Too much levothyroxine? : Anyone familiar with... - Thyroid UK

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Too much levothyroxine?

Rabbitbiscuit
Rabbitbiscuit
18 Replies

Anyone familiar with the symptoms of too much levothyroxine? A year ago I was prescribed 25mcg per day as I’m trying to get pregnant and they want my TSH to fall to between 1 and 2. The doctor said it wouldn’t be high enough to have much of an effect but after 3 weeks I went from a TSH of 3.94 to 0.08. During that time, I was exhausted, felt depressed, couldn’t sleep, my muscles were uncomfortable, I had a muscle spasm in my back, my eyesight was becoming blurry and my hair started falling out. Could that be related to the levothyroxine? A year later, another GP is trying again. This time I’m on 25 mcg every other day. Again I’ve been told this won’t have an effect. But after 2 doses my TSH went from 4.2 to 3.6 and after a month it was down to 2.4. It’s been two months now and I’m struggling to sleep, I’ve my skin is very dry, my hair is falling out again, I’ve had another muscle spasm in my back, and my eyesight is blurry again. Is this normal? I feel terrible but at the same time know that I have to stabilise my TSH if I want any chance of getting pregnant. Any advice or thoughts greatly appreciated!

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SlowDragon
SlowDragonAdministrator

Standard starter dose is 50mcgs Levothyroxine. Taking too little can turn your own thyroid hormones down, as TSH drops, but too small a dose replacement means you end up more hypothyroid

The aim of Levothyroxine is to increase the dose slowly up from starting dose of 50mcg. Dose is increased slowly in 25mcg steps upwards until TSH is under 2, (many need it under one) and FT4 is in top third of range and FT3 at least half way in range

Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

NHS guidelines including what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

nhs.uk/medicines/levothyrox...

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 Thyroid antibodies are raised

Bloods should be retested 6-8 weeks after each dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Low ferritin can cause hair loss

TTC

verywellhealth.com/infertil...

Pregnancy guidelines

thyroiduk.org.uk/tuk/about_...

gp-update.co.uk/files/docs/...

See pages 7&8

btf-thyroid.org/images/docu...

Screening in pregnancy

eje.bioscientifica.com/view...

4 likes
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Chippysue

First of all it is not the tsh that you need to be looking at.

Do you have positive thyroid antibodies ? Have you had both types of antibodies tested?

How is your B12, folate, D and ferritin?

I would research before taking levothyroxine, if I had my time again I would never have taken it to start with.

Is it Teva by any chance? Many people have had a reaction to this because of the nasty fillers.

Please look at Dr Izabella Wentz website and her books of how she no longer has debilitating symptoms of hashimotos. Lifestyle and nutrition changes make huge improvements, whereas doctors are just taught to prescribe pharmaceuticals.

Pre pregnancy it’s not about your tsh being altered by a drug, it’s about taking folate (not folic acid) and nutrition for both parents.

A homeopath or nutritional therapist would be able to guide you.

Whereabouts in the country are you?

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JOLLYDOLLY
JOLLYDOLLY
in reply to Hidden

Hi reallyfedup123,

You have explained everything perfectly - I know my ranges are what you have described. My TSH (ha ha)can range from 0.09-4.57 but that does not worry me. I have been on meds all my life. Currently on 200 mcg of T4 and 20 mcg of T3. The T4 is what I call my natural dose but one silly GP dropped me to 75 mcg and that is when everything started going wrong. But now on original dose, plus the T3.

Never had a problem with fertility, until they dramatically reduced my dose and then the problems started, resulting in miscarriage.

I can't tolerate Teva either.

Take care :)

1 like
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Hashihouseman

First I should say that I’m not a woman and therefore not trying to get pregnant and do not have experience of that hormonal paradigm, however I have had consistently bad reaction to levothyroxine over several years and my general conclusion from all these experiences and many blood tests and keeping detailed diary of symptoms and doses et cetera Is that if we are anywhere near our point of balance even small amounts of thyroxine can tip us one way or the other. And, TSH response to thyroxine is highly amplified and can significantly affect the overall balance of thyroid hormone metabolism. Obviously I cannot comment on whether your TSH levels are significant in relation to pregnancy issues but, although TSH between one and two is a normal healthy value your normal healthy value may well be different even if less likely. I found that I cannot tolerate levothyroxine without a very small amount of liothyronine, T3. Maybe you would have some better understanding of your thyroid status if your blood test always included TSH free T4 and free T3. And yes the symptoms you describe being on levothyroxine are horribly familiar to me. Overall after reading your post I can’t help wondering why you need to fiddle about with your thyroid hormone status at all? Perhaps it is a red herring in the other issues you are concerned about. And a better understanding from more comprehensive thyroid function tests would perhaps shed more light on all this for you.

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magsyh

I discovered the hard way what too small a dose can do to you. I've had a few attempts with levo and always ended up worse than I started. My doc said I was on too much because TSH was so low and made me reduce even further. I had severe hypo symptoms ended up in an ambulance, heart racing at 170! The ambulance driver said I think you need to increase your thyroid tablets. The hospital said no no you're hyper! Idiots I was safer listening to the ambulance driver! I'm now attempting it again this time wiser and with NDT.

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JOLLYDOLLY

Hi Rabbitbiscuit,

The 25 mcg is what extra they normally give you when your have been diagnosed and already pregnant.

As others have explained, you should be on 50 mcg minimum with regular blood tests and adjustments until you are at the right dose for you. You appear to have the classic symptoms of under active thyroid especially with tiredness and hair falling out. The back pain and spasms are horrendous.

In order to get pregnant, you need to have everything checked including your ferritin and folate levels. Your iron levels are equally important because you will need at least the folic acid initially.

When everything went wrong for me, due to a GP reducing my meds dramatically (have been on them always), I started having gynaecological problems and several miscarriages - so was referred to a gynaecologist , who did all the relevant tests and told me that my thyroid was completely out of kilter. (which I already knew) She then referred me to a Endocrinologist, who helped me back to sanity and being on the right thyroid medication.

I think you need to seek a second opinion my lovely and get referred, as is your right. You need to be at the right level of thyroid hormones in order, not only to be healthy but also be able to get pregnant and be healthy through the pregnancy and for your future baby.

Take care and keep in touch.

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Rabbitbiscuit

Thanks, Jollydolly. I’ve been feeling like something isn’t quite right and now it all makes sense. The GP hasn’t really been doing very much and from everything everyone has says, it looks like it’s not been handled properly at all. They’ve barely tested anything at all, just TSH and, after I requested it, thyroid peroxidase. I’ll ask again for a referral to and endocrinologist (I was refused last time!). I’m really struggling to get pregnant (for various reasons) so want to make sure everything has been investigated.

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SlowDragon
SlowDragonAdministrator
in reply to Rabbitbiscuit

Getting full Thyroid and vitamin testing is first step

Vast majority of patients on here do this privately as NHS refuses to do FT3 or TG antibodies if TPO antibodies are negative

Obviously good vitamin levels, especially folate and B12 are essential for baby's development too

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SilverAvocado

This is an unusual story, and I'm not sure I've heard anything like it on the forum over several years. You describe TSHs as high as 4.2, so that indicates a thyroid problem. In a healthy person it would be between about 0.8 and 1.8, and anything above about 2.5 indicates something is wrong.

But you have been on a miniscule dose. As others have mentioned, 50mcg of Levothyroxine is a starting dose, and you've been on doses as low as 12.5 mcg a day!! It's possible this is because doctors don't think your TSH is high enough to diagnose you as hypothyroid, but are just giving you a little extra because you're trying to get pregnant (there are more generous guidelines for those trying to conceive and in pregnancy). But I don't think that approach makes much sense. An obvious thing to try would be to go into 50mcg and see if you feel any better on that, as that is the usual best practice and why mess with it?

The other big point is that all you've got is TSH blood tests, and that is not very informative. Unfortunately many doctors know next to nothing about thyroid and will diagnose and dose using TSH alone. But really it's just fumbling in the dark. A full thyroid panel consists of TSH, freeT4 and freeT3. The two frees tell us how much hormone is actually in your blood. TSH is just a chemical messenger made by your brain to tell your thyroid to produce more hormone, and it may be wrong or a bit strange in various ways.

Because something strange is going on, I'd recommend getting vitamin testing as well, folate, ferritin, Vit D and Vit B12. You just need to see as much info as you can to get to the bottom of this. There's no point even trying to figure it out from TSH alone.

If you can't get your GP to do these tests, you can get a mail order finger prick test from Bluehorizon or Medichecks.

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Rabbitbiscuit

Thanks, all. This all makes much more sense.

Another question, what would happen if I stopped taking the 25 mcg? Would I return to my pre-levothyroxine self? I feel like the random and inadequate tests that have been done haven’t really given an accurate picture of my situation so I’m wondering if it’s better to start again (if that’s possible).

Also, I did have one test for thyroid peroxidase and it showed my antibodies are abnormally high (about 100iu/mL) but how much would this be due to the wrong dosage of levothyroxine and how much an indicator of something worse?

I think I’ll aim for an endocrinologist referral.

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SlowDragon
SlowDragonAdministrator
in reply to Rabbitbiscuit

If you have high TPO antibodies this confirms that you have autoimmune thyroid disease also called Hashimoto's

So you definitely need starting on 50mcg Levothyroxine

TSH is very unreliable when we have Hashimoto's because levels are hoping about all over the place.

Low vitamin levels are EXTREMELY common with Hashimoto's

Ask GP to test vitamin D, folate, ferritin and B12

Come back with new post once you get results and ranges

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

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SilverAvocado

In terms of biology, there aren't any adverse effects from stopping 25mcg. A drop of 25mcg is a reasonable reduction to make, so it should be fine.

In terms of doctor and treatment management, the issue would be if you stop taking 25mcg, you then can't move onto 50mcg later, and definitely can't move onto 75mcg, or tune the dose further and find you need something in-between, try T3 one day, etc. Unfortunately this treatment is very slow moving, and its necessary to jump through the hoop at each stage in order to try out the next dose.

If you had no symptoms at all at diagnosis and feel like you don't need hormone replacement then not starting treatment at this time could be an option. Although I usually suggest giving thyroid replacement a really good go before deciding it is worse than the alternative, that means adjusting the dose a few times, and ideally having a trial of 3-6 months.

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Debimmm

Hi, I too had blurry eyesight, gp suggested eye test, optitian explained to me there are two muscles at the back of the eyes that lose strength when thyroid goes funny and this causes the blurred vision. Hope this help a little xx

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Jasp6

I also started on 25 mcg levo following a fertility treatment workup that showed a tsh of 3.8 and raised antibodies. My tsh only dropped a bit. I cannot remember now whether the levo was then increased to 50. I will never know for sure whether thyroid treatment was the key, but I subsequently had 2 out of 3 successful ivf cycles following several years of failed treatment. I don’t recall too many symptoms at the time except slightly lower energy levels. I am now several years later and have recently been less well with many of the symptoms you describe of muscle ache/tiredness, blurry vision, sleep problems and fatigue. In my case my bloods showed i was under-treated and have since increased to 100 mcg. Hope this helps.

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Rabbitbiscuit
Rabbitbiscuit
in reply to Jasp6

Thanks, Jasp6! This is really helpful to know.

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Saluda

Hi Rabbitbiscuit,

Although it won't be of much practical help to you, I'd like to share my experience with you and others re thyroid and levothyroxine.

I think it perfectly illustrates the unpredictable and quite enigmatic nature of those issues.

I was recently put on 25 mcg of levo following the blood tests results of TSH of 3.75mu/L (reference range 0.27-4.20 mu/L) and thyroid peroxidase antibodies of 78 iu/ml (reference range 0.00-24.00 iu/mL).

Right now off the top of my head I can't remember my free T4 level precisely, but it was measured as well and fell within the lower end of the normal range.

After 4 weeks of the replacement therapy the results of TSH remained to my very big shock at exactly the same level of 3.75!

And I not only thought but was convinced that I would react to the tablets the very same way as you did,i.e. that my levels of TSH would fall dramatically in a very short period of time even on that low dose due to my parametres.

For that reason I actually refused to be retested in 6 weeks' time and instisted on 4 weeks' check-up to avoid the hormone overreplacement and going over the edge to the other side which I was 100% sure would happen to me.

To find out that there was no change in my levels during the 4 weeks' time left me so dumbfounded that I had to have the results printed out right there and then to believe the doctor! :-)

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Maikelbruce

It’s definitely the medicine. I had the same symptoms and it’s not a great feeling. Try to hang in there!

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