Unacceptable side effects of Levothyroxine

Hi Kimia,

Yes, the levo worsens pain, causes boating, weight gain, kidney problems, autoimmune disease.

My experience was that it shows in the blood but us not biologically active, as my hypothyroid symptoms accelerated while on it even though my blood showed normal.

As for specifically, the neck pain, migraine, shoulder pain... I found that my thyroid swells often. When it swells, it presses on nerves and causes or contributes to pain in the general region. I get some relief by icing the back of my neck and with acupuncture and chiropractic. I've also gotten relief by taking turmeric. As you can guess, I've been in extreme pain, unable to function, desperate and have tried many things.

There is also, however, a different sort of migraine pain I get that originates in the center of the head, which I've always thought to be pituitary related due to the body's desperate attempts to regulate. Reducing thyroid and neck inflammation help this in a general way. This central head pain migraine occurs any time I switch meds and sometimes with dose changes. So I feel it is really related to getting the whole system balanced.

The question is, is your pain either one of these? Or is it purely caused by the levo or a combination? Or something totally different?

I should also say that I've found my thyroid disease flares following car accidents. And there is quite a bit of literature that neck injury can be related to thyroid disease

Hope that's helpful. If not, maybe it can help towards thoughts to eliminate possibilities.

Hi Kimia. Yes GP's do not seem to recognise or want to for that matter that Levo does have unnaceptable side effects. I was so ill taking this that eventually I would have had to have stopped working. The medics like it because it's cheap. My gp actually said it was only 30p per tablet compared to other thyroxine meds available. I now take liothyronine which is t3 based, but is prohibitively expensive. It may soon be stopped by NICE. No one knows why this is so expensive on the nhs £3 per tablet. But boy oh boy I feel so much better! If more people could take this the cost would come down. I have changed my diet lost 5 stones feel so different. Hope this helps

Hi kimia,

Your symptoms seem to be similar to mine. I've been having stiff neck and back problems for about 2 years now which is the amount of time I've been on levo, my docs have been saying the neck and back problems are down to stress and that's what's causing me to have headaches (3 times a week) the docs now want me to go on daily headache medication which I've refused. It just seems bizarre I started off with borderline underactuve starting on 25mg and the dosage had just gone up and up and so has headaches and neck and back pain. I'm going back to the doc tomorrow to tell them I'm coming off Levo and going on natural thyroid which has arrived in the post today. Thanks did your post it makes me realise I'm not going mad🙂

Hi MtviewCatherine, I didn't take levo yesterday and had awful headaches in the base of my skull no tablets seem to touch it although I have had headache for two whole days now, I've got awful throbing in my temples too, it's really getting me down, I'm reading about pituitary gland issues and makes me wonder if I've got those and caused knock on thyroid issues. I'm in a lot of pain and starting to feel sick 😔Any advice or knowledge wpuld be welcome I'm at the end of my tether, I'm going back to the docs today, thank you x

It's important that you build up the natural thyroid dose slowly to enable your body to get used to getting T3 directly instead of having to convert it all from the T4. Look at tpauk or thyroid madness site for dosing information..

There's a lot of things this could be. And I don't know them all. A couple of simple things to check are: have you had your eyes tested lately? The headaches could be from eyestrain. The neck an back ache can be from poor posture when sitting, especially if you work at a computer.or desk. Look up Neck Forward Syndrome, or at google images on Functional Posture

I've been to the docs today and they've taken me off thyroxine and want me to go cold turkey for 6 weeks, I'm going private for MRI scan to its rule out anything and peace of mind, they are referring me to endo now too and lots of headache medication, I think the muscle tightness in neck and shoulders I've been having for over year now has been contributing to neck headaches, I' was made redundant in November so I've not been sat at a desk since then, I have been out walking a lot in the days I've been well, but there's no way i could work at the minute. Thanks for the thoughts and suggestions I will feedback how the cold turkeys goes x

Hi Mrspeach, yes, the pain at the neck and base of skull... I also get this sort of thing. You know the thyroid medication suppreses the body's natural function because our bodies detect the meds and basically turn down normal function. 

when I went onto the levo, I experienced the most horrible migraines imaginable. When I went off the meds, also migraines, but way less. Pain particularly at the base of the skull,feels like my brain is swelling as the pituitary kicks back in and the brain fluid gets jammed up. There are several things to help: chiropractic adjustment, amino acids, liquid mulberry chlorophyll and turmeric supplements all help a lot!

Hi, I'm glad your doctor is taking this seriously. In your position I too would want an MRI scan, if finances permitted. Coming off thyroxine will prove whether thyroxine is responsible for the headaches.

It would be a good idea to have a blood test after two weeks off thyroxine, then immediately prior to going back on thyroid hormone replacement. The reason I'm suggesting this is my blood test after 2 weeks off thyroxine proved I wasn't converting T4 to T3 very well - the T4 was in range and the T3 was below range. As there was sufficient T4 to available to convert the T3 should also have been in range. So you have the ideal opportunity to gather information for use in future treatments. I'm really interested in how you are getting, so please keep us posted.

Thankyou I will try those supplements, when I went to my first private physio a few years ago with really mad migraines, he said the channels in my neck were blocked and did some work to release this and open back up and I do remember it worked, my nhs physio just gives me a list of exercises to do for stiffness. I have woke up after non stop 48 hours of bad headaches and the migraine tablets I got this morning have kicked in, I know it takes weeks for levo to leave my system completely but my stiffness feels a little bit better and only second day of not taking levo. For at least the last year I always seemed tense even after a day at the spa almost as if not being able to relax properly but with no real reason to be tense if that makes sense. What do you think about cold turkey off levo? The doc I spoke you yesterday said "no way" should I come of levo, today I saw a dif doc and after I showed her the list of side effects I've had she agreed I should stop it and not to take any alternative to see my side effects improve off it. I will hopefully see an endo in the next few weeks (private if I have to). Did you end up on thyrogold? Thanks for all your help Barbara too, it's really surprised me his little my gp knows about this condition. Feel like a lightbulb moment this week after reading side effects of levo and how weird and ongoing neck stiffness problems have been despite exercise, weekly sports massage etc. Thanks again

Also Pilates is really helpful for gently stretching, working and relaxing muscles. I go to clases at my local leisure centre. I tried a few before I found a teacher who's style that suited my body.

Hi Barbara,

The MRI scan private is about £200 pounds apparently, I'm a single mum currently unemployed due to recent redundancy so using some of my redundancy just to rule out anything serious, I'm also having lumps in my arm pit reinvestigated as got bigger and tender, 18 months ago they were checked out at breast clinic and was told it was my grand that looked healthy and just doing what it should do maybe fighting off something, mentioned to docs recently and they are now more prominent and two lumps. Makes me wonder if it's linked "glands etc". I've just had healthy eggs and protein whey shake and multivitamins. I'm on a total health kick now. Will definitely keep you posted and I will ask for blood checks in two weeks, I need to get my head round this T4 T3 business as really don't understand what it all means. Thanks for your advice...I'm reading the healthy thyroid diet book. I mentioned my migraines to a friends the other day and her 17 year old daughter has them and is also on thyroxine. So I've asked her to look into side effects. Thanks again x

The liquid chlorophyll I recommended is high in natural copper, is cleansing and will help with detoxing heavy metals.

i recently read that heavy metal toxicity can cause high rT3, which can explain a whole lot of things about thyroid disease.

Does anyone know what the cold turkey symptoms are for coming off levo? Does it affect you mentally? These last few hours been having some really low lost hopeless and sense of dread feelings, so the sort of feeings that you would have after a big upset.

Thanks for any feedback

Hi, mild depression is one of the side effects of hypothyroidism (i.e. too little thyroid hormone) which is what you will be experiencing if you are coming off thyroxine. I'm not sure whether your feelings of dread qualify as 'mild' though. I don't think my experience directly correlates to yours - as I wasn't converting T4 to T3 very well, I remember feeling generally low, so it wouldn't have been such a shock to me to have less T3. How are the headaches? I suggest you keep a log with dates and times and feelings/symptoms. You will need it.

My experience was...my memory played tricks on me; I thought I was functioning fine, but then later I'd found out I'd done something wrong e.g when sorting out tabets I'd get the dose wrong. I learnt tricks like getting someone to double check important stuff. It's like people operate when sleep deprived. Look up the symptoms of hypothyroidism and you'll know what to expect and be able to put strategies in place to cope. As you're feeling so down, it might be a good idea to make sure you're not on your own, if you can. Look up depression and strategies to cope. The MIND website is good. Hang in there. Barbara x

Hi Mrspeach, first off, I always get really teary and crying for no reason when my thyroid gets way too low.

When I went off the levo, I switched to an NDT. So that really wasn't cold turkey. When I went off the NDT, I switched to a bovine glandular. I finally got fed up with it all and went off the bovine glandular cold turkey and used amino acids, liquid chlorophyll (mulberry leaf) and turmeric.

i was shocked at how well this combo relieved the transition symptoms. I'll pm you the resources for these if you like.

Hi Thankyou for the info, to be honest today I feel great, im eating really healthy and eating foods to support thyroid and taking amino acids and sea kelp, last nights low anxiety moment seem to have passed with the support of some "calms" tablets. I will see how I get on for now and I'm sort of expecting to go down hill at some point, when I went on Levo 4.5 years ago I was only borderline needing it so I'm hoping I can manage off it but maybe with some supplements so I will see how I get on for now. Thanks for the support and advice it really means a lot x

Hi Barbara thanks us for you reply, today I feel great and been out walking, I've taken amino and kelp and vitamins and eating really healthy, I'm keeping a diary for how I feel (headaches gone now just a bit cloudy head now) and what I'm eating and supplements I'm taking, over the counter calms nighttime tablets sorted me out last night. Will keep you posted. Many thanks for your support x

Sounds like you're doing great! If you were only borderline, you have a much better chance of reversing the disease. The amino acids help a lot. I was on a really high dose of meds, so I was taking a lot of the aminos initially, but my kidneys couldn't handle it so I switched to protein powder and phenylalanine instead.

i was also experiencing the migraine and severe detox reaction, as well as tiredness, hence the turmeric for the inflammation and headaches, the. Liquid chlorophyll is amazing for energy and detoxing!

Thanks I will def need something for energy, my headache has gone now today my energy was down and I was day dreaming and struggling to concentrate on anything then I felt like my metabolism shot up and was almost nervous energy jittery then an anxiety slump now, oh it looks like I'm starting my period (had a show) so that's only 3 days off levo, I've not had one for well I've run a year, the docs said that was prob due to my coil. Also chatted to a lady I know today and she said she has been on levo for nearly 2 years and having awful stomach cramps and other symptoms, her doc has only ever checked her blood once so six months in. I've lost weight already I can tell as my coat zip was tight to fasten on Monday and it fits again, my apitite is zero too but forcing myself to have something even if just whey protein shake x

I'm so glad you are feeling better. Here are some things that contribute to better health...make sure your your levels of vitamins and minerals are in around middle of the range, such as iron, ferritin (endo told me it needs to be 70+), vitamin B12, vitamin D, folate. Research has shown that our bodies need 200mcg of selenium for thyroid health.

The headaches could be lots of things, but could also be intolerance to something you've eaten. Have a think what you ate in the previous 3 days. It can be something as obscure as nitrates or sulphates or corn (which is in everything - well that's what it feels like when you are intolerant to it).

Next time you are feeling down, try eating porridge. It has lots of the different B vitamins which are good for mental health.

I think the headaches I've been having while on levo are due to my stiffness, I was diagnosed with stress and tension in my back/neck and been having weekly treatment via physio and sports massage and doing daily exercises for example couldn't put my chin on my chest and when I tried I could feel really tight muscles pulling right up my back and neck into head, the docs said it was neck headache. I felt like my whole body's tendons and muscles were like tight elastic that just wouldn't stretch or ease, the sports massage and exercise did help but only for a day or two then they would go back to right again. My muscles feel so much more relaxed and at ease already and just going into day 4 off levo. All the above got worse the last 6 months or so since around going up to 100mg of levo. The very painful headaches in the base of my skull I've had since coming off levo I think are my pituitary glands kicking back in and detox from Levo and coffee and prob all the rubbish I was eating before. Thanks for the advice about about supplements and levels I will check out what the levels are in my current vitamin tablets and up them if need be...yesterday I could really tell how my flexibility had improved so chin on chest, head turn to each side... it was if I was ceasing up before. I def will not go back on levo. On another note have you heard of anyone having painful stomach spasms? Someone I know on levo has been having these and the hot sweats she was told she's in menopause but it could be a red herring. Can you believe my period is back well a show so far.... not had one for over a year!! I'm thinking of having coil removed due to copper content and to rid my body of any chemicals/ non natural (I'm not in need of it at the minute as single), do you know if coil can effect thyroid etc? Thanks again x

Hi, I have a Mirena coil fitted. I believe the period is likely to be due to your reduced thyroxine level (or if you have a Mirena coil fitted it might be due to the coil reaching the end if its life).

I have now had three Mirena coils fitted, due to heavy painful periods. The coils last for about 5 years. Having said this, I had a period after 4.5 years in January of last year (2016) and had the coil replaced with a new one and periods stopped again, so it was concluded that the coil had prematurely reached the end if its life.

I have been on thyroid hormone replacement throughout this time. Initially thyroxine, then from June 2015 ThyroGold. Over the last 6 weeks I have been reducing my ThyroGold dose (because I accidentally took too much in December). After a week of reducing the ThyroGold, I started 'spotting' (i.e. a small amount of blood - enough for a panty liner but not for a sanitary towel). This spotting lasted for 4 weeks. During this time I had a blood test for T4 & T3 both of which were in range. I also had other hypothyroid symptoms whilst my body was adjusting to the reduced dose (cold, sluggishness, waking still exhausted etc.). Although I haven't changed the dose since end December after 4 weeks these symptoms have abated.

This has happened before every time I reduce a thyroid hormone dose, whilst y body is adjusting to the new dose, I get hypothyroid symptoms and every time I increase the thyroid hormone I get hyperthyroid symptoms - irrespective of whether I am on thyroxine or ThyroGold.

I conclude therefore that I get hypothyroid symptoms when I reduce my thyroid hormone dose EVEN THOUGH the dose is correct.

I have included the detail so you have the information to make a judgement on whether my conclusions are reasonable.

So, back to your situation, given my experience I conclude you are getting a period because you have reduced your thyroxine dose, however, if you have had the Mirena coil fitted for 4.5+ years, it cannot be ruled out that it is because the coil has failed. (Note: Mirena coils give out progesterone which runs out eventually.) So, using the information you've given, I would suggest you wait and see for 4-5 weeks (since stopping thyroxine) to see if you still get a period once your body has adjusted to the new no thyroxine levels, BUT if you are worried about it mention it to your GP.

PM me what you wrote that's gone to be moderated.

I feel great, 7 days levo free and so far so good on supplements and eating healthy 👍🏻. Back to the docs for bloods in a few weeks. Then docs week after when results are back. I'm hoping to prove docs wrong by trying to maintain underactiveness with supplements and diet but will see how it goes. No headaches since day 2 too👍🏻Xx

Hi, Are you aware that too much iodine is toxic to the thyroid gland? It's like most things to do with the body - it is essential to have just the right amount. As you are getting iodine in the multivitamin you are taking, you may wish to stop taking the kelp. Most people have hashimotos hypothyroidism which is caused by immune system attacking the thyroid, not by a lack of iodine in their diet, and taking excess iodine is harmful. People with hypothyroidism often don't metabolise food properly to get the nutrients they need, so are low in ferritin, iron, folate, vitamin B12, vitamin D etc. So taking a multivitamin is a good idea. Selenium is necessary for good thyroid health, 200mcg daily is recommended. Best wishes x

Hi Barbara

So you think the multi vit and thyroid supplement should be enough? Do you know what the measure "pg" is, my thyroid support suppliment bottle is saying Selenium 60 "pg". 109% NRV. It looks like top is missing off the letter P so like a back to front y? Yes I did wonder if I was taking too much iodine so I only took 2 iodine tablets instead of 3 .

Xx

Hi, this is great - as a minimum you've identified the levo is causing the headaches. To make sure, you would need to go back on levothyroxine and see if the headaches come back, then stop it and see if they disappear again. You'll start feeling the lack of Levo more now you're past the 7 day point. the plan you've got re blood tests in a few weeks seems a good one. It was after I went off levothyroxine for 10 days then had a T4 & T3 blood test, that I found I wasn't converting T4 to T3 prooerly: T4 was in muddle of range, T3 was below. All the best.

If I understand you correctly it means micrograms. Its a Greek letter pronounced 'new'.