Unacceptable side effects of Levothyroxine

I've been on levo for about a month now after a total thyriodectomy. I have a head ache every day since I started the meds. I was great the first 2 weeks energy wise, now I'm tired and have gained about 5 pounds in 2 weeks. I have been to two doctors since my surgery and tell them the medication gives me a headache and they blow it off and tell me "no it doesn't", which basically seems to be what everyone says here, the Dr's don't want to hear it. .I have never had any health problems before this and have never had headaches before! It's very frustrating that the Dr.'s don't want to hear it. I have an endocrine specialist and she's awful. I know this is a UK board and I'm in the US. Its no better here trust me. I wish I had a choice to stop this medication but I know I have no choice, I have no thyroid. I am looking for alternatives and a new endocrine Dr.

I have been on Levothyroxine since last two months. First two weeks I my dose was 25 mg then it increased to 50 mg. This morning I had my first blood test. During this period I have not experience any side effect accept that instead of getting up at night three or four times for peeing, I now get up only once. I feel that this is beneficial side effect, if indeed it is due to starting Levothyroxine. I read all different side effects in this forum but I am not at all scared to continue with it. I shall report back after I hear from my GP the result of this morning's blood test.

In the event my GP decides to increase the dosage, I shall discuss with her all different side effects that so many people had on this forum and will make her aware of many unacceptable side effects. Hopefully I will not have any side effect.

I have been taking this poison for 9 years - and yes, I'm a slow learner - but finally I have figured out that it has caused more problems than it has helped. I just thought I was having more and more hypoT symptoms but in fact it was the T4 causing the problem. Initially it caused me to grind my teeth, have anxiety, worsened my vertigo. I then changed to T3/T4 combo and a lot of issues cleared, namely all the head stuff - vertigo, insomnia, eyes, headaches etc etc. Then for years I was on thyroid extract with both T3 and T4. But I was never quite right. Eventually I developed rheumatoid arthritis at a time when I was taking far too much thyroid extract... about 120mg. I was hospitalised twice as I could not walk anymore. My muscles and joints had gone. Taken off all meds I improved. This year my problem became severe with severe dizziness to the point of passing out. I was tested for diabetes and also addisons and cleared of both. This year I returned to taking T4 only as I thought maybe the T3 was an issued... and it has become clear now that it is the T4 that I cannot tolerate. Other symptoms it causes are a feeling of burning skin which I have suffered for 9 years, impulsiveness and anxiety costing me my marriage of 25 years, the head pressure issue and I suspect my swollen knees. This stuff is poison to me.

JLTNTL, Your post is really upsetting. Not everybody wants to, but it may be worth taking this matter into your own hands. Research hypothyroid and autoimmune diseases (i.e. RA, etc.). Definitely research the differences people have experienced between synthetic thyroid hormones versus natural desiccated thyroid and especially what happens when too little medication is administered versus too much. Read reviews, and read experiences, and read how people administer their treatment(s).

There are communities of thyroid sufferers on the net as well as doctors who practice an alternative approach to treating the illness. For all its qualities, the NHS is a bureaucratic body which is bound to take longer to update its practices and rulings than a private medical practitioner would be able to decide to do. There is evidence that special interests play a role in dictating medical policy in the US and UK, which should not be the case.

Doctors in the UK do not have enough autonomy to practice medicine in any sort of patient-focused way because they risk being struck off if they deviate from Rx and treatment guidelines. One size does not fit all, and the general consensus on thyroid management seems to be sorely lacking according to the chorus of pained voices of thyroid sufferers who do speak up.

Some people have had to research what products might help them, and have had to administer to themselves cautiously, while observing symptoms such as heart rate, temperature, etc. Natural desiccated thyroid is a supplement and has been used over 100 years with success. It was more successful as a treatment before the almost sole reliance on bloodtests as a diagnostic for thyroid function. A person can get this substance and has the right to use it. It's your life. Don't give up on your body, and don't let it fall victim to the neglectful attitudes of others.

Thank you Greendoor for your reply. After not improving on synthroid I managed to get NTH and used that from 2007 to 2011. It was certainly better than synthroid but only recently discovered that the T4 component of NTH I cannot tolerate - not in synthroid or NTH.

I am in Australia and after hearing of NTH went looking for a doctor who prescribes same. It was great in lowering the thyroid antibodies and I assumed it was good for my thyroid problem. But in fact the side effects of the T4 to me are as bad as being hypoT. Another symptom I discovered caused by the T4 is vivid realistic nightmares and flashbacks. These had become so bad along with other symptoms that I thought maybe i had PTSD. I thought I had done my research and was on top of everything about thyroid but now looking back I can see that it was the T4 causing me such bad issues. I just never assumed that a hormone I was deficient in and obviously required has caused me so many problems.

I finally stopped taking Levo 3 weeks ago and nearly all my symptoms have gone, I can get up off the floor without any discomfort, I don't want to brag but I can even do squats! The bad news is I saw the Endocrinologist after a 12 week wait and she doesn't believe my long list of ailments were down to the Levo nor does she believe it's entirely down to being hypo so now I have to wait for another 8 weeks to see her again so she can check my steroid and hormone levels and I am also having a brain scan just to make sure everything is ok because I complained forgetfulness, lack of concentration and general brain fog (I believe it's down to Levo). I had a blood test 8 days after stopping Levo and my TSH was 4.8 (previously 0.67 in Dec) but the Endo didn't think this was worth treating as only slightly high, I wonder what level it will reach in another 8 weeks when I see her again. These so called specialist seem to know very little about the condition they are teating and refuse to believe the pills they prescribe cause more problems than the condition they originally treat. Has anyone else had a huge increase in blood pressure since being on Levo? Normal for me was always 90 (late 80's) over 60 (late 50'S) and now I am 117 over 95.

I would like to hear from anyone that has had a positive experience with an Endo please.

I was told I had hashimotos twenty years ago but never took meds I had no aches and pains felt just fine living my life as normal (also have pcos) Then at 52 at menopause I had a very painful thyroid went to the doctors was given thyroid meds and have never felt the same since I have tried erfa levo armour and all the rest out there I cannot tolerate any of them I feel I am dying a slow death on them some of my side effects are breast pain ovary pain hair loss adrenal/kidney tenderness lower back pain shortness of breath

tongue swelling (scalloped) adrenaline rushes neck and shoulder stiffness odd blood pressure readings

from sky high to super low low basel temp internal trembling for hot to cold extreme dizziness strange head

pains feet and legs hurt brain fog eye tearing and the list goes on I have been to 7 endos most through Kaiser two private will never go back they have no clue why I cannot take the meds they suggested mental health what a joke I have also been to several alternative doctor too tried iodine adrenal support of all kinds

herbs glandulars hydro cortisone BHRT tried it all still feeling like tomorrow is my last day also when I take take the meds they do the opposite of what they are supposed to do I get more constipated hair falls out more put more weight on and my insulin levels goes sky high was never fat before the meds but then when I stop the meds I start to feel good at first but then the tsh goes high start to feel bad its a catch 22 don't know what else to do gluten free and have a excellent diet please any advise...

Hi Athina43. Since finding this site and realising I am not alone, I have thought about the time that I improved slightly and it was when I used T3 only medication. Last time I used T3 I began low and improved but for whatever reason my dose was then sent too high and it caused more problems. But my endo (or any other endo it seems) does not like to use T3 only and I have decided I will go back to that gp who prescribed it for me and try it again. I remember that it improved all my "head" symptoms - anxiety, hair, insomnia, eyes, headache, brain fog AND especially the vertigo that I had been experiencing - of which the T4 made much worse. However this time I will stick to a very low dose and be more patient for the improvement. Maybe this is worth a try for you too..

Thank you so much for your reply I have tried t3 before and I feel like I am on speed but I will try just a little bit again also I am going to look into infections also .....Athina

How did you get prescribed T3, I can't even get the Endo to check my reverse T3 as was told we don't do it in this country (this explains why we are all on this forum complaining of feeling ill)?!