many of us have tried it—but sadly it didn’t quite go as hoped for most of us. Good luck!

[Sparklingsunshine]

Hi

If you've lost weight via diet and exercise that might explain why you're doing better on less.

[greygoose in reply to Sparklingsunshine]

But, with a TSH of over 9, she isn't doing better at all.

[Sparklingsunshine in reply to greygoose]

If that's still her current TSH then no. However high TSH doesn't always translate into symptoms.

[greygoose in reply to Sparklingsunshine]

If it is, yes. I asked, but no reply. And, true that TSH dosn't always translate into symptoms, but that's irrelevant. If her TSH is still that high - as I don't see why it would have come down as she's reduced her levo even further since then - it means she is very hypo, and therefore not 'doing better' in any way. But, of course, without the actual numbers, we can't know anything about it.

[Lily288 in reply to greygoose]

Hi Greygoose. Please refer to my first Troy to you. I explain about the TSH. This is not what my question was about. I was interested to find out if anyone had ever reduced their Levothyroxine intake down to nothing at all. Thank you

[greygoose in reply to Lily288]

Yes, I know what your question was.

Sorry, I somehow missed your reply above.

So, your question was purely accademic? I have never heard of anyone successfully coming off levo for good. I've read many people on forums claiming to have cured their hypothyroidism by this or that method. But, sooner or later, they are back on the forum asking for more advice.

Thing is, if one has Hashi's, on the way down from a Hashi's 'hyper' swing, one can sometimes have a period of euthyroidism. It can sometimes last years. And, this is when people think they have cured it. The come of their levo, etc. and feel fine. But, it doesn't last. Sooner or later, they are obliged to go back onto whatever it was they were taking. I've done it myself. But, now I'm back on my T3 only.

Of course, there are other reasons for being hypo. And, it's possible that if you were able to pinpoint the cause and correct it, you could come off thyroid hormone replacement because the thyroid isn't damaged. But, it's pinpointing the root cause that is the problem. No-one knows how to do that, for the most part. And, to be honest, nobody cares. Apart from those suffering from hypothyroidism, that is.

Why won't your doctors test your antibodies? Or give you an ultrasound, at the very least. Then you would know.

[Lily288 in reply to greygoose]

To greygoode... No, my question was not purely academic... for academic I could have looked it up at a library or any book but I thought I’d ask the group here .. I don’t think I ever said I had Hashi, but that I suffered what we believed was a couple of episode of thyroiditis. I’ve been reading up on the pituitary gland and how it is the gland that tells the other glands what to do. Jazzw explained this to me in a reply to me.

The reason I was given Levothyroxine at the very big inning of my thyroid problem was because I had been gaining weight. I sometimes felt dizzy n had weak spells at times. My doctor wanted to prescribed cholesterol pills but I refused because I knew those were dangerous pills. I read about it I a book on cholesterol later and in the book it referred to potential thyroid problem. I mentioned this to my doctor and she finally agreed this prescribed the 100mcg Levothyroxine ... At the time, I thought this a high dosage but she said no and I took it. I believe it helped my problem and I continued taking it as such. And I think you now know how or that this dosage became too much or too high because my problem seemed to have turned or switched or kind of became like a hyperthyroidism problem instead of my initial problem of hypothyroidism.

And from that time on, I kept reducing my dosage down to the .25mcg I’m on now. And this seems to be doing it for me.

I just want to add that in these years, I’ve not had not even one fast food meal nor any junk foods but rather just plain better meals along with exercise.. and by exercises I mean, mostly walking. Walking my dog two to three times a day plus walks in park trails etc. No diet. None whatever. I just eat well and I eat lots. This last 3 words was to emphasis that I’m on no crazy diet. lol. And just to tell, I haven’t a clue as to what my TSH is. It was or I was told it was 9 a few years back but don’t know now. This doesn’t matter to me and maybe this is because I feel well, but to I don’t wonder about it. Like my age, it’s just a number. To me, 50 years ago was only yesterday.

I think this about sums up my thyroid history. I was hoping someone had mastered the whole thing down to no need for thyroid replacement therapy, we can still hope as I think all ailments can be cured

Hope this helps somebody

.

Thank you. 😊

[greygoose in reply to Lily288]

Well, to sum up, if anyone had mastered the whole thing down to no need for thyroid hormone replacement, it's very unlikely they would still be on this forum.

I think many diseases can be cured, but you cannot replace a dead thyroid, and the thyroid cannot regenerate. From all you've said, it does sound as if you have Hashi's - and that is usually what doctors mean by 'thyroiditis'. But, I didn't say you had it, I said if one has it, by way of explaining why some people think they've cured it.

As for fast food... I don't think I mentioned that at all. I'm not someone who believes food is at the root of everything. Hypothyroidism can happen to anyone, no matter how good their diet. And I don't believe a good diet can cure it, either. Sometimes we just have to accept that bad things happen to good people, in a random way, and that's pretty much all there is too it.

[Lily288 in reply to greygoose]

Hi Greygoose. Sorry for long wait but I like to do a bit of study before replying

Just to review, fast food was mentioned only because I used to eat it once in a while and I’d say once in a while is never good. lol. But one thing I failed to mention in my follow up reply earlier, is that my thyroid problem never truly began as a thyroid problem. I think this is important for the group to know. For me, it began with my having gained weight and an important symptom I failed to mention is that I had a pain in my right side. And today, I know that most doctors will want to surgically remove your gallbladder sooner than later. But here’s the thing, a good diet with less fats or any fast foods n exercises i know can be the solution to not having doctors cut you up for nothing if this diet and exercise is followed.. If this regimen is followed, you one can feel better in less than a year.

But here’s the problem.

Since our discussions in the group here with you and the other members who replied to my initial question, I’ve come to the conclusion that levothyroxine is the culprit that has ruin or perhaps completely my thyroid gland. A problem I did not have in the first place? The reason I said this is that my experience speaks for itself. If only my doctor would have told me to change my eating habit and prescribed exercises also instead of pushing their danged pills on us.. on me.. life could almost be so much better now!! I have to add that it’s partly my fault.. But then again, the book on cholesterol did make its push for levothyroxine . Fact is, it was prescribed to me and I took it to be better than taking medication for lowering cholesterol. This is all something I wish I could reverse. One huge thing to know is that those levothyroxine have some not so good side effects like problems with your eyes. Yes, I’ve been diagnosed with a serious eye problem.

Thank you 🙏

[greygoose in reply to Lily288]

Well, I disagree with just about everything you've said above, but I don't suppose you want me to go into detail, because you've obviously made your mind up. So, I won't. Good luck for the future.

[jrbarnes]

After reading that eating too few calories can reduce active thyroid hormone up to 60% it makes me wonder if some forms of thyroid function aren't due to undereating/poor diet. In my 20s I worked on the Hawaiian islands and adopted a new lifestyle where I walked several miles a day and was regularly eating good foods. Any trace of hypo disappeared and I thrived. As soon as I left that environment and came back to my home town I had an adenoma growth on my thyroid gland a year later. I absolutely believe that eating properly and getting enough proteins and carbs as well as regular physical activity can restore proper thyroid function. Sometimes I wonder if more women have thyroid dysfunction due to how much emphasis is placed on dieting to keep thin whereas on the other hand boys are told to eat more so they can be big and strong. It's just food for thought but it sounds like what you're doing is helping your thyroid function better. I recently increased my calories by eating more proteins and carbs and within a week had a drastic increase in my Free and Total T3 numbers but on a lower dose of Levo. I know there's different causes for hypo and different levels of the disease. I was on 88mcg and my extremely tall and large ex boyfriend was only on 50mcg. Perhaps what you're doing is increasing your FT3. Take care!

[Jazzw in reply to jrbarnes]

Absolutely! I’ve come to that conclusion myself—I think I permanently messed up my T3 production (well, ability to effectively convert T4 to T3) by doing very restricted diets right from early teens.

[jrbarnes in reply to Jazzw]

I've only realized this at 42! There were many clues along the way since childhood. My low calorie diet is due to having a mother and aunt who both eat like little birds.

[Jazzw in reply to jrbarnes]

Mine was due to having a mother who struggled to control her weight who was desperate not to have a fat daughter.

It’s kind of ironic that putting me on a strict diet so young had almost entirely the opposite effect. A low fat diet too.

It was only when I tried a low carb diet in my 30s that my breasts finally grew to the same D cups both my mother and sister have—all while my waist and thighs reduced. I realised then that the high carb low fat diet I’d been told would keep me slim (it never did!) had hugely impacted my body shape (and ruined my metabolism).

When I can stick to a lower carb diet I do rather well. It’s just that the carbs eventually find me…

[jrbarnes in reply to Jazzw]

Those low calorie diets destroy the metabolism and wreck hormones. I had part of my thyroid back in 2007 which resulted in the disappearance of my appetite, just to add to the problem. A few months ago I started tracking my calories daily and realized I was eating under 1000 calories but because I have no appetite I couldn't tell that it wasn't eating enough so now I log my calories daily. I've been trying to get at least 1800 calories so that's 225g carbs, 90g protein, and 60g fat. This is like a full time job! For the first time in my life I've put on significant weight and yes in the breasts too!

[greygoose in reply to jrbarnes]

It's well-known that anorexia leads to hypothyroidism, been known for years.