I was diagnosed last week with hypothyroidism and put on 25mg levothyroxine.
First tablet first thing Weds morning, I awake Thursday feeling dreadfully sick and unwell, was violently sick, felt bad enough to stay in bed due to headache aches and pains all over, generally lethargic, and nausea. I did not have any appetite and only drank water. It carried on for 48 hours, then started feel breathless tight chest and very very weak.
By Sunday the symptoms had subsided and today I feel ok.
Tonight out of curiosity I checked on side effects of levothyroxine and was shocked to see all my symptoms were on list (I have not listed all mine here)
My question is has anyone else suffered with side effects and is it normal to? How long have they lasted?
Most people report they notice next to nothing from their first tablet - especially a low dose like 25 micrograms.
Your reaction does not seem typical of a side effect of levothyroxine itself. However, some people are remarkably intolerant of some levothyroxine tablets. What make were yours?
I do have intolerance to many things I'm classed as an allergenic person so have sensitivities. It could be just that my doc said he only wanted to start me on a low dose to see how I get on.
When I started on 50mg my neck swelled up so much the skin started to split. My TSH was 177.7 when diagnosed so I was very under active. It settled down after a week. I'm now on 150mg and have been for 10 years
I think mine has now got to where I need the thyroid as been tested regular for approx two years. Sounds like a long road of getting things in balance.
I was on 50mg levothyroxine but my dose has been increased to 75mg nearly 2 weeks ago. My body rebelled totally the next day after taking 75mg levo tablets, horrible. I certainly didn't need the drink I was given for constipation! I wasn't right for about 10 days, felt I lost those days totally. But now I'm gradually becoming used to the increased medication. Only occasionally I have had a setback, like yesterday. But I think that was self-inflicted, ate a large pack of crisps on Saturday night. I can eat a small amount no problem. Are you taking any other medication at the right time and have you checked all the foods which you can have? Not all vegetables are kind to someone with an underactive thyroid unfortunately. I feel as if I'm still on a learning curb. Quite a number of the foods I love I've had to cut out from my diet i.e. coffee, brocolli, kale, soya and the only nuts I can have are brazil nuts, I love them. Thats just a few of the foods I've had to give up. But there is a long list of foods which aren't good for people like us. I hope you feel better soon, I know exactly what you're going through.
I am taking tab first thing in morning and wait a minimum of 40 mins be for I take Lanzaprozole then I have a cuppa then wait at least another 30 mins before I have breakfast.
I am on a few meds for different things.
I was told nothing about diet or what to avoid but my diet is weird due to tummy probs.
I have been tested six monthly then three monthly before put on thyroxine last week.
I felt I lost a couple of days so know what you mean.
This sounds a right pain with thyroid yet another one on my list, age is unkind.
For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.
There is no need to avoid any foods other than unfermented soy which is thyroid unfriendly.
If it continues it might be worth asking your dr to prescribe you a diff manufactured one. I took that one ok. Not any more though as continued hypo on it. On NDT now.
I know one person who had such an extreme reaction. If you can't take it you need Natural Desiccated Thyroxin that you are not going to get from the doctor. You are going to have to do this yourself unfortunately.
Have you had thyroid antibodies tested for Hashimotos?
Lots of posts on here about low stomach acid symptoms & how these can be misdiagnosed as high acid. Also how to test. You can not just stop a PPI it has to be cut down or replaced very slowly
Hi I have been on Lanzaprozole for approx 5 years and omeprazole before that so it's many years. I know it can thin your bones and I have osteoporosis anyway which was diagnosed some years back so not connected.
Everything I'm reading tells me the thyroid is a big minefield of complications. It's quite overwhelming.
It might not be connected as you say, but these PPI's will certainly be making your osteoporosis worse. I don't believe Zantac is quite so harming. I pop one now and again but never would go back on omeprazole etc. I have always made too much acid right from an early age. I am in the same boat, was given NDT only a 1/4 of a grain but reacted badly, not as badly as you although I did stay in bed for a couple of days and I took valium to calm everything down. I think mine is more to do with the adrenals. I also am allergic to practically everything, it's such a pain but I hope you get sorted soon.
Mostly because they do know more. GPs are not trained to be spcialists in the thyroid and the trainign they get can be founbd and read by anyone these days wwith access to a library or the internet. If youare researching your own condition, you tend to spend a lot of time on it - not the 5 mins you get in GP appointment or even the half day or so you get on a medical degree. We also tend to be more up to date o research than your average GP.
You might have high acid, but it is more usual to have the symptoms of heatburn and gastric distress - including damage from low acid meaning that food is not digested and "comes back" than high acid. See nutritionjersey.com/high-or...
Most PPIs are meant only for short term use, but GPs jut go on giving repeats - they are implicated in lots of other health problems and will impair B12 absorption (so you need extra B12). A better solution to high acid is a physical barrier to prevent damage to the esophagus See lifeextension.com/magazine/... but too expensive and new for the NHS to consider
Gastric Ph testing (might be Heidelberg test) would prove it one way or the other - the hospital tests (barium meal/swallow, endoscopy) just show whether or not there is damage, not the cause of it.
I empathize. The simple fact is that yes, a lot of doctors are blase about thyroid issues. I learned the hard way that some have the belief that most women, especially those of us over a certain age, are stupid, or neurotic, or both. I actually had one MD suggest that I only wanted thyroid meds to lose weight. This was on the first visit and he hadn't even read the lab reports or looked at the CT scan orpathology report of the tumors in my thyroid. I walked out. Don't be afraid to walk out if you feel like you aren't being taken seriously.
On the other hand, when you find a doctor who listens and answers your questions, hang on to them. Do what they tell you, if you don't understand what they're telling you to do, ask. We all have to learn to speak up. It took me years to do it.
Thanks my doctor is great and I have no problems with him and he listens.
I am not afraid to speak up either and never felt he feels I'm a neurotic woman. He is not a pill pusher either, if you don't need it he won't give it as they are all chemicals and I agree with that as I don't want to take anything I don't need to.
"in very many cases sadly we do know an awful lot more" I think that should be in practically all cases and include hyperparathyroidism in that category too!!! I despair and the private sector are hardly any better from my experience!
Omg really, It has been one thing after another and put down to just getting older. Also weight gain gradually piling on losing then gaining. I've lost weight and that was due to not eating properly due to my gastritis and I've kept it off.
I've had regular blood tests for years due to other things and my thyroid was only queried about a year ago and was retested after 6 months then doc said it was not abnormal but I think borderline and he said sluggish. I was retested 3 months then it had changed and last week put on levothyroxine.
After reading things on here it's really concerned me I never realised the thyroid caused so many problems😟
I also have a family history of hypothyroidism which doc said didn't help.
Hi Lottie. I had horrid side effects on 50 mcg levo and they got worse not better as successive gps told me the complaints I had were nothing to do with levo despite only appearing 24 hours after I started taking levo. I never was able to tolerate more than 25 mcg but now take ndt. Not entirely unproblematic with that either. Can't seem to find a dose that doesn't cause me problems. Think some of us are just very unlucky in tolerating these drugs (I have no other allergies or issues). The only thing I haven't tried yet is t3 only. Try halving the drug and see if the side effects go. Mine went pretty quickly - within 24 hours I started to feel better. If you halve the dose then feel better you will have the proof for your gp that it's the levo. Then they'll refer you to an endo who will also probably be unhelpful. 😂😂
It's the thyroid of a pig and what they used to treat UAT before levo was invented. It's not licenced for use in the UK so most Dr won't prescribe it. I get it from an endo who will - but only on private prescription. To quote my endo "the treatment of thyroid disorders in the UK is disgraceful". And he's right 😎
From the very early years of the twentieth century through to about 1980, desiccated thyroid products were available in the UK. Not sure when it was listed in the British Pharmacopoeia but for many of those years it was listed as Thyroid BP and was the standard treatment for hypothyroidism - with no alternatives.
(Bear in mind, our licensing framework has changed. So it is not easy to be sure we use the exact terms.)
In the 1950s / 60s levothyroxine (T4) and liothyronine (T3) were introduced - having been synthesised and then formulated as medicines.
For the next twenty years, much was made of the inconsistency of desiccated thyroid. There was some truth to that - the ability to manage the potency of desiccated thyroid was nowhere near as good as today. However, it was implied that levothyroxine was as near as possible, perfect.
Reality has caught up to some extent - levothyroxine products have had numerous recalls and even withdrawal of licences here and in the USA. (Actually even levothyroxine was not officially "approved" in the USA until about 2000!)
As levothyroxine wasn't licensed in the USA for about fifty years, that a product simply does not have a licence is not necessarily of any concern.
And desiccated thyroid products are extremely tightly controlled (at least in the USA).
There was NEVER any trial to demonstrate that levothyroxine was superior to desiccated thyroid. There has still not been a proper trial of that nature.
The Why? - Money.
Levothyroxine is cheap to make. Which is why 50 and 100 microgram tablets have NHS costs of just £1.66 for 28 tablets. Yet in the more commercial environment of the USA the Synthroid product 100 micrograms is from about $37 dollars and upwards for 30 tablets. The potential profit margin for levothyroxine is very considerable.
(General note: As I understand, Thyroid BP, the British desiccated thyroid, was half the potency of the USA and other products such as Armour. If you see historic papers, be careful that you take that into account.)
No. They never bothered to get the licence as i think the story is something like if drugs had been given for ever they didn't need to be licenced when the new licensing rules came in 50 years ago or something like that. I would rather take an unlicensed drug that allows me to take more without side effects than a licensed drug which makes me feel really ill. And I've never heard it killed or maimed anyone in the 100 years it's been used. They gave a licence to levo and fat good that was as far as I was concerned as it made me so poorly (every brand I tried). My endo is one of only a few who seem willing to accept in theory that some people can struggle with levo for reasons which noone understands and there's not likely to be research in my lifetime to find d out why. The cost of the drug varies depending on brand but naturethroid is 148 quid for 100 tablets.
[ I am perfectly happy for any member to copy and paste this link as appropriate to help members. Don't feel you would be treading on my toes by so doing, rather that you be saving me the effort. ]
I have vitamin levels checked regular because I have osteoporosis and on Lanzaprozole the levels are always good.
Yes my bone doctor would prefer me to come off Lanzaprozole because it can thin the bones but my gastrologist is concerned about me not taking it, so devil deep blue sea 😕
Most popular is Medichecks Thyroid & ultra bit or Blue Horizon Thyroid plus eleven - both are £99 DIY finger prick test at home or for small extra fee can get blood drawn at local to you private clinic
But GP should test these vitamins as low vitamins are linked to thyroid issues & long term use of PPI's
Lottie, there are certain tests the NHS won't let him do. He may order them, but the lab will just refuse. In the end, it's the lab that decides what tests are done, not the doctor. I think that if you want to get well, you're going to have to come to terms with certain gaps in the NHS - like lack of testing and training of GPs. The choice is yours.
I know the choice is mine. Are you saying that everyone who has all these tests done and pay for it privately plus pay for private meds are all well and have no problems?
I am feeling ok it's only first starting levothyroxine last week I had few days of feeling really unwell and I have found on here it would have been. I now feel fine and am monitoring myself until I go back to doctors for check up.
My doctor keeps a check on everything and I'm satisfied with that.
Some people on here are telling me that health things I mentioned are probable all down to my thyroid. I feel it's a very sweeping statement as they don't know my medical history etc.
I am not saying there's no chance it could be but I don't believe everything is because of my thyroid, and having a comment like you probably wouldn't need all your meds if your thyroid was sorted and I had private blood tests. I don't think is helpful when I have just been diagnosed and getting my head around it. I wasn't ill so it was unexpected.
No, of course I'm not saying that. What I'm saying is that they stand a better chance of fixing what is wrong if they take control of their health into their own hands.
You say your doctor keeps a check on everything? So does he test for TSH, FT4, FT3 (the most important one) TPO and Tg antibodies (because you need to know if you have Hashie's) vit D, vit B12, folate and ferritin (because the body can't use thyroid hormone if they aren't all optimal)? The NHS will only allow FT3, TPO and Tg to be done under special circumstances. How does your doctor get round that?
It is perfectly possible that all your health problems are down to your thyroid. Thyroid hormone (T3) is needed by every single cell in your body, to function correctly. So, if T3 is in short supply, it's understandable that any part of you can malfunction. We don't have to know your medical history to know that that is a possibility. So many people have found that when they optimise their T3, other problems sort themselves out. I don't see why that comment is so unhelpful, we all know that you're just at the beginning of your journey, but people wanted to give you hope that things can get better when you're correctly medicated, that's all. No-one is getting at you, we all care for each other, on here.
I don't know about T 4 T3 etc and don't ask my doctor.
My doctor told me that my latest results had changed and I now needed to be on medication it was as simple as that to me and no different when I have been diagnosed with other things and needed medication.
I am not unwell just seem to have had side effects from the levothyroxine. My original question was if others had experienced side effects. I felt overwhelmed with people going on about numbers, vitamins, private scripts, buying meds on internet and telling me how I should get a print out of test results and put it on here so people could see what doctors miss. Also telling me how I should take my meds. It was all overwhelming for someone just diagnosed, who feels pretty ok considering.
It's been too much information too soon.
I trust my doctor if I have any concerns I will raise them and he will listen and help in whatever way needed.
The directions are on the packet on how I should take the meds.
Regarding anything that comes along I know my doctor will advise within the guide lines he has to work with. I can talk to him and do ask questions if I feel the need.
I personally would not pay a doctor for private scripts or take unlicensed drugs or pay for private blood tests etc.
Everyone makes the choices they are comfortable with. You have all made me aware of how things can be so thank you for that.
Yes, I do understand that it is all totally overwhelming when you first start out. And I do wish people wouldn't do that! But everyone is so eager to help and add their bit of knowledge/experience.
Personally, I like a slow approach - one step at a time. And, for me, the first step is always getting a print-out of your labs, and getting to understand them.
However, I understand that you are not yet ready for that - and, with a bit of luck, you won't need to. Hopefully, you will be perfectly fine on levo and regain your health.
But, you have to understand that people on forums like this are the odd ones out. Millions of people do do very well on levo only, and go back to living normal lives. We are the ones that don't. The odd ones out. We are the ones that can't get diagnosed, can't absorb the treatments, can't convert, can't tolerate T4, etc. etc. etc. We are the complicated cases that doctors can't cope with because they don't have the in-depth training to do so. Therefore, when someone new arrives, everyone assumes that the newbie is in the same boat, and rushes in to help - quite forgetting how overwhelmed they were when they first started out. It's kindly meant, but not always helpful, I know.
Try looking at it this way : your doctor is only one man, with only one brain. Who knows how much that brain has absorbed from his experience and his training? And how much he has forgotten? Do you remember everything that you learnt at school? I don't, I'm sure! So, it's possible he might forget some things, and there maybe things he never learnt.
We, on the other hand, are many beings! Over fifty thousand brains, all with different experiences, and bits of knowledge we've picked up over the years. From our joint experience, we can look at blood tests and instantly see things that your doctor might have missed. And, if we make a mistake in something we suggest, there is always someone behind to say, no, that's not correct. Collective knowledge and experience always has to be better than that of just one man, even if we didn't go to med school. I think it was Dr Peatfield that said : the only expert in any disease is the patient. And some other worthy doctor said to doctors : listen to your patient, and he will tell you what is wrong. But, collective doctors have forgotten how to listen, I'm afraid.
So, take it easy, do it your way - which is your doctor's way - but if things don't work out, you can always come back here, and maybe we can help you sort it out.
I feel better now after reading that and understand why people said what they said, even if I did say I was only diagnosed last week.
All I know about hypothyroidism is you seem to gain a lot of weight and have little or no energy. I realise now there is more to it and it can have serious health risks.
Hopefully I will be ok but if not I certainly will question things.
Thanks again for all you said it was the most informative reply
I think I will move to your area and go to your GP 😁 in the last two years I've spent almost £7k on useless endos and ultra sounds, scans and blood tests nearly all involving primary hyperparathyoidism. I just acquired hashimotos which was never picked up, along the way!
In that case, I would go to your GP and describe your symptoms so that he lowers or stops your levo. It sounds as though you felt better before. Or you could ask him for anti-histamines to take before levo in case you are allergic to the fillers
I had those side effects when the pharmacy substituted Synthroid for levothyroxine. You'd kind of think they'd be the same thing but they aren't. You might have been having a reaction to something in the med itself, or even the filler the manufacturer uses. Check the other ingredients in it, even the ones they call "inert ingredients."
It all sounds chaotic with meds. I've also had tummy cramps, terrible fartiing, and feeling jelly like off and on, dry mouth too.
Being hypothyroid is strongly linked to poor gut function and low vitamins. Just ask your doctor to test vitamin D, folate, B12 & ferritin for you if you are unhappy going private route.
I have several times posted a paper (rather, the abstract) which shows that hiatus hernia is all too often found in people who are later found to be hypothyroid. (This isn't some universal statement which claims that always to be the case - but often enough to raise questions and push anyone diagnosed with hiatus hernia to at least being tested.)
You are legally entitled to have copies of those many tests you have had done over the years. That way you can then post here with more information. I have been on this forum for 6 years and you would be shocked to learn how many people have found their GP's have told them everything is normal when in fact the results have been low in range and keeping people unwell. Being in range is not enough - it is where you are in the range that is key. I am sure you have been Hypo for many a year - as it can take years before it shows in bloodtests. I see you have been on a weightloss forum - also another Hypo symptoms and possible Low T3.
Osteoporosis is far more than just Calcium and VitD - check out Dr Sarah Myhill below ....
How much VitD are you taking ? B12 injections will be needed if you continue with the PPI's thus avoiding the gut. Low B12 can become a neurological condition with a result under 500 if left untreated.
Do you know what your calcium test result was? I get everything ( the few things my surgery can do printed off as I don't trust them) if your calcium is high end normal have you thought of asking for a parathyroid blood test. PHPT can cause osteoporosis.
A large percentage with Hashimotos (autoimmune thyroid) find gluten free diet very beneficial. A small percentage are coeliac. Hence important to know if you have Hashimotos (high antibodies). Often patients are either not tested for antibodies or not told they have them as currently many medics considered it irrelevant to treatment.
What a minefield it all is. I have been on the hypothyroid journey for 11 years now and take purified levothyroxine - I was unable to tolerate normal Levo - felt like I was being poisoned.
When I was in bed ill and housebound for 5 years I never thought I could say that anything good would come of it. I can now see that I have made many friends, I run the Midlands thyroid support group.
I am amazed how much I have learnt about health matters - and can honestly say that I make it my mission in life to not take any other medication, whether it's a pill or a cream, a needle or a patch I am not taking anything else and my dream is to not have to take thyroid medication.
I watched "the truth about cancer" by Ty Bollinger 2 years ago and it changed my life - I now know why there is so much cancer, whether are so many autoimmune diseases, and why cancer charities keep asking for more money and the CEO earns circa £350,000 and there still isn't a cure according to them.
I now know what goes on behind the scenes, and it's. It healthcare, its sickcare.
Doctors are big pharma reps.
All these drugs are shortening lives, they don't work at fixing the problem, they cause another.
Dr Chatterjee gave B12 to the man who had been suffering for 20years and he is now well! Yes a vitamin, not a drug!
Don't be brainwashed, study, research, read, watch, listen, prepare to be amazed of how corrupt the medical system is and how you can get better.
I think it's unfair to say all doctors are the same and an endocrinologist is a specialist.
I do understand where you are coming from as my daughter experienced negativity with PCOS different doctors with different attitudes and that is also a complex condition. We found out plenty through research and now she has a wonderful caring specialist.
When I looked up about thyroid I found it very complicated and gave up.
The question I asked was only regarding side effects as I was only diagnosed last week and started meds and then became unwell for few days. Now I'm fine.
This is the beginning of my journey and if I hit any problems I will discuss it with my doctor who is excellent.
I understand. Tho it sometimes seems as if they all have that attitude, they're really in the minority. I just happened to have run into a string of stinkers. I have a great endo now, but we have to be ptactive about our care. For years I wasn't now I'm nor afraid the insist on answers.
Hi Lottie yes you are not alone my doctor placed me on levothyroxine 100 milligrams after my thyroidectomy. Well long story short overtime I began vomiting and I started experiencing muscle weakness, muscle tightness and stiffness I'd gained weight and my blood sugar levels increased. Levothyroxine can raise blood sugar levels Google it and see (even in non diabetic patients like I was at first). I ended up with type 2 diabetes due to weight gain my primary Dr told me that the Endocrinologist should of told me that when he checked my blood work I knew something was wrong because I began urinating very frequently especially after eating a carbohydrate....My blood sugar levels was normal at 104 (at first) in the month of March last year 2016. Right now Im taking NP thyroid which is the pig thyroid 90 milligrams and boy oh boy I can tell a lot of difference. Right now im trying to loose the weight that Levothyroxine has done to me...If you want my advise Lottie try something else besides Levothyroxine if you can, because that drug is just pure poison ! Right now I'm really forwarding myself to just get completely off medication and just go strictly biblical eating the herbs of the field fruits and vegetables and other herbs seeds of it's kind... By me being A born again Christian I'm studying and realizing and learning, that, any food thats grown from the ground is good for man because man was made from the ground.
Thank you for telling me. I do get about getting off meds and eating from the land.
My doctor feels all drugs are chemicals and should only take what is really necessary.
I believe all medication is poison and that all our food is full of rubbish, treated with chemicals and probably contributes to many health problems, plus pollution.
You're are most welcome.. And I thank you, Lottie you're absolutely right it's a struggle eating healthy especially when you see these food commercials off television...Their always advertising junk food like its nothing wrong with it. But all thats in the plan to get you hooked to the Food&Drug scem ! They cant make money if we're all healthy. Be blessed in good health. Bye.
I'm sorry to say don't reply to me again.
Your experience of the medical profession is not mine.
I find some of your remarks quite insulting about the medical profession, they are only human and my daughter is part of that profession and cares and literally saves lives.
Hello again I've just been catching up all your very valuable remarks and have noticed something. A post said earlier that hayfever could be agravated by levo. I've had hayfever for years which started in feb/mar and stopped in oct/nov depending on weather. Since taking levo, in January, I've not had hayfever. I notice I sneeze twice nearly every day but no other sypmtoms. It's been brilliant! Honestly I used to be ill with it even though I took tablets, nasal spray and eye-drops for it. I'm sos happy as I can now walk in parks and gardens and my eyes aren't streaming. Thats been one good thing about the levothyroxine.
I have hay fever and suffered for years too and been taking Fexofenadine throughout the year for years. I get more itching, nose and mouth and chestiness. I will see how I go and let you know . I dont take the Fexofenadine every day and I will stay off it and see how it goes.
in reply to
Thanks for that yes I seem to be ok I'm about six weeks in now of taking levothyroxine. I don't know how I'm actually supposed to feel? In some ways I don't feel any different than before I started on them
Yes. First week, I felt my heart racing, breathless and a bit sick. Thankfully it subsided. It's just the body having a sudden rush of hormones. It takes about 6 weeks for it to absorb the levothyroxine properly.
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