How long side effect of Levothyroxine will end? - Thyroid UK

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How long side effect of Levothyroxine will end?

TanHokLie profile image
28 Replies

I was diagnosed with hypothyroidism by a doctor and was given 100 mg of levothyroxine (Ethyroid), but the side effects were dry eye, floater, sensitivity to reduced light, hot eyes, painful eyes, etc.

I want to ask how long this side effect will end?

Thank you to anyone who can enlighten me.

God bless you

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TanHokLie
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SlowDragon profile image
SlowDragonAdministrator

Can we have more information

Starting on 100mcg dose is quite high. Normally it's at 50mcg and retesting bloods after 6-8 weeks with slow increase in Levothyroxine by 25mcg steps upward as body adjusts over several months

Do you have results and ranges from before starting on Levothyroxine

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

TanHokLie profile image
TanHokLie in reply to SlowDragon

Hi SLowdragon

I got Total Thyroidectomy Surgery on July 26, 2018 due to hyperthyroidism.

After the surgery, the lab results on August 2, 2018, show:

Hb = 12.2 (standard 13.1-17.2) = below

Ft4 = 27 (standard 10.6-19.4) = upper

T3 = 0.75 (standard 0.92-2.33) = below

Tshs = 2.38 (standard 0.25-5)

Sodium = 129 duplo (135-148) below

Potassium = 4.5 (3.5 - 5.3)

Calcium ion = 4.2 (4.6-5.2) below

The doctor gave a dose of Eutyrox = 100 mg, but after 7 days, I felt palpitations, rapid breathing, restlessness, lack of concentration, slightly sore eyes, then the doctor changed to 50 mg.

After 3.5 weeks, I felt pounding, absent-minded, nervous, sleepless, weak, the lab results on August 27, 2018 showed:

Hb = 12.1 (standard 13.1-17.2) = below

Ft4 = 16.73 (standard 10.6-19.4)

T3 = not check-in

Tshs = 12.76 (standard 0.25-5) = upper

Sodium = not check-in

Potassium = not check-in

Calcium ion = not check-in

Then the doctor converts Eutyrox = to 100 mg. After 3.5 weeks, I felt pounding = another pounding, anxiety, lack of concentration, shortness of breath, hot eyes, pain, a floater in my eyes, lack of appetite etc. The lab results on 19 September 2018, show that

Hb = 11.8 (standard 13.1-17.2) = below

Ft4 = 25.8 (standard 10.6-19.4) = upper

T3 = not check-in

Tshs = 3.33 (standard 0.25-5)

Sodium = not check-in

Potassium = not check-in

Calcium ion = 4.4 (4.6-5.2) = below

Vitamin d = 18.5 (<= 20) = deficiency

the doctor changed the dose of Eutyrox = 75 mg, and I just tried 3 days, hopefully there will be a change.

I got info about the side effects of levotiroxine at drugs.com/sfx/levothyroxine...

So, maybe there is advice from anyone who can make me better.

thank you

God bless you

SlowDragon profile image
SlowDragonAdministrator in reply to TanHokLie

Guessing you are not in UK?

Your vitamin D is presumably measured in ng/ml (UK units are nmol)

Your level is extremely low and must be improved by supplementing. Has Doctor prescribed loading dose?

Calcium levels will rise naturally as vitamin D improves

Thyroid hormones need good vitamin levels

Presumably you had Graves' disease

Like Hashimoto's, Graves is autoimmune, they both affect the gut and can lead to low vitamin levels so important to test folate, ferritin and B12 as well

Links about Graves, Hashimoto's and gluten connection

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

The aim of Levothyroxine is to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range

This can take fine tuning, dose needs increasing slowly, 25mcg at a time and then waiting 6-8 weeks before retesting

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Getting vitamins optimal is essential too

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription

As others have said, after thyroidectomy you may find you need addition of small dose of T3, but getting vitamins optimal and Levo dose correct plus gluten free, are first steps

Levothyroxine is T4 and must be converted into T3 before we can use it. Some people need a small amount of T3 as well

TanHokLie profile image
TanHokLie in reply to SlowDragon

Yes, right, I am in Indonesia,

The doctor gives a dose of Levotiroxin of 75 mg and 1000 micrograms of Folat, calcium 500 mg and Vitamin D3.

My doctor didn't tell me whether I had graves or not. And if there is pain leading to the disease, I might be told to check the lab again.

How do we know that Levothyroxine (T4) has been converted to T3 before we can use it?

Are there practical tools or instructions for that?

Thank You

Frances0008 profile image
Frances0008 in reply to TanHokLie

The body is meant to convert t4 to t3 by itself. But in some people, like you, it doesn’t happen as much as it should, which results in low t3. T3 is the active hormone, which gives you energy. T4 is a storage hormone, and it’s role is to be converted into t3. But having extremely high levels of t4 above range isn’t good for you and could be giving you side effects. And since your body isn’t converting it into t3 it’s not very useful for you either. You need more t3 and less t4.

Frances0008 profile image
Frances0008 in reply to Frances0008

And you need to ask them to always test your t3 levels as well as t4 so that you can see how much t3 you are making. It’s the important bit.

TanHokLie profile image
TanHokLie in reply to Frances0008

Thank you Frances for your information,

So the conclusion is how to convert T4 to T3. But the problem is hypothyroid drugs in Indonesia (I live in Indonesia,,,,) there is only one type drug for hipothyroid that is levotiroxine.

Then how to reach the optimal T3 level?

Frances0008 profile image
Frances0008 in reply to TanHokLie

Getting your vitamin levels to optimum can help your body to convert t4 to t3 but some people will never be able to make enough t3, and these people often take t3 medicine to supplement t4 or even just take t3 only. There are a set of genes which mean some people would never be able to make enough of it.

Even if you cannot get t3 in Indonesia you can buy it abroad and get it delivered by post. It is possible to get it from some countries without a prescription, such as Greece. Many people on here end up doing this if they cannot get it from their doctor. You could do a thread asking people for reliable suppliers.

TanHokLie profile image
TanHokLie in reply to Frances0008

Um ... what's the name of the drug?

And maybe you know the name of the supplier and the price.

Tks

helvella profile image
helvellaAdministratorThyroid UK in reply to Frances0008

you can buy it abroad and get it delivered by post

We need to remember that this is NOT legal in all countries. I have no idea if buying from overseas is, or is not, legal in Indonesia.

TanHokLie profile image
TanHokLie in reply to helvella

Ok, thank you for information Helvella

Gid Bless You

TanHokLie profile image
TanHokLie in reply to helvella

I Mean God Bless You,

SlowDragon profile image
SlowDragonAdministrator in reply to TanHokLie

The Levothyroxine (T4) is converted in the body, into T3

Getting your vitamins to good levels can help a lot

Getting Levothyroxine dose correct by small adjustments them always wait 6-8 weeks after each dose change to retest blood levels

It takes a while for body to adjust after each dose change.

HughH profile image
HughH

Levothyroxine is one of the very few things dispensed by a pharmacy which has no listed side effects and the problems with your eyes are probably not side effects. Some however report issues with the fillers used in forming the tablets.

When taking levo to treat hypothyrodism the body detects it and the control mechanism can cause the thyroid gland to make less thyroid hormones. The net result is that taking these amounts of levo does not help and in some cases can make things worse. About 125 mcg levo is regarded as a full replacement dose - this provides all the body needs and the thyroid gland does not have to make any. You may have to increase your levo.

Hypothyroidism causes weak eye muscles and loose ligaments leading to poor focusing. Healthy eyes are bright, clear, and shiny. Hypothyroidism can lead to red, irritated, dry eyes. Floaters, visual disturbances and night vision problems are frequent. People with hypothyroidism have reduced ability to convert beta-carotene into vitamin A, which is necessary for vision, especially at night.

helvella profile image
helvellaAdministratorThyroid UK in reply to HughH

Side effects listed for one UK make include:

headache

• flushing

• high temperature, sweating

• weight loss

• tremor, restlessness, excitability,

difficulty sleeping (insomnia)

• increased pressure around the brain in

children that is not caused by a tumour

or other diseases (benign intracranial

hypertension)

• chest pain (angina), pounding,

irregular or fast heartbeat

• diarrhoea, vomiting

• muscle cramps, muscle weakness

• deformity of the skull in infants caused

by the early closure of joints in the

skull bone (craniostenosis)

• growth in children may slow or stop

due to changes in bone growth

• irregular periods

• intolerance to heat

• temporary hair loss in children

It is, of course, a matter for discussion and investigation to determine which of these listed side effects are due to excessive doses, or excipients, or any other factor.

HughH profile image
HughH in reply to helvella

BNF which is the guidance used by doctors states:

Anginal pain (usually at excessive dosage); arrhythmias (usually at excessive dosage); diarrhoea (usually at excessive dosage); excitability (usually at excessive dosage); fever; flushing; headache; heat intolerance; hypersensitivity reactions; insomnia (usually at excessive dosage); muscle cramp; muscular weakness; oedema; palpitation (usually at excessive dosage); pruritus; rash; restlessness (usually at excessive dosage); sweating; tachycardia (usually at excessive dosage); transient hair loss in children; tremor (usually at excessive dosage); vomiting (usually at excessive dosage); weight-loss.

These are not really side effects - the thyroxine is just doing what it should. If you take too much it will do too much of what it should.

helvella profile image
helvellaAdministratorThyroid UK in reply to HughH

If you re-emphasise applying bold only those which do not have the (usually at excessive dosage), there are still quite a number!

Anginal pain (usually at excessive dosage); arrhythmias (usually at excessive dosage); diarrhoea (usually at excessive dosage); excitability (usually at excessive dosage); fever; flushing; headache; heat intolerance; hypersensitivity reactions; insomnia (usually at excessive dosage); muscle cramp; muscular weakness; oedema; palpitation (usually at excessive dosage); pruritus; rash; restlessness (usually at excessive dosage); sweating; tachycardia (usually at excessive dosage); transient hair loss in children; tremor (usually at excessive dosage); vomiting (usually at excessive dosage); weight-loss

You may think they are not really side effects. The BNF quite clearly identifies them as side effects.

HughH profile image
HughH in reply to helvella

Given the issues around doctors being over reliant on blood test results to determine dosage of thyroid medication it is likely that a number of patients are not on the correct dosage and will have symptoms of over or under medication. The fact that BNF have not identified some of their side effects as "usually at excessive dosage" does not mean that they could be due to this or even insufficient dosage.

I think I got the idea that thyroid hormones had no side effects from sources such as the patient information for Liothyronine Sodium (T3). medicines.org.uk/emc/produc...

4.8 Undesirable effects (information for doctors)

The following effects are indicative of excessive dosage and usually disappear on reduction of dosage or withdrawal of treatment for a day or two. Anginal pain, cardiac arrhythmias, palpitations, muscle cramps, tachycardia, diarrhoea, restlessness, excitability, headache, flushing, sweating, excessive loss of weight and muscular weakness, vomiting, tremor, insomnia, fever, heat intolerance, transient hair loss in children, hypersensitivity reactions including rash, pruritus and oedema also reported.

The patient tab lists the side effects with the proviso: "These effects normally mean the dose of the medicine needs changing. You should consult your doctor if they occur. The effects usually go away when the dose has been changed."

TanHokLie profile image
TanHokLie in reply to HughH

Hi HughH

Thank you for your information.

God bless You

Jodiedebs55 profile image
Jodiedebs55

Hi TanHokLie

Unfortunately my symptoms became worse whilst taking 100mcg levothyroxine only and I was terribly ill as the T4 wasnt converting to T3 it took 7 years of begging my gp to help me by prescribing the T3 i so obviously needed but he refused even after agreeing i wasnt converting so i made the decision to stop taking the levo as I was desperately ill and had gained 4st in weight and I ordered "armour" a combination of T4 and T3 and from a pharmaceutical company in America (im in the UK) and iv never felt better . My energy levels have increased my muscle cramps and pain in my joints have all but vanished and I dont go back to bed in the day time for a 4 hour sleep . Iv almost got my life back . Im also gluten free and dairy free and have banished sugar and processesd food from my life i feel so much better im not fixed but im better now than when I was on just taking levothyroxine. It's NOT the case for everyone but for me taking just levo didnt help me it almost killed me I ended up in A&E twice and also suffered a stroke and it was linked to my hypothyroidism and hashimotos disease. I hope you find the right medication for you . This is definitely the right place to seek help the members here are very helpful and full of knowledge iv learned a lot from them . Good luck 😁

TanHokLie profile image
TanHokLie in reply to Jodiedebs55

Hi Jodiedebs55

Thank you for your information, what do you mean by the Armor a combination of T4 and T3 and where I can get it.

Has the drug been approved by a doctor?

I hope we all get good health.

God bless you

Caliendria profile image
Caliendria

Are you sure this is as a result of levothyroxine? Just because it developed at same time does mean it is so .... For example these symptoms are very much the same as what I have had for years which is now diagnosed as Sjorgens Syndrome, but only this year I developed signs of hypothyroidism and turns out I have Hashimotos also... The current thought is possibly slow progression lupus is the underlying cause.. Those symptoms are so reminiscent of Sjorgens that perhaps you should be looking at a full auto immune panel to be sure

TanHokLie profile image
TanHokLie in reply to Caliendria

Than kyou for your information,

I'm not sure, I just read the article at drugs.com/sfx/levothyroxine..., and I haven't asked the doctor.

And I was checked for blood, the result was low HB while normal kidney and liver function.

But I also experience dry skin.

O yes I read an article in Indonesian discussion: alodokter.com/sindrom-sjogren

Have you experienced dry eyes or mouth for more than three months? Yes

Do you need to use eye drops more than three times a day to treat dry eyes? Yes

Do you feel like there is sand in the eye? sometimes

Do you have to keep drinking to help swallow food? no

Do you feel swelling in the salivary glands? I do not know

Then what do you do to treat the disease?

Thank you

Caliendria profile image
Caliendria in reply to TanHokLie

The blood tests you need to rule out systemic auto immune disease is not hb, liver and kidney function.... You need full auto immune antibodies panel which will include tests for ANA , Anti LA and RO antibodies and some others I am not sure of... If Ana was positive it us very indicative of Sjorgens and or Lupus, but unless you get Malar rash and a few other symptoms it is not as likely, but as you have symptoms seen in Sjorgens (you don't have to have it affecting eyes and saliva /mouth - mine has only mildly started affecting dry mouth and I am 6 years in) then with ANA and then a reduced tear breakup test /shirmer test on eyes will confirm Sjorgens. I am ANA negative still but I am RO positive which indicates Sjorgens, Lupus or lymphoma.. I have been diagnosed with Sjorgens but am being checked for lupus as we think slow progression and ANA will become positive in the future... If your hypothyroidism is Hashimotos then it is worth noting that it is often seen in Sjorgens and Lupus patients and those with Sjorgens can often have or develop lupus.

The best drops I have found in uk for day time use is Hylo forte.... Only ones to offer any kind of temporary relief, and also 'simple eye ointment' for night which is a really thick greasy gel.... There is no cure for Sjorgens, you treat symptoms with eye drops and any pains with anti inflammatories and pain killers, and immune suppressants which are designed to just dampen the immune system so it is not in overdrive... It won't necessarily stop a flair up

Caliendria profile image
Caliendria in reply to Caliendria

If you develop severe issues and symptoms a short high dose steroids is used.

TanHokLie profile image
TanHokLie in reply to Caliendria

I will discuss this with my doctor.

I have information from friends about supplements for autoimmune diseases, namely transfer factors. Have you ever used this?

I have not tried this supplement.

In the market called 4Life Transfer Factor Plus Tri-Factor, at amazon.com/Transfer-Factor-...

info on transfer factors can be found on the internet, one of which is all-natural.com/autoimmune/

thank you

TanHokLie profile image
TanHokLie in reply to Caliendria

and research on transfer factors can be seen in ncbi.

like this: ncbi.nlm.nih.gov/pmc/articl...

Tks

Frances0008 profile image
Frances0008

It looks like your t4 keeps going quite over range but your t3 is rock bottom. A bit too much t4 gave me pain and tension behind the eyes, but i still had way too little t3. It’s almost like having symptoms of both! If you don’t convert well, taking more t4 to up your t3 isn’t going to work. You convert really badly.

The aim is generally to get your t4 at least half way through range, but not overrange or you may get side effects. And importantly, you need to get your t3 about three quarters of way through range.

Just keeping giving you t4 isn’t going to help, and the combination t3&4 medications generally have a low percentage t3, as do NDT (animal thyroid as opposed to synthetic).

You might need less t4, and more t3....because you convert so badly. Some people on here take t3 only, because they don’t convert well or t4 gives them side effects.

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