I have had a horrible year - blood test and symptoms last summer showed I was overmedicated (on 75mcg Levothyroxine + 20mcg Cytomel) so started stepping down on dose. Hyper symptoms continued, so my endo continued to step me down off meds. So as of today I am starting week #8 with ZERO med. During this step down time I did actually did have weeks where I felt good, then back to bad as my body was adjusting.
Now, I am feeling worse than ever every day. Just went to ER last week and was told I now have Tachycardia (rapid pulse) and I feel like total crap. Wondering if I didn't miss the "sweet spot" when coming down off meds - my last drop was from 50mcg Levothyroxine to 0. Recent blood shows hypo:
TSH: 4.32 (.4 - 4.5)
Free T4: 1.2 (.82 - 1.77)
Free T3: 2.9 (2.0 - 4.4)
Reverse T3: 18.4
(NOTE, blood test back in December swhowed TSH 2.23 after 8 weeks on 50 mcg Levothyroxine - and was having good and bad days)
My ferritin, Vit D, B12, iron - all very good.
Have recently had all these tests show normal:
Creatinine
Cortisol
Head scan
Chest xray
Heart is very good - EKC, cardio cath, stress test, etc.
Tons of other blood work all normal.
Endo wants to do Holtor Monitor next and decide if I need beta blockers. And then try a low dose of Levothyroxine again.
Any thoughts about estrogen/progesterone balance? I am 58 year old woman and other than this have been super healthy/fit.
I am on the verge of quitting the job I love of 35 years due to feeling so poorly. Any advice from you helpful folks? Could I just need a little Levothyroine or T3 to get my numbers a little closer to optimal?
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LynnB79
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I can sympathise as I have been through something very similar. I also over-medicated and had heart issues. Cutting back and back for over 6 weeks, the problems continued, and I had to come right off the meds for a few weeks.
It was as if the overdose made my heart really sensitive to Levo. I had some bouts of tachycardia and palpitations. Having Hashis was no help - over-medicating seemed to lead to a number of flares.
I had a range of cardiology tests - the holter, echo and stress test - all fine.
I had to slowly reintroduce the Levo - even 25mcg a day started my heart off again with palpitations so I had to cut back to one a week and introduce one extra tablet every two-four weeks - as you can imagine, it has taken me many many months to work up to where I am now - 75mcg x6, 1x 100mcg. Every time I upped the dose, my heart would bang and clank about a bit then settle. I now have to go 5-6 weeks between the small increase as I am close to my optimum. I know 100mcg a day is too much (that sent me over the edge last time!) but 75mcg a day not enough.
There is light at the end of the tunnel. It has been a long journey for me - but I do feel so much better now - and you will too. You will get through this. I was fortunate enough to have an excellent private endo who has guided me through this, all the time convincing me he could get me well when I was in despair and impatient to be well.
MissG - thank you thank you so much. Just having someone who can relate is so comforting. What seems odd to me is I am now "under" medicated with a 4.5 TSH, but I don't know that my symptoms are that much different than when I was over medicated. Some subtle things maybe, but I know I just feel BAD. I have a super sensitive system when it comes to meds so yes I will absolutely go very very slow. Had ALL the heart tests done due to this high pulse rate and my heart is super healthy. Endo now wants to do the Holter Monitor next week and see how that goes if needed I will start with a beta blocker. And a VERY small doze of Levothyroxine or T3 - we need to discuss that yet.
Thank you again for helping me feel like I am not ready to crawl under a rock!
I was just the same. My heart would not calm down until I was off the Levo for some time. When I had a blood test after 6 weeks, my levels were dreadful - TSH had shot to 60 - though I didn’t feel too bad. Then as soon as I took some Levo the palpitations started again - hence the long journey.
My biggest worry now I’m close to optimal is that I’ll go over the top again and be back to square one - that’s why I’m being extra cautious in raising the dose any further.
You will get there. Thyroid treatment needs patience. Those who quickly get it right are very lucky. 🤸🏿♀️
Hi I hoe you don't mind me butting in but I was so much like you so a friend told me about HRT from wellsprings-health.com it is all natural it works have been on it for 5 years and 50 of Thyroid meds .I can only say try it and see .
Catnap thank you for the reply I have heard of women who had to balance their estrogen at the same time to make it all work. I have noted your post and we'll check it out thank you so much!
It is not often that I feel compelled to respond to comments. Your message is like a Godsend, (almost literally, as I was praying for Divine guidance as a result of the desperation this condition and the treatment for it have wrought).
I am grateful, beyond words, that you took the time to describe a scenario so close to my own.
When I found this site I was so hopeful. Two plus years later, having read countless responses from people who, by their own admission, are not optimally treated, yet insist that the answer to every symptom is a dosage increase, I have grown weary.
I have greatly decreased my own dose, with some oversight by a naturopath doctor, and yet I am still unwell.
So confusing, overlapping, and ambiguous have my symptoms been that I doubted my own experience as I decreased my dose, lower and lower, only to continue to feel overmedicated on 25mcg t4 per day; and even every other day.
As of this moment, I have taken 25mcg, last week and 25mcg this week. Of course I am experiencing myriad symptoms which are impossible to override or ignore.
If my story helps someone a little then that is what this site is all about so I’m so pleased it has given you hope. It has taken me 20 months of slow increases to get on to 75mcg a day and at times I was in despair, but I am getting there now and loads loads better. It is a long journey for some of us.
The cardiology tests were a great help as they told me my heart was healthy and I had nothing to fear.
My GP never warned me about the close relationship between the thyroid and the heart. It was my endo who saved me and recognised my increased sensitivity to the meds.
When my heart thumps about, I think of the lines from the Sylvia Plath poem ‘Tulips’:
When introducing the thyroid meds again try doing a few things differently.
If using T4 only take T4 in 25mcg doses. Fine if just using 25 per day, but if you go up to 50 per day still dose in 2 x 25. Spreading the T4 out can work better and it is not the bodies way to just take a big dose of T4 in one go.
When doing T4 increases don't go up by 25mcg, but 12.5mcg. This means alternating doses on a two day system eg 25/50 or 50/75.
If using T3 start with the smallest T3 dose you can cut a tablet. This means using a stanley blade usually and the smallest i can do is a 1/8th size. So this usually means the strength is approx 3mcg if using a 25mcg tablet.
T3 is very powerful and very few people ever start on a really small dose. The smallest is usually 6.25mcg. Ideally we would start on 1mcg, but they don't make this size tablet.
I am an advocate of Dr Blanchards thyroid treatment system where he uses very small doses of T3 in relation to T4. I have found it works well for me and if i use some T3 a 3mcg dose is way more than enough and really works well.
Finally, see reductions in thyroid meds as a useful way to test out if you really are on the correct dose. Going down can be exactly what you need. Over time i have reduced down my meds to be on 112.5 T4 and maybe 3mcg T3. At one time i was on 150 T4 and 50 T3. Was the bigger dose more effective ? Not at all.
Marsaday - thank you for taking time to give me your insight. I cannot tell you how much it helps. I have had so many tests in the last 2 weeks (head scan, chest xray, upper/lower scope, substantial blood tests, heart echo, stress, EKG - All perfectly NORMAL). Endo wants to do the Holter Monitor and see how that goes. Depending on results start back w a beta blocker and a very, very small dose of T4 and or T3 - we still have to discuss the meds. But yes - it will be the smallest dose possible to start. I appreciate your suggestions on re-introducing the meds and have noted them as well. I love this forum and how everyone is so sharing and helpful to those of us who are really down and out with this condition.
Dr. Blanchard's book changed my life (and I've read many books on thyroid). I started following his protocol about 3 months ago and am having great success. I can't take Cytomel (too harsh in any dose) so I added 1/4 grain of NDT to my levo. This combo has made a huge difference.
Ah yes of course. Seems there are very few of us who have actually tried using very small T3 amounts.
I agree his book is the best thyroid read i have come across as well. So much original and useful information. I don't think he is alive anymore sadly.
marsaday your *Spot On* . In addition I would suggest splitting your T4 AM and PM . I find that it works well for me and many others on T4 too .
It's a Big Loss for the thyroid community with the loss of Dr Blanchard . His Brilliance and his Grip of thyroid meds and it's *Functional Approach* to Optimize thyroid patients is *Like No Other* .
ok, so your FT3 was a little over-range. But all it needed, probably, was a reduction of 1/4 tablet of T3, and it would have come down into range again. You didn't need to keep reducing until you made yourself hypo.
Greygoose thank you - you are so right. It's a test of patience for sure and my body is ultra sensitive to any kind of meds. I'm the person who takes 1/4 of a tylenol PM so adjustments are hard for me.
marsaday - yes! Hindsight is 20/20 - I just did not know and I don't think the functional doc I was seeing then actually knew either. I remember when he said to add 20mcg of T3 I knew I probably should have cut back on T4 but didn't and I think that sent me in a tailspin! You can bet when I go to increase after the holter monitor next week it will be in the tiniest increments.
Hi. I haven’t had your symptoms but many others and struggling the past 12 months with Levothyroxine. My Dr has recently changed my medication to liquid levothyroxine. The liquid doesn’t have any excipients and mine is also sugar and colorants free. The main thing is that you can dose in small quantities easily as you draw it from the bottle by a syringe. You can dose as little as 5 or 10. It’s worth a try to take it gradually up to your required level. It’s more expensive than tablet form. My GP was fine about it.
Hope you’re ok and stable today. I do feel for you. I’m just 60 and have had lots of problems the past 12 months with my thyroid after 12 years of being sort of ok.
Pam thank you so much for your kind words. I did not realize the medicine came in liquid form so have noted that and will discuss with doctor. I hope you have a good day too!
Hi. I didn’t know either until 4 weeks ago after 12 years on tablets. I too am on a small dose of 75mcg. I am very sensitive to dose changes. Going up or down by 25mcg is 33% which is too much of a change. Liquid you can dose in 10’sor whatever you like.
Currently in the similar battle, I was like a metronome swingong backwards n forwards over the past few months since GP wrongly changed my dose to too much. Ive got a 'fit note' from GP to reduce my days at work to help rather than be off sick continuiosly. Im still having some difficult times, im nearly reaching the 8 weeks of trying 100 and 125 alternate days.
Still not feeling sweet n wondering if it still too high.
The liquid form sounds interesting as im halving 50 pills cutting to get the 25s and maybe I need another inbetween dose and im sensitive to some of the nasties in the pills.
Just got to remember we are not alone, we will keep going on this path, its good we are finding out about our health and im defiantly looking into a healthier lifestyle regarding dropping a day at work forever and reducing lifes stresses. I too have thought about packing in my Job which ive worked so hard to get to. Im 35 so packing in work isnt feesable so got soilder on.
Thanks for your message as ive had some darker days recently cos of all symptoms up n down.
Bittersweet thank you thank you for your kind words. It's a tremendous help and comfort hearing other people offer support and sympathy because they know what it's like to feel this crappie for too many days in a row! You take care of yourself too and stay strong always!
Did you have your thyroid removed or RAI? I'm not sure from what you have noted. I had RAI for Graves disease in 2017 and am still not on the correct dosage. I did stop hair loss, arrythmia, etc on 75 mcg Levoxyl 4x/week and 88 mcg 3x/week but then got pneumonia and did not take my Levoxyl correctly and now back to hypo symptoms again. I hate not having a thyroid and I do know what you are going through. Hugs.
Sugg I do have a thyroid! I was great for 5 years and then ended up getting overmedicated. I started coming down off the overmedication in the last few months have been really bad very fatigued aches pains losing hair and heart racing. I have been on no medication for 7 weeks and my blood test now shows I have swung back slightly hypo. My body has been through a lot jerking it around with the medicine! Thank you for your reply and good luck to you it is such a struggle!
Hi, I had a similar thing happen to me a few years ago. Over the last 20 years I have been on and off meds for Hashimoto’s. Three years ago, My doctor increased my dose from 50 to 75mcg and after a few days my heart started having several PVCs per minute and chronic tachycardia. My bloods were all “normal” but my doctor stopped my levothyroxine and retested every few weeks. Bloods remained normal and yet I had every symptom of too much hormone even after months with no levothyroxine. I lost weight, couldn’t sleep, felt nauseated, sinus tachycardia, constant PVCs, etc. I had my heart checked out and it was normal. I was tested for hormones, adrenal tumors, sarcoid, etc-all normal. I didn’t take any medication except magnesium for the PVCs. My cardiologist diagnosed me with Postural Orthostatic Tachycardia so I started high salt, compression garments, increased water, etc. I have very low blood pressure so didn’t take betablockers which would help tachycardia and PVCs. After 6 months symptoms of “too much” hormone went away and my thyroid revealed “subclinical” thyroiditis. So I did not go back on meds yet started all the hypo issues again. Yearly nodules continued to grow and more cropped up as well as more symptoms with a higher “subclinical” tsh and low-normal free T4 & T3 so she suggested a trial. I started meds last May, 1/2 of 25mcg (12.5mcg) daily. My PVCs which were constant these last few years, disappeared after a few weeks on the levothyroxine. Increased dose in August, increased in October and another increase in December. I still feel hypo at 50 mcg but I am thrilled the PVCs and tachycardia have not been an issue. My doctor thinks that the Hashimoto’s was swinging hyper during that bad time and we just couldn’t catch it in the blood results. I’m thinking it is more likely due to the POTs/dysautonomia. She did test for Graves antibodies a year after the bad spell and they were “fine” at 99%. Perhaps they were higher when I was symptomatic? She wasn’t sure but said people can have both Graves and Hashimoto’s. I am now in a hypo spell so watching for symptoms of too much with each dose increase until my bloods are optimal. I think her goal is TSH around 3 which seems too high to me. She tests my free T4 & T3 but isn’t concerned where they are in the normal range. So getting everything checked out-heart,hormones, other issues-will give you peace of mind. Hopefully you can slowly introduce the levothyroxine back and start to feel better. Good luck!
Serenapuff I cannot tell you how much I appreciate your message it sounds like we have been down a similar road and hearing your words are incredibly comforting. I am just going into my 8th week of no medicine and my symptoms have not improved but I read your post and others that say it just takes a long time, even months, to work out the overmedication. I have fast heart rate, looser stools, just feel really weak and yucky, dry mouth. In fact I feel like I'm fighting the overmedication but now hypo has crept in as well. Does that sound familiar? Just feel really crappie some days better than others. I am super sensitive to medicine and it makes sense even though my blood test didn't show extreme overmedication that that's what happened to me. Also given the fact that I am 8 weeks with no medicine and my TSH is only 4.5 just barely on the high-end tells me I don't need much anyway! So next week I get the Holter monitor and we go from there. You really have no idea how much your words ease my mind knowing someone has been through something very similar.
Your symptoms are exactly as I remember-including the dry mouth. Hopefully you will be turning the corner soon. I think it helped me to rule out sinister things and know my heart was structurally normal and healthy despite my symptoms. I hope you get some reassurance with the holter. I would definitely ask to have your electrolytes checked- calcium, magnesium, potassium. Even though my bloods were normal, my cardiologist agreed to supplemental magnesium which I found very helpful. Also wondering if they did an ultrasound to make sure you don’t have an active nodule?
Yes all those things (electrolytes checked- calcium, magnesium, potassium) and countless others have been checked in my blood multiple times and all normal. Had only 1 nodule on my thyroid that actually disappeared last year as I was turning hyper (looking back I didn't realize my symptoms were hyper until it finally barely showed in my blood so I was probably overmedicated close to a year). So thyroid scan is good too. Extensive heart tests all normal. Brain scan, chest xray - normal. It is very reassuring to have all the other big things check out as normal. Now to wait for this overmedication to clear and then slowly re-introduce T4 and or T3 in tiny amounts as needed (if needed). I hope I don't go 6 months like you did - that is a long long time to feel so poorly! So glad you are on the right track now and it sounds like you have a good endo to help which is so important in critical cases like ours. So glad you have the worst behind you!
Serenapuff - I have one more question and I am afraid to ask it! Did you feel bad all of the 6 months - or did you find days where you would be better?
Things slowly improved for sure! The really hyper like symptoms lasted a couple of months but didn’t interfere with my life though I felt badly. By 6 months I started back on hypo symptoms but was resisting the idea of going back on meds thinking I could get by-which I did for three years-until last May. I was willing to start a small dose to see if it helped. I am also in the midst of perimenopause and other issues which add to my symptoms I’m sure. I remained active and healthy during all of it. Try to control the things you can-diet, sleep, exercise etc. You will know when you need to try the meds again!
Serenapuff I've reread your messages several times just taking it in. I have another question. So during the six months when you had hyper symptoms your blood was showing in range is that correct? And at what point did your blood show hypo again was it after that 6-month.?
I had hyper symptoms but my bloods never showed any signs of hyperthyroidism so my endocrinologist just watched it. In fact my bloods looked like that of a healthy person which they haven’t been for 20 years. Even when I had the most hyper symptoms-my bloods were normal-never reflecting hyperthyroidism. I have since learned that Hashimotos can give symptoms that feel both hyper and hypo. It is a mystery to me. My endocrinologist wanted to restart the meds due to the nodule growth and my hypolike symptoms but my TSH was ranging above normal (hypo) though below 10. My free T4 was the lowest in the normal range. She defines me as subclinical and doesn’t know if the meds will help my symptoms but hoped they might help the growth of nodules. My TSH slowly crept up to hypo over the last couple of years with increased symptoms but remains subclinical. In hindsight, I would have asked to restart meds much earlier as I think it would have helped my POTS symptoms.
Also, did your endo test you for Graves antibodies? My endo said you can have both Hashimotos and Graves though rare. Have you asked to get a Sjogren’s antibody test?
Yes doc did test for Graves antibodies as well as Sjogrins. And so much other stuff! All normal.
It is just amazing we can go sooo hyper but it just does not show in blood test. My first symptoms were heart palps and dry mouth and zero energy that would come and go for several months. Then eventually pretty constant. I am with a new doc since going hyper who is great and taking a very similar approach to what your doctor did w you. Actually saw him today and he has just a few more tests to run - cortisol etc. but he thinks this is all from being overmedicated and told me it could take 6 months or longer to work through... like you. One thing is for sure we are both well aware now what to watch for! It has really been comforting hearing your details and knowing you came through. Have a good weekend Serenapuff!
I have long, similar story that I won't go into, but as someone else mentioned- check out Dr. Blanchard's book, "The Functional Approach to Treating Hypothyroidism." I've read a stack of books on treating hypothyroid and this one blew my mind- goes against everything I thought I knew about taking t3 with t4. He discusses how so many are overdosed on t3 and how just a tiny dose will give the most benefit (he starts with only about 2% added to levo). NDT has about 20 %!
I am now taking t4 with a tiny dose of NDT (Nature thyroid) and finally starting to feel better -I still have a way to go but hyper symptoms and chronic chest pain is gone. I will continue to increase very slowly -(12.5 mcg t4 a few days a week)
I discovered that I cannot take even the smallest dose of Cytomel - it gave me chronic chest pain along with many hyper symptoms- the t3 in NDT is just not as harsh- I never would have thought that I could mix Levo with NDT but it is working out great for me. Wish you the best-hope you find a solution.
Do you take 1\4 grain at once without having symptoms of overdosing? I'm asking because Dr. Blanchard recommended using tiny doses of T3 in slow-release form
yes, I know he recommended the slow release but I just decided to try this first- I do take it all at once but I think I'm going to start splitting the dose because I get so sleepy in the afternoon-
Hello jjyankee . You bought up many great points with DR Blanchard . Do you have your thyroids in tact ? What is your T4 dose ? There are some on this community that where patients of Dr Blanchard's . I wanted to have a visit with him even though he was about 3 1/2 hours away from my home . But shortly after I heard of his passing .I was very sorry to hear it .
I split my NDT doses 3x/day . I prefer being on NDT instead of the compounded NDT . NDT works better for me this way . I had TT and according to Dr Blanchard he gives a bit more leeway's with the NDT for the T3 for patients that had TT . I think up to 3 mcg . He writes in his book that no one needs 5 mcg T3 . There are some who do need a lot more NDT/T3 and I respect that too . We are all different with different needs . It's not one size fits all . I'm one that needs a tiny amount of NDT for my T3 mix with my higher dose T4 . I felt lethargic brain drunk tired and had aches/pain and edginess ,weight gain with higher doses of NDT and lower T4 even though my labs where pretty good . On paper I should have felt great but in reality I felt awful . I realized that Dr Blanchard's theory is what works for me the best .
Yes , my thyroid is intact. I had to stop all meds for a few weeks and start from scratch at a super low dose. I’m currently on 50 levo and 1/4 grain of NDT. It’s taken months to get to this point- Been on this dose for 4 weeks; I Need to increase but will wait to see next lab work in a few weeks. I can only tolerate the tiniest increases so this is a long process-
I’m in New England - 2 hours north of Boston so I wasn’t too far from Dr. Blanchard, but alas- I found him too late 😢
Thank You for your kind reply . You where really right in the back yard of Dr Blanchard . I know that their is a Dr that practices the same way as Dr Blanchard . I think they kind of took over . I'm in NY it would have been a nice long trip about 3 1/2 hours . Trust me I would have taken the trip . The only part I don't like is the compounding NDT . Slow and steady wins the race . I'm glad your on the way to mend .
Jjyankee I greatly appreciate your message and I'm just now on Amazon ordering the book. What you say makes great sense I think there are a lot of us suffering some terribly because we have been given too much medicine. I did not know last summer what to watch for by the time I realized something was really wrong I was too far gone! As I've come down off medicine I've had some perfectly normal weeks and some horrendous weeks as my body adjust and I guess manages to hit a sweet spot once in awhile. And I will say having all the medical testing done was all normal results has given me peace of mind. Thank you again for the advice on the book!
You are most welcome- I really hope it helps you. I'd read a bunch of other books that all advocated doses of t3 that made me sooooo sick- Also could not take NDT because the ratio of t/4: t3 was just too high (80/20).
Reading his book made me go AHA! So this is what's going on with me! It finally made so much sense-
These are very powerful hormones for anybody to be taking, but some of us are super sensitive to even the smallest doses and changes. Feel free to PM me after you read it- I'd be interested to know what you think.
jjyankee - I got through chapter 1 last night and very very easy to read/follow. Will get back with you when I'm done. Perfect timing for me to be reading this as I wait for the overmedication to clear and will at some point be starting meds again this will help me understand how much!
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Should I or shouldn't I decrease Levothyroxine?
Hyperthyroid or not?
Is dose wrong or am I going mad?
Am I under medicated? 
