Can you get off thyroid meds after being on for nearly 3 years?

[ockerdoc]

Hello I’m wondering about the possibility of getting off Levo and giving my thyroid another crack at natural production. I’ve been reading so many papers about the Covid vaccine messing with your thyroid and whether I should have just waited. My TSH was between 4 and 5 for the Covid years so 3 tests over 2 years. I’m now on 125mcg of Synthroid. Is there any chance of slowly reducing down and going natural again? T4 has killed my libido due to the increase in SHBG causing low free testosterone.

[FallingInReverse]

Ever test positive for antibodies?

[ockerdoc in reply to FallingInReverse]

No I’ve always been negative.

[TiggerMe Ambassador]

Probably best to get a scan to look at the condition of your thyroid and if it looks like it might be a viable option rather than putting yourself through stopping and starting

[FallingInReverse]

Ive pondered this question deeply as it’s the reason I have not put my 18 yo daughter on Levo. Despite a ton of the usual symptoms, low free ts, no antibodies and normal thyroid scan.

I’ve been watching her bloods for a couple years, optimizing vitamins in the meantime.

My takeaway is that - in layman’s terms - Levo does put your pituitary’s tsh production to sleep. And that theoretically it can wake up again after stopping Levo. I didn’t find anything conclusive on how often it would stay asleep for good, or if it does wake up, how long that takes.

Of course doing so successfully would mean your pituitary and your thyroid was only temporary in its dysfunction. As you say - viruses and vaccines (and childbirth for women and I think other things) are indeed temporary. On the other hand, virus and vaccine can also trigger a genetic predisposition and so despite it being a cause, it may still be a one way street.

In some ways the only way to find out is to find out. As you prob know there are some people who are dead set on getting off Levo, but from their profile it’s clear they will just move toward severe hypo and possibly myadexa (sp?) coma at worst and at best years clawing their way back to the starting line. But I see your point.

Looking forward to other replies if others come along to share.

[Tina_Maria]

2 months ago:

TSH 0.157

T3 5.72 (3.11-6.8)

T4 14.7 (11.9-21.6)

I take 125mcg T4 and 6.25mcg T3

In your post a while back, you were asking if you should increase your levothyroxine dose. What has changed since then?

Considering you are taking a considerable amount of hormones and your T4 in this test was only 28.9% through the range, I do have doubts that your thyroid will be able to provide a meaningful output. You must have been feeling under-treated at the time, hence you were asking to increase your dose (which many here would have suggested, although some people might be okay with a lower T4 when taking T3).

I personally would not go down that route, yes you may have had subclinical hypothyroidism at the time of diagnosis; illness and viral infections can very much mess with our thyroid, but these illnesses can also leave considerable damage in their wake. In some cases the thyroid can recover (but this is usually within 2-3 months or perhaps up to a year), but in some cases the damage can be permanent. And not all cases of underactive thyroid test positive for antibodies, you can still be underactive without positive antibodies.

If you are really keen on trying, you could gradually lower your meds to see if the levels go down further or stabilise. However, you do not want to push this experiment too far (and I would keep a close eye on testing), as your body heavily relies on thyroid hormones for many processes (lipid, protein and glucose metabolism, cardiac output, metabolic rate, thermogenesis etc.) and low levels can cause all sorts of problems in the long run.

[ockerdoc in reply to Tina_Maria]

Thank you 🙏

[Sunflower64 in reply to Tina_Maria]

Why is that considered ’a considerable amount of hormones’? That does not sound very high to me.

[Tina_Maria in reply to Sunflower64]

It is quite an amount of hormones for where his T4 and T3 levels are....

[Hookie01]

I have seen a lot of women say that with clean eating, limited chemicals in the body etc as much as they can, they have managed to come off meds. Depending on what you believe, thyroid issues are caused by a sluggish liver, it's all about cleaning your liver so it can function properly and kill off the EBV which causes the antibodies if you have them.

[TiggerMe Ambassador in reply to Hookie01]

I'm not sure about this statement.... if your lifestyle is causing your thyroid suppression then that's going to help and certainly optimising vits and mins.... but if your thyroid has shrivelled no amount of clean living is going to bring it back to life 😬

[Hookie01 in reply to TiggerMe]

Yes, it all depends. I have no thyroid as had RAI, so no hope for me. Though some say you never completely get rid of all the tissue and it will still try to continue to work, but because we suppress the TSH with thyroid replacement, it stops it from trying to produce more! Lots of different info out there, who knows what is correct 🤔

[Sunflower64 in reply to Hookie01]

What do you mean when you say that thyroid issues are caused by a sluggish liver? That a lot of the T4 to T3 conversion takes place in the liver? While that may be true, they would not be on Levo to begin with if they did not have a thyroid problem…or are you seriously suggesting that autoimmune hypothyroidism is caused by a sluggish liver?! If so, please provide reliable sources.

On a more general note, there are quite a few integrative practitioners (mainly in the US) who claim thyroid disorders can be cured, often using their pricey supplements. So we need to be careful and not believe everything we read.

[Hookie01 in reply to Sunflower64]

Because livers now days are overloaded with chemicals from fake food, cosmetics, household products, pesticides etc etc, the list goes on and on, it cannot function as well as it should, so is not converting t4 and t3 as it should (sorry, not the most technical explanation but thats beyond me )and also it cannot hold reserves of vitamins and minerals which is why a lot are deficient. I wouldn't say supplements would be able to cure, but clean eating and living sounds feasible to me, but it's made very hard to do now days sadly. So many processed foods and drinks etc. It's a scary, crazy world we now live in! Quite a few health issues could be resolved with healthy living, but the world has changed so much.I'm not saying I am right, I was saying a lot of people have claimed this, just wish I had tried more before destroying my thyroid.

[RydeBeach]

I recently went back to the NHS from being treated privately and the Endo wanted me to reduce my medication with a view of stopping, as she didn’t believe I ever needed to be medicated.

I came off the T3 and was at 75mg Levo and my symptoms became much much worse and she has now agreed that I need Levo.

I did blood work at 75mg and it showed room for increase.

Although she couldn’t help but mention that it was my fault for ensuring my body needed it by being on T3 and even starting medication in the first place🙄.

Maybe if you did try to reduce slowly it would become clear?

[ockerdoc in reply to RydeBeach]

Thank you yes I will be reducing and see how I go.

[Tina_Maria in reply to RydeBeach]

The question I would ask this endocrinologist, would they ask a type 1 diabetic to come off insulin with a view to stopping? Maybe by magic the pancreas could kick in (by having been mute for years) and suddenly produce some insulin...

Strangely, I do not see that scenario happening, yet thyroid patients are always looked at, as if they would not need their medication and they could pretty well try to get off it. Seems that one hormone is deemed necessary where as another essential hormone is not.

Some serious double standards if you asked me.

[Judithdalston in reply to Tina_Maria]

I always find it odd when postees compare insulin dependent diabetic and thyroid treatment …they are completely different diseases., and even specialisms within endocrinology. An obvious variation is that blood glucose shifts in minutes and can now be seen 24/7 on a continuous blood glucose monitor that stores all the stats.re.insulin jabbed and carbs consumed, recording the ‘hypos’/ ‘hypers’, whereas with hypothyroidism we have to collect blood results( frequently private ones) over months/ years, looking for patterns, even with vit/ min levels, as the ‘huge tanker’ of thyroid levels shift( or not)…

[Sunflower64 in reply to Judithdalston]

You can replace diabetes with almost any disease and ask yourself if doctors would tell patients with those diseases to go off their meds and see what happens. I once suggested to a doctor that I go off my blood pressure medication, and he said absolutely not, your blood pressure will rise and that will put a strain on your heart. He went on to say that hypertension is usually a chronic condition. I would say hypothyroidism is more chronic. And, why would hypothyroidism (after going off meds) not put a strain on your heart?

A person without a thyroid on T3 only would end up ill very quickly if T3 was stopped. Levo decreases more slowly, sure, but we risk becoming very ill and putting a lot of pressure on our adrenal glands if we allow ourselves to go hypo. Been there, done that. And I would not recommend it to anyone diagnosed with clinical hypothyroidism and thyroid antibodies.

[Judithdalston in reply to Sunflower64]

My Gp recently threatened me with DEATH having a suppressed TSH ignoring that the previous 20+ years it was also suppressed, but has never commented on my diabetes, and possible associated ailments!

[Sunflower64 in reply to Judithdalston]

I know, I have been ’dying’ for the past 15 years according to doctors…still alive and kicking!

[StitchFairy in reply to Judithdalston]

I think of it in much the same way as food. You could stop eating for a few weeks and you probably wouldn't die. But you would gradually become very unwell. The same goes for thyroid medication. Sure, you won't drop dead or go into a coma immediately you stop taking it, but every day that your body and brain are deprived of those vital replacement hormones puts a strain on everything as it struggles to keep going.

[Tina_Maria in reply to Judithdalston]

The point I am making is, that it appears that for other chronic diseases patients are not asked to get off their medication or reduce it to a point where they can no longer function. Of course diabetes and hypothyroidism are different diseases, but both hormones are essential for life - without insulin you will die, and the same goes for thyroxine, you will die if you have none. The way those hormones are measured is secondary to their physiological importance.

The point is both are very important hormones, but it feels that thyroxine does not seem to have the same medical importance for health care professionals as for example insulin.

[Sunflower64 in reply to Tina_Maria]

I could not agree more!

[dealsgap]

Hypo comma = Myexedema or The 3 types of coma associated with diabetes are: diabetic ketoacidosis coma. hyperosmolar coma. hypoglycaemic coma. All have/could have bad out comes.

[3-T1AM]

If you decide to quit levothyroxine, there are multiple research articles on relative success with selenium plus myo-inositol for hypothyroidism: pubmed.ncbi.nlm.nih.gov/282...

[TiggerMe Ambassador in reply to 3-T1AM]

It is interesting isn't it, I was reading up about myo-inositol as a hormone balancer just the other day... do bare in mind this is for auto-immune hypo's which the OP isn't

[ockerdoc in reply to 3-T1AM]

Thanks I’ve been watching Dr Westin Child’s videos about coming off it doesn’t seem too bad. 25% reduction every 4 weeks will be what I’ll be trying.

[Sat2 in reply to ockerdoc]

In mid 2023 I tried to come off 75mcg levothyroxine by reducing 12.5mcg every two weeks, which was far slower reduction than my doctor suggested. I was tested regularly, when it was obvious my TSH was going skyward and I gave in and continued with levothyroxine, I was then really quite unwell for many months afterwards. Please be very careful, if your body does need it, it will punish you harshly if you remove it.

[3-T1AM]

Whoops, didn't mean that to sound as if supplements could be used in order to successfully quit levothyroxine. Just something to possibly try if you do quit.

I stopped taking synthroid after 12 years and I still have some thyroid function. I do not feel good, but I never felt good when on it either. My t4 and t3 are in range; my tsh was 13 when last checked.

[ockerdoc in reply to 3-T1AM]

How long have you been off? Apparently you can take thyroid glandulars aswell to help as your coming off.

[3-T1AM in reply to ockerdoc]

A little over one year. My last thyroid test was taken after 3 months of no meds. Since then I've taken single-episode Synthroid occasionally--I'm running my own self experiment. I took 12.5 mcg in October. Result: anxiety. Took 200 mcg yesterday. Feel a little better. So far, overall I think I do better in the long run if I take it maybe once a month.