I've been on thyroid meds (first synthetic for many years, then glandulars) since 1996. Over the past 3 years, as I've researched health/body, and read testimonials of people with hypo/Hashi's, I've very slowly tapered my dose down, with the hopes of someday not needing to rely on it for proper thyroid functioning. I'm down to 1/2 of my original dose, and doing well. Though I've tried several times, I seem to not be able to lower it further, as I start to feel thyroid symptoms within a few days.
Though I know I can always do better with my diet, and helping my adrenal glands, I'm feeling discouraged.
My question is this: Is there anyone out there who is also trying this, and if so, what are/were your experiences? Success? Setbacks?
I'm curious.
Thank you.
Be well.
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JLCC74
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After many years it is very unlikely that your thyroid would be productive enough for you to do without oral thyroid hormones, if it functions at all .I agree with taking the lowest doses we need to be well though
I was on t4 levothyroxine only when I decided to come of oral thyroid hormones. I tapered my dose down for 6 months and then stayed on 25mcg per day for 3 months as I felt great!
By the end of those 3 months anxiety had kicked in, I was feeling and looking very ill. Bloods showed that my TSH was in the thirties, ft4 was bottom of range and ft3 under range. I was very hypo.
It took me over 2 years to recover from that experiment .
Learning from this forum I realised that I needed some t3 added to my levothyroxine. I then spent another 2 years adjusting doses. The minimum my body runs on is 100mcg oral t4 and 7.5mcg oral t3.
Listen to your body. It's like limbo dancing- you can only go so low before you really injure yourself.
Well, sorry to be the brearer of bad tidings, but first of all you should know that the effect levo has on the thyroid is to put it to sleep as the TSH drops. It does not, and is not meant to, make your thyroid function 'properly'. It is thyroid hormone replacement, not thyroid booster. There's no such thing as thyroid booster. Once the gland starts to fail, for whatever reason, there's no going back. Thyroids cannot regenerate and start functioning normally.
Thank you for your responses. I love to hear about them.
I'm aware, that after so many years, I may not be able to get off of the glandular. I've told my thyroid for too many years, that it doesn't have to work. With that, I have read testimonies of people who have healed themselves.
I believe that our bodies are intrinsically made to regenerate and heal itself, sometimes with help. Seems it takes a very clean diet, and some thyroid-strengthening herbs/supps.
I'll continue to listen closely to my body, and to treat it well (something more important today then ever!), and try.
I'd so love to not rely on the pharmaceutical world anymore. Until then, fingers crossed.
Ask yourself if the testimonies you have read are trying to sell you something.
It's profoundly ungrateful to patients who've gone before us and those who continue in the endeavour to dismiss pharmaceuticals -- a few little pills literally keep us alive!
How far would you go in other aspects of self-sufficiency?
Please don't get me wrong, I'm beyond grateful for pharmaceuticals. Where would i be, if I didn't get my initial synthetic T4 that I was on for over a decade? Dead, perhaps.
I also don't fault anyone for being on them. Of course.
I'd just rather not have to take them if I don't have to.
But you do have to, because thyroids do not regenerate - or, at least, not to the point where they can keep you well. And Hashi's completely destroys the thyroid.
And, I really wouldn't call levo/T3/NDT 'pharmaceuticals'. Levo and T3 are synthetic, yes, but the are the exact same as the hormones your thyroid produces. They are not drugs.
I believe that our bodies are intrinsically made to regenerate and heal itself, sometimes with help. Seems it takes a very clean diet, and some thyroid-strengthening herbs/supps.
Our bodies can regenerate and heal some parts of itself. But not all. Not the thyroid. And, even if it could, 'thyroid-strengthening herbs/supps' are likely to have the opposite effect. Be very, very wary of anything that calls itself 'thyroid support'. For 'spport' read 'stimulate', and stimulating a sick gland is never a good idea. Iodine, for example. When you first start taking it, it will probably simulate your thyroid - it doesn't always - and for a while you feel much better. But, this effect doesn't last. And, in excess, iodine is antithyroid. It used to be used to treat hyperthyroidism, before anti-thyroid drugs were invented. And it can cause other ill effect, such as thyroid cancer.
So-called 'thyroid support' supplements are just gloried multi-vits. They are not recommended on here for many, many reasons.
This article was saying how in the old days natural desiccated thyroid was given for hypothyroid and also natural pig insulin for diabetics and over time many could heal themselves, or the natural medication would heal them and they could come off of medication.
Katherine123
It's true that long, long ago, the only form of thyroid hormone replacement was natural desiccated thyroid. But it did not 'heal' the thyroid. It wasn't intended to. It's Thyroid Hormone Replacement. Not a healing drug. So, I would take that article with a huge pinch of salt, and not base my ambitions on it.
The thing with Hashi's is that between a Hashi's 'hyper' swing, and coming back down to hypo again, there can be a period of euthyroidism - sometimes quite a long one - and that is when people think they've 'cured' their Hashi's by whatever means, and they don't need to take thyroid hormone replacement anymore. But, sooner of later, those symptoms will come creeping back. Over the years I've been on thyroid forums, I've seen this so very many times.
Apparently natural might not stop the thyroid or pancreas completely turning off making it's own. The chemical drugs levo and insulin you become dependant because it can stop your thyroid or pancreas producing it's own.
I don't know about the pancreas, but this is not true for the thyroid. Taking synthetic hormones - NOT 'chemical drugs'! - shuts your thyroid down temporarily because it reduces the TSH to below what is needed for your thyroid to function. If you stop the levo/T3, the TSH rises and the thyroid will go back to making as much hormone as it possibly can. And, I speak from experience, here, not some rumour with no foundation. You may not like synthetic hormones, a lot of people don't, but at least get your facts right. And, when it comes to 'natural' (which is not always as natural as all that) vs synthetic, some people do better on synthetic. I know I do. NDT made me very ill, and certainly didn't 'heal' my thyroid.
I hear you greygoose. I always research and read things with an open mind. I also look at where the articles or science papers originated from and who commissioned them. I admit to a bias that out creators made our bodies self healing given the right tools, mainly the environment inside and out, we can heal, as long as something is not too far gone. And I am heavy into the right nutrition, to get all our essential vitamins, minerals and amino acids daily.
I did try NDT and got very ill on it. At the time I did not realise that my adrenals were so shot after being undermedicated on T4 for so long. It looks like my adrenals and nervous system took up the slack until they got exhausted. I will not say never to NDT if I able to get my adrenals working a lot better.
I don't have Hashi's and wished I had gone down the root of getting my iodine, selenium, iron, amino acids, zinc, copper, B's and C etc, up to scratch before going on T4. When I did the tests everything showed up so low, especially iodine, selenium, iron, copper, C, B's and essential fatty acids. But alas I did not have the nutrition knowledge I have now then I did not even think it a big deal when those tests came back, at the time. Now I know we are what we eat but more importantly we are what we can absorb. I have very low stomach acid so I am working like crazy to try and repair this at the moment.
I admit to a bias that out creators made our bodies self healing given the right tools
And, to a certain degree, I agree with you. But, there are limits. And the thyroid is off-limits.
as long as something is not too far gone.
How long did it take you to get diagnosed? But the time you did manage it, your thyroid was probably pretty far gone. In the UK they like the TSH to get pretty high before they will diagnose. And by that time, you are very hypo. If there was any hope of regeneration and healing - and I don't say there is - it is more than likely long gone by that time.
I did try NDT and got very ill on it. At the time I did not realise that my adrenals were so shot after being undermedicated on T4 for so long.
It took me nearly 50 years to get diagnosed - I'm 99.9% sure I've been hypo since I was 8. And then T4 did not agree with me at all, even in NDT, and I tried doses from 50/1/4 grain up to 200 mcg/6 grains. But, my adrenals were treated with HC before I started with NDT. So, that was not the problem.
It looks like my adrenals and nervous system took up the slack until they got exhausted.
Yes, that's what happens.
I don't have Hashi's
So, do you know why you're hypo?
You say your iodine was very low, but do you know that thyroid hormone replacement naturally contains iodine? Because that's what thyroidhormone is. 1 molecule of T4 has 4 atoms of iodine. So, 100 mcg T4 ccontains about 65 mcg iodine. So, if you've been taking thyroid hormone replacement for some time, it's pretty obvious that iodine is not the answer, or you would be cured by now.
In only know that I must have got hypo when I had both my babies. Although I suspect it could have been long before that. I was so ill after my first baby, too tired to go for a post natal, otherwise it might have been picked up. My hair was coming out in bucket loads, I could not put one foot in front of the other. I did not feel right until I fell pregnant with my second baby. After having him the same thing and too ill to go for a post natal. I went through an early menopause age 42. I got sick 5 years before and remembered thinking this exactly how I felt after having the babies. It took doctors 4 years to diagnose thyroid. Even then it was a sleep clinic specialist that diagnosed it. She recognised it straight away.
OK, so in other words, it took you years to get diagnosed. Not much chance of recovery after all that.
Many women become hypo after childbirth, but it's usually due to Hashi's - pregnancy and childbirth are triggers for Hashi's. So, why are you so sure you don't have it?
Did they test both Hashi's antibodies: TPO and Tg? Usually the NHS only tests TPO. But if TgAB is high, it does mean you have Hashi's.
Also, it's not unknown for people to have Hashi's without ever having over-range antibodies. They are diagnosed by ultrasound. Have you had an ultrasound?
Never had an ultra sound greygoose. I can follow up with the endo when I see him next and ask for these tests. Unfortunately I do not have a face to face appointment with him until March 2024! i had thought I would be seeing him before this, as he has only just prescribed T3.
Gosh, I shared your desire to ‘not be on anything’ at the start of my journey. I grieved deeply for that health independence I once had, but when I became optimised and realised how blooming awful I had been feeling for years- I got over it.
We slip so slowly into the state of hypothyroidism that it is only when well again we actually appreciate the magnitude of the deterioration we experienced.
So yes some parts of our body can adapt and overcome e.g. neural plasticity - the brains ability to grow new neural pathways with the right building blocks and stimulation and the liver can up to a point recover and muscle tissue and skin can heal, but still carry the scars. I have scars and even a dent in my leg where an injury led to muscle damage. Our body has many ways to heal and compensate, but not every aspect of our body have these abilities.
Eyes, heart, kidneys, bowel tissue, stomach, oesophagus- just off the top of my head. Oh and glands….. Once a gland doesn’t function - that is it. Men’s testicles don’t regenerate nor do women’s ovaries etc.
The Hashimoto’s form of hypothyroidism comes about as a result of our immune system attacking the thyroid. Tissue is destroyed. Perhaps this can be slowed down by trying to dampen down the immune response through lifestyle changes, but this doesn’t lead to regrowth or regeneration.
Some body builders use T3 apparently when trying to build muscle for competition and the wean themselves off it afterwards, then their own Healthy thyroid kicks back in. A VERY dangerous game however - Russian roulette with the thyroid.
Someone with a dysfunctional thyroid weans themselves off thyroid hormone replacement and they go back to being not just as hypo as they were before, but depending on the additional damaged sustained over time through the autoimmune disease process, they fall to a worse state than before.
I have read so many real accounts on here chasing the elixir of life or the ultimate lifestyle hack which we can have access to for the very reasonable price of x$ or xx£ and most times people’s experiences are very negative when they try them out. As to the others? Crickets……… they are not coming back to report problem solved. It doesn’t take a genius to work out why.
Who of us wouldn’t shout it from the rooftops if we GENUINELY had found the secret to regenerating. The only people who purport these myths are those benefiting financially from it, or perhaps those who experienced a thyroid infection that didn’t damage but merely impeded function for a while. See link below.
Some people pedalling these myths could have experienced transient conditions, as discussed in the link above and have been misdiagnosed with an under active thyroid, only then to latterly take themselves off medication seeking dependency free health to find themselves well (because they were never hypo in the first place).
But this is rare - and I have read cases of people being well having come off medication - short period feeling fine then dropping down and needing to go back on replacement and then because of the damage caused through starving the body of thyroid hormone replacement, not being able to get back to ‘the sweet spot’ they had previously enjoyed. Being unwell for months or even years. Likewise doctors under medicating people, owing to their obsession with dosing by TSH can produce similar and lasting deleterious effects. Read my bio for my personal experience of under medication through ignorance. Spoiler- there is a happy ending! 😂
I hear you. And I agree with most. The stories I've read about (including my sister) people being able to come of off thyroid hormones and STAY off, have been about people who had a short stint on them (less then 10 years). I've been on them for 27 yrs now, ugh. So I'll stay happy to be on 1/2 dose, but will continue to be cautious, aware, and with my health always at the forefront. I'll read about your journey now. Thank you!
Diet, herbs and vitamins/minerals won’t help if you don’t replace the thyroid hormones your gland is no longer producing.
Whilst I’m resistant to taking medication for anything if I can avoid it, I’m aware that thyroid meds are not drugs - they’re hormone replacement therapy. If your thyroid stops working, you have to replace the hormones it no longer produces…
These articles explain what happens if hypothyroidism is left untreated:
You need to think about the job your thyroid did. It controlled everything in your body from going to the loo and temperature to keeping you awake and alive. There are some things that are beyond diet control and self help. My thyroid started failing when I was 18, that was nearly 50 years ago. The levo has improved since then but without it I wouldn't be here now. I am now on armour with a little bit of levo. I still get tired but I'm better than ever, and without it I wouldn't be here. I was in hospital recently and some bright spark decided to cut my thyroxine in half! I'm still getting over that because my gp left it for another 2 months before acknowledging that I did need it and reinstalling it. I'm all for not taking unnecessary meds but to stay as well as i can I look into what is suggested and, if it will help me, take it as prescribed. Hoping that helped you. Take care Cx
Thank you so much for responding. I'm aware of what our wonderful thyroid does for us. I've studied it ever since I was diagnosed in 1996. But information (and access to it), and I, have changed. I may not be one of the steadfast and frankly, lucky, people who can someday thrive off of thyroid hormone replacement. If so, ok, but I'll continue to try. I'll be very careful.
So far, unable to go lower then 1/2 dose. I'd be happy if it stayed that way.
Such a journey, hypothyroidism has put us all on, right?
Obviously you need to retest vitamin D, folate, ferritin and B12 …..on too low a dose of replacement thyroid hormone’s vitamins are likely to drop significantly along with lower stomach acid
Well done on your journey. I remember reading an article many years ago (wish I had kept it). This article was saying how in the old days natural desiccated thyroid was given for hypothyroid and also natural pig insulin for diabetics and over time many could heal themselves, or the natural medication would heal them and they could come off of medication.
Apparently natural might not stop the thyroid or pancreas completely turning off making it's own. The chemical drugs levo and insulin you become dependant because it can stop your thyroid or pancreas producing it's own. That is why they say 'on it for life' drug.
There are a few stories out there on the net of people that have healed their thyroid. Have you looked into iodine, selenium, fish oils, L-Tyrosine and raw coconut oil?
I appreciate your thoughts. Yes, all those things are what some of what I've read about too. Gives me hope.
I get conflicting information on whether or not Hashi's people should take iodine. I take all of those things in my multi, and love to eat seaweed (iodine) on occasion. Haven't stayed on fish oils, mainly because of the cost. :/
There are herbs that can strengthen a thyroid as well, and I was on them for a short while until I was unemployed and couldn't afford them anymore.
My sister is one who was able to get off of her thyroid glandulars (was never on sythetic).
It is so expensive with all the supplements we need I have the nordic fish oils with lemon in a dark glass bottle. I keep in fridge. The taste is ok. It is expensive but lasts a good 3 or 4 months.
Well done to your sister She needs to come on here and tell her story. Her story needs to be told.
I love all of the discussions, insights, and knowledge that this initial question has brought up here!
While I"m well aware of how pharmaceuticals have benefited humanity, I also know that they made us sicker in some instances (not talking about thyroid meds necessarily). Also, if you keep someone reliant on your medication, you make a lot of money. Hence, perhaps, the reason we are told that we'll have to stay on thyroid meds/hormones forever, without ever someone saying "hmmm,let's figure out why your thyroid is weak'' (aka: root cause).
I honestly believe that most doctors in western conventional medicine don't think outside of the box they learned from; they simply don't know what's outside of it. Let's not talk about whether to blame them for that or not, please.
Anytime I"m given medical advice from a doctor (in the last 15 years or so, after I suffered on the "carousel" one tends to find themselves on), I hear them, and let them know I appreciate it, and then I go do my own research on top of it before I act. I have had problems over the years with my health, and if I"d followed their plans for me, I'd be sicker today, and on multiple medications. They have their place, I know, (before anyone gets up-in-arms about my pov).
Below, just a few small articles on the topic. (and I agree with Katherine123, we should always know who is funding research, (as most if funded by pharma), and whether or not the person writing about it profits from it's publishing).
Also., don't forget that you can become hypo with a perfectly functioning, healthy thyroid - if your pituitary or hypothalamus don't work properly (for example, after a bang on the head). You just don't ever produce enough TSH to tell your thyroid to increase its production of T4, and to help convert it to T3.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I did not even think it a big deal when those tests came back, at the time. Now I know we are what we eat but more importantly we are what we can absorb. I have very low stomach acid so I am working like crazy to try and repair this at the moment.
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