Hello, I am newly diagnosed with hypothyroidism and have type 2 diabetes. Started taking Levothyroxine (25 micrograms)in April 2022 (2 months in with the treatment) after my thyroid levels showed hypo readings at - and I've no clue what these mean! - Serum TSH level (DKR) 10.76 mu/L and Serum free T4 level (DKR) at 13.9 pmol/L.
In first few weeks of Levothyroxine, I experienced positive effects of increased energy, clear head, and greatly improved mood. I am just 2 months on from my first dose, and have noticed in the last few days, ectopic beats (feeling of heart skipping a beat) and also headaches, for which, I have to take painkillers. As I'm not prone to headaches, this is very noticeable! I've also been experiencing tingling in my fingertips on my left hand - but did have a weight-lifting injury some weeks ago to my left arm, so that might be linked.
Did anyone experience side effects from Levothyroxine use in the first months of taking it? And if so, did these effects go away with continued use? I actually feel way much better since taking Levothyroxine, so would like to stick with it, despite the above-mentioned symptoms. Just feeling a bit wobbly as a newbie hypothyroid!
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25mcg is only a small 'starter' dose to get you used to increased levels of thyroid hormones gradually .... it's not expected to be ok staying on that tiny dose for long.
And it's usual to feel improvements for a few weeks but then feel bad again... this is not usually 'side effects' as such ... it usually just means it's time for the dose to be increased., and then you feel better again .. it can take several months to get up to the right dose you will eventually stay on .
Blood's should be retested after about 6/8 weeks on that starter dose .... have you have that blood test yet ?
Hello there tattybogle - thank you for your quick response! Yes, I felt pretty good, better than I had for years, in the first few weeks, then just these past few days, these odd symptoms. And no, they haven't checked my thyroid levels since starting Levothyroxine, yet. That's happening mid June. Spoke to my GP with a phone review recently, but I hadn't had the symptoms at that time. So, blood test due in a couple of weeks.
ok so , it's very likely the result of that blood test will be that your dose is increased to 50mcg .. most people will end up needing somewhere between 75mcg to 150mcg... but everyone is different .
it is more usual to start people on 50mcg ,, as they can handle that much to start off with without experiencing any problems..
Did they say why they were starting you on just 25mcg ? (25mcg is usually given to frail elderly/ or people with known heart problems ... but that doesn't sound like you... )
I have allergies and drug sensitivities (fun patient) so everyone is cautious when it comes to handing me something new to try ... last antibiotic they gave me resulted in my having to take other drugs to counteract the allergic reaction to it! GP wanted to start me off low with the Levothyroxine ... No one knows how long I'd been an undiagnosed diabetic when I was tested, and it was on the same blood form for an Hba1c test that my thyroid issue showed up. They didn't react/prescribe until the 2nd Hba1c test results showed the same thyroid issue in my bloodwork, then threw Levothyroxine my way. Now, they seem concerned as to how long I have had hypothyroidism, too. My cholesterol is high, as well, but I understand that's connected to the thyroid? ... I haven't quite accepted that I have these issues!🤣
ah , ok yes if you've been hypo along time, then that is another reason they sometimes start more carefully ... because your heart (and everything else) has got used to going a bit too slow .. so they don't want to give it too big a kick up the bum all at once ...
Yes, being hypothyroid will have caused your cholesterol to rise , (it's of of the well known signs of hypothyroidism )... but it should come down again gradually by itself once your hypothyroidism is treated effectively and you are on the right dose . (don't let them give you statins for your cholesterol .. it should fix itself )
Two test are usual to confirm hypothyroidism before it's treated with Levo .. just in case its a temporary fluctuation in thyroid hormone levels due to 'something else'
... my GP did prescribe me a statin, but told me I didn't have to take it, so I didn't/haven't! I understood that the Levothyroxine was a very necessary drug here, from what my GP was saying, so no question about taking that, but I was very unsure about jumping in with the statin (fear of adverse reaction) - and so was my pharmacist. Yes, when I read a little about hypothyroidism, I saw the cholesterol connection ... also saw a link between diabetes 2 and hypothyroid, so now I'm wondering which came first! They sort of both showed up together where my blood test results were concerned. Got a feeling this is going to be a long road to get both under control ... you have put me at ease somewhat, just sharing your knowledge with me.
GP should never have prescribed a statin under those circumstances.. i don't have it to hand , but there is a clear statement somewhere in the guidelines for GP's saying that raised cholesterol is likely consequence of hypo and ds they should sort our the hypothyroidism first. (but unfortunately they are rather being rather pushed/ rewarded to prescribe statins to as many people as possible at the moment )Smart move.... not taking it
Diabetes 1 is connected because they are both autoimmune diseases.. and if you have one autoimmune disease it's common to get another.
Not sure about the connection between type 2 and hypo... haven't looked into it .
But you very often find that hypo started so slowly and subtly that nobody noticed for years .... and thyroid hormones control the function of more or less every cell in your body .. from your fingernails to you heart to your brain , to your digestion, to your skin , muscles , tendons . reflexes ,eyes ,.. everything really . So when we go hypo .. lots of other things go wrong as a consequence . Fortunately most of then get better again once you find the right replacement/balance for your missing hormones .
...that's comforting to know many issues may resolve with the right hypothyroid treatment. I hadn't felt well for a few years before this - now it's all falling into place. My GP suspects both conditions may be genetic for me. I'm thinking one may have sparked off the other, the more I read. Lots of great info on here. Thank you!
yes . things take a long while to very slowly go wrong .... and then they get better at different rates .. some are quite quick (weeks ).,some take much longer (many many months) but get there eventually as stability is found . Realistically you can expect the next ? year and a half to be a bit like a game of snakes and ladders, as you find the right dose. increasing amounts of 'ok , but interspersed with annoying slides back down again.
Hopefully the 'ok' periods last a bit longer each time, and the slide down doesn't take you so far back down ... but be prepared there will probably be a few more ups and downs to come .
a lot depends on how skilled the GP is at adjusting the dose at the right time, and by the right amount . (and unfortunately they teach them 'bugger all' about how to do it properly at medical school)
But whenever you get a blood test ,, get hold of the actual results and you can double check on here if what you are told by GP makes sense.
p.s forgot to add . TSH (Thyroid Stimulating Hormone ) ... this is a signal from the pituitary to the Thyroid .. asking it to make more thyroid Hormones (T4 and T3).
When the thyroid isn't making enough T4 / T3 ... they TSH level goes up to ' ask for more '
But if the thyroid is unable to make more T4/T3 (usually due to autoimmune thyroid disease) .. then the TSH stay's high, and keeps going higher .
So replacement T4 (Levothyroxine) is prescribed .. and the dose is adjusted until you have enough.
fT4 (FreeT4 ) is the name of the blood test that measures how much T4 is freely available in your blood .
a healthy person who's thyroid was working properly , would have a TSH of around 1
..... by the time it get to over 3/4 ish .. it usually means there is a problem ....... by the time it gets to 10 (ish) it is shouting quite loud ~ 'our thyroid hormones are too low , hurry up and make more .
Once you are eventually on the right dose of thyroid hormone replacement .. you would expect your TSH to have gone back down to around one , (possibly a bit lower for some people)..and to stay there., and you to stay feeling ok .
But TSH can take quite a long while to move in response to a new hormone level .. hence the 6/8 week wait after a dose change .
...thank you, you have already been very informative, the GPs I speak to at my surgery aren't exactly forthcoming with explanations, so you have already been a big help to me. Appreciated!
You should also see HBA1C improves as levothyroxine dose is increased
Have you had thyroid antibodies, vitamin D, folate, ferritin and B12 levels tested yet?
If not request testing at your next test
About 90% of primary hypothyroidism is autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies
Low vitamin levels are extremely common when we become hypothyroid, because stomach acid levels drop low. It’s important to have good levels of stomach acid to access nutrients in food. Low stomach acid leads to low vitamin levels
For levothyroxine to work well we need OPTIMAL vitamin levels
That frequently means needing to supplement vitamin D, vitamin B complex…..possibly others
First step is to test levels before considering taking any supplements
Which brand of levothyroxine are you currently taking
Many people find different brands are not interchangeable
Generally stay on same brand, especially when increasing dose as you only want to change one thing at a time…..dose or brand
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Only have water between getting up and test. Taking levothyroxine immediately after test
Hello SlowDragon - I don't see anything on my blood tests printout that mentions vitamin D or those you mentioned ... lots of tests for lipids, liver function, bone profile etc., I will mention this next time I speak with my GP. Thank you for that information!
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
I do find your posts very informative. Nearly 20 years ago, I had abnormal TSH levels and I also had high cholesterol (around 7). The chest specialist actually laughed when I voiced concern. I had no idea that they could be linked. I have a letter from this specialist saying my TSH at 6 was only nowhere near high enough to qualify for treatment with thyroxine (normal range up to 5).
As regards antibodies, I do not have any antibodies. The NHS used to test for both as I have records dated 2004/05 showing the results of both. I do not know at what date they stopped. Mine have always been negative and still are. I developed a goitre though. I had a swollen neck/chin for years but over the last year or so the goitre was pronounced accompanied by a host of symptoms. It has been disappearing while Levothyroxine.
As regards the Teva brand, I do have gut bacteria problems and am very prone to thrush. I take Replete by Biocare which is a six month dose of mixed gut bacteria taken over seven days. I took one pack of Teva from the pharmacist, who promised to change the rest for Accord for me, as I had been without levothyroxine for ten days and my neck was swelling again.
My allergies are autoimmune driven - had them since I was a kid, started off with metal allergies and aspirin allergy. So I do wonder if my thyroid condition is genetic - GP has already suggested she suspects it is... Yes, they wonder how long I've had this undiagnosed. I started noticing strange things happening back in 2018. I did have blood tests several years ago that showed no sign of thyroid trouble or diabetes! It seems to have developed over the last 8 years - and both together. Makes me wonder if my thyroid is causing my insulin resistance? I guess time is going to tell. My glucose numbers have been much more stable on a daily basis since I've been on the Levothyroxine. I have read though, that thyroid levels can show up near normal even though some folks are going into hypo over a number of years - so who knows with me. Just glad it's been detected and I'm on a better path!
Thanks - a scan showed multinodular goitre and thyroiditis. I do have stomach problems (chronic gastritis/ulcer, h-pylori and then listeria which would not clear up. Over the last few years it has been petering out. However, when I have taken Omeprazole to reduce stomach acid, the Listeria has flared up. Guess what helps gastritis/stomach ulcer? Unbelievably, just eating papaya fruit has a marvellous effect. Trouble is, I keep forgetting, on account of thyroid issues affecting my brain!
hi SlowDragon....It looks like I have hashimotos, but not prescribed anything as yet. Having Hashimotos can cause low stomach acid.........therefore, would a supplement of Betain and pepsin be helpful in my case? I do "burp" a lot.....so wonder if my food is not being digested properly. Incidentally, my Vit D and B12 levels are good. Thank you, John
Thanks very much......coincidentally, I have been to the first link you posted a few years ago. I don't really know if I make too much acid or enough........seems the symptoms can be similar. I'll be seeing my GP next week to revue the ultra sound I had this morning.......and blood work a week ago.
I had symptoms on levothyroxine when first diagnosed. The palpitations - especially during the night were awful and I had overnight heart recordings for the cardiologist and he couldn't figure out what was causing them. He was considering putting an implant in my heart to 'see what was going on'.
Just at that time T3 was added to T4 and my heart calmed somewhat and I then went onto T3 only and that resolved all the palpitations ceased.
I no longer had to contact the cardiologist again and also didn't need an implant to record heartbeats.
I have been taking T3 only for a few years now and I am well and symptom-free.
If you click on my name it will take you to my 'page' to read more (if you wish).
Hello Shaws - yes, I first noticed ectopic beats at night, then during the day. I would have these 'skipped beats' or chest hiccups as I call them, now and again, before I was diagnosed, but so many folks for so many reasons get them, so I brushed them aside, but these past few days they've been enough to make me notice them to the point it had begun to worry me. Thank you for sharing with me that you experienced palps on Levothyroxine - it all helps, me. Really appreciate the responses on here! ... I read your bio: everyone seems to have been on such a journey here, but that makes me feel at ease in the company of people who know what they're talking about from life experience! Thank you for sharing your knowledge with me!
Yes, ectopic arythmia is very unsettling but it's not dangerous (apparently), I've had since I had stents inserted. It has to do with the body's electrical system that controls your heartbeat. I noticed (and a hospital GP confirmed it) that it gets worse if you're stressed.
Hello Mlinde - thank you! Glad to hear the ectopic beats aren't to worry too much about! Yes, not a nice feeling, and it has unsettled me - I don't mind the odd one here and there, but lately it's been every day, and I had a couple of days when they were frequent/close together (that's settled down a lot though). The Levothyroxine has made me feel back to my laidback self - I had become an anxious person before diagnosis, and couldn't understand why I had changed - so the arrival of ectopic beats whilst feeling relaxed has made me question what's going on. I'm getting the impression more and more that these are common experiences - which is hugely helpful to any anxiety I feel around the symptoms.
Hmmm... unfortunately, 'feeling' relaxed is not necessarily the same as being relaxed, the brain controls your body's functions, so who knows what's going on there.
I'm hoping it's just side effects! It's a bit of a spider's web with me, I'm in menopause, and have diabetes 2 as well ... but yes, absolutely, maybe I'm not quite as relaxed as I think I am. I've recently started breathing exercises for blood pressure control - which really work for me. There is a lot to be said for destressing - I'm looking into this more and more lately.
Thank you, SlowDragon ... I have been better where the ectopics are concerned today. My system has always been strange and unpredictable, maybe it's just a glitch. Your posts have been very informative. Much appreciated!
It's always a pleasure to inform others that there can be a light at the end of a tunnel.
Thankfully, I found Thyroiduk (long before this forum existed) and my health was finally restored. Initially, few of us have heard of hypothyroidism etc, so it comes as a big surprise to find out that we've an autoimmune disease.
I couldn't believe that GPs (general practitioners) had no knowledge of how to diagnose a patient whose thyroid gland was floundering and I have had some stupid statements from my local GP and I told him he was wrong.
I hope you are symptom-free within a couple of months.
My body didn't like levothyroxine at all. I was more unwell on it than before I diagnosed myself when TSH was 100.
Levothyroxine is also called T4 - inactive hormone - and should convert to Liothyronine (T3) and T3 is the active thyroid hormone needed all over our body and brain and heart have the most T3 Receptor Cells.
Few GPs seem to have any knowledge about how best to treat a patient who has hypothyroidism.
... yes, I have read about some folks not getting on with Levothyroxine, I was very nervous taking it, but my fears about not taking a replacement hormone - after my GP scared the daylights out of me! - were greater. I have been alright, and felt good, until recently. I guess we are not one-size-fits-all.
Typically dose levothyroxine is increased slowly upwards in 25mcg steps until on at least 100mcg (unless you are extremely petite)
The fact you felt noticeably better initially bodes well that once on the right dose you should do well
It typically takes 12-18 months to increase dose levothyroxine slowly upwards and fine tune……plus absolutely essential to get all vitamins tested and optimal
That's encouraging to hear! I couldn't believe how much better I felt in the first weeks, so I'm hoping I do better, still. Just bothered by the little heart flutters lately. I will certainly ask my GP if I can get my vitamins checked.
After another attempt to tolerate T4/levo albeit a low dose such as yourself… I finally stopped & continued w T3 only.I, too, had horrid headaches, bloat & other side effects… despite trying Synthroid, Tirosint, Levo ( generic) & compounded!
I now am taking T3 …however, maybe you would do better on a different levo as the additives might be the culprit for you.
Hello there beaubeau1121 - yes, I did consider 'is this my system reacting to something in the tablets?' but, usually, with me, I react to a chemical very quickly, so I'm confident I'm not allergic or highly sensitive to it ... Like yourself, but only these past few days, I've had headaches. I don't usually suffer with headaches, so that has stuck out for me as odd. And daily ectopic beats - not constant, just now and again, but every day I'll get a few over the hours...I'll mention it to my GP at my next review, but there's nothing like talking to others who are hypo themselves and have their own experience with Levothyroxine. I'm getting much more information here! Thank you for your response, it all helps!
I too am recently diagnosed as overt hypo. Tsh was 13.94 a couple of months ago. I felt like death. Started out on 75 mcg of levo, but my heart couldn't handle it "palpitations for 2 days". I started breaking my pills in half for 37.5 mcg or close to it. I began to feel GREAT up until my 6 week blood test and then started to feel bad again, but nothing like pre levo. Bad headaches, some kidney pains, lightheadedness. My Tsh was at 17.22 with my latest test. I am now taking 75 mcg and starting to feel great again. You came to the right place for the best help! These people on here are extremely helpful. Hang in there.
Hello ICE187 - thank you for that, and yes, I'm glad I came here, people have already been so helpful.
I've had a touch of lightheadedness, like yourself, too, but, I get that with my diabetes - so I can't tell what's what at times. I felt pretty awful before I was diagnosed, think it had been going on a long time. First sign with me was unexplained weight gain, followed by hair fall ... I'd started checking out wigs! Then I felt very down and sluggish for the first time in my life. I found excuses for everything and just got on with it. Now I know it's likely my thyroid causing all that. I also have tingling and numbness in my left foot, but although I've been referred to a podiatrist at the diabetes clinic, my GP wants to see how the Levothyroxine affects my foot ... I think he suspects my foot is due to the thyroid and not the diabetes.
So encouraged and pleased to read you are feeling good again. I'm a little scared of taking medications due to my experiences with allergies, but was thrilled I felt good on Levothyroxine. I'm hoping my symptoms are possibly passing side effects, or as mentioned by tattybogle, a kind of a slump in need of a medication adjustment ... I notice you mentioned you were doing well for several weeks then felt off ... it's a comfort knowing I am in the company of folks who understand!
I too experienced numbness in 1 foot with 1 toe. Diabetes doesn't cause thyroidism, thyroidism causes diabetes from what I read. I was undiagnosed for 7 years. My blood work in 2015 screamed hypo, but it was ignored. Curiosity got the best of me, so I began digging. I was jaundiced at birth. I found my birth record with medical reports and seen that it stated congenital hypothyroidism. 48 years later, I am now being treated. I had a ton of symptoms that began last July. I kept asking if my symptoms could be due to thyroid issues. No no, it's rare for men to get it, cancer, cancer, cancer. I refused to hear that word, so I quit seeing that doctor. My white cell count was elevated "absolute nuetrophils", but it was enough that screamed cancer. I lost 25 pounds in less than 2 months. My vision became bad at a rapid rate. Ringing in my ears, dark urine, rapid heart rate that would often drop fast. My heart rate was hitting 147 and would drop to 51 instantly. Very high blood pressure one minute, then very low blood pressure the next. I haven't yet been diagnosed with Hashimoto's, but I assume that's where i'm going. I have autoimmune vitiligo and the white cell count "nuetrophils" are the immune system protector. I assume Hashimoto's can trigger a rise in this blood count. My awesome new doctor called me last night to tell me my new TSH number, which I knew before he did and he said we need to increase my Levo dose. I informed him that I couldn't handle 75mcg that he first prescribed, so I broke them in half. He said yeah 37.5 mcg is not enough. I told him that I began taking the full 75 mcg last week without any heart issues. Prior to my diagnosis, I was put on statins. I noticed that statins did nothing for my high cholesterol. I took statins for 2 years without any changes. I stopped taking them against my old doctors orders. I never realized just how important the thyroid is until mine was affected. Now, I feel everyones pain. Sorry to spew out everything lol. I'd be curious to see if your A1C gets better once you are on the correct Levo dose.
That's a rough ride you've had! I hope you can feel better! I didn't realise how important the thyroid is until this happened, either. Yes, it would not surprise me at all if the thyroid condition sparked off the diabetes. Time will tell. I don't take meds for the diabetes. I've dropped 28 pounds by better eating and exercise, and some symptoms I was having with the diabetes have gone - except for my foot issue. My A1C has dropped from the first reading ... without medication ... though I had a long gap between A1C tests due to illness and then a sports injury, at least it had dropped, but that meant a delay in treating my thyroid. The last GP I spoke with seems to be of the mind that my numbness and tingling may improve with thyroid treatment, so we'll see... Yes, will be interesting to see how the Levothyroxine treatment affects my A1C results, my next full blood count and A1C is July. I'll have been on the thyroid medication almost 4 months by then. If there's a big change, I will post that information. From what I've read on here, I'm probably in for a long haul.
I got daily headaches for the first few months of treatment. I was assured by this forum that the symptoms would settle and my body would start getting used to it. Now I only get them when I increase my dose. They get your down a bit don't they but they do settle down x
Ah, good to hear! Thank you so much, RoboTh! I was just saying this morning that I can handle this if it's side effects and will pass. I'm very hesitant with drugs of any kind - not against them, just am on dodgy ground with them due to my system. I don't know if Levothyroxine starts to build up in the system with continued use, and I must admit I will be nervous to start having a higher dose, but I have more confidence on this path since I found this site!
Hi Digger0 - patience I have plenty of, so I'm ready for the road ahead. Good to know folks who know what they are talking about because they've experienced/are living with the condition, are telling me it will get better. Makes a huge difference to me! Thank you!
I started on 25mg and for the first few months I was given various makes of Levo, which made me feel really out of sorts or gave me 24/7 headaches. I found that one particular brand suited me , so make a note of what they are prescribing you and also how you feel when you’re on them, whichever one suits you let your gp know and insist on that one going forward.
Thank you, Kimkat - I've read about this, I've noticed some folks react to different brands since I've been on here. It settles my concerns somewhat to know that others have experienced headaches/ectopics whilst taking hormone replacement... The brand I'm on is by WOCKHARDT. Had no ill effects whatsoever for the first few weeks, so I am a bit baffled as to why I'm experiencing this now.
Wockhardt didn’t suit me at all, neither did Northstar, I feel better on Mercury Pharma, however its taken me nearly 4 years to get an increase up to 100 mcg and I’ve had to fight for that. You may find that the nhs will only test for TSH now, so I have had to pay for private tests to keep on top of it.
Oh dear - not fun. I better stay brand-aware, I think! I've just been given a blood test form and it states they are testing for "TFTs (treatment monitoring) TSH, Thyroid Function" only on this form ... but next month I will be on the full tests again alongside my Hba1c.
I’ve had nausea, which lasts until the afternoon, I’ve tried taking them at night but trying to sleep feeling sick is awful. I’ve had different brands but it’s made no difference.
Oh, that's no fun - I hope that clears up for you! I have had nausea with the headaches, but when the headache goes, I'm fine - it's just that, the following day, hello headache again! I hope you can treat that nausea whilst you have it, that's really unpleasant for you. I'm hoping I'm having a transition period and it will level out. Hope you find some relief very soon, Dizzy444.
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