Hello! I just started Levothyroxine for Hypothyroidism 2 weeks ago. I have been dealing with side effects and was wondering if anyone else has too! I am on 25mcg and have had bad anxiety, panic attacks, too hot or too cold, no appetite, chest soreness. Anyone else?
Anyone else have bad side effects with Levothyr... - Thyroid UK
Anyone else have bad side effects with Levothyroxine?
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alhsoccer04
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Hi alhsoccer, sorry to hear you’re having horrid side effects. I’m certainly no expert and in a similar boat to you I’m afraid. I was diagnosed 7 weeks ago and started on 25mcgs. Blood test done last Friday and dose increased to 50mcgs.
I had side effects for the first week on the 25 then they settled but with this increase I feel rubbish again although it’s only been 4 days. Cold and sweaty, not sleeping and feeling really weepy ...plus totally wiped out. I’m hoping things will get better . Maybe if your side effects continue you should go back to your GP?
in reply to Luvyoga
Hi, I have been on Levo for 6 weeks now. Initially I felt better having taken 50mg daily. After 4 weeks I have started to get side effects. Extreme tiredness. Freezing cold or boiling hot. constipation. Lack of sleep (waking at 1.00 am for the rest of the morning) I have a busy job and by the end of the week I am fit for nothing. No appetite either however weight loss is non-existent. I am being told that my dosage may have to be increased and that the side effects will diminish but just to give it time.
I have also been on Vit D tabs as I have severe deficiency causing leg bone and knee joint pains 24/7. I am falling to bits... Here's hoping it soon starts to get better.
I have GP appointment Thursday with blood tests.
Luvyoga in reply to
Hi Hypo64, I’m the same with the extremes of hot and cold. I’m hoping that my side effects are due to the increase and that they will diminish over the the next few days/weeks. My weight is increasing too.. I’m on Teva
Teva brand of Levothyroxine upsets many people, though it's the only one for lactose intolerant patients
Essential to test vitamin D, folate ferritin and B12
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
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)
Is this how you do your tests?
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
Medichecks currently have an offer on until end of May - 20% off
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_...
NHS guidelines on Levothyroxine including what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
nhs.uk/medicines/levothyrox...
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Just stumbled on your comment- did this ever go away?
Maybe stay on 25 mgs till you level out. That is what I did. Everytime I had increase had same anxiety and feeling hyperactive. I have levelled now on 75 mgs after five years. Remember your body has to adjust from being underactive. Do not suffer though tell your doctor if they will not listen ask to see an endocrinologist.
SeasideSusieRemembering
What brand of Levo have you got? Teva is the brand which seems to cause problems with a lot of members.
in reply to SeasideSusie
Almus Pharmacuticals?
I didn't know Almus did a 25mcg tablet, I thought they only did 50mcg and 100mcg. I thought only Mercury Pharma (Eltroxin), Teva and Wockhardt did 25mcg ones.
in reply to SeasideSusie
My dosage is 50mg not 25mg.
I think you'll find it is micrograms - not milligrams:
I responded to alhsoccer04's original post and asked her what brand of Levo she was on. I'm not sure why you answered with the brand you are taking.
It doesn’t say a brand on my prescription..only that it is from CVS and that it is Levothyroxine 25 MCG tablet..the manufacturer is Mylan. I live in the U.S.
I’m in the USA and mylan levothyroxine is generally the generic of choice. I reacted badly to mylan and synthroid (brand). All firsts at 65/66. Tirosint is the cleanest containing t4, water,glycerin and gelatin and it’s the most expensive and often not on a formulary. The 50mcg pills are dye free as some have problems w that. To get to dose, the pills are split. I was on Tirosint but not on current formulary so I’m now compounding t4 in an olive oil suspension. Tirosint is sold overseas but I think it has a different name. A liquid form was just introduced but I’m not sure of availability this side of the pond.
Are you saying that Tyrosint liquid pill is not available in the US? I am on Tyrosint, and live in Greece, with the possibility to move back to the states by the end of the year, so I want to know if I can get the same formula in the states. I dont won’t to use levothyroxin or any brand other given the side effects I had before. Thanks!
The capsule is available but cost varies by the formulary of your insurance plan. Many formularies aren’t providing it. I switched Medicare plans and the new plan was $90/28 caps. My first plan put me on Tirosint after a year of reactions to mylan levo and synthroid. After about 1.5 months all reactions stopped and have not resurfaced for almost 3 years. I’ve read that there is a liquid that is now available that removes the gelatin outer capsule casing. The capsule is available but not sure about the liquid. My suggestion is that if you have an established ‘medical necessity ‘ for Tirosint, bring that w you and it may be easier for you to get is at a reasonable cost as many insurers/formularies might recognize the medical necessity clause and make it easier/cost less to get. I would also suggest, if possible, to stockpile some while you navigate this wonderful system to determine what you might be able to do. There are coupons available and many make use of it as well. However, many coupons for drugs are not available for use under a governmental plan(Medicare, Medicaid etc. it is sometimes part of the formulary for tricare. Hope this clarifies the capsule vs the liquid a bit more.
Thank you very much! Sorry for bothering you but could you please clarify the difference between liquid and pill? I am taking gel pill, which is clear with yellow liquid inside, but not sure if that counts as liquid pill.
I think the capsule is sold as ‘Tirosint ‘ and the liquid is sold as ‘tirosint-sol’. You can google this. If I remember correctly, the liquid removes gelatin and is relatively new. The capsul ‘Tirosint ‘ contains t4, water,gelatin (outer casing) and glycerin and has been available in the USA for some time. I would think that both might be subject to the same formulary issues and roughly cost the same.
See this recent post:
What color is your 25 mcg tablet? The 50 mcg tab is white and free from any additives. If you're that new to this, you are probably under-dosed but take heart and tell your GP, if that's who you are dealing with, to refer you to an endocrinologist, who should, (ask him to) raise your dose every 60-90 days. This is a period where you may have to experience some pain and frustration until you find your optimum dose. You should settle around 100-150 mcg of T4 before finding your best level and good luck in getting well. I, as well as innumerable others, was diagnosed 25 years ago and never checked for that long a period, until my thyroid wasn't converting (T4 to T3). This (usually) occurs when your FT 4 level is normal but your FT 3 level is low. You want to try to get your FT 4 & FT 3 levels at optimum levels (usually both over mid-range) and try to have a great life but if (as sometimes happens) a problem (or problems) show up, take heart, many, many before you have gone through the same journey. You may have to add some T3, aka Liothyronine, or even try NDT (natural dessicated thyroid) before you feel "normal" once again. Good luck and peace be with you.
I’m on 25 mg for Thyroid and I’m having a lot of problems with my bladder. Already been checked for infection and it’s negative, but I’m in a lot of pain,. I’m am gaining weight like crazy and I can hardly think anymore. I feel like the walking dead, only I’m not walking much😥
elliss56
How long have you been on 25mcg Levothyroxine?
Bloods should be retested 6-8 weeks after each dose increase
Standard starter dose is 50mcgs, but if over 50 years old, then starting on 25mcg. But the aim of Levothyroxine is to slowly increase the dose in 25mcg steps. Retesting levels each time
This continues until TSH is under 2 and FT4 in top third of range and FT3 at least half way in range
Absolutely essential to test vitamin D, folate, ferritin and B12 too
Low vitamins frequently need supplementing to improve so that thyroud hormones can work better and dose of Levothyroxine increased
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
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)
Ask GP to test vitamin levels and thyroid antibodies if not been done yet
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
Medichecks currently have an offer on until end of May - 20% off
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_...
NHS guidelines on Levothyroxine including what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
nhs.uk/medicines/levothyrox...
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
Come back with new post once you get results and ranges
I am 22 years old and on 25 mcg..my doctor had me bump up to 50mcg 5 days ago but had hyperthyroid effects such as panic attacks and bad anxiety. Now I’m trying to get my body back normalized because I’m still struggling with acid reflux and muscle weakness
Acid reflux is common hypothyroid symptom
Essential to test vitamin levels and get vitamins optimal by supplements if too low
Taking any dose of Levothyroxine, even a small dose, can result in own thyroid taking a rest. So until dose of Levothyroxine is slowly increased to higher level, you can become more hypothyroid
You too will probably need to go up in dosage of your T4 Levo. I believe it's mcg, not mg, if you are in USA? You need to see an endocrinologist before long and have your dose raised every 60-90 days before you feel "normal" again. Your weight will stabilize, believe me, just take heart and know that you are not alone, hypothyroidism is a universal "problem" but, unfortunately, everyone lives in an area where they can only hope they can find a decent specialist who knows at least one hormone from another and a little about the brain, the heart and the thyroid gland. This site, as well as others, is a very good place to find some help. You will, soon, be well again but you must (demand if you have to) find the right dose because no one can tell you how you feel (except you) and you must let them know (in no uncertain terms that you are sick). Take heart and may peace find you wherever you are.
It's very possible that the particular brand that your on the fillers might not agree with you . In addition having nutrients in place is vital for the thyroid meds to work well for us .
Viamin "D"/K2 B-Complex , B12/folate Iron if you test low magnesium Celtic Sea Salt for adrenals/electrolytes .
Knowing your FT3 FT4 and TSH values are very important . Always ask for a copy of your BW and write on the dose you where on at the time . It will come in good use for future references .
Wishing You Wellness Very Soon .
I was low on vitamin D so I’m taking a weekly high dose. I was low on iron as well but I guess that’s normal?
All these nutrients need to be bought up to par . Nutrients help along for the thyroid meds to work well for us . Are you on any Vitamin "D" or Iron ? It would be very beneficial for you to read SeasideSusies Excellent Posts on Nutrients .
And SlowDragons her own personal post and experiences and her Excellent posts with going Gluten free benefits . Lots to checkout .
Hi, yes I did. I had to lower my dose. I'm now back to 100mg, but still get hot sweats and toilet issues.
I'm still sleeping all the time aswell x
Each brand has different effects for different people. I've had GPs say they're all the same but they're not. Luckily, my chemist agrees with me. I found: Teva made me worse than no medication (GPs solution was to try to get me on antidepressants); Activis was ok but nausea now and again; now on Mercury and no side effects. However, if I change brand or dose, I feel awful for up to a week.
It's a bit of trial and error unfortunately. Once you find a brand you like, stick to it!
Hi, I started taking mine at night, and although my hashimotos is well and truly messed up, it sorted me out regarding going hot.
Hi
I also struggled for a long time with bizarre side effects when I first was diagnosed almost 2 years ago, this included twitches and muscle weakness. I have changed from tevo to mercury brand and feel a lot of better.
I also felt awful on 25mcg but I am so far now on 75mcg and am feeling steadily better. I started and stopped Inbetween because the side effects got too much but now I’m better back on them.
Also having appropriate vitamin levels are so important for thyroid function. After having my baby in 2017 I was depleted of a lot of nutrients and just the medication alone never helped. Once I topped up with my B, D vitamins and iron it helped a lot Perhaps test your ferritin folate b12 vit D as suggested to see what improvements can be made .
I've been taking it for almost 2 years. Got my high number down to 1 at one time and I did have more energy but I had a lot of anxiety and the hot flashes every hour or so. I also woke up every hour when I try to sleep at night. My number is high now according to what my brain is telling my thyroid to do but the amount of hormone in my bloodstream is normal. At first my doctor told me my symptoms wer psychosomatic but now she is acting a little nicer. It's a percentages thing. Most people's thyroid numbers do this so yours aren't so there's something wrong with you. I think you just have to work with it like experiment on yourself half a pill this way half a pill that way. I'm taking one and a half 25 mg pills a day. She wants me to be taking 50 mg. And maybe I will we will see how I feel. Not everybody fits in the norms. If you find something other than levothyroxine that works for you please let me know. I will do the same. Chow my cousin across the big water. I'm in Portland Oregon.
hello alhsoccer04, sorry to hear you are having such bad side effects. I was put on teva and have never had any problems. One month my pharmacist put me on almus which gave me awful sickness headaches brain fog and depression. The next month they gave me teva and all my symptoms disappeared. I spoke to the pharmacist who now only gives me teva. Perhaps you need to do the same and be put on a different brand as what you are taking obviously doesn't agree with you. Hope you feel better soon x
Yes ‘Me Too’!! After the third dose of 25mcgms l sparked out and came too 6 hours later only vaguely knowing where l was. It’s the preservatives and fillers in the tablets. Manufacturers in India have to add substances that those in England do not. India is the cheaper option and on the financially strapped NHS is the preferred option. Ask for a different brand.
yes me im on levothyroxine ,for a year now , boobs are so sore ,sore throat anxiety , moood swings , docs carnt get my levels right and to be fare ive had enough .
I was started on 25mcg and result was horrible - ended up unilaterally upping to 50mcg a week later because I was so suicidal. Then upped unilaterally to 75mcg a couple of months later because 50mcg still had me totally depressed and with less energy than before I had started.
There is a lot of debate on what starting doses should be - one is start low and build up - though unless you are over 60 the usual starting dose should be 50mcg.
Some think it would be better to start nearer the expected final dose (which generally correlates to body mass) but these are very much in the minority so the usual regime is to start people on really small doses that just make them feel worse and then do a TSH check and if that comes back in normal range leave them feeling awful. Some GPs are actually aware that TSH tends to need to be much lower in someone on levothyroxine but many aren't.
I'm not a medic ... (and I'm feeling a bit annoyed at the moment because of a screwed up amazon order - so slight venting going on) - so can't really advise you on what you should do but if you are feeling that awful I would suggest going back to your GP and asking them to check the starting dose as you think it should be at least 50mcg and see how that goes.
To be fair it is really difficult to manage levo doses because levo has a very long half-life in the body - meaning that the body only responds very slowly to changes in doseage. Overdoses have horrible side effects and you'd be stuck with them for weeks if started on too high a dose - but I don't think the suffering of starting people on doses that are much to low are recognised.
I am now on 100mcg - much closer to the dosage that would have been expected for my body mass - but I got there through pig-headedly doing my own thing and listening to my symptoms - not really a strategy that anyone should need to take. Last summer I needed to drop my levo in the warm weather (not that unusual a situation) so I take my dose as 4x25mcg to allow for that possibility. Think GPs notes probably have me down as an awkward cuss 
Hearing all the misery people are going through on Levothyroxine just makes me want to cry. I think the damned stuff ought to be outlawed! There are alternatives that are so much better. The two best options for me were ...Originally... Armour thyroid. ...Then when the manufacturer changed the formula in 2009, and it was like taking nothiing, my Doc put me on Cytomel. T3. ..If you can get a trial of T3 that is probably the best option for success and no side effects.
Remember, everyone is different. Levothyroxine may be wrong for you but not for everyone. I took it for 25 years before having to add T3. I've not yet tried NDT but I know many who have and did not do well on it. Everyone is different and reacts different. Hypo and Hyper Thyroid is an ongoing world-wide problem that, unfortunately, there is not one pill that will cure all, despite the medical and communities and Big Pharm's love of Levothyroid (it provides them with an enormous amount of money) but let your heart not be troubled but, also, let it not be afraid. Peace be upon you.
Of course your're right. I just hate hearing the plight of so many who are still miserable, even though "under a doctors care". .. It seems like so many doctors are "100 years behind the times." ... Wish I had a "magic wand" to pass over all thyroid patients and free them from suffering!
Well, actually NDT actually was used at about that time and saved many lives, as, in those days, you took NDT and got well or you died. Peace be with you.
I did really well on NDT for several years, then they changed the formula and after that, it didn't work for me at all. ... I believe the new owner of the "Armour" brand of thyroid has gone back to the old formula.
Many Hashimoto's patients do not do well in NDT
Levothyroxine or Levo plus T3 may suit others
Have you ever had panic attacks before? If not then there could be a connection. However, if you have struggled with anxiety and panic throughout the years...I doubt it. I have lived with anxiety and panic for over 40 years. Anytime I try something new I am on high alert and will sometimes have anxiety. With anxiety comes hot flashes and sweating. I have xanax as well as I listen to relaxation meditation audio on calm.com. If you can get rid of these symptoms with medication and/or relaxation techniques it's most likely not related to the thyroid meds.
Also, people with hyper-thyroid are normally the ones who have anxiety because too much thyroid revs up their system. I once thought my thyroid was affecting me and went to the doctor. He didn't even know me as I was in a new town and he said "you're having panic attacks and it has nothing to do with your thyroid".
Good luck. I know anxiety and panic is frustrating and uncomfortable. However, anxiety and panic doesn't kill you. It's just scary.
Many hypothyroid patients suffer from anxiety until,adequately treated
alhsoccer04 in reply to
I have suffered from panic attacks in the past but they are pretty rare. They have never been as bad as the one I had while taking the 50mcg.
in reply to alhsoccer04
Then maybe you should talk to your doctor and adjust your dosage. Panic and anxiety TOTALLY SUCKS!
alhsoccer04 in reply to
I did go to doctor on Monday because I was on 50 and having those side effects..she took me back down to 25. I think my body is just having whip lash.
in reply to alhsoccer04
Good to hear. I wish you well.
Yep. Had problems with levothyroxine. I even took the name brand (Synthroid). I had to cut the 25 mcg in half. I have since switch to NDT which works better for me.
Hi, I had bad side effects on same meds as you.... really weepy, thick head, almost feels numb! Hot then cold, and feeling really tired. Each time dose increased, I get side effects again..but at present I feel extremely well... hooray. Hope you start to feel better soon... x
Hi alhsoccer04! US here too!
I've recently had a complete thyroidectomy (February 11, 2019) prescribed Levothyroxine 125 horrible side effects ensued, then 100 again horrible side effects (to include coughing again). Prescribed Synthroid 25 was doing fine side effect symptom wise but hypo, due to lab results on 4.16.19 increased to 50 and I've started to cough (sometimes with phlegm). I know it's the meds because I have never had this problem prior. I don't smoke, never have and I'm not on any other prescriptions.
I had an May 1st and yay for me my doctor had no problem prescribing Armour thyroid. I am starting with 15mg the lowest dose, so we'll see how that goes. I'm hoping/praying that this will be the one that works because as of April 1 until yesterday's weighing I've gained 8 POUNDS--sheesh. I will have bloodwork by May 16th for TSH/T4. My calcium as of yesterdays labs was normal--it had been off.
Do you still have your thyroid? If not this article may be of some help, it help me.
Just seen thread good luck all, I've just been reading Dr S Myhill functional doctor, worth a look as she covers everything and something may jump out for you, I'd love to visit but she's inundated
Adrenals cause horrid panic and can't deal with stress which is my bag still as going through stress'ful situation ongoing since Nov Dr Peatfield says when adrenals are down many can't tolerate levo until functioning better again
Xx
Metavive is another natural one to consider
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