Unacceptable side effects of Levothyroxine

After reading your side effects it sounds just like what I was getting ?.

I actually wrote to the Pharmaceutical Company explaining my side effects . To

be perfectly honest they were very good and wrote back to me asking for the name of my Doctor etc. So if you write to them Atavis I think they were called you must tell them of your side effects ??

Also I have still been researching natural thyroxine there are a few out there one is called Hypitrol which I was thinking of trying ?. I asked my doctor about natural thyroid treatment she said she couldn't comment as the Medical profession cannot measure the results as like prescription drugs ?, so I would try all your options but the Levothyroxine has actually been accepted by my body but it took just over 2 months for my side effects to subside. Good luck in your quest and if that fails then I suggest you go and see an Endocrinologist and go private if you can afford it ? Hope that helped?? Carole

Im wondering if being overmedicated  on synthroid, and menopause times etc....can cause lupus? Cause yup, they think i have that now....good ol' lupus!

I think the synthetic thyroids don't do anything but show a spike in the levels in the bloodwork, they don't work right in the body, and they cause a ton of auto-immune disease. Switch to a clean NDT, go gluten-free, supplement boron, go to a good acupuncturist trained in the orient, and do a massive whole body cleanse.

Good luck!

Agree completely. Ruination of Healthcare came with HMOs when doctors were no longer responsible for their practices. Doctors joined "Country Clubs with deep pockets" to protect poor or dangerous practice . When these groups squeezed doctors out of independent practice they could call the shots and healthcare was all about treating sx  with drugs, so much more profitable that helping people restore their health. It is financially impossible for a young doctor to set up an independent practice. I know my PCP was forced out prematurely in the mid/late 1980s  and I know a doctor who opened an Intergrated Practice but I could not have afforded her.  Her practice would do lab studies that were related to the health of what ever and not something that proved you had some dysfunction - she knew that by examing you. Between the "Big Labs and Big Pharma we are being pushed in a long painful death and our doctors are neutered no matter how nice they are. We don't need more health insurance to fund this broken system we need to get help to restore a "Healthcare System" and get our doctors out of the pressure cookers they have to practice today and now for more than 30 years. Probably won't get posted, but I am a retired nurse I I do know what I am talking about!

Have your blood tests such as 'leucocytes' results improved?are you testing T4 and T3 to see if they are now in range?

It is really wonderful how supportive some people can be because you feel angry and then betrayed when you discover how doctors even the nicest ones can ignore very real sx and treat them like another ailment. I understand the pressure cooker they survive in in the healthcare industry, but it is cruel to us. I have been on Vitd 3   2,000 units a day since the get go. I occasionally take Cod Liver oil tabs  and now 2 tabs daily. I started  a combo Calcium (1000 mg), Magnesium (400 mg) and Zinc  (25mg) Supplement after stopping the Levothyroxine 75 mcg. I felt safe in doing this because I had no sx prior to be placing on the replacement in response to a TSH lab done by Quest Lab. I had felt well prior to the replacement and afterwards I felt like a racehorse on fire. I felt like my body was racing all the time. When I reported this I was told my body was adjusting to being normal. I tried so hard not to be "my own doctor" I trusted . I have not felt well in these nearly 5 years. Then in December 2014 I had low grade high BP and I was placed on Lisinopril 5 mgs and Amlodipine 2.5 and last year the Amlopdine was increased to 5 mg. My whole health, physical ability and stamina has gone to hell. I became fearful I might be starting with some type of neurological disorder! We had been going through a long difficult period trying to sell our farm, so when the pressure was off this past Summer I gave myself a month to relax and expected to start feeling somewhat better, when I didn't I started exploring medication websites and they were not helpful, but a light went off "class action suits" not for purposes of suing anyone, but to see if there had been any complaints not listed on the usual sites. Reg Flags went off and it lead me    I asked best medications for treating hypertension. There blog was full of patients who could have been me. It was horrifying. I thought hard before I did anything. Then it came to me does Levothyroxine  have any such problems. I asked can Levothyroxine cause high BP and another eye opener, YES and even confirmed on a Mayo Clinic site. I did e-mail them my experience for all the good it will probably due. My first week in a half was a little rocky, but I am just over 2 weeks off both Amlodipine and Levothyroxine and I am feeling better. My BP is not all that changed, but I have continued the Lisinopril cause being an ACE inhibitor I understand it has a great rebound effect. I understand magnesium is Nature's CCB, so my body may not be negatively affected by withdrawal of Amlodipine. I plan on continuing the regime  and checking my BP until my next physical in December . If all goes well maybe the doctor will take me off the Lisinopril. He may drop me as a patient and I guess I am as prepared as I can be. I wonder if my t4 was not properly converting to t3  and perhaps that may have reflected misleading numbers and with a 1 1/2 years on thyroid replacement that lead to a low grade hypertension. Sorry to bend your ear I guess I wanted you to understand my process. I too would like to help others. I like to live my life by wearing out and not being poisoned. It has been quite a painful journey and I hope I can fully recover. Thank You

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After 8 different medications, I can assure you, they are not effective. 

I got relief from taking an essential amino acid supplement.  Give them a try.

Hi Catherine, my understanding is that cysts can produce their own thyroid hormones which mess things up with people that have cysts. For those people with 'standard' hypothyroidism (i.e. without cysts) thyroid replacement hormone is essential and not optional - like a diabetic needs insulin. However it is possible for some people with diabetes to be able to adopt lifestyle changes that enable them to reduce the amount of insulin they require, similarly with hypothyroidism. Such lifestyle changes can include taking Amino Acids. Personally, I wouldn't advise anyone with standard hypothyroidism (such as Hashimoto's) to stop taking thyroid hormone without consulting their doctor or, at the very least, having T4 and T3 blood tests monthly to check that their levels of these hormones aren't going dangerously low. Not having thyroid hormone when it is needed, is life threatening. 

My view is there are a number of things that can mean an individual has problems with the thyroid medications, both synthetic and natural. Firstly, the fillers (i.e. the extra things that are put in tablets to help bind them together and aid absorption by the body) - an individual can react to some of them. Secondly, whether a person can convert T4 to T3 efficiently (I found out I couldn't when I came off thyroxine for 10 days prior to switching to natural desiccated thyroid (my T4 was in range, T3 was too low - as there was enough T4 to be converted, the T3 should have been in range). When I switched to NDT the journey wasn't simple because I reacted to the first two I tried (both porcine based). I swelled up with the first (NatureThroid) and thought it might be the fillers, so I switched to an NDT without fillers (WP Thyroid) and still swelled up, so I concluded it might be that it was pork based - even though I can eat pork. So I switched to a filler free bovine based NDT (ThyroGold) and am fine. If you do switch to NDT, it is essential to build up the dose slowly - to give your body time to adapt to getting T3 directly (as part of the medication) instead of your body having to convert it from T4.? There are some things that are known to help improve hypothyroidism.  Firstly stress is really bad for the immune system and can result in a person developing hypothyroidism. Secondly gluten. Thus as a first step, try reducing the stress in your life (not always possible) and cut out gluten. I found that I reacted to soya as well. IF, you do decide to continue not taking thyroid hormone it is essential to keep testing, to check your levels of T4 and T3. An endocrinologist told me (and I have subsequently read it in a research paper) that Ferritin is essential for one's thyroid to operate correctly. So another essential step to improve health is to ensure your Ferritin level is above 70 (even though the lower limit is much lower than this). For those people having problems with synthetic thyroid hormone - ensure you take it at least 2 hours away from any iron or calcium supplements, as these can impair absorption and lead to hyper symptoms & high blood levels of T4 & T3 (and low levels of TSH) & hypo symptoms. For more of an explanation, look at the 3 free chapters provided on the Q&A section of the ThyroGold website. This can then be cross checked using Google Scholar.

Thank you for your response. I don't know for sure why I was all of a sudden dx with hypothyroid about 4 1/2 years ago. I am guessing the TSH cause I had no complaints or issues. I do recall telling the Doc I felt like a race horse and not in a good way after starting replacement. I felt like how they describe people feeling on "speed" not being a "medication junkie" my experience with medications essentially were an occasional ASA. I was reassured I was just returning to a healthy state. Well it's never felt like that and we had a lot of life challenges, so I didn't need a health issue so I complied. About a year later I showed up with  low grade high BP out of the blue cause I always had had lower BP and high BP wasn't in my family history. Again I complied you know the fear they put into you about stroke. This Summer a 13 year extreme hardship resolved its self. Disappointingly ( a land investment that was our retirement cashed out at a 50% + loss). I closed the book and going home I gave myself a month to relax and by the end of 2 months when I wasn't feeling better and having more time and computer access I started to explore. The usual medication sites weren't helpful. See I could trace my not feeling well back to first taking medications, but honestly I never suspected the thyroid. I am a follower of Jesus Christ and I pray about everything.. I felt so crippled by my myriad of symptoms I felt like I was crippled like a person who had had a one sided stroke and half wondered if I was coming down with some neurological disorder. That is honest to God terrifying. I have been blessed with good health and I don't abuse myself. It came to me look up class actions to see if there are any suits out there for either of the BP meds I was on. Red Flags! I next ran across the site when I asked the question "Best drugs for treatment of high BP". You can't believe what I run into a whole bunch of threads that could have described my symptoms even better than I could have. I even recognized some that I was ignoring. Mind you I had brought up the symptoms to my doctor and he acted as though they were totally separate problems as I was scrambling to make sense of these sx. . Never once did he ever acknowledge they could be medication he had me on. It makes you angry and betrayed. At this point we are talking about nearly 5 years of my life! Wasn't it bad enough we were going through 13 years of pure hell with the farm or was the stress a safe cover for the doctor ignoring my SE?  I was determined I was coming off the Amlodipine pronto and when I read magnesium was nature's CCB I though I might be safe of course I prayed about it. I decided to go with the magnesium and nettle which is a natural diuretic. I hoped I would be safe. Somewhere in there it came to me like another " word" . Could Levothyroxine cause high BP I thought crazy cause it is just a replacement, but why not ask the question since I was surprised to find out what I had about Lisinopril and Amlodipine when the doctor had been mum to my complaints. So I asked the question and to my sheer horror it can, but I didn't trust and went to the Mayo site to see what they had to say and sure enough they do confirm. I am guessing that it is probable this is where this whole horror show started for me . An incorrectly dx thyroid problem which as a SE produced low grade high BP. I seriously wonder about Quest labs after all they are setting the levels and doing 90% of all the lab work in the USA. There is an ugly reality that has occurred to me that America is not as sick and "they" would have you believe, but America is suffering from SE. The healthcare Industry is making with own customers! Lets face it there are tons and tons of money pouring into the healthcare industry everyday what a gold mine! Of course I also believe that cancer was cured 30+ years ago, but it is such a "golden cow". American Cancer said they would close when cancer had been cured, but all that money!!!!! Most people can't wrap their heads around how one human being let alone thousand stand idle while people suffer and die. All I have to say remember the Holocaust! Remember how long it took the USA  come to the aid of people dying in Germany even when leaders in this country had become aware of what was going on in Europe. Last night's news there was a report that they may have found a cure for some type of cancer (channel 5 news here in MA). Guessing they have another pill or potions to push at a great cost. We just lost a family member who totally trusted healthcare industry. The feelings are raw right about now. I am off  all but the Lisinopril which is an ACE Inhibitor and has rebound effects, so I will continue that and  the magnesium that has zinc and calcium, as well as nettle, vitamin D3, and 2 cod liver oil. I check my BP at a calibrated site at our market and have my PE in December. I am prepared my doctor may well drop me and will try and come off the Lisinopril by reducing the dose until my script runs out. Of course I pray to the Healer, Our Lord Jesus Christ. If something changes in the meantime I will have to adjust and so I value the information people share about their struggle and I am in no way arrogant. I have better days and then surprises. These chemicals really do a number on your body and some may not be reversible. Again thank you

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Hi Barbara, my feeling is the cysts make dysfunctional thyroxin that just makes you sick. But also, the cysts develop as a response to low thyroxin in the first place. Throw the meds in the mix and it's believed the meds will shrink the cysts. But, alas, it isn't that easy. Maybe for some people it works that way. The NDT might have helped. But, I had a lot of flairups and inflammation while on the levo. I really think the levo made it worse, as while on the levo, the cysts, which previously had not increased in size for over ten years, grew enormously while on the levo.

once off the levo, the copyists decreased in size. I still have flairups of inflammation, but the cysts continue to decrease overall.

Hi Catherine, so for you levothyroxine was a disaster, for me it was a lifesaver, literally, as my thyroid has been completely killed off by immune system. However to be able to function I needed to be dosed at the top of the T4 range. By doing this (I presume) that I was getting enough T3 from my inefficient ability to convert T4. I still didn't feel well though (presumably because my T4 was too high). NDT (ThyroGold) has improved matters considerably, however I am now battling Lupus and numerous food allergies and intolerances as well. Would I have ever developed these conditions if I had NDT earlier? I'll never know.

Between us we are good examples of two of the extremes of thyroid disease!

Hi Barbara, sound so like it's really perspective. I'm battling horrible autoimmune disease. No point in wasting time diagnosing lupus and fibromyalgia, as docs don't have treatment for this either. Yes, I have at least fibromialgya, severe arthritis, etc. I'm a mess. The difference is that I feel my autoimmune disease was accelerated by the levothyroxin.  

The entire right side of my thyroid gland has been consumed by the cyst. Basically eaten up by my own body. This accelerated while on the levo. 

While the levo levo didn't work right at any dose, I really needed it to be in the high end of normal to have any benefit. Same again, as you. Really a lot of similarities, just different perspectives on what's going on. 

I agree with you that part part of the problem is the T3 levels. But I don't think it's a conversion problem from T4-T3, as much as a conversion problem from T-rT3 due to toxicity. Potato, patotto.

Hi Catherine, I get fibromyalgia symptoms when I eat foods I'm intolerant to. It's taken 10-15 for me to work out which ones as there are a lot of them, some of them have been detected by RAST tests others by an exclusion diet with each food item withdrawn and reintroduced several times to check it is actually that food causing the symptoms. Citrus fruit is one of the worst food groups. Lamb and pork too - plus anything with high Oxalates - though for some reason I'm OK with kale providing I drink enough water (1.5 litres a day). One of my breakthroughs came when I read about gut parasites from a pharmacist who backs up her blog with research citations (who I can't name without this message being moderated). When I read about the symptoms of blastocystis homonis and told them to my NHS GP he said 'but this is everything you've been complaining of'. I tried saccharomyces boulardii as a treatment but it didn't noticeably work (it's difficult to get hold of a potent version in UK), but I seem to have had success with Clove, Black Walnut Hull, and Wormwood. Success is defined by my chin no longer feeling like sandpaper (due to a rash that was barely visible, it just made me have a 'healthy' (!) glow) and my being able to reintroduce small quantities of some foods. I'm telling you this in case it helps you or others. There are research papers that link hypothyroidism with gut parasites, in particular blastocystis hominis (hope I've spelt that right).

Would surgery to remove the cyst(s) help? Apparently we can survive with only one thyroid gland if necessary. I also agree without about high reverse T3 (aka rT3). I seem to have had that as well as an inability to covert T4 to T3. The reasoning being this is... The suggested treatment for rT3 is T3. I've needed much higher doses of NDT for the first year (presumably because the T3 in it is being used to get rid of the rT3) and it has now tapered off - I was on 750mg daily at one point in winter of 2015 (split into two doses of 150mg) and am now on 300mg daily still split into two doses of 150mg. I'm still on a maintenance dose of clove, black walnut hull and wormwood which involves me taking it in the morning and at night one day a week (on an empty stomach, clove first followed by black walnut hull and wormwood 30minutes later and not eating for half an hour afterwards). It sounds like there are similarities between us, but where we differ is that you still have a thyroid gland that is functioning and producing thyroid hormones to some extent and I haven't - which is why you can get away without taking any thyroid hormone replacement, and I can't (without causing serious harm and eventually death).

typo - missed out the word years at the beginning that should have read '10-15 years'

Hi Barbara, I also get food intolerances. What I've found is that when the thyroid stuff is on track, 99% of the food tolerances go away. By the time I was done with the levo, I couldn't eat anything. I'm absolutely positive the levo causes massive autoimmune response to the gut, resulting in massivie leakage and infection, as well as parasites. Parasites with a are a disaster. 

The FIRST thing I noticed with the aminos is that within about 4 days, the gut stuff was drastically improved. 

The medical system in my area has gotten so bad, they basically can't diagnose or treat even the simplest thing, much less something like parasites. It's a total waste of time and energy expecting any sort if result from the system here in California. My mom is on medicare and they keep changing requirements so it's impossible to get any sort of treatment at all. 

Its so bad its become a system for Euthinasia, because everything they do only makes things worse, and they're so negligent, you die while trying to get treatment. If you don't want their abusive treatment, they take out a welfare order to force it. I can't even take my mother to the ER because all the hey want to do is admit her and pump her up with drugs, and attach a bunch of wires so they can pretend to monitor her, while they completely ignore caring for her. 

This time will go down in American History as a medical holocaust if anyone's ever willing to be honest about the truth of things.

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My husband has hoshimotos with very high antibodies. He is currently taking naturethroid. After doing a great deal of research on low dose naltrexone treatment for autoimmune diseases I asked his Dr. if he could try LDN. Luckily his Dr. who is both and MD and functional medicine Dr. agreed to try. He said they had many patients with fibromyalgia and other autoimmune disorders do very well on it.

?My husband has only been on 3.5mg of LDN for a couple months but showing signs of improvement. The LDN has to come from a compounding pharmacy and we do have one locally.

Hi Catherine, I tried to get hold of the amino acids, however there was a glitch. Unbeknown to me despite clicking on a UK flag I remained on the US website when ordering them. Thus because my order was a few pence over the £15 customs free limit UK customs wanted to charge me 20% VAT and a handling charge which doubled the cost of the order. So I refused to pay and after 3 weeks it is being returned to the company I bought it from. The company I bought it from have been really good and have said they'll give me a refund - I've just got to check this has been done. Apparently when I ordered it I could have ticked a box to pay the UK taxes at the point of order. I've suggested the company make this automatic if someone is ordering from UK. So the answer is 'not tried them yet, but intend to'. As the amino acids do no harm and my diet is restricted, it makes sense I might be deficient in them.

On a separate note, I would urge everyone to get test for vitamin D levels, as deficiency means calcium isn't absorbed from the blood and can cause osteoporosis. My levels were very low.

It is also important for anyone who is on a dairy free diet to take calcium supplements as low calcium also leads to osteoporosis.

Thanks for the reminder re amino acids!

Low dose naltrexone is something I've heard if but not yet had time to research - do you know the side effects / contraindications and what tests need to be done to monitor it? It's less easy to find a reputable functional medicine doctor in the UK.

I loved the bone diet, the broth is very healing but a pain to make. They say heal the gut,  all disease starts there, and if you follow the protical of getting rid of dairy ,sugar and wheat , legumes for 21 days for some longer . get rid of belly fat ,lose weight ,feeling great more energy and most all pain goes away.. if you pull up thyroid and the gut you'll be surprised at all the drs. That are jumping on the wagon, just not the one we seem to find. I will say getting rid of wheat, sugar, dairy along helps with joint pain and mussels . The truth but you have to be prepare to cook for yourself  because these ingredients alone are in so much food

I make bone broth in a slow cooker, then it's not such a pain to make

Hi Gaye,

My dosage changes according to the time of year - I need more in winter and less in summer. Currently I'm on 412.5mg, which is split into 2 doses, 262.5mg in the morning and hour before food and 150mg 6-8 hours later again at least 2 hours after eating and an hour before food.

Dosing with NDT is individual and changes over time. At one point when I was just starting I built to 750mg. After 3 years it has now settled down to 300mg in summer. Google 'how to dose with NDT'.