I stopped taking Synthroid 6 days ago. Sick of insomnia, severe metal taste in my mouth and shortness of breath. Couldn’t take generics. Made me so sick I couldn’t eat anything!
“Going off your thyroid meds could hurt your heart!” Right...and being fully awake for 5 days straight is healthy?
These drug companies and their pushers (doctors) don’t know anymore than we do.
Over it all!
If I die...I die. Drug free.
If you have an underactive thyroid or no thyroid then you need thyroid hormone replacement, simple as that.
If you can't take levothyroxine in any tablet form, then your doctor should be looking at alternatives - liquid Levo is available, NDT and T3. Why not discuss with your doctor
That’s just it! I have discussed all of this with him! He actually yelled at me and told me my insomnia wasn’t because of Synthroid! It’s one of the side effects! It’s in the paperwork! The rusty nail taste in my mouth is untenable! I struggle to breath too! I’m not fat, I’m 61, I eat good and workout everyday. I am out of tricks!
I feel like ET when he was sick!
He actually yelled at me
Perhaps you could find another doctor, one who has a bit more respect for his patients.
So sorry that you re so upset at the moment. I can see that you've replied to an old thread of a similar nature, and you may ve already picked up some good info. I think a little piece of you doesnt really want to give up, otherwise you wouldn't have joined this forum, so I'm going to ramble on, as if you ve asked for help. I hope that s ok.
You ve not told us anything about yourself, and I'm not the most experienced person on here, so what I say will be limited. But others on here have a huge amount of knowledge which hopefully will help, or guide you, or just reassure you.
i 'll start by saying many of us share you re distrust of the pharmaceutical industry and clinicians in general, so you re certainly not alone there.
I believe you ve been taking a brand of levothyroxine, a hormone (not a drug) prescribed for hypothyroidism.
You dont say how long you were ill before diagnosis or how long you ve been taking the levo, but you re on a very low dose. It seems to be low doses can make symptoms worse. Certainly insomnia, shortness of breath and funny taste, as well as burning mouth, can all be symptoms of u nder treated hypothyroidism. (i know cos i suffer with all 3 myself). As well as being possibly undermedicated, it may well be that you re one of the people who cannot get on with fillers in levo, but there are lots of options. As well as T3 and NDT.
As i say there are others on here who know far more than me, but i dont think its necessarily just your heart you would worry about if you remained untreated. I dont want to scare you, but its not just a quick heart problem.
i'm also going to add, as kindly as i can, that a symptom of hypothyroidism is poor decision making - not surprising when you dont sleep is it?
As you re here, why not gain a bit of knowledge from others and give us your most recent blood test results (with ranges), so that you can get practical advice?
in the meantime, sending a hug (((())))
Thank you so much for your kindness. I am very upset. Beyond upset. I feel like I have been poisoned!
I too felt poisoned from Levothyroxine. I’ve been taking Cytomel (T3) for the past 17 years and felt great. My doc insisted for 5 years that it was dangerous not having T4. Even though I told her I don’t do well on it, I finally gave in. I took Levothyroxine (generic of Synthroid) supposed to have least amount of additives. It’s called Tirosint. Anyway, I immediately got arthritis in my finger and a toe, hip pain so bad I couldn’t walk more than 50 feet, lack of emotion and felt detached, the list of symptoms goes on. I told her I felt like I was taking poison. After a year, she agreed to put me back on T3 only. Everything’s better except tightness in hips. I believe people can be “allergic” to T4.
OMG! Me too! My toe, my knee! I feel poisoned too! Exactly! The papers say it hasn’t even been tested to see if it causes cancer!!! I’m off! Thank you!!!
Take care of yourself. Some of us on here have felt the same and done what you are doing. You feel great when you come off them. It lasted 3 months for me. By the 4th month my face was puffy, my joints ached, I couldn't sleep or if I dozed I woke up in a hot sweat. I was short of breath and I couldn't think straight. Anxiety was my best friend.
Please do think about going back on hormones t4 or t3 if you get any symptoms.
Thank you. I called my doctor on Thursday. Haven’t heard anything from him. He’s mean. Yelled at me when I told him I couldn’t sleep! 😢
Not sleeping for me is a sign of not enough thyroid hormones. I used to wake up at 2 am dripping in sweat and then I would just lie listening to music. I sleep much better now that I take liothyronine.
It is a long, frustrating journey back to bring our old selves. Take care.
Can you find a local functional medicine practitioner, &/or swap to NDT (natural dessicated thyroid) or T3 that you can source yourself. I self-medicate after doing some of my own research & getting excellent advice from this forum regarding medication & the necessary micronutrients which are essential cofactors for good hormone conversion & all our bodily wellbeing. It could be the brand of T4 your nasty dosctor has prescribed does not agree with you, or that you're missing something to help it work effectively.
well your dr needs to given the old heave ho. Sounds like a right @**$$
Similar post this morning
healthunlocked.com/thyroidu....
Many of us have been at this point
Why not add your results see if we can help
Thank you for your kindness. I will have to get them.
Levothyroxine isn't a drug, it's a hormone replacement. If you need it, you need it. It's not optional.
When it's not working for you in the way it should, stopping taking thyroid hormone can seem like something worth contemplating if there was any chance at all that you could survive without it. Many of us have been in the same place you're in now.
"If I die...I die. Drug free. " It's very important to understand that it doesn't work that simply. Over time, lack of thyroid hormone will mean that you'll more than likely suffer ever increasing symptoms, for a long time, with the most horrendous physical and mental symptoms. It will be a long drawn out deterioration, slowing down of every bit of your brain and body, before eventually going into myxoedema coma. Warning: The following link contains scary photo casereports.bmj.com/content...
Please investigate all other thyroid hormone options. Synthroid is not the be all and end all of thyroid hormone replacement.
You'll get all the advice and support you need on this forum to help you in your struggle to find what works best for you.
Thank you so much. I’m very confused and very upset. I feel like I’ve been poisoned!
I called my doctor last Thursday. Nothing from him. He scares me. Impatient. 😢
I had Grave's Disease, treated with radioactive iodine in 1986. I spent a year on Synthroid and was barely functional. I was exhausted, hyped up, unable to think clearly, depressed and felt totally unlike myself. Finally my general practitioner suggested NDT, a choice several of his other thyroid patients had made. While it took a bit of time to get adjusted, I felt infinitely better on NDT than on the Synthroid. I ultimately landed on a very small dose of Synthroid to keep my T4 up, combined with the NDT to have readily accessible T3. It turns out I was unable to convert the T4 in the all-T4 Synthroid into the absolutely necessary T3 that was part of NDT. Everyone is different and I have no medical training, but I would at least ask your doctor about the possibility of trying NDT. It gave me back my quality of life. I wish you the best.
May I ask you please through private messaging where you get your NDT ? Is it through the NHS or do u privately pay for it ? Thank you x
Toto88
You can send Donna a private message by clicking on her name and then the MESSAGE tab.
I talked to my doctor about that and he gave me a lot of bla bla bla about how it’s not good, doesn’t work, isn’t exact enough, can’t regulate. More bla bla. Again, too much, too little, wrong kind. My doctor even told me I might not have even needed to be put on this stuff!!! I’m beside myself with confusion!!
Sounds like the Dr is out of his depth. if you post blood tests on here, someone will advise. inc historical bloods.
I will have to get them. This all started because it felt like something was in my throat! My voice was hoarse and I was very tired. Granted I ran 3 Annie Sloan Chalk Paint stores here in Pittsburgh. The ultra sound showed a microscopic nodule.
I was put on the generic meds and told that I would feel great in 6 weeks!
Ha! I couldn’t eat ANYTHING! So, he put me on the brand name Synthroid.
The taste in my mouth started immediately! Oh, it will go away!
I feel like they poisoned me!
I am no better! I am worse off today!
You should easily be able to access Liothyronine T3 in America. I am having extreme difficulty getting it in the UK and cannot get a GP to prescribe it after 20+ years of being well on it. This is a recent and corrupt UK policy that is for financial reasons only. In accordance with this callous decision, I was put on thyroxine recentlyan The adverse reaction was immediate and catastrophic, including severe chest pain, so I've had no choice other than to stop taking it. My GP accused me of having dementia and the only referral he will make is for memory tests. I can therefore identify with your plight and I know I am in big trouble when the T3 I have left runs out in a few days. I don't want to die but I'm trying to resign myself to the inevitable. I know that without any thyroid medication it will be a horrible drawn out deterioration involving progressive loss of all physical, cognitive and mental suffering. I am 65 years old and am grieving already. Not just for the inevitable loss of myself, but for the beautiful smiles and joyful laughter of my beloved little grandchildren and the fear and sadness for my husband and sons who will have to witness this terrible and unnecessary spectacle. I am convinced this is a form of euthanasia to save money by culling the population. I have no State Pension for another year so no money to pay for a private Endocrinologist and private prescription. I am a Christian and have run out of all options except prayer. I pray that you and all thyroid sufferers will be able to get the right medication to make you well and keep you well. If NDT is not available or helpful, try looking in Mexico for Grossman Liothyronine. Beg or borrow the money but strive not to go without thyroid med. X
Thank you. I will.
I can understand why you have done this, pills seem to be handed out without Doctors getting to the root cause of the problem. Many posts I have read and things I read talk about how things start to go wrong in the body which then results in problems like we are having. I think you should see your Doctor, explain how you feel and do some very serious research about the body. I am researching the liver at the moment as this very overlooked organ can have such a massive effect on the whole body. Also read on a pinning site about a Traditional Chinese Doctor methods, very interesting. You might get to a point where you can reduce or changed the meds or maybe something in that one isn’t working with you, there are other options.
Thank you for your reply. The taste in my mouth and the insomnia is untenable! The doctors’ glib answers that “those are not side effects of thyroid meds are maddening!
I am just over it all!
like i say, it could be increased symptoms of hypo, but, whatever it is, its no good a Dr being glib about it, they dont have to put up with it.
I have just chewed my way through this, I have several issues which this book addresses I would give it a serious read, I am going to try this and see how my bloods look after a few months of it.
The Plant Paradox: The Hidden Dangers
Yes, me too...chewed through it... let’s keep talking! The healthy food was inspiring! Are you going to do all the supplements?
I’m going to see how I initially get on with the 3 day and then the 6 weeks, I gonna get bloods taken before I start, after 6 weeks, I I’ll think about stopped my 100 Levi and wait another 6 weeks and then get more bloods done, see if any improvement. I’m going the supplements as nothing low has ever come in up bloods, oddly enough I mentioned leaky gut to my docs they looked at me like I was talking alien. I’m also trying this to fix lichen Sclerosus which I waiting to see someone about although after reading about the steroids in that book they try to give you I have more hope with the book haha I just want to not feel exhausted, ache and be normal. Don’t think I’m asking much but like you really. Shall we try it together my start date will be 3rd Feb.
I know!! I was excited about the book too! I’m desperate! They scared me to death about quitting Synthroid! So confused!
I’m not a doctor so have no medical advice, all I can you is, I’m not satisfied with sticking a band aid on my I’ll ess, I need and want to know why and how to make myself better. After my second bloods are taken if they say to me this is wrong that’s wrong have you changed something then I will confess. However I greatly suspect they will say your levels are great carry on, however I will of been free for over 6 weeks of Levo. I will find you in a few months and let you know, remember we are all different what works for one doesn’t work for another, go with your gut excuse the pun you know your body, get more feedback from others on here, I’m doing this regardless I need to see if i can fix this myself, if I can’t so be it, drugs for the rest of my life. You take care
Would you like my email address?
I threw away everything in my fridge that has canola oil! It’s in everything! Gave my eggs away too! Ate lots of butter lettuce, berries and avocado.
canola oil? Try looking at soya! i dont think I'll ever get over the fact its in a lot of chocolate!
'oh i'm sorry, i only eat very, very posh chocolate these days'
I feel the same as you. I can’t take levo in any form and my GP doesn’t really care about its patients, I have no options to change doctors as I’m already house bound for 15 years due to chronic pain condition from botched surgery, every time I ring my doctors and they say they will ring back they don’t. I was only diagnosed in September after demanding blood tests for three years, then it came back as UAT. I even rung them on Thursday telling them that since I’ve been ignored since last year I need something etc. Yet again they said they would ring back and they didn’t. So will do without as I cannot take the stress and sick of getting no where. So what will be, will be. Had enough of the pain condition anyways and my doctors treating me like it’s all in my head.
I have no constructive advice to offer I'm afraid, but reading your post made me so sad for you and what you are going and have gone through. No-one seems accountable in the treatment (or neglect!) of thyroid patients. I just wanted to say that you really aren't alone and that forums like this always provide a listening and sympathetic ear.
Thank you. I have struggled with my health since I was a kid. Couldn’t wake up in the morning. “Lazy” they called me. Couldn’t concentrate. “Day dreamer” my report card read. Hair loss at 13. “Baldy” my classmates teased. No appetite. Too skinny. “Italian girls should eat!” Debilitating painful cramps once a month. “Oh, shake it off! You’re a woman now!” The list goes on and on.
Now this. Rust nails in my mouth!! No sleep! I’m over all of this!
Thinking of you and wanting to support you. I have sent you a private message.
Thank you.
I’m currently v unwell myself & am trying anything & everything to get to the source of my chronic pain I experience every day ! I am like you at the point of giving up because no one knows what’s causing my symptoms! As others have mentioned on here - u have like myself come onto the forum for help & so u haven’t as yet totally given up ! I am seeing a private endocrinologist at the end of Feb hopefully who maybe able to prescribe me an alternative to Levo - perhaps add T3 or offer NDT !! One of the other things, if you don’t mind me asking is are you going through the menopause at all ? Just it can apparently have a knock on effect with thyroid conditions ! I was going to start my oestrogen patches & progesterone but am waiting on seeing the endocrinologist first & see what he recommends. If you are uk based then let me know if indeed you would like to private message me & I can let you know who I will be seeing ok. I’m on a v low dose of levo but still my gp says I’m within normal range !!! You are not alone !! Menopause can cause an array of symptoms from insomnia, to joint pain, burning mouth syndrome, depression & because both give off similar symptoms it’s v v difficult to find out what is causing the symptoms. I stopped my levo for 5 days & I v quickly became even worse than what I am now - I do know exactly where you are xxxx
What are we to do?
So are you indeed going through the menopause at all ?
That’s all over! I’m 61.
Are you wanting to know the private endocrinologist I will be seeing - he prescribes T3 ! Maybe even NDT - just I spoke with a lovely lady on here who was debilitated like myself - bed bound - chronic head pain - joint pain etc & it turned out that indeed she could not convert T3 ! This guy is my last hope & im praying he can help me also x Do let me know & I will private message you ok xx
I’m in the States. Crazy health care system. Insurance money driven. It’s a real “shit show!” Thank you for sharing how you are handling this horror!
Hi. Are you in the UK? I need to find an Endo who will prescribe T3 that is vital to me but has been stopped following the NICE decision to put everyone on Thyroxine because it's cheaper. I cannot take thyroxine and will soon be left with nothing. Do you know of a sympathetic Endo please?
No, I’m in the states. My doctor YELLED at me today! He took me off of Synthroid. Blood work today, 3 weeks and then 6 weeks from now. I found a product online called Thyrosyim. It has T4 and T3. Also, GTA-Forte II. Zinc, B12, Detoxadine (Nascent Iodine), and Cortisol Health. All on Amazon. Eating 2 Brazil Nuts a day, butter lettuce and apples. No canola oil, peanuts and going gluten free.
Did you mean Thyrostim?
Depending on where you look, the precise ingredient list varies, but there is nothing which indicates that it is likely to contain ANY T4 or T3.
Ingredients:
Supplement Facts for Two Tablets
Vitamin A (as palmitate) 2500 IU
Iodine (from kelp) 150mcg
Magnesium (as magnesium aspartate, gluconate, glycinerate) 100mg
Selenium (from vegetable culture) 50mcg
Copper (as copper gluconate) 100mg
Rubidium (from vegetable culture) 25mcg
Lamb Pituitary/Hypothalamus complex concentrate (from ovine) 40mg
Lactobacillus acidophilus (DDS-1) 2 million
Tyrosine (as L-Tyrosine) 100mg
Tyrosinase (from mushroom) 10 units
Superoxide Dismutase (from vegetable culture) 20mcg
Catalase (from vegetable culture) 20mcg
naturaldispensary.co.uk/pro...
Vitamin A (as retinyl palmitate), Iodine (from kelp), Magnesium (as magnesium aspartate, gluconate and glycinate), Selenium (from vegetable culture†), Copper (as copper gluconate), Manganese (as manganese gluconate), Rubidium (from vegetable culture†), Lamb Pituitary/Hypothalamus Complex Concentrate (from ovine), Lactobacillus acidophilus (DDS-1), Tyrosine (as L-Tyrosine), Tyrosinase (from mushroom), Superoxide Dismutase (from vegetable culture†), Catalase (from vegetable culture†).
amazon.com/Research-Thyrost...
I wouldn't want you to think you are getting T4 and T3 when you are not.
Taking iodine, in any form, is questionable. It is very much recommended to be tested for iodine before starting to take any.
Please refer to the post below on Thyroid Resistance and some of the responses I gave. In particular you likely need potassium to get thyroid hormone into your cells. I was also intolerant and could not convert T4 to T 3 well. Since doing the mineral program ( I discuss in that post) and switching to NDT, I now have few side effects to thyroid hormone and less hypothyroid symptoms.
healthunlocked.com/thyroidu...
How did you come across the cocktail you speak of plz ? Just I don’t think I’m converting T3 to T4 - but have yet to try actual T3 & hopefully this is something the private endocrinologist will be giving me !!
Through my Nutritional Therapy Practitioner. You can also search the internet for adrenal cocktail. One good site is Stop The Thyroid Madness (link below)
I feel you, all they do is say you are crazy it’s a dam shame
Did you try Natur_throid or Westhroid?
No, I haven’t. My doctor is Captain Synthroid!
They are the best. It will also help you sleep.
No. I have not.
I think you meant to reply to Dgoebel
But you don't know if your response is due to an ingredient specific to Synthroid, or if you are in fact intolerant of levothyroxine. You also need to keep in mind that levo intolerance can come in full or partial versions. I use the Levoxyl 50mcg tablets (dye free), but just one per day, because I am intolerant of levo as Levoxyl, when my dose reaches 75mcg per day. If you really are hypothyroid, and can't tolerate levo at all, then you MUST look into a T3-only program. Most ignorant docs think taking T3 will kill you, but done properly, T3 is a superb, smooth medication that keeps you out of Hypothyroid Hell.
This is all so confusing!!
It's confusing because allopathic docs are horrible at explaining how the thyroid system works to their patients! T4 (levothyroxine) has to be converted within the body to T3 (liothyronine). That conversion requires enzymes, which are dependent on nutritional sufficiency and other factors. T3 is the active thyroid hormone that does good things for you; T4 is merely the storage form, or "T3 waiting to happen". The average allopathic doctor mistakenly assumes that every body can do the T4->T3 conversion in the proper amount, but that ain't necessarily so. The average allopathic doctor is also not aware that some patients are intolerant of levo and/or other pill ingredients, nor do they know the reason(s) for that. A lot of the docs who are actually experts, who are able to do T3+T4 or T3-only therapy, are in cash practices that don't accept insurance. A major complicating factor in all this is that a majority of cases of hypothyroidism are caused by Hashimoto's, an autoimmune disorder which slowly destroys the thyroid gland. There are many patients who present hypothyroid symptoms to a doctor, who are not promptly given TPO and TG antibody tests to determine if Hashi's is part of their problem.
Wow! Thanks for the info!
another issue to check----the manufacturer of the drugs. i am only able to take the sandoz brand of levo. all the other manufacturers add different fillers that don't agree with some people. sandoz is one of the most pure makers of the drug. i suffered for years until i accidentally stumbled on to this maker. have to special order it---but it gives me my life back.
You make an important point.
It isn't a case of Synthroid OR "the generics". Each of them is its own formulation (excepting repackaging arrangements). Others have said that Unithroid, Sandoz or whatever works for them but they cannot tolerate Synthroid.
If only there were some way of predicting which one will work...
Lot and lots of leading thyroid specialists are based in the States
Here’s a few ...all talking about gluten.....but they have comprehensive websites
Come back with new post once you get results from your Doctor
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
Sounds like your dosage may be too high. What dose are you on?
I’m right there with you girl. I can never sleep. TSH is 6. Low frees and I also have the SOB and weird taste in my
Mouth
Why take a statin drug?
Reaction to various drugs
Could Hashimoto's be drug Induced?
Vitamin D - a designer drug?
