Thyroid medication almost kills me makes me 75 times worse no one will help doctors don't believe me.

Hello and thank you. My name is Jamie I have no thyroid due to cancer and all thyroid medication poisons me to the point where I Collapse and have stroke-like symptoms pass out on the floor, extremely dizzy, memory seizure activity body hives and itching, paralyzes my whole body, loss of vision in and out, drops my blood pressure severely low, confusion massive brain fog and migraines to the point I drool, levothyroxine medications are the worst cannot have synthetic medications there are so many medications I'm allergic to and Foods. I have tried natural thyroid replacements like armor and was on tirosint for a year it made me so bad I would collapse on the doctors floor and all these doctors say is I need a psychiatrist they don't know what to do with me I've been like this since 2009 my kids watch me struggle and witness all this. My number for my TSH level it's in the hundreds I have been off a thyroid replacement now for two and a half months and feel 75% better but now feeling the body shut down from no meds. Doctors say it's all in my head that I can not be allergic to meds that my bodily naturally makes. I live in USA in the state of Maine I'm begging for help I have a counselor and she says I need to be the squeaky wheel and she agrees that I do not need a psychiatrist. It is very scary to have this reaction to a med that is supposed to keep me alive I feel as if I'm going to die no matter what but feel so much better off a thyroid replacement.


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75 Replies

  • Can you list for us all the brands and hormone types you've tried, whether they are T4, T3, or NDT?

  • Levothyroxine, cytomel, WP thyroid, nature throid, tirosint, armor and there was three or four more maybe I need to get my Pharmacy print out. Out of all of them tirosint was just a little bit noticeably better than all the rest but still felt like someone was giving me arsenic. The chest pains get so unreal I turn white and gray and disoriented so bad I can't even sit up straight in the chair let alone stand and function. I'm in the process of waiting for medical records to be sent to me so I can view all my labs since 2009 even with my numbers being normal for years I have dealt with this so severely I've lost a lot out on life. I'm 34 years old and my babies are growing up and need their mom. All my doctor says is I could have dysautonomia but doesn't understand why the thyroid Med would make that worse.

  • Yes when you say calcium channel inhibitor and also mention a dependence like sympathetic nerve what are you talking about the calcium channel inhibitor or the depression medicines ? What I'm trying to find out is if you think calcium channel inhibitors created dependence as a side effect ? I was recently put on the calcium channel inhibitors for my high blood pressure even though I take it T3 T4 combination medicine (NatureThryoid) . I ask you about the calcium channel inhibitor from my Doctor Who is not a functional doctor and they said of course no no problem but I know calcium in the thyroid can have a troubling interactions.

  • Take it easy. Sorry for misunderstanding.

    I did not pin point that calcium channel inhibitor cause dependence. I did not say all the side effects of the medicine.

    I also suffered serious side effects from calcium inhibitor (almost passed out). My friend's also have heart pounding for blood pressure medicine. Another friend's mother also changed blood pressure medicine many times in 10 years as they do not work later while they worked for a while at first.

    I also take lorazepam and doctors say it can be addictive. I read that sedatives and beta blocker stimulate sympathetic nerves and it is not for nervous system. I also took calcium channel inhibitor and it reduced my leg pain but caused serious side effects(choking, asthma, headache, dizzy..). I know there are many calcium channel inhibitors so I will try others for less or no side effects.

    And even though all my doctors said levothyroxine is safe and cause no side effects and my symptoms have nothing to do with levo, it actually caused a lot of problems and affected my heart.

    People react to medicine differently. And doctors don't know much about side effects of medicine or ignore it. Nevertheless we should take medicine for medical issue to extend our lives. I became not to believe doctors after I suffered from serious side effects of medicine. (I passed out due to low sodium in blood for cymbalta and was hospitalized at ICU for 4 days after taking it for 7 months. Low sodium in blood is one of the side effects of Cymbalta but my doctor my doctors did not mention anything ans when I asked him to change medicine he denied it and said I will be cured if I stay with Cymbalta. Another prescription of prozac by another doctor made me almost killed (I was almost dead due to side effect with no good effect)

    Anyways no one can say that this medicine safe. Medicine also contains many unhealthy fillers. I want to believe calcium channel inhibitor is not addictive but I guess no one knows.

  • this is all me. its been about 2 1/2 months off thyroid replacement but no endo will put me in the hospital to watch me on meds and no one will prescribe me any aswell. thank you for talking to me about it im suffering so bad and have so much water on the body and very ill no mater what i do.

  • Some people do better on T3 only. Have a look at T3 pauls work. He has written a book about T3. T4 made him also very ill.

    You might have tried T3 only and this also made you unwell, so not sure what else to recommend.

    Very unlikely to be a mental issue.

  • Thank you♡ I can't even eat meat at this point or animal products because I get sick and disoriented with stroke-like symptoms but I've also had the gastric bypass and ever since then I've lost a lot of digestive functions

  • You need to replace tons of vitamins and digestive enzymes if you have had gastric bybass.

    You should get them all tested unless you are already on b12 injections which is a must if you had gastric bybass.

    I bet you would tolerate thyroid meds if you had everything else sorted out!

  • Yes I have the gastric bypass and the nutritionist through my gastric bypass doctor told me I have leaky gut syndrome. Right after i went to my gastric bypass doctor and told her that the nutritionist said that i have leaky gut syndrome she said she's never heard of it who would tell me such a thing. I said your nutritionist Nextdoor that you run through! She quickly left the room and that was it.

  • Has your cortisol ever been tested? Do you know if your blood glucose runs high or low?

  • My sugars go high when I eat and then they drop down to the forties but that is due to the gastric bypass called dumping syndrome they want me to eat several small meals a day but everytime I eat I get stroke-like symptoms and disoriented. I'm just got back a couple weeks ago from that little test they stick in your arm for a week to monitor your blood sugars and they said I constantly run low. But I feel better if I do not eat as well but when my body want sugar it drops it down to 40 again

  • Cortisol helps keep your blood sugar up. Someone with severely low cortisol will not be able to tolerate any thyroid medication. It could send them into a hypoglycemic seizure. Many of your symptoms point to low cortisol, so I would definitely have your cortisol tested by blood and saliva.

    The absolutely last thing you'd want to do, if this is the case, is take T3-only.

  • The doctor going to after me the other day and said Jamie you need to try at least A5 MCG pill of cytomel and I did and wanted to asleep like coma after hallucinating for two days. The hospitals are so sick of me coming in they refuse me in the er and tell me to go see a psychiatrist.

  • How naughty of them....

  • They have no personal experience of having a dysfunction of the thyroid gland. They also believe that levothyroxine is the 'king' of thyroid hormones and it isn't for many.

  • Sorry yes I've had my cortisol tested they did that half an hour blood test thing they refused to do this saliva 3 times a day swab test

  • Sounds like you are going low on potassium, have they checked that? Read up on hypokalemic paralysis.

  • They checked iron B12 they checked everything potassium they checked my metal levels they did say I was low on zinc and I needed to take vitamin D and I take both of those I really appreciate all of you helping me out really means a lot

  • Potassium is an electrolyte and your body will do everything it can to keep serum potassium within range so a radom blood test will not likely show low potassium. But if you have a massive shift of potassium from your blood stream AND you are systemically low on potassium you could dip well below range causing the fainting, low blood pressure, paralysis and chest pains. Your blood would need to be tested DURING one of these episodes.

    I was low on potassium and magnesium and I showed low only during one of my attacks. I would get extreme chest pain, trigeminy PVCs, extreme dizziness, etc. It was horrible. But I didn't get the paralysis. I was taking acid blockers which made me go low on these minerals.

  • Actually just got done eating right now and I'm having stroke-like symptoms and chest pains and stuttering my face is droopy to the left I'm going to be headed to the ER soon. I know I've been craving bananas like crazy and drinking Gatorade to help I just got to be careful my sugars

  • Good luck in trying to get to the bottom of this.

  • Also I forgot about this but if you have alot of adrenaline in your body which you probably do from chronic low blood sugar/ dumping syndrome, that will push potassium into your cells from your blood stream and cause hypokalemia states. So I bet this is why you feel so bad aftet eating. Your system is trying to get your glucose up after you go low and it uses adrenalin to do that. Your potassium then goes low because you don't have enough potassium stores in your body.

  • Wow for the past 3 days I have been doing nothing but just giving huge adrenaline rushes with anger because I feel like I'm going to pass out.

  • When I was on my thyroid pill for years it kept getting worse and when I would eat I would automatically fall asleep and could not wait I could hear what was going on but I couldn't respond it would last minutes to hours and this past winter there was a time I was in bed for two days in a coma and could not respond and get out of bed but I could hear everything around me I felt like I was thrown in ice water with needles and knives this happens all the time still but not as bad being off the thyroid med. All thyroid medication make my symptoms so much worse I swear it's going to kill me. I'm in the ER right now I'm hoping they're going to do some testing I'm really going to try to push it instead of them sending me home again

  • I can't tell you how sorry I feel for you. You are going through hell! I do hope you find your answers somewhere, and in the hope of something triggering the right direction for you I am going to mention something called 'petit mall' - I am not medical in any way but just with you saying about you being aware of what is going on around you but not being able to respond? I think Petit mall is something like that and I think there is another condition with similar symptoms...can't think of what....

    In my teenage years and during labour I would be like that - people thought I'd fallen asleep or blacked out - but was totally aware just couldn't lift head or limbs up to respond - no energy.

    I wish you all the luck in the world, I wish you well.

  • Eat whatever you are craving, it's your body telling you that you are depleted in something. If it's bananas you are low on potassium, like Kalicocat above explained.

  • Also I agree with HIFL it could also be related to low cortisol, constant hypoglycemia from dumping syndrome could really disrupt adrenal function. In addition, gastric bypass causes long term nutritional deficiencies. Have you been through all vitamin and mineral blood tests to see if you are low in something? Are you taking your supplements?

  • Thank you very much I appreciate it. I have tried all The Replacements but they make me sick but I do go for iron infusions which make me feel so much better and also take away my body pain. I also get tingling in my hands and through my body like everything has fallen asleep and my legs are frozen at night time and tingly would know circulation I have to be wrapped in a heating blanket and I am Frozen at 75 degrees all time I did forget to say that I am on a blood pressure upper due to very low blood pressure which is called midodrine hcl.

  • Did all this start after the gastric bypass? If so, is it possible to reverse the gastric bypass?

  • I talked to the gastric bypass doctor who told me that only if I got really sick that I could reverse the bypass then when I went to her office and told her what is going on is when she told me she could not reverse it and never heard of leaky gut syndrome which her nutritionist told me I have and then quickly left the room and I did not see her again no one will see me

  • You may have to find a different surgeon who can perform the bypass reversal. I really believe most of your symptoms are due to nutritional deficiencies. You need to get a printout of all of your tests to be sure, even if you are at the very bottom of the range or even below the doctor will tell you you are fine. And to get all of your hormones tested looking for additonal issues with pituitary, adrenals etc.

  • Totally agree with you, Kalicocat. Nutritional deficiencies can do terrible things to you.

  • Definitely find an medical/alternative doctor to treat your adrenals. Poor circulation, cold intolerance and very low pressure are low cortisol symptoms and hence why midodrine helps as it acts to tighten the blood vessels as does cortisol. No thyroid hormone will work without adequate adrenal function. All the best.

  • You really need to take all of your supplements that your gastrointestinal surgeon recommended and make sure are getting enough potassium and magnesium. Low potassium can cause a heart attack.

  • My (hypothyroid) mum had some similar symptoms to you since her late 30s. Turned out she has a severe soy allergy that even extends to produce from animals fed on soy and certain types of plastics so food wrapped in those are also a no go. She also reacts badly to caffeine . Shes 74 and ok if she avoids these but also last year was diagnosed with type 1 diabetes (LADA) and since on insulin is feeling even more well. In fact she says its best shes felt in 30 odd yrs. Her allergies were diff to pinpoint hence taking so long to work out. She did go to a kineasiologist who helped pinpoint them a bit.

    I hope you find some answers for you

  • Wow,someone like me! I used levothyroxine for years and years,but last year my body said no more. I have been off it since August last year,like you felt I needed something,so my doc has put me on t3 for 6 weeks and then have a blood test. I was told the same thing re drugs,imagination! No chance. I was told the same for 18months regarding my daughter,my imagination! She has myesthenia gravis. Some doctors do not listen. Change your doctor is my advise. Hope this helps

  • It's where to start! Vitamins and minerals affect such a lot and for all those doctors who try to tell you it's not the meds, well it could be the fillers. But having said that the one recommended for that you felt slightly better on as yes could be the fillers on other brands but something else is obviously a problem. Could you post your latest results? Not sure that if that will help but it may trigger a positive response.

  • So sorry for you and so difficult to solve while you feel so rotten but you need an expert doctor and nutritional expert too, it should not be so difficult to get the expert help you need, its really amazing how poor the healthcare is. As well as the things discussed it sounds like you have very low B12 which causes a lot of your symptoms and can occur after gastric surgery, look up Pernicious anemia or Subacute combined degeneration of the spinal cord which my brother has.

    Would it be possible to see an integrative health practitioner. Dr Mercola is brilliant, you can search his sites easily for info. Perhaps you could also contact him. I am in the U.K. So don't know how your system works there.

    I hope you can get help from someone.

  • You sound as if you are very sensitive the very same thing happends to me I collapsed recently and spent the evening in A and E after whacking my head but still the tests come back normal , cortisol the stress hormone causes havoc and if you are sensitive to any changes in the body then every thing gets out of rhythm,creating havock through out your body if you can get your stress hormones tested ,I take anti depressants (not because i am depressed )but the extreme swings in my can use up all my "happy" hormones creating a depressed body.

    I don't know if it would help you but I also have acupuncture to calm the body and mind keeping cortisol the stress hormone in check (drs can do this with pills if you prefer)

    All this going on in your body and gut can cause poor absorption of essential vitamins and minerals making you feel even worse (i am low vitb12)which has some very. unpleasant symptoms,

    It sounds as if several things are going on in your body at the same time you have to try note dates times symptoms research as much as you can.Trial one thing and if that doesn't work then try something else.

    And No you do not have mental health problems you are probably more sane than the drs trying to treat you.

    Big hug xxx

  • im really wondering about this

  • Hi Jamie,

    I am right on your side so much so that I sought help from a Pharmacist who deals in Thyroid. Yippee!

    I also collapse with certain chemicals in even over the counter pills.

    I also am without any supply of Thyroid due to cancer treatment decimating my Thyroid Gland. I, like you, have a very sensitive body to chemicals! I checked out my Wockhardt pills 25 x 4 daily - 100mcg.

    As soon as the dosage to 100 mcg was increased my body reacted.

    Fluid bubbles, itching , hives. I did not return to my Dr as I believe that they do not seem to treat the source but seem happy to over ride the medical issue with another pill. I decreased​ my Thyroid pills to 75mcg daily,

    Brilliant in 4 days all bubbles, hives & itching disappeared.

    As a result, I began to research the amount of fillers in these pills.

    I phoned the company, each 25mcg pill contains 0.72mcg of Sodium I believe. Consequently, it is this huge amount of Sodium, that my body is rejecting. I am now back up to 100mcg (body needs 100mcg of Thyroxin) and I have had to break 'the rules' and step out each pill and take it with food so I don't get pains in my lower intestines due to the Sodium. It is working!

    Of course, I believe the best answer would be to have a Pig Thyroid Transplant. I used to do Animal Husbandry with this livestock.

    Keep your pecker up. I really cannot believe that you need a Psychiatrist but only a great Pharmacist.

    Best Wishes.

  • Wow, what an interesting concept a Pig Thyroid transplant! My 85 yr old friend had a pig heart valve transplant about 25 years ago and she is doing fine. Charlie Rose also has a pig valve and he is just fine. Many of us take pig thyroxine (NDT) so why not use the gland directly.

    I have to add that I feel very sorry for the pigs and before I went on NDT I was trying my best to be a vegetarian - oh well, we do what we can while we can.

  • Hi,

    Years ago I worked in Animal Husbandry at a University, mainly with sheep but I met the professor's working with pigs and learned a lot. The pigs body is closest to the human body re temperature, skin etc.

    Fascinating...So why not a transplant???

  • Daylin,

    That is anything but a huge amount of sodium! It is absolutely tiny and, I suggest, totally immaterial.

    On average, adults in the UK eat about 8.1g of salt (3.2g sodium) a day. This may not sound like much, but to reduce the risk of high blood pressure, it is recommended that adults should not be eating more than 6g of salt (2.4g sodium) a day.

    That amount (3.2 grams) is more than three million times as much as you say is in a tablet.

  • Thanks Helvella.

    I'm still trying to work out my body s reaction to this Levothyroxin. I still believe my body does not like it and I do discuss information with two Pharmacists​.

  • All my vitamins in minerals and everything looked great except for my Zink and vitamin D. All the others are normal. I do have degenerative disc disease and I go to a chiropractor in the base of my neck and skull there are a lot of swelling in my brain stem. There are so many health issues on. For the thyroid Replacements I have been on synthetic and a lot of the natural so-called Pig hormone ones but I cannot tolerate more than 50 MCG is of any of them they got all the way up to 135mcgs and I hallucinated got so severely ill and almost died. Just got back from Maine Medical Center in Portland Maine they sent me home telling me I have a headache when I went in for stroke-like symptoms and TSH level will past hundreds

  • Youve mentioned several vitamins coming up 'normal', but it's very important to look at the actual figured yourself. Doctors know nothing about nutrition and vitamins, and its possible to be very ill well within their ranges. I suggest you collect as many of these test results as you can and put them in a new post, and members will comment. The classic set for thyroid is: vitamin D, vitamin B12, ferritin, folate. You've had several others mentioned in this thread.

  • Sorry, got cut off.

    I agree with others to get cortisol tested. You must do the 24hr saliva test. This is not available on the NHS, you can mail order it through the ThyroidUK website. Even if cortisol is not your main problem, it will probably show some issues.

  • I agree ALWAYS get copies of your blood test...normal does not mean normal if you are a thyroid patient....high normal or upper one third range is a must for b12, higher normal iron, d3 at least 60, etc......and most dr just write that off....I have had drs tell me to lower my b12 for example bec I was high normal and that was a huge mistake...talking to ther hypo people I found this out....amazing how that makes a difference

  • HI, firstly you must take something otherwise you will be vrery ill. So you are not alone. It sounds like your adrenals glands are not working and making you body reject the thyroxine. May I usggest you find a good dr to test your adrenals. In the mean time try taking 12.5 micrograms of yiour thyroxine in the morning when you get up on an empty tummy. if you are ok then take another 12.5 just before you go to bed. Work on that until you feel well then increase but only very slowly. Good luck regards John C

  • yes but blood test are not should be a cortisol 4 times a day saliva test.....and if you have cortisol issues which I bet you do bec it is caused by stress, then regulating your thyroid will be difficult and it can cause all kinds of problems if you don't get it under control from high sugar high cholesterol etc......taking vitamin c and b 12 and b complex will help a lot with stress and adrenals....and cortisol but you must sleep 8-10 hours a day, learn to just let go of things which I had to learn to do and relax more and stop being superwoman, and learn to let others do more , and eat more whole foods and less processed, and it causes hair loss as well.....I ordered a cortisol test 4x a day off amazon, did it home and took it to my dr could do the same...they will email u the results and tell you if you have high or low cortisol issues but some dr don't believe in adrenal nature path or DO drs are better....and you may have hormonal problems as well that interfere with thyroid since it is a axis that all works together and you must have the right levels of iodine, zinc, selenium etc and many more in your body for your body to process thyroid meds is what I have also just found out.......there is many issues and probably a combination that is causing your issues.....I went to a bio identical hormone dr that looks at all these things....that may be a idea...

  • taking a thyroid support supplement with everything in it often times helps but avoid ones with glandular in them if you are on thyroid meds ..pure encapsulations thyroid support is good avail online and amazon....

  • I think you need to read this :

    If you've had a gastric bypass, does that mean it is reversible? Or has most of your stomach been removed? I wonder if the problems all stem from the surgery you've had. If reversing it is possible then I think it should be something you consider. By the sound of it your life is in danger.

    Edit : Ah, I see greygoose has already suggested reversing your gastric bypass.

  • That's an amazing, and a terrible, article.

    I have never been able to understand the... justification for bariatric surgery. It assumes that all your weight problems are due to over-eating. I'm willing to bet that very few weight problems are down to over-eating - there can be so many other reasons. Thyroid problems being just one of them. And, given that most anorexics end up with thyroid problems, what is the reasoning behind putting people into what is virtually an anorexic-like state? It would seem to be self-defeating.

    I really, really can understand the desperation that leads patients to opt for the surgery - I've been in that situation myself. But I would never have found the idea tempting because I'd done so much reading about it, before I got that fat. But, the doctors, and the surgeons should know better. They should have a better understanding of cause and effect. Removing half of someone's stomach is a very serious thing to do, how can they approach it so lightly? The whole thing just leaves me speechless. I just do not understand.

  • Yes, I was gobsmacked by the article too. It is indicative of the wider problem of doctors knowing nothing about nutrition and the importance of good levels of vitamins and minerals, and the symptoms of them being low.

    And to leave someone who has had this drastic surgery to suffer, and say their problems are psychiatric is typical of modern medicine.

  • Yes, absolutely typical! They cover their ignorance of bodily processes by blaming everything they don't understand, on the patient. And, the best way of doing that, is by insinuating that the patient is mad.

  • Totally agree, I've never a bypass as a solution. I'm betting it's offered on the NHS because they perceive spending a big lump of money in one go is a cheaper option in the long run because it saves on treating the multitude of obesity related conditions that occur. Shortsighted in my view because there are side effects to gastric surgery and they're assuming the root cause of the obesity will be fixed, it won't, as you point out, over eating is. Or the only cause by a long shot. I don't overeat, I've cut a lot of carbs out, eat only twice a day and exercise and I've been taking a 10 minute completely cold shower every day for a few months, but can I shift it? No. I'm not hypothyroid of course because all my results are in range ho ho ho. I wouldn't consider a bypass if I was twice the size I am.

  • "Over eating is NOT the only cause ..."

  • Another cause is not eating enough, and over-exercising.

  • They said my levels for the thyroid were fine all these years then after the gastric bypass they found the cancer. I tryed loosing weight and would not eat for years and was always active and ocd up cleaning and now i cant even stand without passing out white and low blood pressure. i miss the active me and i fell like i am being punished by life for something. i wouldnt wish this on anyone. The gastric bypass is awful as well the drs pushed me on it i wanted to do it myself but they said i had a condtion called sudo tumer. sorry i suck at spelling

  • Very sad article :(

    I cried reading it because it reminds me of my own situation having had a thyroidectomy. I walked into that operation a very healthy 34yr old who loved to dance, had a promising career, etc, etc. But because thyroxine doesn't work for me I've been mostly housebound for four years.

    And there is that same medical attitude, that they did the surgery for reasons. The fact things haven't worked out is none of their business :(And that poor woman wasn't even ill in the first place.

  • im house bound because of the side effects of all. because my tsh levels were normal they wouldnt check my thyroid or try a endo dr so they told me i needed the gastric bypass. i wanted so bad to be normal and do it on my own. for all the people who are helping me and talking to me about this i want you all to know it means the world to me from the bottom of my heart <3 im still fighting. my children need me and my wife needs me and her health is bad herself and she needs a kidney and takes care of herself as well. The four of us girls suffer greatly and my kids need me. Thank you all from the bottom of my heart<3 (Jamie From Maine) send some good drs up this way and good people like you will ya <3 Thank you

  • Do try and find a functional doctor - Who will help you get to the bottom of why you're having this terrible reactions you will have to have some sort of replacement thyroid hormone replacement since you don't have your own thyroid. Sometimes you can do a search but the best way to find a functional doctor is to ask around the ones on the Internet are usually the most expensive ones . Many times here in the states you can find the DO doctorS and they do a form of functional medicine at the very least they listen to you and try and help you find the answer . I too have even endocrinologists and MDs who told me it was all in my head what it was is Hashimoto's . It took me 10 years and it was a functional doctor a DO - Who finally help me find the diagnosis of Hashimoto's . If you have Hashimoto's even though you've had the thyroid removed you still are dealing with the auto immune disorder - and still need to behave as if you have antibodies against a thyroid because I won't hear that you do. Since you have food allergies it's probably a good bet that you have an autoimmune disorder. The number one thing to remove from your diet is gluten and dairy and I know if you can't eat meat either - and I have been there - You're wondering what kind of food you can eat. For me it wasn't the food that I was allergic to what the hormones and other chemicals that farmers use in the meet here in the states . I could eat grass fed beef and hormone free chicken without a problem at all . I just couldn't eat out of the restaurants or the normal routine grocery store . Fortunately I live near farmers where I could get grass fed beef. The good news is once you get off of the gluten in the dairy in the hormone infested meats and your body will calm down and you can eat more like normal people . Again I would that and I would encourage you to look into auto immune disorder like Hashimoto's . You'll most likely need a functional doctor to help you get the endocrinologist work up that will help you find Hashimoto's or whatever auto immune disorder you probably have . I strongly advise looking up Isabel Wentz the pharmacologist who beat Hashimoto's with diet . Again you always have to take thyroid hormone replacement but following the Wentz protocol Will more than likely make you feel much better .

  • Thank you <3 my mom has multiple sclerosis but they have done a mri on me years ago and havent found lessons on my brain so that is good.

  • PS one more thing especially don't eat salty cured meats like hotdogs or's sausages or cold cuts they cause extreme problems like you described . You will have to eliminate them from your diet almost permanently . Likewise if you're eating iodized salt remove it from your table and replace it with sea salt or some other natural form of salt .

  • Hi there. Just a thought... have you ever had Reiki or gone to a Body Talk practioner?

    I have Reiki level 1 and 2 and I'm currently working on my Master level. I started doing self Reiki to myself every morning this past two weeks and I have already noticed how much more energy I have this week!

    I also follow a gluten free/dairy free and low sugar diet ( replace sugar with honey or maple syrup) and all of these things combined help to make me feel better.

    As for Body Talk... Body talk practioner can help us hear what our body is trying to tell us. They are able to help us uncover the blocks that are causing disease or sickness in the body which are preventing us from healing. My practioner uncovered that one of my emotional blocks dated back to when I was in the womb and also when I was born. We inherit a lot of things from our parents and families and don't even realize that we carry this things around with us on a subconscious level. There has been lots of studies that suggest that our emotional health can have a ton of impact on our physical health.

    If you read about the Chakras in our body, thyroid issues stem from the throat chakra being imbalanced. The throat chakra represents, " speaking our truth". It is the way we communicate.

    Lots of times people who are not speaking their truth ( following their hearts desires and being able to communicate their needs and desires, being honest with themselves and others etc) have issues with their thyroid.

    Last summer when I started writing, spending more time in nature, putting myself first and not last and following my passion of playing piano, my thyroid levels were the lowest they have ever been. I was getting compliments from many people about how I looked and glowed.

    This past winter, I got sidetracked and started second guessing myself. My writing tapered off and I started playing music for others instead of myself, and my thyroid levels increased again and I have had a few bouts of flus/colds etc. so this was a clear message to me to start taking better care of myself and letting my heart make the decisions not my Ego.

    This may be something that is out of the box for some people but as I continue to do reiki and seek alternative energy based healers, I am starting to realize that our ability to heal ourselves is a possibility. We just need to focus on the positives, don't continuously think about the sickness, the symptoms, the disease. Try to focus on being healthy and the times when you feel good. The power of our minds can be magnificent.

    Having said that, I also realize it's hard to think about the positive stuff when you feel so wretched and sick. But slowly, try to bring more positive thoughts to your mind.

    Meditation is also extremely important for us that have thyroid issues and who also suffer from adrenal fatigue. Slowing our minds and bodies down helps to decrease the cortisol in our bodies, bringing relaxation and decreasing stress to our body.

    Of course all of the above is combined with your other health professionals and medications etc, but it is an important part of our healing.

    Hope this helps!

  • Ignore the doctors altogether, you know yourself best. I don't know why doctors remove thyroid glands and then do not provide the best thyroid hormone replacements.

    I do feel for you as I had undiagnosed hypothyroidism but I do have a thyroid gland.

    You may have a defective gene which means you cannot convert T4 into T3(it is called a DI02 and will give you a link). T3 is the only active thyroid hormone required in all of our receptor cells. We cannot function without it.

    I would be apt to try T3 again as it may have been the levothyroxine in your body which made you unwell, especially if you have a defective gene which wouldn't allow conversion to T3.

    (I am not medically qualified by the way but have had a similar battle but definitely not nearly as bad as you are suffering at present.

    Dr Lowe (RIP) took 150mcg of T3 once daily (he never split dose) but you should start off gradually. He took his in the middle of the night. He was an expert on Thyroid Hormone Resistance.

    Liothyronine is the only active thyroid hormone required in all of our receptor cells T4 (levothyroxine) has to be converted to T3. If you are resistant you need a bigger dose of T3 than someone, like me, who isn't.

    Dr Lowe died through an accident and he was an Adviser to

  • I forgot the DI02 gene defect:

  • Searchingforanswers,

    Some people cannot tolerate T4 hormone at all, not even in ndt. You probably need T3-only therapy (e.g. cytomel). However, if you have been without an adequate thyroid replacement for a long time your adrenal glands are probably really struggling. You may have partial adrenal insufficiency or Addison's disease and therefore you may need hydrocortisone replacement (synthetic form of cortisol). Your body won't be able to process T3 hormone without an adequate dose of hydrocortisone. In fact, T3 will lower your cortisol levels. You need to check your levels of cortisol, ideally through saliva testing throughout a day.

    Take care xx

  • I'm sorry to hear your suffering so much and with no support from the medical profession only adds to your suffering! I think it might help to address your leaky gut issues and research into it as food and medication enters the blood stream instead of the usual roots through your gut causing your body to go into allergic reaction as it sees foreign body's in your blood stream. I to am trying to recover from it and immediately gave up gluten wheat and dairy which has gone a long way into repairing it. A naturopath is a good place to start much more knowledgeable than GPS can help organize tests and offer good practical advice. I find GPS are only able to understand what the multimillion drug companies tell them. People on here seem very knowledgeable but if there's any advice I can offer regarding your leaky gut syndrome please feel free to ask. Hope today is a better day for you ☺ x

  • Could it be possible you're experiencing reactive hypoglecemia after eating and after taking thyroid medication? Do you know if your blood sugar issues have been investigated fully? (Insulin resistance, pituitary hormones, all other hormones). As others have said it may well be that your cortisol is low (or your dhea) and that amongst many other things need to be investigated. I can tell you I experience similar, I have had really bad problems in being unable to tolerate medications and I seem to end up hypoglycemic.

    Also without trying to echo other people's responses you may very well have other vitamin/mineral deficiencies which may not have been identified. I can say from personal experience that B vitamins and vitamin E (full spectrum complex) has helped my hypoglecemia. It hasn't been an overnight fix and does take some time to see improvement, but I don't feel as bad after I eat now, my sugar and general food cravings have lessened. I do still feel better when I don't eat but I'm finding this is improving little by little over time. I don't know if that was worth mentioning but I thought I'd put it out there incase it's of any help. I really hope you feel better soon.

  • I would contact Dr Shook in Hickory N Carolina. Good luck. I hope you get well soon.

  • I mean could this be possible?

  • This just sounds dreadful.

    Have you been checked for adrenal insufficiency?

  • I guess you may have low cortisol and low Aldosterone.. if you are hypothyroid, your cortisol gets low as well as aldosterone..

    I am worried about you.

    Good luck.

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