When you are taking your thyroid medicine every day just like you’ve been prescribed and you still feel sick, sick, SICK.
Written by Paul Robinson
Once a doctor has prescribed thyroid medication to you, how is it possible that you continue to suffer more or less the same symptoms? Well, unfortunately, there are many really good reasons for this. Being aware of them can save you years of continued ill health.
You may go back time and time again to your doctor to discuss the on-going symptoms with him/her. You might even eventually change doctor. All of this takes a lot of time. Many weeks may pass by. The weeks may then turn into many months. Before you know it, several years have gone past, and you might still be struggling to feel well, even though you know that you shouldn’t be because you have been working on all the right things.
Sometimes, completely relying on your doctor to fix your health is not going to work!
Every patient needs to know enough to be able to work hand-in-hand with his or her doctor. Thyroid patients should be knowledgeable enough to assess if their current doctor is going to be able to help them or not. They need to be able to recognize when it is time to go and find a doctor who can work with them cooperatively. I will come back to this at the end of the article.
Let’s look at some common reasons that may cause you to continue to have symptoms of hypothyroidism while on thyroid medication.
1. Your thyroid medication dosage is never allowed to get to a high enough level because of the way your doctor is interpreting and applying your thyroid laboratory test results.
This point applies to all types of thyroid medication: T4, natural desiccated thyroid and T3.
a) TSH.
It is common for a doctor including endocrinologists to be focused on thyroid laboratory tests as the main way to manage your treatment. Many doctors are fixated on keeping TSH at a level they are happy with. This level might vary dramatically by country and by doctor. Some doctors prefer to see their patients on thyroid treatment having a TSH level lower than 2.0 but higher than 0.5. Some doctors might be happy with TSH below 5.0 but above 1.0. It is very common for many doctors to only use TSH to assess treatment success and to pronounce that everything is ok (regardless of FT4 or FT3 results). Invariably, most doctors and endocrinologists get uncomfortable if TSH gets very low and may reduce your thyroid medication if this happens.
Many physicians think that simply getting TSH into the laboratory range means that your thyroid medication is at the correct level. This approach is wrong. TSH is a pituitary hormone and a poor measure of whether your treatment is adequate (although high TSH is likely to mean that the treatment is inadequate). Some people need more thyroid hormone and that might send TSH near zero – this may be perfectly acceptable, as long as the person is not showing indications of being hyperthyroid and their FT3 is not over the top of the reference range. However, in many cases, if TSH gets below 1.0, an endocrinologist or doctor is likely to reduce your thyroid medication, even if this makes your symptoms get worse.
b) TSH, FT4, FT3 & rT3.
More informed physicians use a wider range of thyroid laboratory test results than just TSH. However, even when these are all tested, it is no guarantee of being correctly treated. Often the thyroid laboratory test results are viewed as the ultimate window of truth on what is happening in your body. In fact, they are not that at all. They are often misused and misinterpreted by doctors who are not up to date with much of the new research and who are still sticking rigidly to outdated guidelines.
FT3 (Free T3) tracks symptom improvement. FT3 is the only thyroid lab that goes higher, as the person’s treatment begins to resolve symptoms. There is no relationship between TSH and FT4 and symptom improvement at all. So, a doctor who sees TSH and FT4 looking good may mistakenly think the treatment is successful, even if FT3 has not improved.
Also, many doctors do not pay attention to Reverse T3 (rT3). In some countries, the UK for one, rT3 is not even tested as most doctors think it is an inactive metabolite. Elevated rT3 is a marker of slower metabolism. Elevated rT3 does indeed reduce the number of D2 deiodinase enzymes that are present. Because it is D3 deiodinases that convert T4 to rT3, very high rT3 is a likely marker that these D3 enzymes may be interfering with T3 action in the cells (even though it is not rT3 that does this directly). So, high reverse T3 is a marker of T3 being blocked in both ways – through lower conversion (less D2 deiodinases) and blocked T3 (high D3 deiodinases).
Laboratory ranges are population ranges based on an amalgamation of data from many patients. These laboratory ranges are wide and do not reflect your own personal, necessary ranges. Unique, individual person ranges are less than half as wide as the laboratory ranges. In fact, an individual’s range for FT3 or FT4 is typically about 38% of the large population ranges that are our lab test result ranges. That’s a significant difference.
For example, imagine Janet had her FT3 tested and her result was 4.5 pmol/L with her laboratory reference range for FT3 being 3.3 – 6.6 pmol/L, Janet’s own personal range for good health might actually be 5.1 – 6.3 pmol/L and she would have to be within this personal range of FT3 to feel well. But, of course, Janet doesn’t know what her individual personal range is. Janet still feels pretty ill but her doctor is really happy with the 4.5 FT3 result and tells Janet she is correctly treated and he can’t make any changes to raise FT3 further.
The bottom line is that sometimes even a mid-range FT3 result is not enough for an individual.
Laboratory test results on their own often do not show what is happening in the patient’s body. The only things that actually indicate how thyroid hormone is working within your body are: Your Symptoms (and whether they are disappearing) and Your Signs (measures like body temperature, heart rate, blood pressure).
The best way to go about monitoring a treatment’s success is to focus on the symptoms and signs of the patient i.e. the clinical presentation (in medical terminology). The thyroid laboratory test results should be looked at, of course, but do not be fooled into thinking that they show that you are properly treated. On their own, they do not. This is a biggie! It may be one of the single biggest reasons that thyroid patients do not recover.
2. Your doctor increased your thyroid medication. However, you developed symptoms of anxiety or high heart rate or palpitations when the increase happened. So, your doctor reduced your medication again.
Very often when this happens, it is not that the thyroid medication was too high. It was really that something else needs fixing.
a) Low cortisol.
If you have low cortisol and your thyroid medication is increased it is very likely that you will have some unpleasant symptoms. You might get a rapid heart rate, or a thumping beat in your heart. You might feel extremely anxious and edgy, or even irritable. Your body temperature might not rise as expected. You may be extremely fatigued. Dizziness due to low blood pressure can also happen. Sleeping might be very difficult. You may also feel nauseous or have digestive system upsets possibly including diarrhea. The symptoms are different in different people. But they are usually not pleasant and it is common for a doctor to just think your thyroid hormone is at fault.
Cortisol and thyroid hormone work together. The proper level of FT3 for an individual causes cortisol to work properly. The proper level of cortisol for a patient causes FT3 to work properly. Cortisol and thyroid hormone are synergistic.
It is next to impossible to guess if you have high or low cortisol – the symptoms can be very similar. Testing cortisol is essential. I always prefer to test both salivary cortisol (four samples over the day, including Dhea Sulfate), and an 8:00 am morning blood cortisol. This is because various things can corrupt a saliva cortisol result.
It is also worth being aware that fixing low cortisol does not always require hydrocortisone or adrenal cortex. Instead, just getting on the correct thyroid treatment for you can resolve the low cortisol issue. Sometimes other approaches are also required.
b) Low vitamin B12 (important for T4 to T3 conversion and can cause many severe symptoms overlapping with hypothyroidism).
If low B12 is present your thyroid medication may appear not to be working well. However, it may be the low B12 that is at fault. Debilitating fatigue is one of the major symptoms of low B12. Here is a link to more information on B12, including a longer list of symptoms.
If you have been taking any supplement containing B12 recently, testing it will not yield an accurate result. It is best to be off B12 for several weeks (months to be sure). The laboratory ranges for B12 are very wide and not helpful in deciding if B12 is low. The link I provided above about B12 will explain this and let you know what to look for in your results in terms of a ‘functional range’ for B12.
c) Low folate.
Folate is necessary for many purposes and it is very important in the methylation system. However, folate also works hand in hand with B12. Your B12 can be ideal, but if folate is low you can have all the symptoms of low B12. So, testing folate is also important.
d) Low iron or ferritin.
Low iron and ferritin are well known to cause thyroid treatment to fail. It can be extremely difficult to raise the dosage of thyroid medication in the presence of either low iron or low ferritin. The symptoms of low iron or low ferritin are numerous and overlap a lot with those of hypothyroidism. It is very easy to assume that your thyroid medication is not working but really it is a low iron or a low ferritin issue. Fatigue, and general feelings of being unwell are common. Brain fog, anxiety and racing heart are also often present.
So, testing serum iron, ferritin and TIBC (to be able to assess how much scope there is to take iron supplements) is important. You have to be off iron supplements for a week before testing iron and TIBC. For ferritin you can continue supplementing.
e) Low vitamin D.
There are links between low vitamin D and hypothyroidism. Some of the symptoms of low vitamin D also overlap with low thyroid symptoms. So, again it is important to test this early on in order to not get confused during your treatment with thyroid hormones.
3. You are actually on the wrong type of thyroid medication for you.
This is a worldwide problem and it happens so often. The majority of doctors are trained to think that T4/Synthroid/Levothyroxine is the only treatment that is ever needed. They think that T4 always converts to enough T3 and that this conversion cannot get compromised. This is a massively flawed assumption. Let me provide a few examples of why this is simply not true.
If someone has had a thyroidectomy or RAI or has had Hashimoto’s thyroiditis for many years, they will have lost some or all of their thyroid gland. The thyroid gland is the most important organ for the conversion of T4 to T3 in the body.
T4 has to be converted to enough T3, because T3 is the biologically active thyroid hormone. It is T3 that keeps us from being hypothyroid. T3 gives us energy and keeps our metabolism running well so that we don’t put on excessive weight. The loss of the thyroid gland will destroy nearly 25% of the capability to convert from T4 to T3. There is simply no getting this conversion back again once you have lost thyroid tissue. Unfortunately, doctors still continue to prescribe T4 on its own to those people who have lost this conversion capability along with their thyroid gland. Inevitably, this leaves them deficient in T3 and they often have remaining symptoms of hypothyroidism.
Anything that interferes with the ability to convert T4 to T3, OR that results in high Reverse T3 (rT3) is also a problem for those people who are only offered T4 medication. Reverse T3 is a T3 blocker and stops T3 from working properly – it is a brake on metabolism.
There are several other thyroid medication options.
a) A natural desiccated thyroid (NDT) product.
This contains T4 and some of the active T3. Because it contains T3 and T3 is quick acting and potent, NDT often has to be taken 2-3 times per day to spread out the T3 content. The ratio of T4 to T3 in NDT is fixed and is often around 4 to 1. The benefit of NDT is that it provides both T3 and T4 hormones. This helps those who have conversion issues and who have lost some or all thyroid tissue. The downside is that the ratio of T4 to T3 is fixed and whilst this fixed ratio may work well for many patients, it does not work well for all.
b) T4/T3 medication.
The T4 is usually taken once a day and then 2-3 doses of T3 are also taken during the day – much like NDT. The ratio of T4:T3 can of course now be varied and this can enable the person to have less T4 and more T3 if needed. This can be very helpful if the ratio of T4 to T3 within NDT is not quite right for you.
c) T3-Only medication.
If the problems are severe enough, this treatment can work really well, as no T4 is needed at all. This approach would eradicate all rT3 from the system over a few months. T3-Only can work perfectly well. I personally, have been on T3-Only for over 20 years and I have zero FT4 and zero rT3 in my system and I am very healthy. There are many people who have had to resort to T3-Only for a variety of reasons and as long as it is dosed correctly it works perfectly and safely. There is a lot of misinformation that comes from both doctors and patients regarding T3-Only. Many doctors categorically state that T3-Only is dangerous and causes heart problems and/or bone loss. This is absolutely not true when it is dosed carefully and with a safe protocol.
4. Your doctor may not be fully aware of all the intricacies of how the thyroid system works.
a) Thyroid hormone works hand in hand with cortisol.
Cortisol enables the thyroid hormone to have its proper effect. Thyroid hormone enables cortisol to have its proper effect. If a thyroid patient’s medication dosage is raised but cortisol is not high enough, the consequence can be that adrenaline is made to compensate. This causes unpleasant symptoms of anxiety and rapid heart rate as well as other undesirable effects. It is also likely to leave you with hypothyroid symptoms. Testing cortisol with a 4-point saliva cortisol test that includes Dhea Sulfate is important as well as an 8:00 am morning cortisol test.
b) Adding more thyroid medication (T4 or NDT or even more T3) sometimes doesn’t actually raise FT3.
TSH often lowers when thyroid medication is added. Lower TSH causes fewer deiodinase enzymes to be produced in our cells. These enzymes are necessary to convert T4 to T3. So, lowering TSH may lower the conversion rate. It is common that after a raise of any thyroid medication (even adding a little T3), the person often feels an immediate improvement, only for this to go away after some days due to the lowering of TSH. In this case, the thyroid medication needs to be increased further in order to increase the FT3. Sometimes the balance of T4 and T3 needs to be adjusted so that there is more T3 in the person’s medication, and possibly less T4.
Sadly, many doctors just tell you that the raise of medication was not needed, or that, as they suspected, adding extra T3 was not what you needed! In actual fact, it was exactly what you needed but they did not understand enough to follow through with either further testing or a more informed use of thyroid medication.
5. Your diet is causing some issues that are interfering with treatment.
a) Vitamin, mineral and other issues.
Hypothyroidism is notoriously linked with low nutrients like vitamin B12, Vitamin D and iron. In some cases, this is simply because a person who is hypothyroid cannot absorb nutrients in the same way as they did when they were healthy. The stomach and gut are made of cells. Since all your cells are hypothyroid, the digestive system is also operating less efficiently than it used to. In other cases, because the hypothyroid patient is struggling with weight problems, they may have restricted their diet somewhat and made it more likely for them to develop deficiencies and/or blood sugar issues. Testing essential nutrients like B12, Folate, Vitamin D and serum Iron and Ferritin are always a good idea. However, beware of your doctor just saying that your results are normal – see point 2 earlier in this article for more information on this topic.
If someone is concerned over a weight issue, I would be careful about just eliminating carbs from your diet in order to lose weight. This may lead to low blood sugar and feeling even more ill than you did to start with. I think a ketogenic diet can be helpful for some people as it keeps carbohydrate intake low but keeps good quality fat and protein up to provide steady release blood sugar. In general though, try to seek out the help of a competent nutritionist / diet expert who can help you maintain a good intake of essential nutrients and energy providing food.
b) Allergens and autoimmune reactions.
Diet can also be instrumental in reducing allergens and may in some cases help to reduce autoimmune responses (via anti-autoimmune diets). I am not going to write more about this, as there is plenty of information out there on the Internet and in some very good and well-known books.
6. Sex hormones are imbalanced or low, or some other issue is at work.
Sometimes, when the basics have been thoroughly explored, and you know you’re on the right thyroid treatment for you, it may be necessary to look at other reasons for any remaining symptoms.
7. You may have been told that there is nothing else that can be done!
This has happened to many patients that come to me for help. It happened to me too!
When I was at the end of my tether, and feeling like I might be an invalid for the rest of my life, I was told that I would have to live with my symptoms. I was told that there was nothing else that could be done. My endocrinologist told me that I would simply have to accept that this was what my life was from now on. It was a big fat lie! It was misinformation that could have condemned me for the rest of what may well have been a short life.
The bottom line is that there is always some valid reason for thyroid medication not working well and leaving you with the symptoms of hypothyroidism. It is not that, “thyroid medication does not work for you for some reason”, or that “you are a complex case”. It is just that your physician has not got to the bottom of the cause.
This is why I strongly believe that every thyroid patient must be his or her own advocate. Patients need to learn enough, and know enough, in order to argue for themselves and put themselves ‘in the driver’s seat’ when dealing with their health. By being in the driver’s seat I mean that they know enough to discuss their situation with their physician and hopefully influence them to do the right thing. If this is not possible, at least you as a patient will know that you need to switch doctors.
It is risky to just hand over your health to your doctor and simply expect them to fix you. It can work in some cases but often it just doesn’t.
Sometimes it can be a struggle to get well. I know this from protracted personal experience. It took me 10 years to recover from incorrectly treated hypothyroidism that turned me into an invalid, stuck with the label Chronic Fatigue Syndrome (CFS). It took me several more years to get fit again. I lost all my thirties and early forties due to the incorrect treatment. I also lost my career. Moreover, the personal cost due to damaged relationships has been intolerable to bear at times. I do not want that to happen to others. I really don’t!
About Paul Robinson
Paul is a thyroid patient advocate on his website Paul Robinson Thyroid who became ill with hypothyroidism in his late twenties. He was eventually able to recover using T3 replacement therapy. He is now over sixty years of age.
READ NEXT: CHRONIC FATIGUE SYNDROME, HYPOTHYROIDISM & T3: MY PERSONAL BATTLE
I dont understand I spent two years all four stay elevated showing both hypo and hyper and no matter how high the dose my TSH was less that 0… Symptoms never improved even at the highest doses so she just weaned me off and I am back to ground zero no answers
On MAy 2020, I was diagnosed with melanoma. I started Inmmunothereapy treatmet for a year, it ended on April 2021. Evry 3 months my oncologist checked my TSH, T4. so she can monitor that my treatment was not making any damage to my tiroid. On July 21, I was tested again and for my surprise, my tiroid that was has been normal all my life, was completely off! TSH :22.14 FreeT4 ;0.88. She inmediately prescibed llevothyroxine .25 . I took it for 5 days and it was awful. I never had symptoms of any kind but as soon as I started taing that medication, thhose 5 days were hell! fatigue, strong headaches , and verysleepy. I have a very active life so for me that was concerning! we decided to stop medication, and she reccomended me to go see an endicronologist. and get tested after 4 weeks. I did. At the end of JUly my tests results were TSH:13.22 . t4: 3.5. She also did other tests as well. TSI, T3, everything was normal. We decided to wait and no to take any medication for a while . I got tested again on Sept 22,21. My TSH 42. 88 !!! T4 : 3.8. So now she told me lets Tirosint, she told me to start increasing dose from .25 to .75. Today is my 2nd day taking 25 + 12.5 = 37.5. microgram /ml I am taking it at night. I ahve been feeling lethargis, headache , sleepy and my energy level went to 1/10. I take it as an oral solution(ampule). My concern is that I am already feeling same way as before by taking 0.37 ml, so how am I going to feel by taking 0.75microgram/ml?? It seems to be that I start taking medication and I get symptoms from hypertiroidism right away! As I mentioned, my hypertiroidism was caused by my treatment with Opdivo and I am asymptomatic. Last time when I was taking levothyrocine for 5 days, I stopped and in less than 4 days I was feeling completely normal. I just feel that taking a medicine that makes me feel so sick its nonsense! any thoughts? help? Thanks
I was diagnosed not even a year ago with Hashimoto disease. My tsh was almost 25. I was depressed gaining weight and losing my hair. I’m 58 and feel 80 some days. My levothyroxine started at 75 mg. The next test tsh was 12.9. The pills went to 83. My tsh was being tested every 2 months and I was determined to feel like I used to. I’m taking 113mg levothyroxine but know it’s not enough because I’m so depressed that I think of suicide daily and pray for god to come take me. At this point I am so hopeless that anything can fix me and I don’t want to live like this but I keep going on, hoping my body gets better or shuts down.
I am sorry for how you feel but you have to keep on fighting and never give up as when my TSH was at 82.0 in 2006 that right it was that high the doctor though I was going to die. All he did was prescribe levothyroxine but while it did get my TSH back to normal I still felt like crap all the time. It was not until I had a heart episode that I learned about NDT and it was like I had seen through a new set of eyes. Fast forward with all of the NDT’s being recalled I have resorted to a straight T3 synthetic dose and my RT3 has dropped like a rock and I am feeling way better. So try something else, MCT oil also really helped my thyroid out also. Read up on the net and don’t be afraid to think outside the box on your thyroid issue. Remember you can help yourself more than the doctor can on this issue.
There is hope to be well with hypothyroidism, so much hope, to feel wonderful even with this disease. Please contact me and I will share what resources I can to help you. You will find my contact email in the About section in the top menu bar under the Hypothyroid Mom logo at the top of the website. If you are feeling this way, contact a mental health professional to help with these feelings. It is hard to be a thyroid patient and when we are struggling with so many symptoms it is important to get support through it while doctors figure out how to help with the medical part. And let your thyroid doctor know this right away because every part of the body including the brain requires thyroid hormone. There are suicide hotlines and even calling emergency 911.
I hope you are in a better place now.
I understand completely what you are going through. I am 34. I have had Hashimoto’s, likely since at least I was 16, when I was first diagnosed with hypothyroidism.
This past year had been the worse. It started pretty well. I seemed to be doing better. I thought my thyroid was working better.
Anyway, but when I learned I was pregnant and that I was much under-dosed on my thyroid… well… increasing my dose to a better level, while my dose needs were rapidly increasing, and being pregnant with twins. I was severely under dosed on my thyroid meds for months and spent all of those days wishing I was dead. I was severely tired and had terrible insomnia.
Things that helped me … having my t4 at 1.2, taking liver powder (Radiant Life), and zinc (mega-foods). A trial of t3 I think also helped boost some my metabolic processes.
In the end… I am still very tired and feel like I am 80. My twins were born at 38 weeks, by induction, both being over 7 lbs. They were born very healthy.
For me, the worst of the trials seem to pass. I still am hopeful to find more optimal dosing.. possibly including things other than t4.
God bless.
I’m trying to sign up for these emails, but the sign up button isn’t responding. I’m using my phone if that makes a difference. I’m another fed up 1/2 thyroid woman that has so called “good numbers” now, but feel like crap, can’t sleep, & am always tired…
I just wrote about a big message about my experience and the site said it was deleted for spam? Please fix this, that was just a complete waste of my time it seems 🙁
I’m personally glad to be above ground. We have lost so many people to other life threatening diseases, and illnesses. I applaud the research t took to inform us of our hypothyroid disease, and like Dana losing an unborn child because of it. I’ve decided as I tell my endocrinologist, this won’t last forever, adit gives me a sense of positivity, even though I suffer from insomnia, I use my time in positive arenas, and allow my body to naturally, get tired, and sleep. I couldn’t do this when I was working full-time and pushed through each day. Thankfully, I’m retired, and can read well-informed documents. Thank you!
Debi, This is Dana Trentini from Hypothyroid Mom. It is wonderful to hear you can now let your body rest and sleep and recover when it needs it. It is wonderful to have you at Hypothyroid Mom.
I had to finally do some research and see if there were “Hypo Forums”, because I just feel like shit. Diagnosed with Hypo in 2018 and put on 100mcg Synthroid. The last 2 years have been hell, sinus issues galore, (in which I take over the counter sinus meds like candy, day after day!)
In addition to the sinus issues, I find my extreme fatigue very alarming, especially when I witness senior citizens, and well as the average run of the mill local junkies living a more active life than I do…
Right now, I feel like going back to bed, even though I woke up at 11:00 am this morning, and had a 2.5 hour nap…4 hours ago! I was planning to play guitar for 2 hrs this afternoon, but just like yesterday and the day before yesterday, I’m just too god damn tired to!
I’m going to go lay down and watch TV now!
I hope someone on this site can give me some guidance…Thanks for reading!
I hope someone will too! and you’re being treated and on medication. Sorry to say but you are on your own journey as far as treatment. There are MANY sites to get information from, yet it is your doctor that will make the Dx and Rx. Its a tough road.
Yup…not a good sign for trying to get back to my “NORM” right?
Great article and sadly I can advocate all day long and still won’t get proper treatment for my
Thyroid-less body.
Im currently battling weight gain, burning skin sensation, arthritis,Anemia and just recently a bad anemia episode and Im always told all these things are NOT related to being thyroid-less its always something else or something Im doing to myself …. nope it’s thyroid related 100% because I never had any of the above until I have my thyroidectomy 4 years ago.
Omg so true I feel the same my doc has me on 50 mcg yet I’m still knocked out all the time and the labs come back that I’m fine…so exhausting and horrible trying to get help.
Seems like I’ve got a lot of company….. keeping it simple…. at 17 I had my first major epileptic fit…. at 42 the fits disappeared and I developed rapid cycle bipolar…. then at 58 I was diagnosed with Hashimotos….. the thyroid meds definitely worked … I stabilised … no question about that…. then my blood tests came back as too low…. for a year that was fine… I stabilsed again…. in the past month or so, however, I have been experiencing mild rapid cycle s…. the blood tests came back as too high,…. so I cut back the thyroid meds… it didn’t work… now I’m currently attempting to manage the cortisol levels which is only partially successful…. it’s pretty clear to me that the doctors at the local clinic have no idea about cortisol and thyroid interaction so I’m my own…. being able to purchase the real NDTs in Australia is almost impossible so that’s not a choice…. I appreciate all I’ve read on here , a few more clues to what I can do to stabilise…. I’m 76 and I really don’t want to go out on a manic bang…. or a low for that matter….. so, thank you….
My doctor has given me all the tests, and she was hands on… but wait… after prescribing me compounded T3, she does tell me how much, how often or if I can take it at the same time with my 100 mcg of T4 daily intake. So, I am not better of because I do not know how to take the compounded T3. My Reserve T3 blood test is terribly high. I am obese. I am 82 years old and I know I have to be very careful with taking T3.
I have been living in thyroid hell for 18 years. Started out with horrible Afib. A year later was diagnosed with Graves disease and given RAI which immediately destroyed my thyroid. Doctors treated me like I was just neurotic. Long story short…..I have found a doc that suggested I try Tirosint. Wow, what a difference! I immediately felt soooooo much better, more coughing, neuropathy or weakness or feelings of doom and gloom. I highly recommend talking to your doctor about Tirosint and hopefully it will help.
I have had thyroid issues for about 20 years. I was always told my numbers where correct and I must be depressed or going through menopause. Finally saw a gynecologist who said I needed thyroid medication. Started at 25 mg and 6 months later it was increased to 50. Have been on that for about 12 years but now I’m experiencing those same symptoms that I experienced before taking medication (synthroid). Again I’m getting the depression remarks. How can I get help with this? Any suggestions would be appreciated.
Through my 55yrs of thyroid experience I would say that our bodies have changed. I am not the same 15yo as I am at 68 years of age. We need to be constantly monitored if not once, twice a year. If you’re not depressed don’t let the dr. claim that as cause. It can certainly be your thyroid. Be safe, Self-care and good luck.
Michele,
Stay on hypothyroid meds but switch from Synthroid to an alternate. Synthroid made me weepy and depressed. I swithed to Levothyroxine and the crying jags went away.
I had a thyroidectomy in 2013 and my issue has been weight gain and difficulty in losing it. I’ve been placed on levothyroxine 125 to 150mg back down to 125. I had a cortisol test and it was normal. Other symptoms are dry skin, breaking hair, fatigue etc. I’m now 68 yrs. Old so maybe the doctors feel like I’m going to have these problems anyway. Although I see an endocrinologist, how do you know when you have a doctor who is really interested in your concerns? The ones I’ve seen are just like the ones in the article. I’m in the East Orange, NJ area and if anyone is aware of a good Endocrinologist please let me know. Thank you
I’ve been taking levothyroxine for the last 5 weeks and feel rubbish I keep having hot flushes feeling sick dizziness and palpations ts baking my anxiety worse too I’m actually thinking of not taking my meds this morning can anyone tell me if all this is normal please
This is all wonderful information. How do we find the right physician to help with this, though? I’ve been to endocrinologists, Internalists, and a psychiatrist was the only one who gave me a complete thyroid panel. I live near Omaha, NE. Do you know if any good physicians nearby or what type of physicians we should be looking at?
I am from just outside of Omaha and have the same problem finding a Dr. I just switch everything to my primary Dr and going to see what he can do. I did find a great Advanced Nutritionist Dr Rupp. I would like to back and see her soon as well. My insurance does not cover a lot of her labs.
I am 8 weeks pregnant and found out I have hypothyroid , anemia , vitamin d deficiency, I am put in thyroid meds and supplements for iron , vitamin d .. I am petrified about my baby
Don’t be petrified! A good prenatal will cure a lot of that, we all need the extra iron for sure. The thyroid levels will be monitored safely for the baby. Our bodies naturally need more thyroid hormone and generate it during gestation. You just need a little help. Try a yoga class that’s approved for pregnancy so you can get the relaxation you need.
I had taken radiation to ablate my thyroid 6 months prior to pregnancy, just outside the window of safety and had an awful time. The increase in thyroid hormone I had to take was to mimic the body’s natural response. (I no longer had a thyroid) They constantly took labs and I had 3 ultrasounds. She was fine. The worst of it was how long it took to get “normal” after the pregnancy, but she was fine. Stay cool and enjoy the ride.
I was just started (1 week ago) on Armour thyroid meds 30mg every other day for 2 weeks then to increase to every day. I have been dealing with anxiety since August and in January figured out it’s hormonal (menopausal). I’m on estrogen and testerone pellets and progesterone. My problem is that I still have the jitters. My dr says this will go away. Using Clonazapam to control it.
What is your experience? Will it go away. How long does it take to get used to the med ?
I started on the Armour after being on 120mgs of regular levothyroxine. Reg levo made me sick. Tired, nauseous, depressed and I stopped menstruating. Well, I stopped cold turkey. Not a good idea in some aspects. I felt great for about 3 weeks and then not so much. I lost half my hair, gained 50 lbs. etc. I stopped going to my endo and dealt with my primary who put me on Armour 60mgs. I started with 1 at 30mgs. and worked my way up to 60mgs. I also take a B12 mix and a few other vitamins. I also have been taking the Keto pill. Now I have lost at least 50 of the thyroid lbs plus more. I feel a lot better in all areas. I also thought I was in menopause and am now regular again. To me, that meansy body is working fairly well. I have not been back to the endocrinologist. I have hope and pray for us all who have this disease.
Luckily when my TSH jumped too 56 and I had severe neuropathy and pain in my limbs, amongst many other symptoms, I had just switched primary doctors Who seems to really care. I was worried she wouldn’t know enough so went to an ends too who basically just agrees with her so I’m sticking with her for the time being. I’ve only been diagnosed this year and my meds have been tweaked 3 times, which include Synthroid and Some t3. I went about 3 months at optimal range then in a months time, my recent visit TSH was 16 and free T3 dropped to 2.2 which had her scratching her head so she ran a few more tests and is going to tell me next week what changes she’s gonna make to the meds. I bring her Info all the time and she listens so I’m comfortable with her there. I know she doesn’t know everything but she said that she’s going to consult with some other doctors and she’s been working with me so I think I found a good one but I’m not stopping my research because I’ve realized that as complex as our bodies are, it’s impossible for doctors to know it all. I’m so happy to find your blog!
Where do I find such a doctor who will cover understand and carry out all these tests? In 25 years I have never found one..all endos deal with near me is diabetes.. east sussex
Wow ive been diagnosed with low thyroid after 3 yrs of telling me i was depressed and all the signs of it and gaing 150 and im one who told doc.who actted like it was killing her to add a check in box after all her other checks.and sure enough it was low n she had nerve to say im glad we thought of this when she gave me every reason i didnt fit the person with low thyroid n she put me on .25 which after it seemed like 2yrs of getting poked it went up to .200 then fast forward 10yrs later i move n go see new doctor tell him what ive been taking n for how long n sign releases for records n he sends me to get blood work well i never here any thing he never told me noithing n he never calls in meds i finally get in and different doc.looks at test n said i was lying i didnt have ne thing my thyroid was fine fast forward tons of doctors now i have graves wth. How does that happen yet not graves issues but all my hypo issues all over again n now no meds one doctor gave me a betta blocker n i ended up in a short coma ugh wth n im low iron b12 n d to point ive had iron put in thru iv but yet never at same time i laugh n say which one is low now abcdefghigk. With every test then one doc banned me an endo out my whole insurance circle cuz i asked for a second option due to fact she wanted to take my whole thyroid out for what i said i had to file charges with hospital just to be seen in my provider. Circle were i live n i won yet that doctor same one who gave me meds i went in a coma with .and my hormones are so crazy no one can stand to be around me .so i get this whole artical even if i dont get all the medical parts i just wish i had one doctor give two shits about how hard my life has been because of these issues.and rippel affects and all the damm issues it causes n its not one smart enough n care at same time..but probley if it happened to them they figure it out then .
An Integrative Dr is a dr who will try their hardest in getting to the root of your problem instead of just prescribing a medication(which is basically just a bandaid) They are very similar to a Natural Pathic Dr and sometimes they are called a Functional Medicine Dr. They are amazing and worth a visit even though it is an out of pocket expense.
Medication is essentially the only way to provide treatment for us with no thyroid. I prefer a natural desiccated (NTD) pill vs a synthetic drug.
I had a partial thyroidectomy due to follicular lesions,non canceroous .I was given armour thyroid which keeps my levels in check on lab results. Meanwhile I have lost a lot of hair have to wear a wig, I have horrible insomnia ,IBS, High cholesterol,, got very heavy , have palpitations constantly and my finger nails all bent and twisted around the top and sides of my fingers so I have to keep the nails real short (or they usually break) Horrible dry flaky skin.My endo says none of these are related to thyroid issues. They are getting worse now but started taking vit D which I was deficient in. Are these all legitimate thyroid issues or am I just nuts? Everything I have read up on states these are actual thyroid symptoms.Are they?
They are signs of hyperthyroidism. If your fingernails are actually clubbing, that could be signs of other things or more rare thyroid complications. Get into another Endo and don’t feel bad about doing it. I have been chasing perfection for 18 1/2 years now on Dr. #7. Tell your GP or your OBGYN and ask for an immediate recommendation. We cannot just be “normal” on lab results. We have to feel good too. Several different doses of Armour Thyroid leave my TSH in the normal range, but only one of them makes me feel good. I was “normal at 120 and had to beg to get down to 90…that took 6 months of my life. . .90 left me with HBP and slow heart rate. . .finally dropped down to 60 after more than a year. All lab results fell in “normal”…
Wow. This is probably one of the best articles I have read about Thyroid issues. At 28, I had a doctor take the left side of my Thyroid out due to a very large benign nodule. A year and a half later, age 29, I had a check up and the ultrasound saw more nodules. The same doctor refused to biopsy them. He said I was too young and healthy for Thyroid cancer. I got a second opinion and 3 days after that appointment I was in the O.R. and having the right side of my Thyroid removed. I was diagnosed with Papillary Carcinoma which is the most common Thyroid Cancer. Needless to say, I never went back to the first Endocrinologist I had. I went about 6 months before they decided to do the RAI. I had my Gallbladder removed right after my second Thyroid surgery. My Thyroid levels have never all been in a good range. I am being medically retired from the military now due to always being ill. I am 31 now and daily I struggle to try to be normal. I have tried so many different medications and none have worked. I saw another Endocrinologist in Atlanta and I went 3 times. At the last appointment he told my husband and I that he did not have an answer for why I have the symptoms that I have. My military doctor is clueless to Thyroid labs and medicine. So I am just stuck now. I haven’t seen a doctor in months. I have no idea what my levels are and I just make it through each day. Some days I dont get out of bed. Once I am out of the military I will be moving so I am just in limbo until then. I am holding on to a small ounce of hope that I will find a better Endocrinologist in Oklahoma. I watched some videos by Dr. Eric Berg and he explained how the conversion from T4 to T3 takes place through the bile in the Gallbladder and Liver. I brought that up to one doctor due to me not having a gallbladder and he just shook his head and then raised my Levo dose. I’ve been diagnosed with multiple other things now and I take 4 medicines daily. I truely believe that is losing my entire Thyroid is why I am so sick. I never had a single problem until the right side was removed. That is when everything happened. Now it has been a year and a half, and I have had 8 surgeries and been hospitalized multiple times. I cant eat without throwing up, I can never go to the bathroom without some kind of laxative, I can never get a good night of sleep, I cant go through a day without almost having a nervous breakdown, I have a titanium rod implanted in my chest for my heart, I am the most out of shape I have ever been and my nervous system is all out of whack. All from a perfectly healthy and fit 29 year old to age 31 and feeling like I am 70. I never even thought of taking only T3 medication. This is definitely something I will look into more. I dont want to lose all of my 30’s. I just started them!!
Oops. I was 27 for my first surgery. 29 for my second surgery. I was never put on medicine u till after the right side came out too. I was fine with only having one side and my levels barely changed.
T3 only is not a solution. T4 converts into T3. You need both.
I can relate military medical destroyed my health after thyroidectomy (pap cancer). Sadly outside Endos are not any better…. You really need to demand T3 and T4 meds since your thyroid-less.
I had a total thyroidectomy in 2016 since then I have suffered with severe anxiety, weight gain , extreme coldness, severe fatigue , they had me on the highest dose of levothyroxine after the surgery. Unfortunately during the surgery they not only pulled out my thyroid yes, but they messed up something that had to do with my metabolism. As you can understand that’s fun fun. I have been suffering since I had a thyroidectomy, I’ve had 2 TIA, and I’ve been in the emergency room several times for my hormones being completely off whack..! I had one doctor walked out on me and said she don’t want to be my doctor anymore because she could not understand that I have so much anxiety..! She said it was all in my mind (my mind) I don’t wish this upon anybody. Had I had known I would have never had thyroidectomy. But unfortunately they told me I had 26 cysts and they were cancerous. After the surgery I found out they were all benign. I am now on Armour thyroid a hundred 150 mg and they still cannot control my hormones. Has anybody had a total thyroidectomy and if so after were you still diagnosed with hashimoto’s disease? And how are you controlling your hormones? sure would like to see if there’s any other medications I could try without hitting rock bottom and ending up in the hospital again. Any information would help thank you.
Hi Nancy, Yes I lost my thyroid in 2016 to pap cancer and my world crashed and burned ever since … I developed psoriatic arthritis shortly after thyroidectomy left me bed ridden in extreme pain worse part to this was it took me 2 years to get diagnosed with psoriatic arthritis and I have high cholesterol, burning skin sensation and constantly dealing with anemia …. agh! You really need to get copies of every thyroid test you ever had and start looking at them and researching this information and join a thyroid support group like health lock thyroid.
I went on a T3 only (under MD supervision) regimen because my T4/T3 regimen was ineffective. In less than 30 days, my TSH shot up to 15, my T4 (free and total) and reverse T3 levels were nearly undetectable, my thyroid was tender and enlarged. I had migraine headaches and was gaining weight! My lipid panel worsened. I was initially excited about trying the T3 only regimen. After this experience, I would strongly advise caution on a T3 only regimen. Everyone’s experiences are different.
Can this be added with my thyroid meds?
I was diagnosed with Hashimoto at age 19. I am now 65. Have been on the same dosage of Synthroid since. Although at some point insurance decided they would not pay for Synthroid and it was changed to Levothyroxine. I have not found a doctor who listens to me. I even had an appointment with the head of the Endocrinology Department of Johns Hopkins Hospital in Baltimore. He was worse than my primary care physician. Told me that my lack of Vitamin D has nothing to do with my thyroid. And although my full head of hair is now thin, sparse, and not regenerating he told me that my thyroid has nothing to do with it. It’s an aging process. He did a scan that showed my thyroid looks like swiss cheese from the effects of Hashimoto’s. But my labs show everything is normal.
I appreciate the information you offer. I’m really not crazy like the medical professionals have made me feel. But I don’t know how to find a doctor who knows how to treat Hashimoto’s. I have many symptoms that are not being addressed. Help?!?
Eileen, I am sorry no one has listened 🙁 endos for the most part suck. I go to an integrative dr and he is wonderful. I had to wade through many endos for many years to get to him.
I pray that you find a dr that will listen
What is an integrative Dr?
Look up The Institute for Functional Medicine. They list Integrative Medicine practitioners there. You can also just google Integrative Medicine for your particular zip code and some should come up. They utilize traditional medicine, as well as holistic therapies and are more likely to look for the cause of your illness, rather than just treating symptoms.