Unacceptable side effects of Levothyroxine

I'd like to know more about IBS. Can you be more exact on what it actually is? I would like to try a replacement for Levothyroxine, but don't know what the alternatives are. (I was walking two and a half miles a day until my neurologist put me on Alpha Lipoic Acid. Since the nerve damage in my toes, feet, ankles, legs and back,  the fartherest I walk is to my mailbox.

Hi Jan, Thyroid disease is frequently accompanied by food sensitivities, which can be the cause of IBS. In my case 90% of the food sensitivities (and the IBS) go away when I'm on a good dose of meds. However!!! Gluten, the protein found in wheat, rye and barly, triggurs the auto-immune response associated with thyroid disease. So natural practitiners recommend going completely and strictly gluten-free.  This is extremely difficult but can save you a ton of health problems if you're diligent and disciplined about it. The meds and the gluten-free are the top two things that have helped me recover. Hope that helps!

Hi Smantha- Good job having the courage to try things out. Usually it takes about 3 months for the system to shift after changing meds. So if it's been less than 3 months, you may still be in for trouble. Keep posting and let us know how you do!

 

Hi Catherine- It's been way longer than 3 months now that I've stopped taken it. Only last week it was my sisters wedding and as you do, you have a drink or 2. I just started fitting throwing up and had to be rushed to hospital, they said for me not taking my medication it can just happen especially when drinking alcohol so now I'm back on them as I do not want it to happen again they even did a blood test and blood levels are still the same :S anyway I start to feel nervous again and just cry out the blue for no reason and start feeling drained more often..... I would go to the doctors but they'll probably have a go at me for just stopping them without having permission from a doctor first

Hi Samantha- Oh, that doesn't sound good.   For some people, the TSH is not a good indicator. So if they're using that as an indicator, they've just proven that it doesn't work for you. My TSH only spikes slightly when my thyroid is way too low.  It was only after I had a very large cyst and went to the right specialist that they finally tested everything- T4 free, T4 Total, T3 Free and total, etc. Once they tested that, and looked at the cyst, it was obvious that I needed medication. .Even with the blood work, it isn't an exact science, you also have to go by how the body reacts. If the fingers are colder than the palms ofthe hands, that's an indicator that it's low. Low body temperature is another. Of course there's constipation, hair los and others, but hthe first two are really easy indicators.

The other problem for us as we're tryingto sort out our symptoms is that the low and high are oftem the same. Everyone is super afraid of high thyroid symptoms, but honestly, I feel the risk of that is so minimal compared to the risk of it being too low. In addition, I've experimented with the meds, and honestly, There was only one time I'ever felt any high thyroid symptoms and it wasn't like they say. High thyroid symptoms are unlike low, and I don't remember what it was like, but it was very obvious that I needed to lower the dose. I just felt like it was finally working, and felt I could lower it. Only that was in 2012. I don't remember what the symptoms were... So the whole high thyroid thing I think is pretty lame, and just keeps us from being able to figure out the meds.

The other huge problem with thyroid disease is that the thyroid works sporatically, which means of course your blood levels are somewhere, but you aren't getting the stuff when you need it. So it's a roller coaster. I found it best to use the Natural Dessicated Thryroid and have the blood levels at the top of normal range or slightly above. Of course because of the composition, it's the T3 that will be on the high end of normal, and the T4 will be at top high end of mid-range- or at least how I feel best. Sometimes slightly higher. So it makes sense because the T3 in the natural is a higher T3-T4 ratio than in humans, so for the T4 to be where it should be, the T3 is high. With the synthetic/ levo, It's T4 only, there's no T3,so you get high T4 and lower T3 because you have to hope your body can convert it. Unfortunately for most people who've been suffering for years, like  you and me, by thetime we get the meds, 20 or 30 years late, our bodies are in bad shape, with sluggish everything, stomach and liver problems, migraines, etc. And by then our bodies have a tough time with the T4 conversion to T3.

There is something called thyroid resistance. SImilar to insulin resistance. Some practitioners have tried doing a temporary pulse of a very high dose of Natural Dessicated Thyroid for about two weeeks, The idea is that by flooding the body with the NDT, it forces the body to stop the auto-immune response, and allows it to actually start using the thyroxin again. Doctors don't want to try or recommend this, but I tried it initially to try and see what dose would work. I jest kept upping it to see and after about two weeks, it finally kicked in and I knoew I could drop it way down. I wouldn't recommend tryingthis though unless you're super in touch with your body and are an expert at interpretting your own signs. I stumbled on it accidentally. Later I ran across the mention of this method sevveral times in books. I haven't done it since. I absolutely wouldn't try it with the levo- you have to use the natural stuff.

Good luck!

Catherine

 

Thankyou so much for that dubgirl00.It gives me more hope.

Yeah, it's pretty normal with the natural for the TSH to be zeroed out. Mine is always extremely low on the NDT.I'm not sure why most doctors don't know tha this is normal, and they all seem to really freak out if the TSH is low, but they really shouldn't. I'd check back with the specialist and get his input. Maybe you'l get lucky and get completely switched to the NDT.

  

My cholesterol and triglycerides go through the roof when my meds are too low. The levo made it worse, now that I think aboutthe timing of the most recent increase. Thanks for bringing that one up!

Hi Clare- Thanks for sharing your story, and the points about what can happen without meds. I was also not diagnosed for many years and have severe health problems because of it. I'm on the prescription NDT, so that's much better for me than the Levothyroxin.

Good luck to you in recovering your health!

Catherine

Hi Catherine it's nice to hear from you. I'm trying to get my my Gp to prescribe NDT but I've been told the chances are slim, as in the uk it's not available unless you buy from USA. Do you live in Britain? I have done a mass of research about Hypothyroiditus and its causes symptoms and can't understand why so many of us only get diagnosed when the thyroid has near enough stopped working and we are very ill? Surely it is simple enough for trained medical doctors to look at combined symptoms that persist over long periods to order these much need blood tests not just TSH but also T4 free T4 T3 and Free T3! Once on meds I have found that they then only order TSH!.which will obviously results come back normal as the thyroxine is in the blood stream spiking the blood! I'm still at a loss to how my body is processing and distributing proteins because they do not do T3/ Free T3 & T4/ free T4! I feel that they are happy with people being on these meds as bloods show normal so there job is done.. But fail to recognise the long list of horrid symptoms caused by Levo and other synthetic meds. Why arnt we all taking NDT?? One word cheaper to make synthetic! It would be nice to hear what you think on the subject of NDT and how if any symptoms are effecting you.

Kind thoughts Clare x

Hi Clare- I'm in the US- California. Unfortunately western medicine doesn't diagnose anything until it's acute, or you're on your deathbed. It's unfortunate that a dog can detect cancer before our doctors, for example. I too have had low thyroid my entire life. it finally completely stopped working and after multiple trips to the gyno, I switched doctors and kept switching until I found a good one. In the mean time, I kept myself healthy with liver cleansing (the olive oil, and grapefuit juice liver gallbladder cleanse) and acupuncture with an acupuncturist trained in China or Korea, went gluten-free, and added boron and fresh carrot/celery juice with added mulberry leaf liquid chlorophyl. It took me three years to get meds. My TSH did not spike relative tothe problem, so they have to always test the T3 and T4 as well, There are various  (free and total for T4 and T3) that you can test. If you're interested in the exact tests, I can look them up. There are some companies that sell natural non-pharmaceutical grade organic dessicated thyroid- you can find them on the web- they have both porcine (pig) and bovine (cow). I have not tried these, though they are complete, whereas the pharma stuff has been purified so not all the factors are there. So the natural (non-pharma) are supposed to be better. But if you're on a high dose, it may be difficult to get enough ( you may have to take a large amount) because it isn't as concentrated. If you can get your hands on the pharma NDT, the dosage is the same as the levothyroxin, maybe a little more. I was on 140 of the levo and I'm on 175 of the NDT. I don't think mine has gotten worse, so I think the dosage is supposed to be equal but you need a little more of the NDT. Also a lot of the levo products contain allergens and dyes that are really disasterous for thyroid disease since our immune systems are already down.

Hope that helps!

Catherine

 

Hi Catherine and thank you for all your information. I see you also have had a rough ride with thyroid. Im on 200 mg of Levo at the moment.. it has not been changed in 14 months. Im definitely going to try getting NDT as it contains everything we need so that's my next goal. I have been gluten free for 6 months and the long symptoms I had with stomach and bowel have diminished! so that has helped! I was told after the birth of my first child 23 years ago that I had IBS.knowing what I know now this was my first symptom on a long list of hypo symptoms to show. It's so good to hear that you are feeling better and gives much hope! There is such a mass of things to get your head around isn't there! Sorry to say but Britain is far behind the USA in terms of helping its thyroid patients to get the right care as The medical teams argue on every turn with research and thyroid association. It all balls down to funding! The most informative reads which have helped me have been from America so any advice would be positively welcome! On my next visit to my Gp I will take list of symptoms and ask him if he would like to try living working and bringing up 5 children feeling this way! It takes its toll! But I'm always happy to heed any advice to help myself. Very much appreciate you taking the time to reply to me Catherine and best wishes to you! X

Well, even here, you have to get the right doctor. I had a really great one when I was in Los Angeles, now I'm near San Francisco, with a new doctor and every time I KNOW the dose is too low and needs to be increased, they act like I'm asking for crack or something. The protocol the doctors use does not match my symptoms, so unless I have someone who really knows what they're doing, I'm in trouble.  For this last round, I got fed up emailing the doctor to get ridiculous responses and finally just increased my dose using some old stuff. I know this is super important to keep the dose up when I start having symptoms.

During the time I was initially trying to get meds, I was seeing a counselor/therapist who advised me to "shop" doctors until I fouond one who would give me a very high dose of thyroid meds. She was absolutely correct and although I hat the idea of being dependant on the meds, I know I need a really high dose if I'm ever goiong to recover my health. I'm not sure this even has anything to do with funding, as the NDT is way cheaper than the levo to produce and can save lives and health. It seems nuts that the powers that be haven't figured this out.

Good luck!

Catherine

 

Hi Catherine

Wonder if I can get NDT?

I wonder if this is the drug the Doc's can't prescribe?

I'll post any future developments.

Thanks

Claire

Hello there Clare.  I stopped taking my levothyroxine last year because of side effects and the Doctor agreed for a 3 month period and during this time all aches, pains, sweating cleared and I had energy in abundance!!!  However after this period I had a blood test and my levels had dropped so it was recommended that I take 50mg instead of 100 as I am borderline.  I was fine on this dose but over the last few months the sweating has returned and my bones ache so much that some days I find it difficult even to walk my dogs.  Like yourself I would love someone to be able to say to us all here is a product without those side effects, but until more research is done and more people are aware of this I think we are banging our heads against a brick wall.

Hi Lynda, with nearly all hypo patients experiencing/suffering such terrible symptoms why on earth isn't natural medication being promoted and administered to us! Instead we are put on a drug that is synthetic and inadequate! I feel great when I miss a dose but all we are feeling is the relief of side effects and would be soon Back to the real symptoms of thyroid condition. We are all crying out and being ignored! I would love to start a campaign for men and women who would like the medical profession to take notice! Our quality of life is paramount and at the moment I feel imprisioned with medicated issues and feel like hitting my Gp! I'm glad you have taken the time to post Lynda and hope your health isn't to bad! Best wishes to you x

well said Clare x

Totally agree Clare.Please google 'T3 e-petition'.This is a petition to try and get more research done for T3,and mentions natural desiccated thyroid in it.PETITION ENDS 30 MARCH 2015.PLEASE SIGN.Gill

Hello Lynda- Honestly, it's obvious this stuff doesn't work. Do any of the doctors or drug companies read the thousands of posts from people who all say this stuff doesn't work?

I suspect the reason the levo is so difficult is that it does not (in many cases) treat the low thyroid, even though your blood levels appear normal. How useful is that? They've invented a drug that creates a false positive. So in addition to the problems the levo causes, you still have all the low thyroid symptoms. Pretty soon it's hard to know what's what. You were lucky and smart to be able to advocate for yourself. This drug should not be used for patients who need high doses, because there is some indication that higher doses are linked with lung cancer. I am in the US and I take prescription NDT. I am feeling much better. However, with low thyroid, you get a myriad of symptoms that aren't always recognized as low thyroid by the medical profession.  For most people the thyriod symptom (other than the usual hair loss, dry skin, etc) that shows up as the best indicator is the part of the body that is the weakest for that person.   So for me, I get stomach problems and migraines. And I know when those start happening, that I have to really look closely at what's going on in my body and re-evaluate the meds. Unfortunately, by the time the doctors follow through I've become so sick that it takes months to recover. 

In the US the prescription NDT is used, but not as commonly as the levo, so it's considered a last resort. As I've changeed prescriptions over the years, I've saved my old NDT and use them as a back-up in case I run out or need to increase the dose while waiting for my doctor to respond. The other problem is that in the past, drug companies were  would run out of the NDT periodically and it was unavailable. I'm not sure why, but this happened regularly. So doctors here don't like to use it.

My recommendation is figure out what sort of NDT works for you and stockpile it so you don't run out. My pharmacy recommends a 6 month back-up supply for the NDT.

Good luck to you!

 

Hi Gill, and thanks for the petition info I will sign! Best wishes Clare x

Brilliant!

Hi Mnt. View,

This is LAHs! Are there any doctors in the Palo Alto to San Jose area who go beyond the TSH test? I am on 125 of LevoThx with multiple hypO symptoms. I reached out in desparation to have my dose increased and did the blood test requested. My TSH came back very low - (it has ALWAYS been low when it wasn't zero) and so I was told my dose had to be DECREASED!  I am at my wits end. Who in the Bay Area will take more than this scance interest, do all of the blood tests necessary and who will prescribe NDT? - is NDT still available in the U.S?

Thanks for your continued interest in this problem.

.

 

Hello LAHs! I moved back here after living in Los Angeles for 10 years and have not had much luck. I tried a guy in Berkely who's supposed to be the bomb, but all he wanted me to do is thousands of $$ in tests for other things and a paleo diet. If the paleo diet were the answer, I'd have been cured years ago.

I have Dr. Doaga at Sunnyvale PAMF, but she's a GP and I've had to train her on what tests to do.  She's very good as a GP and knows more than most of the crackpot endos I tried. She wants me to go to a specialist at Stanford, but I'm not real jazzed about breaking in yet another doctor. My condition is also severe and I'm on 150 but it isn't enough. My doc in So Cal had me self-regulating, which helped because I could adjust it before my whole system tanked. Now I have to wait for the doctor's lag time, and by the time they respond to a problem, I've digressed by 6 months in my health progress.

I do have an amazing acupuncturist in Sunnyvale that has hleped me enormously!!!!

Would love to meet and trade info. I'm near Castro street.

Catherine