Being hyper but elevated tsh?

hi laura,

i recently was prescribed a thyroid medicine that caused a ton of symptoms that has been a true nightmare.. i was trusting the doctor when it was perscribed to me however it caused me to be over medicated. it has been almost 2 months completely off it and i am still having a ton of side effects including heart palpitations, although not as bad as they were initially. how are you feeling now?

Hi Michelle, I'm not doing great but not nearly as bad as I was when I was on a very high dose of Armour (levo equivalent 150mcg) and now I'm down to 75mcg. My endo recently did TSH and I'm at 3.04. She says my range is good but how in the world was my TSH when I was on 100-150mcg ranging from 2-4 and now I'm in 75mcg and it's still in 3.04?! I feel like labwork doesn't illustrate when someone has been over medicated very well and just isn't reliable. Especially looking at only TSH. The best I can guess in regards to the weird symptomology from what I've read is over medication of thyroid can cause an increase in thyroid hormone receptors and histamine receptors. I think when we cut back on the dose there is some amount of withdrawal due to the over abundance of receptors that were created during high thyroid hormone exposure. So you might very well be working down to your correct dose but feel hypo because there is now less hormone to fill the receptors but you don't need that many receptors activated (hence the hyper symptoms). I also think that whenever our bodies fluctuate/increase thyroid hormone whether through sex hormone cycles such as estrogen or histamine fluctuations (via diet, hormones, or environment) that hyper symptoms flare up drastically until the body acclimates to lower thyroid receptors and thyroid hormone exposure. I'm doing my best to remember my bio and anatomy schooling days and make sense of the literature but there's just not a lot of info out there on being overmedicated. I think it's a fine balance to even out and takes a very, very long time unfortunately!

hi laura!

thanks for the info, i am glad you are doing better and it seems like you know a lot of good info. did you or do you ever struggle to sleep? i am having such a hard time and its really taking a tool. i was on armour as well and the hyper side effects are just awful, especially the fluctuations.

also, what was your experience like on high dose armour?

Hi Michelle! Oh yes, I had HORRIBLE times sleeping. I still struggle with periodic bouts of insomnia but it is getting and has gotten much, much better. When I was at my worst 6 months ago I had 5 nights of no sleep. I was losing it...emotionally, physically. It was awful. When I was over medicated I had constant heart palpitations that would start around 8PM and go on until about 5AM non stop. Like every 5th beat. I went to the emergency room because they got so severe and went on for 18 hours. Of course, nothing was found by the ER physician and I was discharged home. (I still can't believe they never suspected thyroid.) I can't remember everything I've read but I remember reading something along the lines that T4 gets converted to T3 in the late night hours, or thyroid hormone is produced in the late night. Something with the thyroid ramping up at night! (Interesting tidbit...even Chinese medicine indicates thyroid problems if you have symptoms in the 9PM to midnight hours!) The all night insomnia has gone away. Now what I struggle with is bizarre muscle flinching/twitching right as I start to fall asleep and it'll shock my body awake so I have trouble falling back asleep initially. It's very similar to hypnic jerks if you've ever read about those but much more intense. Almost like a whole body flinch/convulsion. I came across another medical journal article that found there is a thyroid release right at sleep onset and believe even regular "falling sensations" and jerks that people experience when falling asleep could be thyroid related. It's probably the oddest symptoms I've experienced in this whole journey but not nearly as bothersome as all the other symptoms. Also, if you have bouts of insomnia it could also be related to hormonal fluctuations and thyroid. They have a close relationship and for the longest before realizing I was over medicated, I thought I had a hormone imbalance since symptoms would flare up at certain times in the menstrual cycle. Hang in there as best you can! It will get better but it's so hard to tell when you're in the thick of it with symptoms. It takes a very long time for the body to acclimate to the right dose after coming down from over exposure. Unfortunately, the "withdrawal" (I'm not sure if that's actually what's happening but the best word I can describe it) symptoms can be similar to overmedication.

Hi Michelle, all of my symptoms started when I was on Armour. A little backstory...I had been on Armour for almost 8 years with no problems. I went gluten free the year before and had no idea doing so can either help the thyroid improve functioning or you can start absorbing more since your gut is healed. Unfortunately what happened is my lab work never illustrated being over medicated. If anything it showed my TSH a little hypo (3.9) so they upped my dose from 60mcg to 90mcg of Armour (Equivalent to 150mcg levo). Over the months my symptoms got worse: Heart palpitations being the most prevalent, insomnia, frequent urination at night, horrible tinnitus, itching, acne on my back, chest and neck, tightness in my head, easily sweating and hot, muscle weakness, anxiety, feeling of dread/doom, tremors, shaking. The list goes on. I read thyroid hormone affects every major organ and cell in the body....I most certainly believe it now. An endo then switched me to 100mcg of levo and I still felt horrible. Then a new doctor wanted me on NP thyroid which is similar to Armour where it is NDT and contains T3. This was the worst I've ever felt in my life. All of the symptoms above but with full blown panic attacks, crying, labile mood. My mental health deteriorated and I'm usually a complacent happy person. Everyone close to me saw the change. That was the only time my labs ever showed truly hyper. My free T3 was 4.7 (I think cutoff was 4.) I begged to be taken off and put back on levo. I came across info on a webpage regarding T3 pooling and did all the work to make sure my cortisol/adrenals were good and iron levels. Back on levo I was a little better but all the symptoms still persisted. Later in the year I went off bioidentical progesterone that a wellness doctor had me on (and I totally didn't need! She too missed that I was overmedicated and told me I was in perimenopause...I'm in my late 30s). Once I went off the progesterone all my hyper symptoms came too a HUGE increase. Hormonal fluctuations absolutely do affect thyroid and I've read progesterone can occupy or lower thyroid so I think taking it had helped balance being overmedicated so when I came off of it, everything amplified. I was a mess! Once I started lowering the dose through the help of an endo who saw based on height and weight I was likely over medicated, my symptoms have very slowly been improving. I started decreasing in March. Be sure to go very slow with it because the withdrawal is tough!

wow! thanks so much for sharing that info as right now I feel like i am loosing it emotionally especially when I go 5 or so days with literally no sleep! it is so scary and i am an emotional wreck over it but hearing your story makes me feel so much better. how long did it take for to notice a difference with the sleep? how many months did you struggle with the horrible insomnia? I am about two months out of discontinuation of armour and sometimes i feel it getting worse. there are some nights i can get an hour or so.. sometimes i dont fall asleep until 4am... or i go many consecutive days without. did you notice feeling very wired/not tired the next day when you werent getting sleep? like despite not getting sleep you werent tired the next day? or having a racing of mind at all? it has been very strange as i was very healthy and active -- not on any meds before all of this hellish storm... you are so right about being in the thick if symptoms.. trying to stay hopeful as i know this cannot last forever. i truly believe our bodies want to figure things out. I am so glad you are in this group--- makes sense now why the heart palps are worse in the evening! the very first time i realized i was over medicated i woke up from sleep with a racing heart and called my on call doctor-- who just told me your thyroid is fine based off lab work i had that day. super frustarting that doctors dont take these symptoms or medications seriously! it has wrecked my life in so many ways. i pray everyday this insomnia gets better!

the emotional tool it takes is tough! i have felt very emotional as well. crying all the time, impending doom. i think i am going to get my adrenals checked as well. i have been nausea and i was not over weight when i started this medicine-- naturally skinny. i hope this can all get figured out.. i am anticipating a long journey to recovery from what i heard. i am not on any thyroid medicine and had my antibodies tested which came back fine. did you notice your pulse being faster too with the nightly heart palps?

Hi Michelle! Oh I'm just so sorry you're going through this nightmare. I truly understand how you're feeling. Did you completely discontinue all thyroid medication (whether T4 only or NDT with T3/T4)? If you discontinued all thyroid medication just be careful. There's another person in these thyroid forums who went through what we've been going through and she went off all medication because her labwork came back fine at each decreasing dose so the doc determined she didn't need any at all. Once again the lab work didn't seem to accurately reflect what was going on in her body and later found out she did indeed need some medication. Starting the med again really caused her symptoms to flare up (like she became very sensitive to the medication) until she finally reached the correct dose. I've read any decrease/increase in meds can cause some flares that takes weeks to even out...even if you're on the correct dose. That's where I've struggled so much is maintaining patience when on a new (lower) dose because I get such funky symptoms that I freak out and try to go even lower. I've finally learned to just stay with a dose for 8 weeks before making any rash decisions/begging my MD to change doses! I think a lot of the thyroid related symptoms have to do with histamine as well. If you look through my search history you'll find some of my posts that I've learned about the histamine receptors being affected by over medication. There are 4 different types of histamine receptors with each type localized to certain functions areas of the body including the heart, GI system, etc. I believe this is what causes extreme itching, heart palps, nausea when over medication. But it's just a guess! I think this is where the struggle comes in...too much medication produces more histamine/thyroid receptors so a person becomes incredibly sensitive to anything increasing histamines (i.e. aged meats, cheeses, spinach, wine, allergy season) but then if you decrease thyroid hormone too much your body over produces histamine so you get stuck in a really bad state of too much histamine in the body along with an abundance of receptors! Once again, this is all from pulling together different medical journal articles and blogs. I don't think it's an exact science that is known or understood yet. It might help you though as you re-calibrate to monitor histamine producing things. Also estrogen can increase histamine which is why I think thyroid symptoms get worse during certain parts of the menstrual cycle! Just know you will get better with time. At least now you understand what is likely the problem for your. The two years when no one could figure out what was wrong with me is still the worst place I've ever been mentally. It is good though to see if your doctor can follow up on some additional lab work to rule out any other contributing factors. Mine did lab work for adrenal function and adrenal tumors (pheochromocytoma). If you look in my post history you will see some comments I've shared regarding how thyroid affects epinephrine/adrenaline!

Yes, my heart would race so much, especially at night! I didn't get over 90 BPM but I've read that a lot of others typically will if over medicated. My resting pulse is usually pretty low to start with so that might be why. What I would experience was a pounding heart and of course the irregular heartbeat. A cardiologist put me on beta blockers despite not finding any other etiology to the heart palps but even then beta blockers never helped so I went off of them! Of course, now I know why! I've read beta blockers aren't very good at helping with heart irregularities if they're thyroid related. It used to be so terrible though. As soon as about 8PM would hit all the hyper symptoms would really become prevalent. I had to stop reading with my little kiddo at night or watching cartoons before bed because I was shaking and panicked so bad. It broke my heart. But I assure you Michelle, if your symptoms are indeed from being over medicated you will eventually, albeit slowly, start to feel better. It will come in waves but suddenly there's two good days in a row, then three, and all of the sudden more days without symptoms than with. Hang in there and feel free to ask me any questions of my experience. I'll happily share all that I can!

Hi Michelle, I meant to add yes, I had nausea as well when over medicated in addition to horrible heartburn! It was so bad I even went to a GI specialist and they did an upper GI. I'm telling you, I've been through it all before figuring out I was over medicated! I believe this goes back to the whole over abundance of histamine receptors created when over medicated on thyroid meds. There are histamine receptors in your GI tract/stomach.

yes i am also having the GI issues... did you have loose stools/diarreah? there are times i was so sick to my stomach i didnt want to eat but forced myself too because i did not want to lose more weight. i only took the medication for 3 weeks! its crazy what too much thyroid medicine will do... rocked my life in a matter if 3 weeks. did you have a dry mouth and eyes too?

Hi Laura,

i did discontinue all thyroid meds. i never was on any before this experience, my obgyn was watching my tsh and it kept increasing. it was 3.2, then 3.5, then 3.9, then 4.04, then 4.12. it kept increasing and she said that TSH should be around 2.0-2.5 especially if you thinking about starting a family, which my husband and I were. that is when she said she likes to prescribe armour thyroid and to start at a low dose of 15mg, and then in two weeks increase to 30mg, then in two weeks increase to 45mg. i was on 15mg for like 3 weeks and took a few 30mg but that is when things started getting out of control and i was having all these symptoms. my obgyn told me i can discontinue the medication, but my tsh may still be too high. i discontinued the medicine because i was feeling terrible. she also said if you are still having side effects to call your PCP. so i did a few weeks ago and he did labs where my TSH came back at 3.5. my obgyn also just did labs on the 18th again and my Tsh was still at 3.5. of course i am still having all these crazy side effects. i am so scared to try thyroid medicine again. if i need it in the future then i think i will try T4 only. T3 medicine is just too much for me. as we know, it is going to take my body some time to wind down from the armour but as the days go on i am noticing that symptoms are not getting worse so i feel that is a good step. everyone has different opinions on what tsh levels should be treated and how they should be treated which is tricky. when i saw my PCP he said my TSH has been fine over the years. .. so who knows!

also Laura, i know you said 6 months ago you were at your worst. how many months were you dealing with the horrible insomnia?

Hi Michelle, Yes I had dry mouth and was constantly chugging water. Of course, that could be what contributed to the frequent urination, especially at night, but I've read loose stools and frequent urination are side effects of being hyper. I think it has a lot to do with the increase in metabolism seen with hyperthyroidism. Everything just goes through you quickly! I did have loose, frequent stools but I don't think as bad as some people experience. (That is a common symptom with hyperthyroidism even though my doctor didn't think so...but it's all over the internet if you search hyperthyroid symptoms!) In regards to the insomnia, I initially experienced it in episodes that I tracked to correspond with certain times of the menstrual cycle. This is what led me to think I initially had a hormone problem not an over medication of thyroid meds problem. That went on for a year and then it gradually became most nights. It was terrible!! So I would say total I experienced insomnia for two years (makes you wonder how I made it through!). Once I figured out more recently that I was likely over medicated and began decreasing, the insomnia slowly faded. It does get better, it's just a slow, finicky healing process. I want to say it was a month or two before I started getting more hours of sleep but then I had that weird muscle twitching thing that would shock me awake and take me a few hours to get back to bed but at least I would sleep. It's been about 3 months since I began decreasing my meds and I'm doing great with minimal insomnia! Every now and then, once again related to menstrual cycle fluctuations, I'll get a night or so of rough sleep but NOTHING like before. I do still get the weird muscle twitching from time to time but it's decreasing in frequency and at least I can eventually fall asleep after that. Just remember it's a slow process but there will be a light at the end of the tunnel! Also, as a side note, I found sleeping at an incline or sitting up helped with the pounding heart and muscle twitching. It was a sad two years of sleeping on the couch. Hang in there Michelle, it will get better!

wow two years if that! so sorry you had to go through that. it takes a huge tool mentally! were there some nights you only got a few hours? did you ever take anything or just push through it? would you feel tired and just not able to sleep?

Hi Michelle, Yes there are so many different opinions out there regarding TSH and it's hard to get a grasp on what really is the answer since we're all so unique in our thyroid functioning! From what I've read I do think having a TSH below 2.5 is optimal for those with hypothyroidism. I've also read how the thyroid needs to be functioning well for fertility purposes. In fact, low thyroid functioning (high TSH) can be impactful on fetal development! All that being said though, your levels to start with really weren't high in my opinion (Which I am by no means a doctor! Lol). Mine have gotten as high as TSH of 75 for some comparison! I totally understand her reasoning but I think this is a case where unique chemistry exists for each of us. There's an optimal thyroid range for a reason! There's a lot of reasons T3 meds can be difficult to adjust to such as poor adrenal functioning and low iron. Many like them because they don't convert T4 to T3 well so NDTs with T3 in it are very beneficial to them and they feel so much better. This may not be the case with you and this is why I wish all doctors would do a full thyroid panel (TSH, FT4, FT3 and the thyroid antibody test for autoimmune thyroid TPO and Tg). It's possible later down the line you develop Hashimoto's thyroid which is the autoimmune hypothyroidism. (Most hypothyroidism is this type, not to worry!) The hard thing with Hashimotos is it seems to flare up and I think part of my problem is I've vacillated over the years of going hypo and hyper even though most endos don't believe that's possible to swing between the two, but enough patients have struggled with this! Going gluten free is incredibly helpful for autoimmune thyroid issues (whether Hashi or Graves disease). I sincerely think that's why going gluten free caused my thyroid meds to become too high...my thyroid started functioning a little again! The other helpful tip I can give you is should you decide to start a family have them watch your thyroid regularly. My TSH swung wildly after pregnancy and I was on a consistent dose the whole time. It is also not uncommon for women who had no pre-existing thyroid problems to develop some out of range thyroid labs after. It's just helpful to monitor!

Finally, after two years I got so bad I did try melatonin for sleep. It did help! It wasn't a miracle but it at least helped me fall asleep initially. I'm sure I could've sought out other prescription sleep aids such as ambien, etc but having worked in psychiatry I know those are helpful with initial sleep onset insomnia but don't necessarily help with late night waking insomnia. I would say the sleep problems with the heart palpitations and pounding heart were the side effects that took the greatest toll on me mentally and physically. Those were some very rough months! I understand so much the anxiety you are going through with the insomnia and over medication! It definitely will get better!

Also Michelle, I meant to add in regards to your TSH levels. If it helps to have an additional patient reference...mine is currently at 3.04 and I feel SO much better however 5-10 years ago I would be at 1.5 and felt great with no symptoms so who knows what TSH is really supposed to be to feel optimal. That's why I feel it depends on the person, the phase of life, the situation at the time, the diet of the person at the time, etc. So many variables!

hi Laura,

i definitely agree with that! i know i would rather be hypo then hyper just based on my exoerience. also, Different labs have different reference ranges... two labs my tsh was 3.5 and then one other lab my tsh was 2.32. i did have my t4, total t4, t3, total t3, reverse t3, and antibodies all came back fine and within normal ranges. i have been having them checked frequently since discontinuing the medication to see if over medication shows up in numbers. for a while i was overly nausea after about a month of discontinuing. but so far all my numbers have been fine, but i know there is a lot if over saturation in my cells because my mouth is still dry ... hoping that will subside in the ongoing weeks. this has truly been quite an experience and it is crazy to see how many people are over medicated. you never know what people are going through when you see them!

another thing my PCP said is that sometimes when people are over medicated and it shows in their numbers, they sometimes give antithyroid medicine. did your doctor ever mention this? i could not imagine putting another thyroid medicine in my body that may have a slew of other side effects on top of being hyper. just curios. it seems like a lot of doctors just tell people to cut back on medicine or discontinue?

I sure haven't heard of giving anti-thyroid medication for having been over medicated, but if I would've known that I was over medicated earlier and that that was an option, I certainly would've considered it! I'm with you though...at this point I don't want any unnecessary thyroid medication if I can just ride this out to calibrate to the lower dose I need! I hope you are slowly but surely starting to feel better! The dry mouth is awful. I experienced it more as perpetual thirst but luckily that symptom has mostly subsided.

michelle, you mentioned yiu took meds for 3 weeks, how long did it take you to feel normal after stopping the medication?

I feel all the things your have described. i took for 5 weeks, have been off 4 weeks, and i guess i expected to be normal by now. Hoping for some hope and insight.

hi laura!

i wanted to check in and see how you have been doing since we last spoke? are your symptoms better?

how are you doing since stopping meds?

Wow, Laura, I haven't been to any forums in ages, but your post was totally worth it.

Hope you continue posting. You just saved me from going completely mad: My TSH is up but doesn't match my symptoms and I thought I was going mad because the doctors say that I have to increase the dosage when I think that I am doing fine. I did increase out of fear of ending up without medical attention due to being a bad patient who does not listen. Now I am hyper (man am I hyper) and I got kicked out by my doctor anyway. Secondly, you gave me a new clue to why I have been suffering from problems with histamine intolerance in the past. After what you wrote, I hope I am not due for another phase of general itchiness and swelling up.

Thank you so much!

Hi Michelle,

thank you for your post. My TSH was at 60 but I hardly had any symptoms, I wasn't cold, pulse normal, weight normal etc. Before that my TSH was well above 10. Also without any of the typical symptoms. I think Hashimoto's and diet is a nightmare. I also noticed that my hormones went up and down while I was still eating gluten. It got a lot better after I went gluten-free. I also had problems with a hidden lactose intolerance. I stopped taking milk-products after I started suffering from histamine intolerance but at some point noticed that my vitamin supplements also contained lactose and also I wasn't paying attention to the hidden lactose you might find in various products. That might have hindered absorption requiring a dose adjustment, but now that I have eliminated all lactose from my diet, I think my intestines are slowly recovering. Sadly I only have a very spongy half of my thyroid left and I have to take levo in order to not turn into a cretin.

Went to the doctor today because he got me to up my levo and I now am hyper and feel terrible (wired but tired bordering on a panic attack). He didn't offer me any anti-thyroid meds. Instead he told me to not take any levo until I feel better, which according to him should be in about 3 days. In my experience it will take at least 10 days for things to get better. Should they get worse, I am considering A&E for the anti-thyroid meds.

The mistake I made apart from listening to a doctor who has no clue about elimination half-life is that I increased the dosage only six weeks after the last increment and despite feeling absolutely fine.

Now I will have to find a new doctor to write my prescriptions. Honestly, finding your post made me feel less abandoned. Well, I am not hoping for any medical help by any professional soon, but hearing from people that have similar experiences makes me feel less insane. I am sick and tired of being looked at like a complete nutcase when I mention that gluten has an effect on my thyroid hormone status.