Is there a alternative to levothyroxine? - Thyroid UK

Thyroid UK

139,602 members163,940 posts

Is there a alternative to levothyroxine?

Beth1701 profile image
27 Replies

I am Wondering if I can treat my underactive thyroid naturally as I really do not get on with levothyroxine. I am only on 37.5mg a day as anything higher and I get so many nasty side effects. My thyroid was at 32 then 26 then dropped to 12 but now it has gone back up to 25.9. I have attached my results. I have no idea what the numbers mean only that it says out of range. Do we have to take medication? I felt fine before I started taking this med. I have now been issued sertraline for anxiety. This started when I first started taking levothyroxine. I have been on it for 8 months and it's been hell. They tried to increase my dose to 50mg but I could not cope with the side effects. Seeing as my results have increased I think GP will push to increase levothyroxine again but I won't. Is their anything else you can try?

Written by
Beth1701 profile image
Beth1701
To view profiles and participate in discussions please or .
Read more about...
27 Replies
Beth1701 profile image
Beth1701

These are the other test results

Other results

Hi Beth, I would imagine the side affects are because you need a bigger dose! Have you tried other brands? It could be a reaction to the fillers. You can ask to trial others

Beth1701 profile image
Beth1701 in reply to Dahliasanddaisies

I have asked and GP said he they are all the same. I have tried two diffenet brands and both effected me the same. I felt fine before levothyroxine and did not even realise I had underactive thyroid. It came up because I had bloods taken for some thing else and GP said we might as well test the thyroid too. I have only felt like death since taking levothyroxine. Even on this low dose. I was just wondering if their is a other way of treating this?

Dahliasanddaisies profile image
Dahliasanddaisies in reply to Beth1701

Hmm well there are different types of meds (NDT, T3) but you won't get them via your GP. Have you had your antibodies tested so you know if you have Hashimotos or not? The GP probably won't have done this, you may have to buy an at home test kit.

Beth1701 profile image
Beth1701

They have not done anything just a standard blood check. I'm seeing them tomorrow I will ask about hashimotos.

RedApple profile image
RedAppleAdministrator in reply to Beth1701

' I will ask about hashimotos.'

Most GPs don't use the word hashimotos. It's typically known as autoimmune thyroid disease in the UK.

Diagnosed by having a positive thyroid antibody test result. But, it makes no difference to the ttreatment route whether the cause is autoimmune or idiopathic.

RedApple profile image
RedAppleAdministrator

'I am Wondering if I can treat my underactive thyroid naturally '

Underactive thyroid, typically referred to as hypothyroidism, means that your thyroid is unable to produce sufficient thyroid hormone. Thyroid hormone is required by every bit of your body and brain to function normally.

As you are deficient in thyroid hormone, you need to take replacement thyroid hormone, which is what levothyroxine is.

Please don't fall into the trap of thinking that by taking some sort of 'natural remedy' or supplement, your thyroid will magically be able to start producing the required hormones. This won't happen.

Beth1701 profile image
Beth1701 in reply to RedApple

Ok thanks. I have no idea about medication or herbal stuff. Just fed up with feeling like death. And since levothyroxine is not suitable for everyone I was just hopeing there is something else I could use

RedApple profile image
RedAppleAdministrator in reply to Beth1701

It's early days for you yet I'm afraid. It took a long time for your thyroid to become non-functioning. It's not something that happened overnight (except in the case of thyroidectomy / thyroid removal). And it takes a long time to find the right dose of replacement hormone. You feel awful because your dose is not yet appropriate for you, and your body is unable to function properly without the hormones it needs.

pennyannie profile image
pennyannie

Hello Beth ;

The only other option to synthetic thyroid hormone replacement is Natural Desiccated Thyroid -

though currently not licensed in the UK -

though the original and very successful treatment for hypothyroidism for over 100 years until Big Pharma launched its synthetic T3 and T4 treatment options on the back of NDT in around the late 1950s and then went about gaining market share.

It is the most expensive treatment option with the 2 leading brands being USA Armour and Canadian Efra and derived from pig thyroid, dried and ground down into a powder, which is made into tablets referred to as grains and contains all the same known hormones as that of the human thyroid gland.

I self medicate NDT as I was refused any treatment option other than T4 monotherapy and am with Graves Disease and post RAI thyroid ablation 2005 and became much more unwell some years later.

There are 3 main treatment options - synthetic T4 - Levothyroxine - the cheapest option - which is a pro-hormone and needs to be converted in the body into T3 -

T3 synthetic - Liothyronine - the active hormone and read we need to find, convert, around 50 T3 daily just to function - as you can live without T4 but you can't live without T3 :

and Natural Desiccated Thyroid - sometimes referred to as thyroid extract - which contains all the same known hormones as that of the human thyroid gland namely trace elements of T1. T2 and calcitonin + a measured dose of T3 and a measured dose of T4 in each grain/tablet.

greygoose profile image
greygoose

One of the most over-used words in the English language is 'natural'. I'm not even sure people know what they mean by it half the time.

Levo is as 'natural' as you can get. It is the thyroid hormone T4. OK, it's synthetic but that doesn't make it 'un-natural'. It's not a drug.

What being hypo means is that your thyroid, for whatever reason, can no longer make enough thyroid hormone to keep your body functioning correctly. You many not have felt any symptoms at the time of diagnosis, but that would not have lasted. The lack of thyroid hormone would have affected your whole body, eventually: brain, heart, lungs, kidneys, liver, etc. etc. etc. They all need optimal thyroid hormone levels to function correctly.

And, you can only replace a hormone with a hormone, so if by 'natural' you mean with a vitamin or exercise, or something, no, you can't.

Your TSH was very high, and your FT4 very low. You could not have continued to function like that very much longer. You were very hypo. So, you absolutely need thyroid hormone replacement of some kind.

So, is there an alternative to levo? Well, first of all, there are quite a few different brands of levo and they aren't all the same, whatever your GP may think. But he probably meant that the active ingredient - T4 - is the same in all of them, which it is. What is different is the bulk of the pill, the excipients that hold the pill together. The amount of T4 contained in the pill is so tiny that they have to bulk it out with other things. And some of the things they use disagree with some people. So, he's wrong about that, but GPs tend to be very unworldly. So, If you can get your hands on different brands to try, it could be well worth it - ask the pharmacist, not the GP.

That said, there is a sub-section of people that cannot tolerate T4, even after years of trying - and you're only in the early stages yet, so too soon to jump to conclusions - and need some other form of thyroid hormone replacement. And theirs is a hard life!

To begin with, there is the ancient remedy, what we call NDT - Natural Desicated Thyroid (but don't be deceived by that word 'natural', it's not always as natural as all that!). This is made out of pig thyroid, and is the oldest form of THR. And because it's the oldest, most doctors think it's out-moded and refuse to prescribe it. Very, very difficult to get on the NSH, and getting harder and harder to source privately. Also, very expensive. Also, if you really cannot tolerate T4, then you're probably not going to get on with NDT, either because it contains T4 and T3.

And then there is synthetic T3. I'm sure you know that T4 (levo) is basically a storage hormone that needs to be converted into T3 before it does anything. And not everybody is very good at conversion. But, the majority of doctors are very anti-T3. They do not know what it is or what it does, think it's dangerous and refuse to prescribe it. Pure ignorance, but there you are. So, an awful lot of us end up sourcing and paying for our own T3.

As I said, life is hard for those that want alternatives to levo.

So, is there anything that can be done to help you tolerate levo and be able to increase it to a decent level?

- the first thing you should do is get your nutrients tested: vit D, vit B12, folate and ferritin, and supplement any that are sub-optimal. Your body cannot use the hormone you are giving it without optimal nutrients

- secondly, get your cortisol tested. Your doctor can order an early morning serum cortisol test for a start, and if that gives cause for concern, you can do a private 24 hour saliva cortisol test. Your body needs good cortisol levels to be able to use levo.

- try splitting the dose - half in the morning and half at bedtime. This helps a lot of people

- and, as last resort, try taking it with food.

But it's far too soon to give up on levo and start the battle for alternatives. :)

Beth1701 profile image
Beth1701 in reply to greygoose

This is amazing Thankyou

greygoose profile image
greygoose in reply to Beth1701

You're welcome. :)

FallingInReverse profile image
FallingInReverse

Hi Beth,

I read through to your last post, and this one.

I think the most important thing for you to get your head around right now is that doctors don’t know anything about thyroid, and knowingly or unknowingly keep many many thyroid patients sick longer than they need to be.

Some people have a hard believing this. And you don’t have to take my word for it, just keep it in mind as you consider what your doctor is telling you and you will likely learn for yourself.

I have asked and GP said he they are all the same. I have tried two diffenet brands and both effected me the same.

It is categorically and completely incorrect that all Levo brands are the same.

I have only felt like death since taking levothyroxine. Even on this low dose.

The other thing people aren’t told, it’s hard to say if doctors fully grasp it either, is that when we take Levo, we are not “topping up” what our own bodies make. You are actually working to a full replacement dose.

A full replacement dose is generally/directionally 1.6 mcgs of Levo per Kilo of body weight. That means for most of us we end up between 75-150 roundabout.

You are more than likely on too low a dose. And you feel terrible . Heres why that is. TSH (thyroid stimulating hormone) is sent out by your pituitary when it senses you don’t have enough T4. TSH then should stimulate the thyroid to provide more T4. Your TSH was skyrocketing because no matter how much TSH was sent out, the thyroid was failing and didn’t respond.

The moment you started taking Levo, your pituitary sensed it had T4, and it will stop making TSH almost entirely over time. Hence why your TSH is dropping.

But your small dose of t4 is not providing the full replacement so you are still super hypo. Your TSH should (and will) be closer to 1 when you get near your optimal replacement dose.

I will also say that TONS of forum members were put on 50 mcgs Levo and left there for far too long, feeling terrible while the doctor said - you should be fine! Then they throw up their hands, offer you antidepressants (which we almost always don’t need as depression and anxiety is a SYMPTOM of low thyroid hormones) or beta blockers (for whatever palpitations we feel that are also almost always a symptom of low thyroid hormones) or they treat you for high cholesterol (also a symptom…)

Ultimately, almost all of us in that situation take about 6-18 months to properly work up to our full replacement dose and all those symptoms dissipate. That happened for me.

As for alternatives

There are plenty, but don’t expect your doctor to understand or have any idea what you’re talking about.

Great if he ends up being enlightened, but if he thinks all Levo brands are the same - that’s a tell he has no idea what he’s talking about.

So this forum can help you tease out the various things other patients have tried, to figure out if it’s just that you are on too low a dose, or if you truly can’t tolerate a Levo brands additives , or even there are a few who actually can’t tolerate Levo itself. But that is never the first place with look, we try to rule out the other more common things first.

Beth1701 profile image
Beth1701 in reply to FallingInReverse

Thank you so. Much for your reply. I was not told any on this by my GP and did not fully understand how the levels worked. It makes sense to me now. Thank you so much for your clear explanation.

Beth1701 profile image
Beth1701

Thank you all for your replies. It actually makes sense why I feel so terrible.. My GP is pretty clueless but I can now go with more of an education on this subject. I never understood how it all works but now I get it! I'm not going mad!! Thank u again

RedApple profile image
RedAppleAdministrator in reply to Beth1701

'My GP is pretty clueless '

Be aware that the vast majority of GPs are cluless, and sadly, most endocrinologists too. They all think it's simple, and really do not understand that it's actually extremely complicated. It's all about little white tablets and TSH numbers to them. But it's far from that for those of us who have to cope with both their incompetence, and all the day to day problems of trying to function with inappropriate thyroid hormone levels.

FallingInReverse profile image
FallingInReverse in reply to Beth1701

Step lightly and keep your objective in mind.

On top of being clueless, doctors have this amazing ability at the same time to be completely confident that they are smarter than everyone.

We look forward to how your appt goes, and we do give people the benefit of the doubt… but most of us find navigating the combination of arrogance and ignorance - sometimes mixed with a touch of “just don’t give a crap” - is another layer of actively managing this disease. As if our symptoms weren’t enough!

I hope it’s a great appt, and it might be! But remember we are all playing the long game : )

tattybogle profile image
tattybogle

hi beth can ask how many weeks you tried 50mcg for ? . the reason i'm asking is because the first 4/5 wks after any dose change , ( even if it was needed and was a change in the right direction) can be pretty unpleasant. but then improve slowly.

Beth1701 profile image
Beth1701 in reply to tattybogle

Hi I was on it for a month so not long but it was pretty awful. I know I have to push though it now. I just really struggle with the side effects

FallingInReverse profile image
FallingInReverse in reply to Beth1701

So some side effects are very very common, others are not.

So please do keep us all posted on what you decide to do.

You can get advice from the fabulous collective wisdom of this forum and you will get the best “second opinion” you could hope for. We have brilliant and knowledgeable people here on this forum… none of us are doctors but all of us are fellow patients who have been-there-done-that and got the tshirt.

I dare say there isn’t one post I’ve seen where at least one person hadn’t gone through the same thing and could share their experience.

Beth1701 profile image
Beth1701 in reply to FallingInReverse

This has been really helpful so far. And I will keep you posted and I'm sure I will have more questions in the future. Thanks

tattybogle profile image
tattybogle in reply to Beth1701

it must be really hard for you to deal with this since you felt ok before you started levo, but your TSH was going up so fast and so high, and fT4 level so low , that it is very unlikely you would have continued to feel ok for more than another few months before your energy levels crashed pretty badly .

it wasn't a problem for me when i started levo cos i'd been feeling increasingly lousy for 4 yrs , and to be fair i didn't notice much difference on 50mcg. so i didn't have any problems when starting.

but i do remember one time years later when i was lowering dose from 125 to 112.5mcg that if you'd have asked me at 4 wks if the lower dose was an improvement , i would have been adamant that it was not , i felt horrible and i'd been 'not too bad' on 125 ... but by week 6 i was feeling a bit more settled, so thought i'd wait a bit longer..... and sure enough by about 3/4 months .. i had to admit i felt better on the new dose than i had on the last one ..... changing the level of thyroid hormones is a bit like changing direction on the titanic ......you turn the wheel , but it takes soooooo long to start to see any effect.

the quote below may help a bit (although i realise you weren't aware your body was breaking down ,,, but we are all very sure that you would have been feeling it before very long)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Beth1701 profile image
Beth1701 in reply to tattybogle

That's great thanks. It's a good quote and makes perfect sense

FallingInReverse profile image
FallingInReverse in reply to Beth1701

tattybogle

it must be really hard for you to deal with this since you felt ok before you started levo, but your TSH was going up so fast and so high, and fT4 level so low , that it is very unlikely you would have continued to feel ok for more than another few months before your energy levels crashed pretty badly .

I was going to say something similar to Beth as well. She’s “lucky” that her tsh was sooooo high AND symptoms hadn’t hit yet. When you think of all of us who high high tsh but never test, no symptoms, until so much damage has been done here we are taking years to claw our way back to functioning.

I was pondering this as I begin to see the light at the end of the tunnel.

Like - those 8 years where I was piling up the symptoms and had zero clue they were ALL connected.

I wonder (don’t we all) what life would have been like to start treatment when it all started, and at least before my adrenals took a beating by compensating.

But yes for Beth, where many question whether they need Levo (like I am still waiting-and-seeing for my daughter)… a TSH that high gives more confidence that Levo is a good bet.

FallingInReverse profile image
FallingInReverse

One more thing Beth. Keep it in the back of your mind that most of us start to feel better when Free T4 is mid to 3/4 through the range.

Looks like you are about 10% through - so don’t be fooled if your doctor says you’re fine because you are “in range.” 10% is dismal.

Being 10% through range - yes I remember that and I used to wake up every day feeling 90 years old and convinced I was dying!

if you can ask your doctor if they can order these tests for you. If they say no, you can do a medichecks for the same. Many people here have trouble getting the NHS to do these and many get them done privately.

A compete picture of your thyroid health comes from these tests:

1) TSH

2) Free T3

3) Free T4

Plus these vitamins

4) ferritin

5) folate

6) B12

7)Vit D3

****Consistently test all at the same time, around 9 am is best if you can. 24 hours since last Levo dose. Fasting before. No biotin for 3-5 days before. Wait a full 6-8 weeks after a dose change ****

These should be tested to see if an autoimmune cause to any thyroid issues can be identified:

1) TRab

2) TSI

3) TPOab

4) TGab

The top two are for graves (overactive) so you can skip those if needed. The other two could confirm if your thyroid issue is from an autoimmune cause.

Which doesn’t change the treatment path (Levo) but is something that is helpful to know.

Beth1701 profile image
Beth1701 in reply to FallingInReverse

This is really great thanks so much xx

Not what you're looking for?

You may also like...

Please help me

Hi again Based on my results: Ferritin - 37.6 ug/L 30 - 207 Folate - Serum - 24.1 nmol/L> 7 R...

Vegovy

Hi guys, l used to have graves basedow disease and l was waying 56kg which l felt good. Now lve got...

thyroid help

hey guys . so I was diagnosed with hashimotos 6 years ago Iv been on Lavo for this time. But...

How to "mention" or "callout"

Many members have problems alerting other members when they post or reply. The member you are...

Overmedicated on Levothyroxine

I've been overmedicated from 50mg to 75 for 5 months and started having hyper symptoms. Has anyone...