I was overmedicated on synthroid (tsh 0.05, normal free T4).
I changed my dosage to the correct dosage 10 weeks ago and I am still having overmedicated symptoms and my tsh is now normal and has been for the last month.
I was on synthroid for YEARS and felt perfectly fine, no issues at all until I became overmedicated.
The biggest symptom is by far BRAIN FOG. Hard to focus, think, or concentrate.
Do I just need even MORE time to recover?
Most feel well with FT4 in top 3rd or range & FT3 the active thyroid hormone at least 50%
If the TSH is low is does not necessarily mean you are over replaced, to be over replaced your FT4 would be over range & or your FT3.
You need FT3 tested.
Stopping / restarting & adjusting is always going to take time to recover from.
Don’t make adjustments greater than 25mcg or quicker than 6 weekly.
I did a full trial off the meds and went hypo (tsh 224). Then went back on that SAME dosage as before which was previously fine, and it ended up being WAY too much. Now I am lowered to 125mcg (before was 200mcg). I was overmedicated for about 100 days.
Hello Johnfishman :
Do you have any reading for thyroid antibodies likely written as TPO or TgAB - as this reads as though you could be dealing with Hashimoto's which is a thyroid auto immune disease.
You can experience ' swings ' in hyper type symptoms - as your thyroid is being systematically attacked and disabled by this AI disease as when the swing swings back which it always does, your thyroid function is further compromised with you needing more rather than less thyroid hormone replacement in order to relieve the symptoms.
I can only go by my own experience..I was on Synthroid (200 mcg) for over 10 years with no problems and then I developed symptoms which I thought was related to my hypothyroidism. I went to a well known endocrinologist who erroneously stated that I was suffering from thyrotoxicosis and took me off Synthroid. We eventually found that I'd developed pernicious anemia and there was no need to have taken me off Synthroid. During that time I suffered needlessly(panic attacks, insomnia) I was off Synthroid for over a month. I found that when I restarted Synthroid, I had to start as a beginner; 50 mcg every 6 weeks, then blood work and increases of 25 mcg until symptoms dissipated. I got very frustrated at one point( I was up to 75 mcg) and decided to take the 200 mcg of Synthroid that I'd previously had and I had very severe symptoms of over medication...could barely function and ended up in the Emergency room. I believe this is what is happening to you. Wishing you the best.
exactly yes. Hope you are doing okay now. I was on 200mcg and then did that trial off, went hypo, then went back on that same dosage and it was at too much. Now my levels are stable but I still don’t feel normal. How long did it take to feel fine?
you should never come straight off thyroxine when you need thyroxine. Reduction and increases should be incremental as recovery can be delayed by being without any thyroid replacement. As others have stated you really need T3/T4 results. Just going by TSH alone is where madness lies. My TSH has been 0.03 and less for 20+ years and T3/T4 fine. Good luck!
I figured that out but can only go forward from here. I posted my results and journey once I stopped them. Do you have any insight?
Hey MightyMay . I am still dealing with this issue and you seem to be one those who has gone through it. I have it more explained in other posts, but the just of it is that I still cannot find my dose after overmedicaiton and my tsh is massively suppressed. Did this happen to you? How did you fix it and find you dose again?
Hello Johnfishman22...I have found from these good people on this site that ft4 and ft3 level are essential to test and that low ft3 is what causes symptoms. My ft3 is low normal, my ft4 is high normal and my tsh is suppressed. I have a conversion issue, so my endocrinologist has me on 5mcg of liothyronine(2X daily) and 175 mcg of Synthroid. I am trying to optimize my vitamin level(Vitamin D3 w/K2, B-Complex, Magnesium, Folate and Ferritin). I also have Pernicious Anemia and relieve B-12 injections bi-weekly. Right now, I'm trying to get my ft3 level and hopefully that will alleviate my symptoms of fatigue and symptom of not sleeping well. I'm not there yet, but I'm better. Fortunately, I have a great endocrinologist who is willing to step outside of the box and work with me. I wish you all the best in your healing.
Thank you. I hope t3 works for you, how long have you been on it? My next step is also 175mcg synthroid and then adding t3 with that
I have been on T3 for about 6 months. I started out 5mcg daily, now I'm on 5mcg twice daily. I'm hoping to see some positive results soon.
Essential to test vitamin D, folate, B12 and ferritin, especially after stopping replacement thyroid hormones
Vitamin levels crash when thyroid levels plummet
What vitamin supplements are you currently taking
my doctor tested all that and I was very deficient in vitamin D. I take 3000IU now, and it’s gone up but still lower than minimum reference range. I abruptly stopped synthroid which seems to have caused all this. Any others you recommend? Or just waiting this out?
What were B12, folate and ferritin results and ranges
Retest vitamin D again after 2-3 months
You may need higher dose to increase levels
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
vitamin B12 was 278 (ref 132-652)
Ferritin was 155 (ref 15-275)
Vitamin d: 63 (ref 75-250)
For some background:
I abruptly stopped synthroid 200mcg dosage, went hypo and went back on it.
I became overmedicated on that same dosage of 200mcg which was FINE for years.
I had to drop down to 125mcg and now my tsh and ft4 are normal but I still am very foggy and have fatigue. It’s been 10 weeks on 125mcg now. I did the trail off starting Nov 24 2022 so it’s been a long time of this.
B12 is too low
No folate result?
Presumably you are in USA?
Seems rare to get folate tested in US
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until levels are improved
I abruptly stopped synthroid 200mcg dosage, went hypo and went back on it.
Why did you stop?
Likely to take at least 6-9 months to recover
What’s the unit of measurement for vitamin D
my brother went off them and was fine (we are twins), so the doctor said I can try. nmol/L is the units for vitamin D. Why 6-9 months? I know that levo works for me because it worked for 8 years, just need to recover.
After I had my thyroid removed I had been on NDT for over 7 years when the formula changed. My FT3 became so low that I started falling over. That was in Sept 2022 I am still trying to get better now, 9 months later. Brain fog is bad, yes. Increasing back to the original amount is too fast to soon. All of my vitamins and minerals are good.
Why do you think 6-9 months to recover? My current levels are 1.8 tsh and 1.38FT4 (reference 0.89-1.76)
Vitamin levels crash and take time to recover, especially iron and ferritin
Adrenals (cortisol and DHEA) have to try to compensate for sudden lack of thyroid hormones
Sudden increase in demand for adrenal hormones, and then subsequent reduction in demand…..upsets HPA axis and takes months to rebalance
Being a bloke……Testosterone levels possibly affected too
Could that explain my heart rate is still up even with the numbers I have? I notice is constantly even after 11 weeks on 125mcg. Do you have any recommendations? I am still very foggy and fatigued. Definitely not normal, I know what normal feels like on levo since I had it for 8 years fine. He said I can alternate between 137 and 125 now. Just don't understand how my heart rate is still up if my levels are normal, and how I still feel like this.
Could be low iron
Could be low Ft3
could be high cortisol
Recommend getting full thyroid and vitamin testing done as first step
Test 9am and last dose levothyroxine 24 hours before test
I know what feeling normal is like on levo and this is definelty it. I have no changed my diet at all, everything has been constant but when I did a stupid trial off the medication
Yes
Every single cell needs thyroid hormones
Over 25 years ago, I stopped levothyroxine
I had terrible symptoms due to only being on 75mcg which was only approx half necessary dose levothyroxine I needed.
First time I stopped, after roughly 4 weeks….slowed down, freezing cold and felt depressed …..took 3-4 months to recover. Dose levothyroxine should then have been increased….it wasn’t….symptoms got worse
So ….roughly Year later stopped levothyroxine again…..became very unwell and took 5-6 months to recover……still dose levothyroxine wasn’t increased and symptoms worsened ….TSH was around 1.5 …..but Ft3 or vitamins not tested
So again about year later I stopped levothyroxine. After about 14 days became extremely unwell, unable to eat, struggling to breathe, completely immobile. Was in wheelchair or very limited mobility for 6-9 months….then I (finally) got my referral to thyroid specialist endocrinologist……took 18-24 months to very very slowly increase levothyroxine up to 125mcg
this was long before this forum started
I got access in 2016 to historic blood test results from this time ….vitamin D was only 12nmol, (4.8ng/mL) yet I wasn’t told or prescribed any vitamin D at the time
Had multiple symptoms of low B12….dizzy, pins and needles etc ….was dismissed as “anxiety “ and B12 and folate never tested
And craved liver and orange juice …..presumably due to very low iron / ferritin
Vitamin levels were never tested in subsequent years
Only regained my health when joined this forum in 2014 …..got full private testing and corrected low vitamin levels ….etc …more on my profile
What’s the cause of your hypothyroidism
Do you have autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high TPO or high TG antibodies
I meant I don't feel normal. Maybe the fog is making me miss some words.
When you stopped levo, did you go back on the same dosage as you were prior? That is what caused the issue for me. I went off 200mcg, then back on it and going back on it caused me to become super overmedicated.
I am glad you figured that out and appreciate the insight. My liver ezymes were highly elevated when I was overmedicated and I have not had them checked since.
My doctor put a note for me and said it is autoimmune hypothyroidsim and I have had antibody tests and they were highly elevated.
I am 23, 5'10 and 185 on 125mcg right now. Was on 200 prior. I've never noticed hypo symptoms even at the start, even as they increased my dosage over the years. Until I did that trial off
I felt awful with a tsh of 224 and ft4 of 6 (9-19) when I went off. Within 2 weeks I knew something was up and got tested.
I am in a weird spot and just want to feel normal. My labs say normal but there's absolutley no way. I have this layer of fog over me, and I am usually very smart, so conscious of my behaviors and now I feel like a zombie
Johnfishman,
Brainfog is a classic hypo symptom. We don’t just take thyroid hormone meds and they work, but go through numerous complex interactions with other hormones, proteins, etc that involve transportation (both around the body and into the cells), conversion, elimination, etc, etc. Their workings are also influenced by our environment, genetics, nutritional status and most importantly stress.
You went cold turkey from 200mcg Levo, TSH elevated to over 200 and you restarted 200mcg Levo. Your body is still adjusting to these huge changes and the adrenals may have a new tolerance set point that now won’t allow you to tolerate the amount of Levo your body needs to clear hypo symptoms. Have you thought of adding an adrenal support?
I have not. What I do know is that levo works for me and it works well. That trial off and then overmedication must have thrown me out of wack, but I do know it works for me.
Johnfishman22,
Great news. Levo does works for many people so it's just a case of allowing your body the right conditions to tolerate the correct dose again.
You are now on nearly half the dose you were before when Levo eliminated hypo symptoms so it's not surprising you are feeling unwell.
My levels are normal although I still don't feel normal. Think I just need to wait even longer?
Johnfishman22,
Thyroid hormone has to enter cells and convert to become active. Labs only show the amount in the blood. Therefore, it is possible to have perfect labs and still exhibit hypothyroidism symptoms.
I agree you need to wait much longer for things to regain some sort of equilibrium but you can help yourself by ensuring iron and nutrients are optimal and maybe adding some adrenal/mitochondrial support such as Vit C and a multi mineral combo. Given you were well before I wouldn't take glandulars or adaptogens at this stage as its too early and things will hopefully right themselves 🤞.
Hopefully just time is what I need. I can say that things HAVE improved over the last few months, just been slower than what I want.
Took me about 3 months to recover from over medication (150mcg down to 125mcg T4). I'm surprised at how long it takes for the body to respond to over, or under, medication but I tend to suspect that there is great variation between people given the complexity of the hormonal system and how it affects different aspects of the body.
Thank you. Did it take you 3 months ONCE your levels were in range?
Replying to Johnfishman22:
Sorry, I can't answer that as during that 3 month period I didn't get tested again, I went by my symptoms (or lack of) and given that I'm a bad converter of T4 to T3, it was a question of getting back to a semblence of 'normalcy'. All my underlying symptoms persisted but reduced in severity. But what I can say, which sounds paradoxical, is that when I was under-medicated and feeling really awful, increasing my meds had an almost immediate effect, that is, within a couple of days, why this should be so is a mystery.
Brain fog is a symptom of under-medication, not over-medication.
It's a symptom of both. Brain fog is for sure my main symptom of overmedication and my tsh was 0.04. I was undermedicated with a tsh of 224 and the brain fog wasn't nearly as bad as it was compared to being overmedicated.
TSH isn't a thyroid hormone and is a poor indicator of thyroid hormone status. What is your T3 level? The amount of thyroid hormone in your blood doesn't necessarily equal the amount entering your cells either, there is such a thing as cellular hypothyroidism. I've been over-medicated and under-medicated and brain fog isn't a symptom I've ever experienced from over-medication. Over-medication symptoms range from rapid heart beat and palpitations to poor frustration tolerance and irritability. I prefer over-medication to under-medication though because my mind is clear when over-medicated. It might be different for you but I highly doubt that it is.
They told me I didn't need to get T3 tested. I had fast heart rate, irritability and all other hyper symptoms with brain fog. I was confused about brain fog thinking it was not a symptom but it for sure is. By far the most notable one when I was overmedicated along with the fatigue, fast heart rate, and having a hard time sleeping. My tsh was 0.04.
They are incorrect. T3 is the most important of the three (TSH, T4, T3).
My TSH is lower than yours at 0.02, but I don’t think I’m overmedicated because my FT4 and FT3 are roughly 60% and 50% through their ranges.
A lot of people have very low, even suppressed TSH but are not overmedicated because the TSH can stop working properly, so once on thyroid replacement it’s not a good measure of very much. What you need to know, along with symptoms, is where your FT4 and FT3 are. Low FT3 seems to cause the most symptoms.
John, I have been over medicated and came off all Levothyroxine and symptoms resolved. I have a new plan in place in how I wish to proceed with it as I am certain the hypo symptoms will come back. My over medicated symptoms resembled both hypo and hyper.
My point is, it’ll take as long or as little as it takes. The old adage that everyone is different is true so it is on us to pay particular attention to our bodies while only using others experiences as helping to make an informed choice.
Good luck on your journey.
Thanks for your input. I was on 200mcg overmedicated, then I was lowered to 175mcg and after a month my tsh never changed, then dropped to 125mcg which put my tsh in the correct range. Hoping it is a matter of time now before the brain fog clears up and I'm back to normal!
how long were you off it before symptoms resolved?
Hi Rose Star, I went with BNF suggestion of a few days, and true enough by the 3rd the fatigue set in and I resumed on the 4th day on a lower dose. And, I am so glad I did.
It is also mentioned on the CKS under Adverse Effects cks.nice.org.uk/topics/hypo.... Thankfully, it worked for me and I intend to reach my ‘optimal’ dose slowly and with care.
Johnfishman22,
What are your thyroid levels now? You say both your TSH and T4 are “normal” but are they “optimum” which is what you need to aim for. If they are at the lower end end of the normal range instead you won’t feel better until your dose in increased.
tsh is 1.85. FT4 is 1.38ng/dl (reference 0.89-1.76)
Just test TSH and Ft4 is completely inadequate
FT4: 1.38 pmol/l (Range 0.89 - 1.76)
Ft4 only 56.32% through range
Ft3 likely lower
Helpful calculator for working out percentage through range
You need TSH, Ft4, Ft3, vitamin D, folate, B12 and ferritin levels tested
Test early morning and last dose levothyroxine 24 hours before test
He emailed me as I asked for Ft3 and I was told since my FT4 is normal it's not needed.
You need to give us your most recent thyroid labs with ranges.
tsh 1.85 (reference 0.550-4.780)
Ft4: 1.38ng/dl (0.89-1.76)
This was done on May 29th.
Any input? I have brain fog and feel fatigued. And my heart rate is slightly up.
HiJohnfishman,
"I was on 200mcg overmedicated, then I was lowered to 175mcg and after a month my tsh never changed, then dropped to 125mcg which put my tsh in the correct range"
When TSH has gone very low/ supressed, and dose is lowered by 25mcg , it is reasonable to expect TSH to take significantly longer than 4 weeks to rise.
175mcg may actually have been fine if it had been given enough time to settle in , and as well as TSH taking it's time to respond, the symptoms of overmedication would also be expected to take longer than 4 weeks to resolve fully, even if the new dose is actually ok .
So one possibility is that 175 was actually a perfectly good dose but they didn't give it long enough for overmedication symptoms to improve , and then overreacted and lowered it drastically to 125.
If this is what has happened, and 175 or 150 is what is actually needed, then you won't get rid of the brain fog on 125 no matter how long you wait.... and logically it does seem a bit unlikely that 125 will be enough now if you previously needed 200.
Seeing some actual numbers might make it a bit easier to figure out what's going on .
eg:
~ What were your 'usual'/ previous TSH / fT4 results (+lab ranges) when you were ok on 200mcg (before you came off it cold turkey)
~ What were they after 4 weeks on 175 ?
~ What are they on 125, and how long had you been on 125 when tested .
~ How long after taking last dose were test done (this affects fT4 result) .
~ What time of day were tests taken (this affects TSH result)
You have been subjected to some pretty heavy handed adjustments .. stopping 200mcg cold turkey is asking for trouble.. restarting back at such a high dose was asking for trouble ..... and reducing so drastically from 175 to 125 without waiting longer than 4 weeks to gauge the effect of 175 was also asking for trouble .
The body wants stability and the HPT axis is a very finely tuned system .... large / sudden changes in your thyroid hormone levels will take your body's systems some time to recover from, even once you are back on the right dose for your needs ....... and you don't know if you are back on the right dose yet .
preferably use much smaller adjustments in dose in future , e.g 25 or even 12.5mcg at a time , and allow minimum 6 weeks , preferably 8 -12 weeks to allow symptoms / results to settle down properly before testing or making any further changes.
Hey Tatty. Just an update and I would love your thoughts on it.
Previously when we last spoke I was on 137mcg, tsh 1.09, FT4 14(9-19), FT3 4.2 (2.6-5.8). Still had massive brain fog and fatigue, so he upped my dosage to 150mcg.
After 6 weeks on 150mcg, no change AT ALL in symptoms, tsh 1.04, FT4 14 (9-19), FT3 4.8 (2.2-5.8). This was august 14th.
So he increased me to 175mcg now, and I will do another blood test in 6 weeks. Still feeling like crap. Super foggy like a third person spectator constantly, it almost feels like I’m drunk, less thinking and more just moving into action
Reminder: I was on 200mcg for at least 4 years prior to this mess. He’s going by my symptoms and mainly FT4. I followed proper testing protocols you recommended more both those blood tests (9am, no pill before).
Hi John , to be honest i'm not surprised a small increase to 150mcg didn't cut it, my gut feeling was that you'd need to end up on more like 175 ish .
Hang in there ~ see how 175mcg goes. ... it may need a further small tweak after that ...eg. 12.5mcg up or down, but i'd hope you start to feel some sort of difference after a couple of weeks on 175.
Hey Tatty. 3 weeks on 175mcg and no improvement yet at all (if anything slightly worse fog and fatigue). I could go for a blood test in a week as he said 4-6 weeks, but don't want to be premature. I also don't want to drag this out for longer than it needs to be since it's been almost 8 months feeling the worst I have ever felt. I want to feel normal asap. Either my correct dosage is 175mcg or 200mcg (the one I was on for years). I was hoping to see a bit of improvement on 175 and am shocked I haven't. Any thoughts? My doctor is great and is treating my symptoms, he wants them to be eliminated like I was before.
I'd give it a full 5 weeks .
There's really no point testing before that .
obviously 6 would be better, but i understand the desire to get on with it.
Hey Tatty.
I decided to wait it out on 175mcg. I just got a blood test at the 6 week mark. All tests done the same around 9am without taking levo before and fasted.
175mcg test after 6 weeks:
tsh: 0.37 (0.32 - 4)
FT4: 14(9-19) (50% through range)
Previous test on 150mcg after 6 weeks:
tsh: 1.04 (0.32 - 4)
FT4: 14 (9-19)
My FT4 didn't change at all but my tsh is almost "overmedicated". My tsh seems to be inaccurate or just messed up. On the blood test from the past when I felt normal my tsh was 1.46 and FT4 18 (levo taken before test, so likely 17) which is weird since my tsh now is 0.37 with an FT4 of 14, way lower than 18. . Is this tsh result suppressed or something to be concerned with if I increase my dosage to 200mcg, since it will definitley put the tsh out of range. Still having brain fog and fatigue. I was thinking to wait till week 8 to see if symptoms resolve and then if not I go up to 200mcg. My doctor is going mostly off the FT4 result and symptoms. I appreciate your guidance as always.
Any thoughts?
Thank you for the long comment.
For your reference I am a 23 male, 5'10 and 185lbs. Athletic built with a good amount of muscle. Diagnosed at 15, never noticed symptoms at all. Slowly built a dosage up to 200mcg without really having noticeable brain fog like I am having now.
- I dropped from 200mcg to 175 and my tsh didn't move within 6 weeks at all, symptoms did not change, so they dropped me to what they called the starting dosage for my bodyweight which is 125mcg
1. I did not have a blood test for over a year and a half because I didn't have symptoms and honestly forgot all about hypo (I know, terrible idea but it slipped my mind because I just always felt fine). I do not believe I was taking 200mcg correctly and that is why over the years they slowly bumped my dosage up. Having it with coffee, missing dosages etc. Looking at past blood work my tsh was 1.46 and free t4 19 (reference 9-19)
2. after 4 weeks on 175mcg my tsh was 0.05, so it hardly moved from 0.04
3. I have had three blood tests on 125mcg. After 4 weeks on 125mcg my tsh was 2.0, Ft4 (1.29, reference 0.8-1.76). After 6 weeks on 125mcg, 1.835 tsh and FT4 1.32 (reference 0.89-1.76). After 9.8 weeks, lets call it 10, my tsh is 1.828 and FT4 1.38 (reference 0.89-1.76). Looks like my levels are stable at this dosage.
4. A few hours after taking my dosage I would get the test. It was done the same way for each test, I had that covered.
5.All tests were taken at around 11pm, I went fasted to all them to keep it consistent.
Very thankful for your help. If you have any recommendations for me let me know. I hope this is just a matter of waiting it out. I want to emphasize the brain fog, that is the main symptom.
so current fT4 is stable at aprox FT4: 1.3 ( 0.89 - 1.76) 47 % calculator thyroid.dopiaza.org/
But your previous was 19 [9-19] 100%
Current TSH stable at aprox 1.8 /2 which is
a) a bit higher than where most people feel best (1 ish is the most common level for healthy people not on levo ... and people on levo often need it a bit lower than 1 to feel well )
b ) higher than your previous 1.4
The higher TSH is an indication of the lower fT4 level.
and if you previously felt well with T4 at 100% then it's not surprising your brain won't play ball properly at 47%
I'd be aiming to get back to your previous levels of FT4 / TSH ... so personally i'd ask for dose to be increased now to 150mcg and give that 6 -8 weeks to see how it goes .
NOTE...Your fT4 probably wasn't 'really' 100% if you were testing fT4 'a few hours' (up to about 6 ish ) after taking the last dose, you will have been measuring during the highest point of the 'peak' in fT4 level.. and because this peak goes up quite fast and drops off at variable rates (depending on the individual ) this is not a good way to monitor FT4 levels .... better to test 24hrs after last dose , this gives a much better idea of what the stable level really is .. so you might want to change how you do that that in future. testing protocol details here healthunlocked.com/thyroidu...
did you mean Tested at 11pm . or 11 am ?
11pm will probably give a higher TSH than 11am.. so again preferably 9 am testing is ideal.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Might be an idea to stick to your current timing protocol just for consistency at the moment ,, until you can get back to your previous levels of TSH 1.4 ish / fT4 100% ish .. but once you feel well again, consider changing timings to 9 am / 24hrs because testing during the peak can sometimes lead to Doctors lowering dose unnecessarily .
it is likely that you won't need as much as 200 to get those same levels if you are now taking it away from food /consistently .
I still feel some of the hyperthyroid symptoms, not hypo. I think if I went for 150mcg it would be too much for me. I still feel my heart rate higher than usual.
11am.
Could I just need to wait longer on this dosage?
my two penneth .. when in doubt about dose .. wait a bit longer .
if heart rate is still high then yes perhaps 150mcg might be too much ... you could either give it another month or so to see how you feel on 125 , or consider a more subtle increase to 137.5 (usually prescribed as 'take 125 / 150 alternate days. some of us prefer to cut a 25 in half to get 12.5mcg)
in my observation on here , more problems are caused by 'too soon/ too large ' than by 'wait another month to see how it goes'
Makes sense. I will wait another month.
Just for your understanding, levo worked perfect for me for 8 years. No issues at all. So I know this medication works for me and I am not new to levo.
If in another month, which will be 14 weeks since I got on 125mcg, I still have this fog, while my levels are "normal", do you think I might need a larger dosage? The brain fog I am experiencing is the same as being at the height of being overmedicated, and it started becoming overmedicated.
if TSH /fT4 levels are still at this sort of level in another month , then it's unlikely/ impossible that overmedication is causing the fog this time.
(that doesn't mean overmedication didn't cause it previously , some symptoms of over / under medication can be very similar , and it's very individual what we experience.. when i was over medicated i was literally jumping out of my skin if a car horn went off in the street , and needing to pee 12 times before i left the house in the morning .. but my heart rate hadn't increased at all , or if it had i certainly hadn't noticed and neither did the GP )
So yes , if still feel foggy in month and tests are same , i'd definitely try a small increase at that point .
Thank you. I agree, I had a similar fog when undermedicated. For my bodyweight, 125mcg is the starting dosage, my doctor said if anything I need to go up from here. I am 185lbs 5'10 male. I have had three tests at the current 125mcg dosage and they are almost identical to eachtother, so it looks stable.
Even if my results are in the normal range I could still need an increased dosage?
185lb = 84kg
usual 'estimate/ guestimate' for full expected dose is "1.6 mcg / kg" therefore your expected dose is 84 x 1.6mcg = 134mcg / day
But in practice it's v. individual .. my expected dose was about 97mcg ,, but i actually needed 150mcg when i was in my 30's, slim/ lots of muscle ... and i still need 112.5mcg 20yrs later , post menopause /same weight /bugger all muscle.
But also , some people need less that this 1.6mcg 'estimate'.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Re. 'normal' range this may help .. healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-
it's like shoe sizes ... you could buy some size 9 shoe's, that's a 'normal' size for blokes right ? .. but you won't be able to walk very well in them if your feet happen to be an equally 'normal' size 10.5 though will you ?
...... thyroid hormones are just as fussy as feet as to exactly what level makes the individual body work optimally.
Very well explained.
I will give you labs results from this entire process, I feel like I am a bit scattered.
PRIOR to Novemeber 24th 2022
- 200mcg, feeling absolutely fine, forgot all about hypo (hence why I forgot to get tested)
- from the last test I can see which was 2021, tsh 1.46 and FT4 18 (reference 9-19, so 90% for conversion of reference range for your understanding/ comparison)
Nov 24th 2022
- decided to do trial off since twin brother did, cold turkey stopped 200mcg
Dec 12th 2022
- I have been feeling awful for about a week, decided to get tested
- tsh 224, FT4 6 (reference 9-19, -30% of reference)
Mid Jan 2023
- feeling a lot better, thought life would just go back to normal since I am on the same dosage as before
Feburary 14th
- started feeling awful, fast heart rate, can't sleep, super foggy (have been feeling this since start of sept but thought it was caffeine or something lol)
- got tested: tsh 0.04 FT4 18 (reference 9-19, 90% of reference range)
- LOWERED dosage to 175mcg
march 1st
- another test: 0.05 tsh, Ft4 14 (reference 9-19, 50% of reference range)
- was told to stay on 175mcg since ft4 decreased a lot
March 20th
- still feeling awful, worst symptoms, foggy, fatigue, can't sleep etc
- another test: tsh 0.05, FT4 15 (reference 9-19, 60%)
- I asked him to drop me to 125mcg which he said was starting dosage since I couldn't deal with these symptoms anymore, especially not sleeping, I start 125mcg here
April 21st
- tsh 2.078 FT4 1.29 (reference is 0.80-1.76)
- ft4 converted to % is 51.04%
May 5th
- another test tsh 1.835, FT4 1.32 (reference 0.8-1.76, 54% of reference range)
- still same foggy symptoms but heart rate is lowering and I am able to sleep better
May 29th (most recent)
- tsh 1.828, Ft4 1.38 (reference 0.8-1.76, 60% of reference range)
Hopefully seeing my full journey will help you get a better grasp of what could be happening still.
will have a look tomorrow .... wine in the back yard .. my neighbours are a bad influence.
If you get any time to look over it I would appreciate it today. I just spoke to my doctor, he said going to 137.5 would be an overcorrection for me based on my current test results at 125mcg (1.8tsh, FT4 1.38 reference 0.80-1.76, about 60%). He told me I can take 137.5 for 3 days a week then 125mcg for the other days if I want
i'd go with his suggestion of 137/ 125 alternate and see how that is after 6 weeks .
However i don't agree that 137 would be an overcorrection , we know that your fT4 result is a peak measurement taken a few hrs after last dose, and TSH is nowhere near the bottom of the range ....is the same GP who told you to wait for longer on 175mcg in march ?
if GP is reluctant to increase in future and you think it's needed, these references will come in useful : healthunlocked.com/thyroidu....
some were taken from GP 'update' sources , one was written specifically for gp's by specialist registrars in Endocrinology / Cardiology ... all recommend GP's keep TSH between 0.4/0.5 and 2 / 2.5 in ALL patients on levo... so there should be no question about their validity.
give your body time... smaller adjustments /waiting longer ... you'll get there.
I am taking the 137/125, he gave me 3 doses while I am travelling in europe so I can make instant changes. I still notice my heart rate. Is that possible with my current number of 1.835 tsh and FT4 1.38 (reference (0.89-1.76)? Would going up make this worse? It's been 11 weeks on 125
it seems very unlikely that overmedication is reponsible for causing an increased heart rate based on those numbers .. but as i have never had any issues with heart rate even when i was overmedicated, i'm not the best person to offer an opinion about heart rate .
Honestly the only way to find out if a higher dose improves it/ worsens it / has no effect ....is to try it.
Hey Tattybogle,
I was wondering if you have any links for what I should aim to get my tsh, FT4, and FT3 too. Someone said tsh around 1 and FT4 in the top of the reference range, but if you have any links or discussion posts you can send my way I would appreciate it. As well, I am reading a lot in the forum about how tsh is not the most important (I always thought it was and was told this). Just trying to educate myself more so I can talk to my doctor and make sure he knows as well. Could my tsh be "overmedicated" and outside the range but my FT4 and FT3 be fine and I therefore feel fine?
hi John . all my collected stuff about Low TSH / Risks vs Quality of Life ...is stored on this post healthunlocked.com/thyroidu... (useful-evidence-that-tsh-between-0.04-0.4 ..... )
i recently added a list of other posts that have useful discussions about low TSH right at the end of the replies
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
i personally don't think it's possible (or even very helpful) to say 'where to aim for' with TSH / fT4 / fT3 levels, we are all different .. some would feel overmedicated with levels that others would feel undermedicated with.
just try and keep the numbers in range , only make small adjustments at a time , and always give them plenty of time to settle in.... be wary of TSH over 2/ 2.5 if you don't feel well as it will usually mean you are undermedicated, and if TSH is significantly below range then do keep an open mind and consider if you might possibly be a bit overmedicated , but DON'T be ruled by TSH ........ how you feel on a dose is number 1 . followed by keeping T4 /T3 in range .. followed by keeping TSH in range in order to keep the Doctor from panicking ....in that order.
TSH can be useful but it can also be misleading .Don't be a slave to it.
This post may be interesting too : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
Thanks Tatty. I decided to go to 137.5 for each day instead of just 3x a week. It's not even a 25mcg increase and I likely need 150 or 175, so I don't want to drag this out longer than it needs to be. Logically it doesn't make sense that 125 or 137 would be enough for me if I needed 200 before. Do you know any reason as to why when I went back on 200mcg after a trial off (only 16 days off, tsh 224 and FT4 6 (9-19 range)) it ended up making me overmedicated? Just trying to get to the optimal dosage as soon as possible because it's already been 6 months dealing with this nonsense brain fog. If anything, I feel like I did when my tsh was 224. The brain fog is the exact same as when I was overmedicated and undermedicated, the main difference is that I can sleep now, my heart is NOT pounding constantly and I am not always hot.
Should I wait 4 weeks or 6-8 weeks to get a blood test? and how much could the difference in testing (going at 9am without dose vs having it a few hours before) make on my ft4? (current FT4 14.6 (range 9-19) tested at 11am with dosage at around 8-9am)
Again, really appreciate your help!
Do you know any reason as to why when I went back on 200mcg after a trial off (only 16 days off, tsh 224 and FT4 6 (9-19 range)) it ended up making me overmedicated?
Because thyroid hormone regulation ,homeostasis , and the action of thyroid hormone inside the cells is a very complex , finely balanced system with many different and interrelated control knobs ... eg 3 different deiodinase's doing different things in variable amounts in reponse to different stimuli etc etc .
Stopping 'everything' is like slamming the brakes on a heavy truck doing a nice steady 60 up a gentle hill ...... if you stop dead it will
a) give you a load of bashed up fruit/ pissed off sheep in the back, and
b) take you a mile of hard shoulder to get back up to speed .... if you try to pull out into traffic again at 60 , you'll burn your clutch out ..... kinda thing.
or .... if you fiddle with hands on grandfather clock.. don't be surprised it it chimes 13 bongs at midnight for few months ( i did that out of curiosity when i was 10 ... i only owned up when i was 49 )
If you have improvements in sleep / heart / temp control , then you've done something right ,,, give it enough time to continue in that direction and don't blow the progress by moving too fast without very good evidence ..
i agree with 137.5/ daily , but yes give it a full 6 wks , test then decide on next move .
Somebody once observed that adjusting thyroid meds is like changing the course of a a supertanker .. turn the wheel a little bit and wait .. it will still turn the ship... you can't do handbrake turns in supertankers , it doesn't work.
p.s hard to say about your fT4 if i had been tested @24 hrs .. it;s not going to be a massive difference , at a questimate i'd expect something like 11.5 /12 /13 ish rather than 14 .6
Hey Tatty. I just got another blood test since I returned to Canada from Europe. Last time we spoke I said I went up to 137.5mcg, and have been taking that daily. It has been 3 weeks.
My blood results don't make sense to me. I also know it's very early but my doctor wanted the blood work regardless mainly because I am back to Canada.
tsh 1.09 (previous was 1.81)
FT4: 13 (reference range 9-19, previous was 14.6 on 125mcg when adjusted by % for this range)
FT3: 4.2 (reference 2.6-5.8, they didn't test it previously)
Still having extreme brain fog, fatigue. I changed my testing method and did it as described by the forum (waiting till after test to take dosage, 10am). SO my FT4 actually went down somehow on the bigger dosage (137) and is is the bottom of the reference range, while FT3 and TSH are fine, not sure how this happens.
He told me to go to 150mcg regardless and wants to treat my symptoms (he was very understanding).
Logically, 125,137 and even 150 seem low compared to my previous 200mcg.
I'll tag tattybogle in so hopefully she sees this as you have replied to yourself 😉
Lol thank you😅
Thanks eeyore . i'll have a look tomorrow John ~brain no use this time of night lol .
now @ 24 hrs post dose (3 weeks on 137.5mcg) ~ FT4: 13 ( 9 - 19) 40 %
previous @ 3 post dose (2+ months on 125mcg) ~ Ft4 1.38 (0.8-1.76], 60%
tricky to compare fT4 directly as last dose timing is changed ...but as an estimate i'd say if latest test had been done @3 hrs like previous one you'd expect the result to be somewhere around 60% ish .... so it's probably not a significant change in fT4 in real terms, but thn it was only a small dose increase, so the current fT4 result doesn't surprise me .
lower TSH does reflect the dose increase though , so that's also as expected .
yes... it's a significantly lower dose than what you were on previously,
and yes , now it's tested correctly @24 hrs, the fT4 does now show pretty low @40%.
So i can see doctors logic in saying go up to 150mcg , and it's good that he's listenign to symptoms. but i'm in two minds about increasing again just yet :
..... you can't get away from the fact that it's only been 3 weeks on 137.5 mcg .. increasing now (and testing now) goes against the 2 basic principles of how to adjust doses carefully:
it doesn't allow long enough for blood results to give a true picture after the dose change,
and it doesn't allow long enough for gradual improvements in symptoms to become apparent as body started to utilise the new levels .
and the body does appear to have noticed the small increase as your TSH is definitely lower .
So personally i'd suggest you wait at least another 3 weeks to see how you feel on 137.5mcg before considering if you then want to try 150mcg ..... because if you decide to increase now and it doesn't make you feel any better , you'll never know if you'd have started to feet better on this dose in 3 weeks time .. and then what do you do .. keep going up more ? it's very easy to miss the sweet spot when you do that sort of thing . Whereas if you have solid evidence from 6 wks on 137mcg (symptoms and bloods , then you can make decisions with much more confidence that you've given the previous dose a proper try.
Thanks a lot for the insight. Can that happen where all of the sudden on the dose you start to feel normal after 6-8 weeks after seeing no improvement for 3-4 weeks? The timeline for changing doses sucks, since I just have to sit there and hope its the right one after 6 weeks, but I must be patient.
Not 'all of a sudden ' no, but i can definitely say i've had dose 2 changes where at week 4/5 i was still thinking this dose has been rubbish since week one , and it's still just as rubbish now ,, and by week 5/6 i was thinking actually this last week has been a bit less rubbish ....and by week 8 i was thinking "oh, i've just realised iv'e been slept much better for the last week than i have for months". and so i've left dose alone for a bit longer, and the improvements were sustained and slowly continued too build , and i ended up being alright on that dose and realised it was a definite improvement over the previous dose.
yes it sucks 
but honestly, until you get to at least 6 weeks (and pref 8-12) ... you can never be certain if any improvements are going to happen ...or not.
'sit here and hope it's the righ one for 6 weeks' is ... how it is.
For completeness, I have a higher heart rate if my levels are too low. It will go high if my levels are too high as well.
You are young, and therefore impatient. But you are going to have to learn patience and all you can about this disease and it's treatment. You can't rely on doctors I'm afraid. They know so little about it. They treat is with sledge hammer approach to cracking a nut. That's certainly happened to you.
You will learn a lot of what you need to know on this forum. Take your time, read. Ask questions. Distrust and investigate everything your doctor says. Don't be fixated on "200mg was fine before". That was then. This is now. Something has changed.
You have received some excellent suggestions and ideas in these responses. Write them down in a list and try out what has been suggested. Blood tests at 4 weeks are too soon.
I appreciate the bluntness. Based on my longer message above explaining my journey from November, do you have any insight to what could be happening?
Some delicate balance has been upset and needs to be calmed down. Sometimes time will do that. But you can help by resting and not pushing yourself. By eating well and getting lots of sleep in a regular pattern. And by trying increases very slowly and in small amounts. The smallest thyroxine pill easily available is 25mcg, but they will cut into 12.5. And you can make an increase even slower by only taking it every other day, or just a couple of times a week. You are in a position now where you are having to creep up on your body with the changes and not startle it. Meditation or gentle yoga might help to calm things down. It's trial and error.
The frustration of this illness means we've all done daft things in our time in the hope it would just "work". Then we have to readjust and go slow and take time. It can and will be done. Your doctor has been too heavy handed. As others suggested you were reduced too far too fast.
You said your heart rate is up when hypo too? I feel my heart right all the time. It's not the same as being overmedicated but I still notice it. My current levels are 1.835 tsh and 1.38 FT4 (reference 0.89-1.76). I have been on 125mcg for 11 weeks now. I still notice my heart rate, is that possible with these levels?
A few hours after taking my dosage I would get the test. It was done the same way for each test, I had that covered.5.
All tests were taken at around 11pm, I went fasted to all them to keep it consistent.
TSH would be higher at 9am
Ft4 falsely high as you took levothyroxine before test
ALWAYS test 9am and last dose levothyroxine 24 hours before test
All of those tests above and my current results are when I had my dosage in the morning likely 3-4 hours before my test.
I took at 11am, not pm
11am - yes I realised that 11pm was a typo
TSH is highest early morning and drops as morning progresses….lowest after lunch
Ft4 results all false high as took levothyroxine before test
Most important result is always Ft3
And all four vitamins optimal
If anything based on my results, understanding I was on 200mcg prior and dropped to 125mcg, even with these levels, could I be overmedicated still after 11 weeks? Or if anything I am undermedicated?
I will make sure to follow the new testing protocol and demand a full thyroid panel and if not I will go get my own
You can’t tell what’s going on without full thyroid and vitamin testing
what should I ask for to be tested besides tsh and FT4? I had testosterone, B12, ALT (VERY ELEVATED overmedicated), ferritin
At every test
TSH, Ft4 and Ft3
At least once year test
vitamin D, folate, ferritin and B12
Retest more frequently if low and working on improving
Test at least once TPO and TG antibodies for autoimmune thyroid disease
What were most recent B12 and ferritin results
You need to retest vitamin D, see if 3000iu daily is improving low levels
I have been taking 3000IU for 3 months now. I had a blood test and it improved from 40 to 60 (range is 75 minimum). Logically, does it make sense that 125mcg wouldn't be enough if I previously needed 200mcg?
in USA vitamin D usually units are ng/ml
40ng/ml = 100nmol
Double check the unit measurements
Assuming you are in USA as you say synthroid rather than Levothyroxine
Helpful if you can add country to your profile info, especially if not in UK
I am Canadian, currently in France but my doctor gave me 125mcg, 137.5mcg and 150mcg so I can make dosage adjustments.
Most recent vitamin D test: 63.9 (reference 75-250nmol/L)
It was 43, 2 weeks prior and I started taking 3000IU a day and then got that 63.9 results 2 weeks after.
My liver enzymes were elevated.
Alanine Aminotransferase: 108 (reference <50 U/L)
But likely to improve as thyroid levels out
this is a completely curved ball, but has anything else happened over this period eg have you had Covid or bad flu, or anything else that could also be affecting results?
No, my doctor thought the fog was long covid but I have never tested positive and also am vaccinated. This all started with me doing a trial off the medication.
I would stop all thyroid treatment, wait for the first indication that I was just beginning to feel very mildly hypothyroid, and then restart my thyroid hormones at a slightly lower dose than previously.
Johnfishman22 this is exactly what I have done this last week since being overmedicated. It took 3 days for the fatigue to hit, and restarted at a lower dose (although my plan was to wait 3 days anyway). For me, I made my decision based on TSH alone as my clinical picture matched thyrotoxicosis. This was after a couple of weeks initial of improvement before going downhill on a large starting dose. I’ve slept well since stopping medication, and on lower dose my joints pains, fatigue (which is mild ish ant this point) and cold intolerance are very apparent. But, I can just about manage basic functions. I believe my body needs time to calm itself from the high starting dose, and can only tolerate small increases. That’s my hope anyway, otherwise it could be the medication is just making me worse, which seems a lot more complicated based on what I have read.
My recommendation for you at this point is get a dairy, note your symptoms and doses and pay very close attention to your mind and body perhaps against something like this thyroiduk.org/wp-content/up... and thyroiduk.org/if-you-are-un... bearing in my mind there will always be individual differences e.g. I suffered from constipation not diarrhoea when overmedicated and vice versa when not medicated. Research. Over time, your body will reveal yourself to you.
Something that I don’t see mentioned often here or on other forums, is exercise. Even if all you can manage is something very basic like walking around every hour if like me you are stuck on a sofa (music is good motivator for this). I am a strong believer that good nutrition with exercise have strong healing power.
I am hoping it works out for me, and whatever you do or don’t works for you too 🙏🏽
NB - edited to include more information.
A lot of people on Levo find that they feel better for a while when they come off it. I'm not aware that any sensible explanations for this have been produced - at the moment we just have to accept that this it what happens.
My guess is the body realises it’s missing, sets the TSH to work, then the TSH is reminded and goes ‘oops, I’m too knackered and I can’t do this’.
Who knows. The human body is ever evolving thanks to the mess we put it in, and one day we may figure out a way to survive without the medications. Here’s hoping anyway🤞🏽
I read as far as I could manage on this post and its answers. In my view there is just too much of this happening to patients. We are seeing more and more on the forum, patients being told something along the lines of “We will just take you off your meds for a few weeks to see where we are”. There is something truly sinister about this. It’s positively maleficent. I wish there was some way to advise forumites as to the difficulties before they agree to this with any malevolent and/or ignorant doctor. It causes nothing but trouble.
If I have got the wrong end of the stick here I apologise. I am just so concerned for patients who have quite enough to put up with, without these hair brained instructions.
Switching from levo to synthroid dose adjustment.
How long to see results from adding T3 to T4
Switch from NP Thyroid to Armour?
