Levothyroxine withdrawal: Has anyone gone... - Thyroid UK

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Levothyroxine withdrawal

Kailey99
Kailey99
85 Replies

Has anyone gone completley off thyroid meds? If so, what were your withdrawal symptoms and for how long did they last?

I went off levothyroxine about 3½ weeks ago and I have nausea getting worse and worse, I also had surgery on the 5th of september but I've been off my meds for that a long time and I was hoping the nausea would get better but it hasn't. I had previously been on levothyroxine for a year and a half. I have big issues getting enough food in my system and tolerating food but no vomiting.

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cjrsquared

Levothyroxine is replacement of an essential hormone that your body is not producing enough of. It is needed for normal metabolism. You are putting yourself at serious risk of long term damage and health problems. I suggest you google myxoedema coma and decide if you want to go that route.

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Kailey99
Kailey99
in reply to cjrsquared

I suggest you try living with suicide thoughts and migraine that makes you unable to leave your house, meanwhile no doctor will help you.

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cjrsquared
cjrsquared
in reply to Kailey99

I am sorry you are so unwell with levothyroxine, this wasn’t clear in your original post. I am pleased you have found a new doctor who wants to help you explore the wider picture including adrenals and cortisol. You have obviously tried different meds with little improvement. Please keep an eye on your thyroid levels as high TSH long term is very dangerous.

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Wolfiesmom08

I did not start having migraines till I was diagnosed with Hashimoto’s and I too blamed my thyroid meds. But it is a disease that can be linked to Hashimoto’s. So I stopped taking my meds and felt great till about week three when I developed the inability to eat or even smell food, I had enormous panic attacks , pounding heart rate. It wasn’t till I read a blog by Barbera Loungeed from TiredThyroid that I realized the symptoms were my body trying to function without thyroid hormone and using adrenaline as a substitute. It was a terrible couple months but once I introduced my meds again I felt much better over time. I made an appointment with a neurologist and now take meds for my migraine. The pain from migraine can drive you crazy. I have not read the rest of the posts but I hope you can find your answers and know your not alone. I also switched brands of medication and this helped too.

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Jnetti
Jnetti
in reply to Kailey99

Hypothyroidism is a cause of depression. So is malabsorption, not being able to digest properly. So are migraines and lots of other things.

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Why have you stopped your Levothyroxine?

Did you tell the surgeon?

Levothyroxine is for life.

Suddenly stopping 125mcg of Levothyroxine is dangerous.

Have you considered asking your GP to refer you to an Endocrinologist?

You need up to date blood tests.

Did you ask for the tests as advised in your first post?

You may have deficiencies and need prescribed supplements - especially Vitamin D.

Ask your GP for the following tests: (if refused ask to be referred to a Specialist. Take a written list of all your symptoms with you)

Vitamin D

B12

Folate

and Ferritin

Also up to date Thyroid Function Tests :

FreeT3

FreeT4

Total T4

TSH

Ask for an Ultrasound scan of your Thyroid also.

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Kailey99

I stopped because my side effects were so very bad I couldn't continue, my doctor refused to help me, the ones at hospital refused, endocrinologists refused and no one will look into why I have these side effects. Now I have a new doctor and will get blood tests done in two weeks, her recommendation! I suggested I might have troubles with cortisol, Im not sure she will take ferritinin, I know Im low but no one seems to care about it at all.

I have told my GP about ALL of my side effects, I told the doctors at the emergency room about them, I told the doctors at the hospital about them but no they didn't care. My GP said sure, he could refer me to an endocrinologist just because I think I need it so the endocrinologist said no, I wrote again on my own and asked to please run tests on me to see what's wrong and to try another medicine, they said no. So, I don't get why people here think I know nothing about hypothyroidism or just decided to do this out of the blue. Or maybe, you think that chronic migraines every single day is something tolerable I don't know.

I tried metavive on my own and got the same side effects, something is clearly wrong.

On levothyroxine I had: intolerance to heat, hot flashes, palpitations, hives, depression, suicidal thoughts, instabil mood, constant diarrhea, constant migraines, joint pains, fatigue, couldn't lose weight, water retention and more. All of these side effects stopped when I stopped taking levothyroxine.

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Mary-intussuception

How much Vitamin D are you taking ? Are you taking any supplements or any other medications?

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greygoose

Those are not withdrawal symptoms - you don't get withdrawal symptoms with hormones, they're not drugs. They are hypo symptoms because your thyroid hormone levels will be getting lower and lower. Why are you doing this to yourself?

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Kailey99
Kailey99
in reply to greygoose

I stopped because my side effects were so bad I couldn't continue, my doctor refused to help me, the ones at hospital refused, endocrinologists refused and no one will look into why I have these side effects. Now I have a new doctor and will get blood tests done in two weeks, her recommendation! I suggested I might have troubles with cortisol. I tried metavive on my own and got the same side effects, something is clearly wrong.

On levothyroxine I had: intolerance to heat, hot flashes, palpitations, hives, depression, suicidal thoughts, instabil mood, constant diarrhea, constant migraines, joint pains, fatigue, couldn't lose weight, water retention and more. All of these side effects stopped when I stopped taking levothyroxine.

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Lalatoot
Lalatoot
in reply to Kailey99

Those are the symptoms of being undermedicated. We are telling you this because we have also experienced them. Some of the people who have replied to you have also stopped their thyroid medication in the past like you and have made themselves ill. I am one of them.

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Kailey99
Kailey99
in reply to Lalatoot

I don't see how I could be undermedicated since TSH reached 0.38 at 125 mcg levothyroxine and the side effects got worse and worse with each increased dose. I had no choice but to stop taking it since no doctor would help me.

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Lalatoot
Lalatoot
in reply to Kailey99

Once our thyroid is damaged and we are on levo tsh is not of much importance. It does not us tell very much. What is important are the free t4 levels and most important of all the free t3 levels. It is low free t3 that makes us feel unwell. T3 is the hormone needed by every cell in our body. When you see the doctor ask for free t4 to be tested and if possible free t3 as well.

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Kailey99
Kailey99
in reply to Lalatoot

Okay, I see from my lab results that t3 has barely increased at all during the entire time I was on levothyroxine. I found the lab tests from august now and they were

ft3 3,6

Tsh 0,43

ft4 17

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Lalatoot
Lalatoot
in reply to Kailey99

Beside those numbers should be numbers in brackets. These are the ranges. They are the reference point for your tests. Each testing laboratory has a slightly different range. For most people they need their free t3 Ft3 to be well over half way through the range. Your Ft3 is only 3.6. This is somewhere at the very bottom of most ranges. I would feel ill with a Ft3 that low. I think it should be at least 5 if your lab range is something like 3.1 to 6.8. Your ft4 at 17 is probably about halfway through the range. My labs range for ft4 is 12 to 22.

Please get back to me if you need any more help. I was like you and it is terrifying.

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Mary-intussuception

Please add the ranges -

However it seems you are not a good converter and need some T3 & maybe a lower dose of LT4 (Levothyroxine )

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Mary-intussuception

You needed FreeT3 testing , you may be a poor converter.

What you spent on Metavive 2 could have gone towards a private blood test.

I doubt anyone on here recommended Metavive - I'd not heard of it till your post . Had to look it up.

You still need to have FreeT3 tested.

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SilverAvocado

Mary-intussuception, Metavive is quite often discussed on the forum and is a good starting point for people who would like to try self medicating, because it's available over the counter.

It is one of a handful of products, Thyro-gold ( developed by Dr Lowe) being one of them, but my memory escapes me for others, that have basically the make up of NDT. They're made from dessicated animal thyroid, but have managed to remain over the counter products by not being specific about the hormone levels they contain. The exact amount of hormone is discussed occasionally on the forum, and it's thought that the basic tablet is the equivalent of around 2 grain of NDT, so these are not Mickey mouse tablets, you can be on a substantial dose of hormone with them.

The original poster didn't do well on Metavive, I think there are two obvious possible explanations:

1) They are one of those unusual people (but we have several regulars on the forum in this position) who struggle with talking any T4 at all and need to take T3-only.

2) Or it wasn't dosed correctly and they were either under or over dosed on it and had unpleasant symptoms as a result.

Edit: I forgot one, as others have pointed out, adrenal problems can make it difficult to introduce any hormone, so this could be a caveat to possibility (1). They may feel much better after treating adrenals.

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Mary-intussuception

Adrenals are supposed to be checked out before starting on Levothyroxine.

Some Endocrinologists arrange a Short Synacthen Test if Levothyroxine hasn't been started.

That's even covered on the Patient Information leaflet.

I'm not on this forum much now but have always mentioned getting Adrenals checked out first in the past.

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SilverAvocado

Mary-intussuception, I'm not quite sure what this is replying to, so I'll answer anyway!

I think you're right that most doctors are probably not doing the adrenal testing called for in patient info leaflets. But even if they are this will be a blood test for morning cortisol (often done incorrectly too, my consultant told me I could go straight out and do it at 4pm in the afternoon). This is not as sensitive as the 24hour saliva test, which is not done at all by doctors.

The blood test is only capable of picking up Cushings or Addison's disease, which are usually auto immune, and not just the exhausted adrenals that tend to accompany being sick for a long time.

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Jnetti
Jnetti
in reply to Kailey99

It's possible to still be undermedicated if TSH is almost zero. Mine was 0.01 on one test and i still had hypo symptoms.

I just remembered though - isnt it true that a problem with the adrenals can make someone unable to tolerate Levo?

If you have both issues that may be the reason.

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Angel_of_the_North

TSH doesn't tell you what your thyroid hormones are doing or how much T3 is getting into cells. In fact, TSH is a pretty useless test as many people with damaged thyroids don't have a pituitary that behaves properly either. What you need to know is free T3 and free T4 plus TPO and TG antibodies

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SilverAvocado

To see whether you are undermedicated TSH is pretty useless. You need to see and interpret the whole thyroid panel, TSH, freeT4, freeT3, and thyroid antibodies if you may have Hashimotos auto immune thyroid illness (almost certainly do unless you became hypothyroid in another specific way such as thyroidectomy).

Doctors are unfortunately total Blockheads with very little understanding of thyroid. Sounds like they were happy to keep you sick, and they have been happy to keep many many of the rest of us sick, too.

This forum is a good place to start if you have thyroid illness and would like to start taking your health into your own hands and getting yourself well.

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Dressagelovr

Perhaps you were on too much. I get side effects when my TSH goes below 1.

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Gem5987
Gem5987
in reply to Kailey99

Sounds to me like you are over medicated especially since your symptoms got better when you stopped. Have you thought about trying a lower dosage? Many people feel best with a TSH of 1 or 2. Also, have you been tested for adrenal insufficiency?

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greygoose
greygoose
in reply to Kailey99

OK, so there could be all sorts of explanations for that, but we'd need to see some lab test results to sort out what was going on.

Not surprising doctors didn't help you sort it out. They just don't have the knowledge. But, all those 'side-effects' you mention actually sound like hypo symptoms. So, perhaps you were under-medicated. How much were you taking? And, which brand of levo were you taking. Honestly, we get posts like this nearly every day, and there's usually a logical explanation. :)

The fact that your symptoms/side-effects disappeared when you stopped levo doesn't prove anything, because that almost always happens when you stop levo. No-one knows why, but it does. But, believe me, sooner or later the hypo symptoms will come creeping back.

So, if you want your problems looked at by people who know more about it all than doctors, give us some more details. But, I'm afraid you're not likely to get much support from people to help you come off levo unless you have a back-up plan - NDT, T3, T3+T4 - because you'd be making yourself very ill. All we want to do is help you. But, I'm pretty certain that what you've been experiencing were all hypo symptoms, and not side-effects of levo. And, it's very doubtful that the nausea will go away, in that case. Sorry.

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Kailey99
Kailey99
in reply to greygoose

No, they were all side effects of levothyroxine, they started with it and got worse and worse with each increased dose. I only got to know my tsh was 0.38 when I went to the emergency room in august, the other numbers I have are from july. I was on 125 mcg levothyroxine and like I said it got worse and worse ever since I started my medication. Again, I tried ndt and the same thing happened, and then Im out of backup plans because no one will prescribe me another medicine. Im trying this new doctor to try and find an underlying cause, like issues with cortisol. Again, please listen to me they were sideeffects of levo.

T3 free 3.7

T4 free 17

TSH 3.1

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greygoose
greygoose
in reply to Kailey99

I am listening to you. And, I know that lots of people say the same thing. And, usually it turns out that they were under-medicated, hade conversion problems, or absorption problems, or nutritional deficiencies or - as you suspect - adrenal problems. Levo just doesn't cause that sort of 'side-effect'.

You haven't given the ranges for those results, but if they're like the ranges we normally see, then your TSH is much too high, your FT3 is much too low, and your FT4 is only mid-range. You were on 125 mcg levo when these were taken?

So, have you been tested for nutrients: vit D, vit B12, folate, ferritin? If they are low, they will cause symptoms, and your boy won't be able to use thyroid hormone effectively.

Have you had your antibodies tested: TPOab and TgAB?

I know you said that these symptoms/side-effects started when you started levo, but that is very common. Starting thyroid hormone replacement can cause symptoms to intensify and new symptoms to appear.

But, you said you tried NDT and the symptoms were the same - before you said it was metavive you tried, well, that's not really NDT, is it, not like Armour. But, if your symptoms were the same, it's not the levo, is it? Levo is synthetic and metavive is bovine. That, rather suggests that, if anything, the problem was not the hormone, but the fillers in the tablets.

There are so many possibilities, but the majority of doctors don't have the knowledge, the time or the interest to explore them. I hope your new doctor will. I hope he knows about the other solutions, like T3 and liquid T4 (no fillers). But, if you ever need extra help, don't hesitate to come back and ask. But, as for your original question, I'm afraid there is no answer. Once again, I'm sorry.

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Mary-intussuception

It seems you are not a good converter - these are Hypothyroid symptoms.

You need T3.

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Angel_of_the_North

Nausea (esp with headache and stomach or backache) can be a side effect of low cortisol. Is your GP doing a short synacthen test?

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ASanders69

I agree with Greygoose - if you feel worse when starting/raising levo, it's usually because you are on too low a dose so basically remain hypo. The problem I used to have back when I was on levo only was that once my TSH normalised, the doctors were happy to keep me on X mcg a day. That was enough to reduce whatever my own thyroid gland was still making (due to the lower TSH), but not enough to raise my FTs to optimal levels. Result? I ended up even MORE hypo after a while. Which is another reason you should be retested 6-8 weeks after raising your dose and not be kept too long on a given dose as long as your free Ts remain suboptimal.

As others have pointed out, yours look lowish, especially your free T3, which would explain your symptoms.

I also agree with what Greygoose said in another post - thyroid hormones are not drugs as such, they simply replace the hormones our own glands are no longer capable of producing. You cannot live without thyroid hormone. If you get terrible side effects, it's not because you don't need it, but because you are kept on too low a dose, meaning your free Ts, especially your free T3, remain too low for complete symptom-relief. Going off thyroxine is NOT the answer!

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Lalatoot

Please listen to what the others are saying. Thyroid hormones are essential for every cell in your body. If you do not make enough you need to take them orally. You will get worse, you will be sick and you can make yourself very ill.

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shaws
shawsAdministrator

We get prescribed levothyroxine as our thyroid gland is no longer functioning by sending out the hormones that keep us alive. We need thyroid hormones and that's why, once we're diagnosed, we pay no more for prescriptions for any other health problem we have.

Hypothyroidism or hashimoto's have to have thyroid hormone replacements otherwise our heart and brain and every cell in our body doesn't have the T3 it needs to enable everything in our body to work optimally. T3 is converted from T4 (levothyroxine) and we have to take it for life. Our heart and brain have the most T3 receptor cells and they are also throughout our body.

The more you learn about hypothyrodism, the better you'll understand that the only way for us to feel better is if levothyroxine at an optimum dose isn't working for you and eventually, to try alternative thyroid hormone replacements. Some used to be prescribed but they have now removed the alternatives from the NHS but could be sourced by yourself but it is a bit early to do this. Your doctor should be knowledgeable but, unfortunately, few seem to know little more than the TSH and if it drops down due to us taking an optimum dose most doctors assume that we've become hyPERthyroid and lower the dose but that's because they're not well trained.

Levothyroxine keeps us alive although some of us don't seem to improve upon it but millions do when on an optimum dose, or changing a manufactuer as sometimes the fillers/binders in levo affect us badly.

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Kailey99
Kailey99
in reply to shaws

I was asking specifically about withdrawal symptoms of levothyroxine, I know you mean well but please I don't need lecturing. I stopped because my side effects were so very bad I couldn't continue, my doctor refused to help me, the ones at hospital refused, endocrinologists refused and no one will look into why I have these side effects. Now I have a new doctor and will get blood tests done in two weeks, her recommendation! I suggested I might have troubles with cortisol. I tried metavive on my own and got the same side effects, something is clearly wrong.

On levothyroxine I had: intolerance to heat, hot flashes, palpitations, hives, depression, suicidal thoughts, instabil mood, constant diarrhea, constant migraines, joint pains, fatigue, couldn't lose weight, water retention and more. All of these side effects stopped when I stopped taking levothyroxine.

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shaws
shawsAdministrator
in reply to Kailey99

I'm sorry if I didn't respond as you expected but I certainly wasn't lecturing.

I myself couldn't tolerate levothyroxine whatsoever and was far more unwell, once I diagnosed myself when TSH was 100, so I have had some experiences that others have never had.

I resolved my problems when I had a trial of T3 added to T4 - at that time it was rare to be prescribed T3. I eventually went onto T3 alone. That's not to say that everyone recovers with T3 although it doesn't need to be converted. It suits me even though the NHS has withdrawn T3 from patients who were healthy and symptom-free.

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Kailey99
Kailey99
in reply to shaws

Like I said, the symptoms were the same when I tried metavive and my GP would not let me try another medicine or look into why I was having these side effects and the endocrinologist won't see me. Something clearly isn't right here and Im trying this new doctor to find an underlying cause.

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shaws
shawsAdministrator
in reply to Kailey99

I do hope you can resolve the problem and I don't know why doctors aren't more experienced. They seem to only look at a TSH result alone. Also they are unaware of any clinical symptoms and how to resolve them.

Could you be 'Thyroid Hormone Resistant' in that your body will only recover with T3 alone?

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Kailey99
Kailey99
in reply to shaws

Maybe, I'm not sure what is wrong here but since I seem to not be converting to t3 maybe that is the case.

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Mary-intussuception

Yes.

That seems to be the case.

Hypothyroid symptoms due to lack of FreeT3.

What dose Vitamin D are you taking?

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Kailey99

none at the moment, how much should I be taking?

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Mary-intussuception

So sorry Kailey, got you mixed up with another poster (Vitamin D ).

Tired! I'm not usually up this late.

You really need to get Vitamin D levels tested (and the others) before starting supplements.

You could have insufficiencies.

You could have other undiagnosed medical conditions.

Have you ever been tested for Celiac disease?

Have you had a Full Blood Count and kidney & liver function tests.

Hope your new doctor fully investigates you.

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Tikaneko

How does vitamin D help?

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Mary-intussuception

It helps if you are found to be defficient as many of us have been.

Best to be tested first.

All nutrients must be optimal.

Adequate Vitamin D is essential also for correct absorption of calcium for bone health. Without enough Vitamin D calcium can go to the wrong places - tissue and blood vessels.

Sorry, I got mixed up with another recent poster who was told by her GP that she had 'low' Vitamin D last year AND was then told by her GP to buy the tablets ! No retesting - 11 months on !

Too much Vitamin D can cause toxicity.

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Jnetti

You need vitamin K and Magnesium too if taking more than 1,000 units a day I think that's the amount). Vitamin K I think is the one that directs the D to the bones. Most doctors prescribe only 800 units, not nearly enough if you are deficient. My D didn't rise much until I took 8,000, but now have dropped back to 4,000. Will test again in the spring.

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Mary-intussuception

Did you mean Vitamin K2 ?

K1 is for clotting blood.

A good place to check for Vitamin D daily maintenance dose (depending on the individuals need ) is :

"NICE guidelines for treatment of Vitamin D deficiency "

Doctors should monitor Vitamin D with retesting.

Adequate Vitamin D is needed for the absorption of Calcium.

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shaws
shawsAdministrator
in reply to Tikaneko

Before you supplement with any vitamins/minerals I'd advise to get them checked because you don't want to supplement if you don't need to. You also want to know if any are deficient.

You need B12, Vit D, iron, ferritin and folate. You also need a Free T4 and Free T3 blood test and, and thyroid antibodies if you've not had them in the past. If you're in the UK these are rarely tested. Both frees need to be towards the upper part of the ranges.

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shaws
shawsAdministrator
in reply to Tikaneko

Vitamin D is a pro-hormone and esssential for our good health.

vitamindcouncil.org/about-v...

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Mary-intussuception

If you are in UK the only person (as far as I know) who the Laboratory will test FreeT3 for is an Endocrinologist. Otherwise NHS won't test FreeT3. This is serious neglect, a serious injustice that all of us with Thyroid disease suffer.

However - you have been tested and it is low.

I would discuss this with the new GP. Ask your new doctor to find an Endocrinologist who will prescribe T3. Can your doctor prescribe it ?

Are you in US or UK ? I wondered as you mentioned ER not A&E.

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Jnetti

My GP/hospital lab will test for T3 but not very often. But this is Wales, not England. Maybe it depends on the local Health Authority

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Mary-intussuception

Wales labs won't test for GPs (not were I am).

GPs Blood test requests ignored and only TSH tested.

A first time investigative blood test GP request will have TSH and T4 tested. But Hypo monitoring, just TSH. Even if each test listed by GP following patient reporting symptoms.

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Lora7again
Lora7again
in reply to Kailey99

Have you tried Thyroid S? I have purchased it from Thailand it was delivered by my postman and took 10 days. Some of the members will tell you how to obtain it if you ask. It might suit you better than artificial thyroxine.

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minkjaere
minkjaere
in reply to Kailey99

Hi,

I am sorry with how you feel. This illness we have is really not easy.

I also have strong side effects with meds. I have Grave's and have to take levothyroxine (hormone replacement) and neomercazole (to block). I need to take 25mcg dosage of levo but my body couldn't take it. I was very dizzy, no appetite, nauseated. So what i did, i have to cut 1 tablet in 4, and take each part every 8 hrs. So in essence, i was taking still 25mcg in a day but actually it was 6 mcg every 8 hrs. This worked for me. Some people are just different. Some can take the high dosage with no problems, some, like me can't. However i am afraid to recommend you to do the same since i am not a doctor, and don't have much knowledge as some people here are. But maybe you can discuss this with your doctor? I had discussed this with my dr first before i had done it.

Hope you feel better soon and find a good doctor to help you.

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Lora7again

I have stopped taking both levothyroxine and NDT cold turkey and felt no side effects but some people will have symptoms so it is better to reduce your dose gradually. I have Graves' so sometimes I have too much thyroxine in my system and other times not enough. I usually go by how I feel. At the moment my TSH is 0.70 and I feel ok except I am not sleeping more than 6-7 hours a night but I have always needed less sleep than other people.

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Regx

Wen I tried getting off the meds I saw a slight change (enlargement on the thyroid out side-"neck") so I just went back to them and the size has normalized again.

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Jnetti
Jnetti
in reply to Regx

It's only in very rare special cases, such as during pregnancy, malnutrition or if an infection triggers problems, that someone with low thyroid hormones can recover without supplementing

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Leharv

I've been on levo for 10 years, as high as 200 mcg. Two years ago after suffering pe and snapped tendon, both associated with thyrotoxicity, I started to self treat. Raging thyrotoxic symptoms have now gone due to me weaning myself off levo. Now down to 25mcg, dependant on weather, seasons, outside temps. Its a symptoms led approach backed up with daily observation of body temperature, aim for 36.5c underarm and heart rate. Taken me a year after a year recovery from overdose by medics. Still like walking a tightrope matching dose to requirement.

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Mary-intussuception

Underarm temperature of 36.5 is actually = 37.5 and too high.

Temperature taken under tongue is as read , but underarm add 1.

Normal temp 36.5 not 37.5.

ps

Were you on 200mcg for 10 years without annual tests?

Shouldn't testing be at least annually after becoming stable - More if symptoms present ?

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Leharv

All I can say is the advice I have found is that normally temperature is 37c and you knock off half a degree for underarm and at that temperature symptoms subside. They begin to return when underarm reaches 37c, not everyone is the same.

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Mary-intussuception

The easy test surely is to take underarm temp then under tongue?That's what I did when GP told me the difference. (I'd reported 33.9 temp but had forgotten about adding 1 ! So temp was actually 34.9).

Testing both one after the other proved her correct!

When I have Hypo sympyoms I check my temperature, which is usually around 35.1 to 35.5.

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Leharv

My problems began on treatment after diagnosis. On diagnosis my ft4 was non existant and tsh unrecordable as so high. Treatment was far too timid to the point where it took 18 months to achieve a blood test in range. In this time I developed heart failure and put on two stones in weight. The gp's who must have felt were up to the job of treating me instead of sending me to a consultant, later said I was type 2 diabetic because of one raised blood sugar result. Knowing now that this was in fact due to a prolonged hypo state, I disagreed and the adversary relationship established itself. Gp's determined to treat me for type 2 and high cholesterol which I refused, adamant my problems were all thyroid based. The dose at which they settled was 150 mcg but as I have a strenuous occupation, sometimes exposed to the elements I needed to take 200 mcg for short periods. After four years I asked to see a consultant, after two years of his care dose was settled at 150mcg t4. I was then discharged with a tsh of 0.06 and became worse and worse until I eventually suffered an unprovoked pe and snapped tendon both of which can be attributed to an being left in an acute thyrotoxic condition, many studies confirm this now. I resolved to take charge of my own care . Two years later I am in control of my own medication, the dose required being strictly aligned to the outside temperature. On balance I would say I have been overmedicated by anything from 50 to 125mcg per day, this being under the so called care of the professionals. I am a plumber, I take better care of my customers than these people have done for me.

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Mary-intussuception

I can relate to that - taking care of your customers better than the NHS cares for its patients .

The high level of neglect of Hypothyroid patients I find both worrying and shocking.

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SlowDragon
SlowDragonAdministrator
in reply to Leharv

As someone working in strenuous occupation on such small dose of Levothyroxine you are likely under medicated

High dose Levothyroxine can lead to low FT3. Its low FT3 causes most symptoms

Low vitamin levels are extremely common when hypothyroid

Levothyroxine dose should be constant, not changing all the time

Getting full Thyroid and vitamin testing after 6-8 weeks on constant unchanging dose of Levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Many people need the addition of small dose of T3

Getting vitamins optimal first is essential

High cholesterol is linked to being hypothyroid, especially low FT3

So you might want to test cholesterol

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sroth2407
sroth2407
in reply to Leharv

Leharv, I am going through something similar as you after being severely overmedicated by a doctor for almost a year last year. There are no words for how bad this has been. I actually steps down to no meds at all January 1 of this year so I am 9 months into recovery so to speak. my doctor says it's 6 to 16 months to get through this. I have started feeling extremely hypo the last month and I'm considering asking doctor for just a low dose of Synthroid. My blood shows I am in range but barely in range could be much better. Did you find as you were recovering you're hyper symptoms sort of switched over to hypo? And did you have a mix of better days and bad days? Did you have any special kind of testing other than just regular labs? I would love to know what's going on in my cells! I go for a few days and feel okay and then days I can hardly get by fatigue aches, head pressure and headaches, just feeling miserable. Very comforting hearing someone else has gone through this.

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Leharv
Leharv
in reply to sroth2407

It took me a full year to recover from the treatment I received even under the care of an NHS consultant who found fit to discharge me with a tsh of 0.06. This caused much distress. I now, after a further year of struggle have a rough rule of thumb which I have found to keep myself able to walk the knife edge between hypo and hyper symptoms. Instead of being discharged on a dose of 150 mcg all year it is something like this. Outside temp 20c, no medication required. Down to 16c 25mcg will suffice. Down to 12c outside temp, 37.5mcg is enough. I intend to keep dose below 100mcg if possible over the winter. This arrived at going off the underarm temperature and the whole range of symptoms experienced. Just to say I have over the last ten years I have experienced swings between hypo and hyper states, the latter being the most demanding to live with. Unfortunately this year with the widely and frequently fluctuating outside temperatures the drawbacks of t4 only treatment are highlighted especially in trying to achieve a euthyroid state when cutting the dose when considering the long half life of t4. Most gp's don't understand or even listen to these concerns and are keen to attribute your difficulties to something or indeed anything else. This is understandable however given the time and effort I have had to put in myself to understand the processes going on.

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sroth2407
sroth2407
in reply to Leharv

Leharv, thank you for this extremely helpful insight. You certainly sound like you have figured out what works for you. I have learned in the last year as I'm working through the over medication how critical it is to watch temperature and pulse pressure but I have never considered outside temperature so that is all very interesting. Thanks for taking time to explain your process to me very very much appreciated and I will start taking into consideration outside temperature as well.

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Leharv
Leharv
in reply to sroth2407

Depends on the extent to which you can mitigate the degree to which you are affected by outside temps. Doctors might say if it's cold, wrap up and keep yourself warm if you can believe that. Many of us now live and work in temperature controlled environments. The thing with t4 is it can't deal with rapidly fluctuating outside temps such as we have experienced this year. Consider, it's cold one week and you settle on a dose to suit. The following week it could be 10c warmer. Now you find yourself overmedicated, overheating and due to the long half life of t4 it will last a week until you can readjust the dose. Then what happens, it gets cold again and the pathetic cycle continues. The doctors don't tell you this, even try to ridicule you. What are you supposed to do, wear no clothes to cool down when you're thyrotoxic. They don't understand this but it's so simple when you consider the body must be kept as close to 36.5 as possible and needs sufficient hormone to convert our nutrition into energy to do the job. When you are exposed to the elements consider the difference in requirements when one week temperatures could be 10c and another week 20c.

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Leharv
Leharv
in reply to sroth2407

It's like walking a knife edge, people need to understand the potency of t4. I can ask for a blood test when I want, however I can determine when I am euthyroid going off symptoms, body temperature and heart rate / stability. To achieve that now I find it necessary to split tablets to give the option of 12.5 and 32.5 mcg which over a couple of days can have a dramatic effect.

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genileris

I cannot tolerate Levo either with similar side effects as you described but have found Naturethyroid a godsend but it took a while to get the dose right and I am very sensitive to any dose adjustment. I also had to modified my diet to remove all grains, dairy and I am sensitive to preservatives and additives so I stick to fresh, organic fruit and vegetables and sometimes fish. I’m sorry you are having such an awful experience. I had migraines that cause vision disturbance and vomiting.

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katielou1980

I had horrendous headaches to the point where a neurologist kept injecting nerve blocks into my skull and even that didnt help. I did a lot of work with an endo and a natural doctor. I went gluten free (make a huge difference to my antibodies), vitamins, b12 is key and also selenium which supports thyroid function.... If you have hashimotos you can have both hypo and hyper symptoms at the same time... Completely stopping your medication won't help. Have you tried looking at diet and supplements... Look us Isabella Wentz and also leaky gut as all linked.... I had loads of additional side effects I'd never had before levo Inc panic attacks in my sleep and horrendous anxiety but I now feel my symptoms are more manageable and my levo has stayed aslt a stable dose for 4 years.... Please seek alternative options. I get the GPS really don't get it but some nutritionists can really help.

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coldham43

What brand of Levo do you take I've found I can only take on brand others make me ill as you describe.

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Lovecake

Definitely worth getting your vitD tested. If it’s low, that could be a contributor to your migraines.

My vitD was down at 21 (range 50-199) when finally tested.

My migraines became less frequent and less severe once my level was over 80.

I have to supplement continuously (as do many other with thyroid issues).

I find either the sublingual spray from BetterYou or a liquid capsule the best to absorb.

I hope you get sorted very soon, sounds dreadful what you are going through.

My GP tests my level once a year.

You can also test at home it costs about £30

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Teras
Teras
in reply to Lovecake

Of your vit D is low, and you had radioactive iodine treatment, get checked for hyperparathyroidisn.

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Lbstyle

I'm not sure if someone has mentioned this, as it's a long thread to read through...

But I felt really awful on levothyroxine and they thought I was being overmedicated.

My symptoms were- palps, chest pain, throat tightening, hot sweats.

I soon realised by this forum and chatting to others that I was allergic to some of the fillers in the brand of Levo I was prescribed. I did an experimem, I took a antihistamine before the Levo and surprise surprise I didn't have these awful symptoms. I had been forcing myself to take Levo in order to make myself better but giving myself extreme allergic reactions daily!

I spoke to my pharmacist and asked to if I could try a different brand and I didn't have this reaction. Slowly I could now increase my Dose and try to get my thyroid under control.

I compared the ingredients of those I was allergic to and those I wasn't and realised it had acacia in it, which comes from a tree, and I have hay fever so

It kind of made sense xx

Anyway I hope you get to the problem of

Your issues and get better soon xx

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Beani2

Hi kailey, not a good idea coming off your Thyroxine without talking to your GP. I did it for 4 months and it was awful ,lack of energy, body bloating especially the face, pail skin , not hungry body organs slowing so far down I could of given my self a heart attack. Unable to do exercise ,feeling depressed,suicidal, headaches. I'm so glad I'm back on them ,I never ever will stop them again.

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kinglouie

Hi Kailey99 - I just spent an hour describing my experience and posting a reply but it seems to have vanished, in short though. Trust how you feel, the doctors try to look like they know what they are doing but they are all just guessing.

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Thyroidhope

Kailey,

I have gone off my Levo before and it wasn't a good idea. My symptoms were nausea, cramping/tight muscles in my forearms, calves,and temples. I also experienced heart palpitations. If levothyroxine is making you feel bad you may want to try Armour, WP, NP, or Nature Throid. I feel a lot better now that I have the proper dosage and I switched to WP thyroid.

Best wishes!!

1 like
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Jnetti
Jnetti
in reply to Thyroidhope

"cramping/tight muscles in my forearms, calves,and temples"

That's interesting! I'm not too much undermedicated now but sometimes wake up feeling as if my head or even my brain has kind of gone stiff!!! Weird I know. My brain is still working but the thoughts feel as if they are running around like a hamster in a tight cage.

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Thyroidhope
Thyroidhope
in reply to Jnetti

It's awful. I did get a puffy face and sometimes hard to swallow food without water. Also liver enzymes go up and your breath will smell strange.

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Foxtrot89

I hope this helps you...I’m sorry to hear how bad you feel!

My boyfriend stopped his levo for at least a few weeks and started feeling awful. He had a croaky voice, had to sleep for 12+ hours, put on weight (when usually he can eat loads and stay the same), really fatigued, bit depressed.

I can sympathise with you. Really sorry to hear that taking thyroxine makes you feel worse. I have only ever taken Metavive I and it helped me immensely when I took one capsule (15mg) and even better with two (30mg).

When I progressed to 3 I felt amazing the first day then SO BAD within 3 days. Sweaty without exerting myself, short tempered, dizzy etc. etc.

After stopping everything for a few days I resumed at 1 Metavive but also taking it alongside Thorne’s adrenal cortex 50mg supplement.

I can’t remember exactly how much adrenal cortex I took (I’d have to check notes but never more than 4 a day).

Gradually increasing adrenal cortex before increasing Metavive I found further benefit from 2x Metavive than I had the first time round, so had no need to increase to 3.

I am definitely not a doctor but just sharing my experience in case it may help you in any way at all.

This may or may not be the issue for you. Ensuring all vitamins required for good thyroid function and T4 to T3 conversion may help you too, as there’s a chance the T4 (levo) is making you feel worse as it’s just circulating around aggravating your body while not converting properly.

I hope that you find some answers to help you on the road to better health soon.

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Teras

If you need thyroid hormone because your thyroid isn't working, you can't just stop taking it. That's an essential hormone,. You could try lugol's solution to see if that helps an underperforming thyroid.

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Tiddlymouse

Hello Kailey99,

I have just been reading your post and some of the replies. I have also prescribed 125mg Levothyroxine. I have 8 of your symptoms plus some more. I posted some weeks ago due to feeling very unwell on Levothyroxine. I was told I am under medicated. I am saving up some money to get a private test. My Doctors seem to be ignoring my thyroid. I was at my Drs earlier, but I was trying to get treatment for another matter. I am afraid I got rather emotional because my whole body seems to be badly letting me down. I get very depressed and feel like not bothering anymore. But I have found support on here and lots of advice. I did at one point stop my Levothyroxine for 3 days before I posted on here. And yes I do know how harmful it is. But constantly feeling unwell and sleeping very little for months on end is not only draining, but I am doubting my sanity.

I am not a expert like some of the others on here. I just want you to know you are not alone. I feel the same, I want answers. For a long time, I have felt these tablets do not get rid of the symptoms of an underactive thyroid. I also want them to make me well. My doctors don't test for T3 or any vitamin defincies. One thing I have got is very brittle nails. They break daily. I also have migraines. Not every day, but at least 3 a week, some lasting all day despite taking Sumptriptan. I can see yours are worse. It totally wrecks your life. I rarely had any headaches before I started Levothyroxine. My usual response to bad medication is to stop it. But a DR told me years ago if I didn't take them tablets I would end up deceased. But I was so depressed at the time, I really didn't take much notice. But I still remember what he said.

I hope your new DR will make a difference and find out what is wrong and put it right. I have heard that some people are allergic to Levothyroxine and have to have a different drug that is more expensive.

Take care.

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Lovecake

Oh my! I can empathise with the migraines.

Have you ever tried magnesium? It can help with sleep and migraines.

You need to look up the different sorts of magnesium as some are not as good as others. (Eg cheap supplements). I find the magnesium sleep lotion from BetterYou v good. It also means it doesn’t interfere with taking any thyroid meds. But also the tablets from the autoimmune institute are good (and a good size to take).

Plus vitamin D - try and get the level checked - if it’s low (even low in range) it can have an effect on your migraines. Worth an ask at the GP?

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Tiddlymouse

Hello Lovecake,

I wasn't expecting any replies to what I said to Kailey99. I was concerned that she had given up and trying to let her know that some other people are having the same problems. And they are real. Except I am not stopping my Levothyroxine. I now take it at about 6.30 am. Completely away from all food, liquid and other medication.

I take Magnesium daily and vitamin D. Unless it is very sunny and I am out in it. I believe most of my vitamin levels need looking at, especially iron. I am trying to look for more none, NHS remedies. I am finding most of the medicine I am given is doing more harm than good. Such as Pregabalin and Amtriptan. A neurologist tried to get me take Proporal. I am afraid I don't know the correct spelling. It's a beta-blocker I think. He should know that that drug must not be given to patient s with asthma. I wouldn't take it after reading the leaflet and seeing that. It is quite a dangerous drug.

I have made a note of that magnesium you mentioned. Thank you for suggesting it. I will look for it online. I have tried two of my GPs out for the moment. But I am planning on getting various tests done. At the moment I am been pestered by my medical practice via text messages, to get a liver function test and a flu jab. Until they test my thyroid I will not be having any blood tests.

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Rudy1

Kailey99- I really wish I could talk to you. I also stopped taking Levothyroxine because I knew it was making me sick. I had to start taking it again when my hair started falling out. I felt great not taking it. No doctor could help me and thought I was crazy. I finally saw a holistic dr and he saved my life. It wasn't the Levothyroxine but I had severe inflammation and my vitamin levels were all out of wack so I couldn't tolerate the medicine.

I'm on Omega 3, Magnesium, Vitamin D, CBD oil. He tested my Cortisol levels throughout the day and I had low DHEA but those two were causing me to not sleep at night. Not sure if these two have any correlation to my problems with Levothyroxine. My symptoms were not as severe as yours but I was very sad feeling and tired all the time. I couldn't workout because my joints and muscles hurt so bad.

I'm in the US so I hope you can find a functional medicine dr or holistic dr to help you. None of the traditional drs that I saw would have ever helped me.

Good Luck. ❤️

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