Is there a alternative to levothyroxine? - Thyroid UK

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Is there a alternative to levothyroxine?

Beth1701 profile image
38 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?

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Beth1701
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Beth1701 profile image
Beth1701

These are the other test results

Other results
Dahliasanddaisies profile image
Dahliasanddaisies

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 toDahliasanddaisies

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 toBeth1701

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 toBeth1701

' 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 toRedApple

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 toBeth1701

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.

 Beth1701

As a ' new patient ' getting either T3 or NDT prescribed on the NHS now requires you to be assessed by an NHS endo and we are facing something of a post code lottery with financial constraint rather than medical need being the order of the day in some health care trusts, and with NDT not even entertained on the NHS and for those patients established, happy and settled on NDT being encouraged to switch to synthetic treatment options.

If you can afford to go privately obviously there is a different landscape but ' best to know ' who to go to - Thyroid Uk - the charity who supports this patient to patient forum holds a list of recommended thyroid specialists and endos - NHS / Private - just email admin @ thyroiduk.org for the list - and / or ask for Private Messages ( through the Chat icon ) for feedback on anyone you might like to see - as we are not allowed o openly discuss any medical professional on this ' open ' part of the forum.

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 togreygoose

This is amazing Thankyou

greygoose profile image
greygoose in reply toBeth1701

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 toFallingInReverse

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 toBeth1701

'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 toBeth1701

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 : )

Bluesadawg profile image
Bluesadawg in reply toBeth1701

Hiya. I’d really consider changing your GP. And possibly go through a few.

The first one I had gave me my diagnosis (hypo) by text as he really obviously didn’t understand. The second one admitted her training was insufficient (at least she was honest!). And the third one is great, much more clued up ( if still less do than here, but still good) & lets me make my own decisions. I still have ongoing issues but at least I know i’m being taken seriously.

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 totattybogle

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 toBeth1701

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 toFallingInReverse

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 toBeth1701

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 totattybogle

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

FallingInReverse profile image
FallingInReverse in reply toBeth1701

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 toFallingInReverse

This is really great thanks so much xx

Mac2013 profile image
Mac2013 in reply toBeth1701

Thank you for this post Beth1701 and the incredibly helpful replies. Truly informative 🙏🏾

ragdollcat profile image
ragdollcat in reply toBeth1701

Hi Beth , I had serious fear of levothyroxine for a long time . I tried to stay on a low dose , but finally woke up and got with the program. I’m now on a higher dose of Levo ( 100 mcg daily) and my TSH is optimal. I’ve also increased my ferritin ( iron supplements) take vitamin C, 1 cod liver tablet. I feel great . I take my pill at 6:00 am and go back to sleep for one hour , then I get up for work at 7:00. That way I can jump out of bed and can eat brekkie straight away. You’ve got this Beth ! You’re going to be ok. From my research you would have to take a very high dose of levothyroxine before you anything really bad could happen …like 200 tablets ! I was terrified of going hyper , but your body will warn you and the dose will be lowered. It’s all very manageable. 😊

Beth1701 profile image
Beth1701 in reply toragdollcat

Thank you for this. It does make me worry because when they increased my dose to 50mg I had a very strange episode where everything went white for a few seconds. Really freaked me out. GP said it would not of been the levo but took it just before it happenend. I know. I need to be on a higher dose but I am very worried about it

RedApple profile image
RedAppleAdministrator in reply toBeth1701

Beth1701, 'had a very strange episode where everything went white for a few seconds. Really freaked me out. '

Your body and brain are in a constant state of confusion. There's not enough hormone to 'run everything', so there's a constant battle going on, with all the cells trying to grab what they need.

This means some things might work properly one minute, but not the next. I know it can be really scary. I recall an episode for me, where I completely lost all colour vision. I saw everything in monochrome. Then another time, I was about to walk back from the 'local corner shop', and my legs wouldn't move. I had walked to the shop, so my legs functioned just moments before. But suddenly, something that we typically just do without consciously thinking, didn't happen. There was a disconnect between brain and leg function. Only a minute or two, but very weird and scary.

These odd things can happen during the days, weeks, months of transitioning onto a dose of thyroid hormone that works for you.

"GP said it would not of been the levo'

He's right, it wasn't the levo itself. It's all part of the 'recovery process', where things are all out of kilter. Your body and brain are all confused because the hormone they need isn't coming from the thyroid gland 'on demand' like it's supposed to do.

FallingInReverse profile image
FallingInReverse in reply toBeth1701

Beth not sure if this was mentioned above, but did you know that Levothyroxine is identical to the natural hormone your thyroid used to make?

It is not a drug nor a pharmaceutical.

Many people even on this board talk about being “overmedicated “ or “undermedicated.”

It’s subtle but it’s incorrect… it’s actually “over-replaced” or “under-replaced.”

It’s nit like when you have a headache and you take an aspirin or Advil (or whatever you guys have over there : ) ) that’s one-to-one.

With hormones - it’s like tapping the wheel of a big ship… and then hours later the boat has turned.

Every single cell of your body needs sufficient thyroid hormone to function, and getting it there is part of a multi step long chain reaction. It takes about 6-8 weeks on a new Levo dose to settle.

For those of us who were undiagnosed for years, it can easily take 1-2 years for our body to adjust to having the right hormones again and to feel better.

What you’re going through us common and our collective experiences can hopefully calm you and give you hope.

ragdollcat profile image
ragdollcat

That does sound scary. The levo takes time to build up in your system so it is unlikely to be the Levothyroxine. I read a medical paper about a two children who took mums levo ( 50 pills ) it took days for the children to have a reaction - drugs can be administered to slow heart rate and the children didn’t die. I totally get your fears though. I did have a reaction to levo yellow pills ( it was the dye ) gave me bad hives . I only take white levothyroxine pills now and I’m fine .

helvella profile image
helvellaAdministrator in reply toragdollcat

In the UK, we only have white tablets - levothyroxine or liothyronine.

So we rather side-step that issue.

ragdollcat profile image
ragdollcat in reply tohelvella

That’s so interesting! 😊

Elle2024 profile image
Elle2024

I get this completely. I was on levothroxyine a few years ago and ironically felt very low and not myself. My GP rubbished it as ‘only putting in something the body is missing ‘. Fortunately I had a great acupuncturist who has brilliant medical knowledge who said not all people react as well to it ( in fact she experienced the same. ). Note I was only on it a couple of months but felt very down on it ( I felt).

I tried to manage my TSH naturally ( and well enough wjth Coriolus mushrooms ) but my numbers have never been brilliant- but I genuinely didn’t feel I had any adverse symptoms .( I do have chronic insomnia so fatigue can be present but also stress high so probably masked).

I was given script for Armour and decided just last week to start taking it. I’ll be watching closely to see how it goes . Taking 30mg daily. Have autoimmune thyroid.

Beth1701 profile image
Beth1701 in reply toElle2024

Thanks it's great to have another experience to listen to

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