Unacceptable side effects of Levothyroxine

This is all so frightening and with these symptoms one has no choice but to change one's lifestyle DRASTICALLY !

No eating of sugar or salt. E

Sorry, don't know what happened there but I didn't mean to post in the middle of a sentence!

In eating fruit and vegetables you will get enough sugar and salt in your diet.

Take your medicine on an empty stomach and don't have breakfast until an hour later.

Favour wholewheat bread. Cut out all ready made meals bought at the supermarket because they are full of sodium(salt) which causes high blood pressure and water retention.

Buy skimmed milk, 0% yoghurts and only eat fruit, vegetables (no potato if you want to lose weight) and lean meat or  fish. Olive oil (two teaspoons a day maximum) can be used on salad.

Drink at least one and a half litres a day (preferably water without squash!)

If you are obliged to take any other medicine or vitamin, take it at least 4 hours after the levo.

Alcohol should be avoided as it dehydrates but 2 glasses of red wine are allowed as red wine in moderation is good for the heart.

Above all, start walking or cycling. Make exercise a habit; at least an hour 3 times a week but preferably an hour every day. If it is difficult at first, do less but with the intention of working up to an hour a day. That  is really important for losing weight, feeling better and getting vitamin D from the sun.

If I don't exercise now I put on weight but when I exercise I lose about a lb a week; not much  but better than putting it on!

Cakes, trifles, icecream etc are all a thing of the past and my only consolation is that I feel much better for not eating them. No fried food and no  chicken with skin ( fattening).

 Almonds, about twelve a day ,are good for cholesterol. If you follow these rules you should begin to feel better and I hope you ALL will.

Good luck to all of you. Just for info. I'm on 112.5 mcg levo and I don't take anything else. I

had to take a supplement of vitamin D but as soon as I got my levels back to normal I stopped. I do not take any vitamin supplements but rely on healthy eating to supply me with what I need. For the first time in 10 years, thanks to my diet and almonds, I have got my cholesterol levels  to where they should be.

Everyone, while finding their correct dose of levo should have regular blood tests after which levels should be checked at least once a year, if not twice.

Hi to all messages not just Carol.  Whilst I agree it is good to take control of your own health and eat healthily, exercise etc. etc.  I would advise anyone to research research and research re. thyroid problems.  There is loads of information out there on the internet.  The truth is that whilst Levothyroxine may suit lots of people it DOES NOT suit everyone.  Some people cannot convert the T4 only into T3 no matter how healthily they live their lives.  There are alternatives to levothyroxine out there which may suit people a lot more, i.e. T4 + T3 combined plus natural thyroid (dessicated pigs thyroids which contain all that a normal thyroid would make).  I have researched extensively, have taken Levothyroxine for years plus have taken natural thyroid.  I know that my life is completely different when I take natural thyroid i.e. more energy, slimmer, better mind frame.  I know this is not placebo effect as the difference is so dramatic.  All people who have thyroid disease either hashimotos or other (its also important to know this) are at risk of low adrenal function, low vit D, low ferritin etc. etc. and all doctors should check these out but most do not and most do not know enough about other complications which can arise due to this disease.  There are people out there fighting for the right to have more diversity of treatment.  Just look at the history of medication for thyroid problems and it will be enlightening.  Best wishes to all.

Hello,thank you for this very useful info.Ive been on Levothyroxine for 20 years + and I'm concerned about that as I seem to have lots of the side effects described by other people.My weight is to high and I find it so difficult to get it down to an acceptable level,my skin is dry,and I have severe muscle weakness. I was wondering if I can come off this medication.I'm interested in what you call 'natural thyroxine'.Where could I get such a thing ? Any help you can offer me I would be so grateful.

kind regards Tina

There is an article from stop the thyroid madness website in usa.

I am on natural which is called desicated. My naturopath doctor is going to try me on naturethroid brand next month. Also natural and costs less money than compounded version.

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Hello, I was on Naturethroid for a while and it seemed to work fine until I switched doctors and they wanted tme to use the levothyroxin, When I switched back, I went to the compounded, so I'm on that now because I don't want to switch again. The naturethroid works well and I'll probably go back to it at some point.

Hi everyone, I am 67 female and been on levo for 18 years 100mg per day for the past 12 years and like most people on here have suffered dry itchy skin, really bad aching joints so bad some days I can hardly walk, soals of my feet so sore it hurts to stand, anxious, depression, night sweats, unable to sleep, the doctors are just not interested so I made a desission and a month ago I just stopped taking the levo! Now I sleep at night no problem my weight is slowly coming down, the aches and pains are all but gone enabling me to go for daily walks. I no longer feel anxious, depressed or suffer night sweats, I did start feeling a little tired so I have started taking ginseng and kelp supplements and feel less tired, I have not felt this good in years. I intend to keep going on this current trend until my next lot of bloods are due at the end of August and see what the result is which should be interesting as my last bloods showed a leaning toward high blood pressure - as a family we normally have low blood pressure - high sodium levels and I have never added salt to anything, and my weight was bordering obesity yet before the levo I had been 8st 4lb for most of my adult life, I am now just below 11st for the first time in 18 years and already feel so much better for it. The best to everyone 😊

I drink distilled water, so that there is no fluride, limescale etc in mine. I also juice and blend vegetables and drink them, not fruit as they have too much sugar.

I too just tapered off. And am going to stop. Being bone tired is better than the ache I feel. I am depressed for the first time in my life, all from the synthroid.

Hi susanna 

i have been seeing doc and have now been told I have high blood pressure plus high cholesterol, so now have to change my diet, trying to lose a little weight but no luck fed up but not too bad. Hope you feel better soon.

Yikes! I've found that cholesterol levels are an excellent indicator of thyroid levels. My family tends to have very low cholesterol, so I've watched this and have seen first hand that diet has very little to do with cholesterol levels in many cases.  Over the years, I've noticed that when I've gone hypothyroid, my cholesterol levels are high. Interestingly, this is often more useful than the thyroid blood levels when I've gone extremely hypothyroid. I know when my lipid panel is crazy high, that I've gone hypothyroid and it isn't necessarily reflected in my thyroid blood work. This was especially the case while I was on the Levo. For me, the Levo seemed to show up in the thyroid blood work as working, while all other indicators were as if I was extremely hypothyroid. Cholesterol and lipids were through the roof! 

The idea that cholesterol can be manipulated by diet is very limited. Cholesterol is produced in the liver and is used to manufacture hormones in the body. Therefore, its less an indicator of diet and more of an indicator of liver function (which is sluggish with hypothyroidism), and the metabolism of the cholesterol into hormones. Remember hypothyroidism slows metabolism, so if you've got a glut of cholesterol, it's more likely it's due to other issues. If your cholesterol levels are high, it could be because your body is not converting them into hormones. Your body senses hormone levels are low and keeps producing cholesterol in an effort towards increasing hormone levels, but with hypothyroidism, organ functions are low, so they aren't making hormones fast enough, so you get a glut of cholesterol buildup.  So in the end, cholesterol us more a function of the metabolism than anything else.

On another note, cholesterol levels can also be extremely low when a liver isn't functioning properly. Unfortunately most doctors don't realize that extremely low cholesterol results in severe depression and even suicide. In addition, low cholesterol often does not respond to dietary changes, simply because it is not necessarily related to fat intake. Keep in mind that a paleo diet is extremely low in fats, and yet, the body still produces necessary cholesterol and hormones when healthy.

Thank you and everyone for all this information. I have only just found you all. I have been taking 50mg of levo for some years now and developed allergic reactions to "something"  - I know my breathing is compromised by car fumes, penicillin definitely as from a child.  But I never had any drastice reations (hospital visits) before I took levo. Plus the teeth grinding thing, now have jaw problem on left side-keeps locking. Also very dry fingers etc especially around nails which are brittle.  Have just had both eyes sorted (catarracts) and found out that Clenil (brown inhaler) can give or help to give said catarracts. Dry eyes now but not sure in if this is attibutable to the levos/  Also,  started  (2012) having what has been classed as panic attacks but usually results in extreme shortness of breath -I have blue inhaler (ventolin) with me all the time just in case - and then because Docs did not know why adrenalin needed to stop attack, they decided it was reflux and now on lanaoprazole at 15mg. Personally I think all this lot started when placed on levo's -  I thought I would try leaving off levo so stopped taking it on 29 04 until now 07 05 as have fasting blood test this 9th may - anyhoo two allergic type reactions to who knows what today - so may start taking it tomorrow again. DOH!   I was borderline (on the good side apparently) when they decided I should go on this - also around same time cholesterol pointed out as being too high ay 7.6 so Simvastatin given -- proved horrible as hurt muscles - Atorvastatin issued and muscles only occasionally  twinge. However, cholesterol came down, way down to 2.6 which was tooo low also, so decided with Dr that one everyother day would suffice - what he did not say (know) that also bad to be so low.  Anyhoo he left practice and now with someone that maybe can help or not help or just issue stuff as needed.  Not interested really as only has 10mins in which to sort each patient out.  Great!!  However -  breathlessness bordering on asthma attacks when sky high, so tests done and nothing conclusive found and no reflux - although last panic/asthma attack is when lansoprazole issued at 15mg for reflux as have minor sliding gastro-oesophegus hernia. 

So today was slightly unusual as twice (after food) breathing went odd, took piriton tonight and much better now.

​Not sure what to do about taking levo again tomorrow morn.  Breathing is  back to normal now.  Gut -  Dr has never discussed this although do have pain in right side for some time now, and yes he does know about it.  Just feel as though I am a guinea pig for the "try this for 3 wks and see- come back if anything wrong" brigade,  no real proper judgement on anything and the hospitals always, but always have a different slant on things from the Docs.

​The long and winding road to health for sure.  Thanks again for your info and hopefully we will all individually get the right dose/information very soon

​Much health to you and yours

Hi Vanguard, if your GP's answer to meds that make you sick is to give more meds, RUN! You need a new GP. This is a ridiculous slippery slope of compounded side effects and prolonged illness. Start looking around for natural and alternative treatments. There are tons out there, and the dirty little secret is that there are natural cures that are more effective than drugs. Yes, true!

Find yourself a good acupuncturist, who also does herbs and has trained in the orient. A good one will help you get some relief!

I've been where you are and I'll tell you that I had all the signs and severe side effects from day one of the levo. Over three years, messing around, my health declined horribly, with extremely difficult recovery, if ever. My recommendation is save yourself and your health by finding doctors and practitioners that offer alternatives to this horrible medication that obviously doesn't work for you.

Hi Susanna😃 are you still off the levo and how are you feeling? Numbers?

thanks Carol!  how are you doing anyway?  have you discovered any new things?  I'm trying to do pretty much what you do except I am using himalayian salt on some food since I cut out regular salt and processed foods .  Do you have any stiffness in the mornings?  Do you eat any beef?  I can't seem to lose weight though..even though I am excercizing

hmmm...so I had normal cholestoral before I went on levo..now after 6 months i'm on 75 cuz my tsh was so high even though my T3 and T4 were normal and I've always felt fine.  Now I have gained 10 pounds and have very high cholestoral, often feel stiff in my hands and feet hurt often in the AM.  I'm very frustrated and wonder if I go off levo if my cholestoral will go back to normal...I feel like my body is smarter than modern medicine and willing to trust it more than medicine...I get more blood work done at the end of September and I will be fasting before it done...

Hi vanguard. Yep Levothyroxine has a lot to answer. The side effects from it are awful, but GPs love it as it is so cheap. I have found that liothyronine for me is excellent. I do not pretend to understand why. Unfortunately, it apparently is very expensive- not expensive to produce according to my consultant, but the research the drug companies had to invest in. So now I am in conflict with NICE who say it is far too expensive for my GP practice to continue to support me. My previous GP informed me that in 25 years of practice, he had never heard of anyone being sensitive to Levothyroxine which is a nonsense as there are so many forums which dispute that claim. My new GP is much more sympathetic but it is a battle with NICE. If there were some way we patients could force the cost down of Liothyronine, I would happily lobby my MP or anyone who might have the influence to change the way Levothyroxine is prescribed. Any ideas anyone?