I last tested in March 2020, when I increased Levo from 137.5 to 150 following advise from @greygoose I’ve been pretty much cruising from March 2020 till now May 2021, usual ups and downs but generally doing well. Following latest test results, I dropped Levo to 125 for 3+ weeks and then dropped to 100 last week.
Then, suddenly, hit a bizarre crash and ended up in hospital emergency 2 days ago. I’ve experienced these attacks for 4 days and they last an hour or longer. Symptoms are very severe pain, agitation, need to keep moving to stop the pain, feels almost like a burning sensation. Also similar to akathisia; only way I can explain it feels like a force pulsating through my body or inner tension and I must almost keep wriggling and stretching around. Mentally feel detached, very irritated, very confused, lethargic, difficulty walking, aching joints, brain hurts, angry.
Hospital administered Ketesse iv, which basically relaxed the muscles. They did complete blood counts and TSH and T4. This was at 10 pm non fasted so not sure how accurate these would be.
TSH 0.01 (0.27-4.20)
FT4 23.01 (12-22)
Internal medicine consultant at emergency recommended I drop the Levo totally for 1 week. Hmm .. I dropped the dosage to 75.
Not sure what’s happening to me, I’m tired of these attacks, 4 days of them have worn me out. Any advice please. Please.
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So, have those symptoms gone since you reduced your dose? Because you really weren't over-medicated. In fact, there was room for an increase, if necessary.
Since reducing the dose on 2 May 2021, the symptoms have gotten worse since dropping the T4 to 100. I’ve only just reduced to 75 for 2 days, since hospital. I presumed I was overmedicating being 133% thru the T4 range; I’m confused. Could you please elaborate.
You're only over-medicated if your FT3 is over-range. Yours wasn't. You're a poor converter, so need that over-range T4 to get enough T3 to keep you going. Since you reduced the dose, your FT3 will now be very low, and that is bound to make you feel worse. If I were you, I'd slowly increase your dose back to where it was. Or, you could consider obtaining some T3 to add to your levo.
Oh God! I’m learning something new, again. Ok, increasing by 12.5 daily back to 150. Is there any downside to having such a high FT4 and whether it would be preferable to add T3 instead ? First things first, i’ve just taken 12.5 now as an emergency measure.
Ok, ‘slowly’ back to 150, stabilise & then revisit the possibility of perhaps adding T3. Wondering whether such a high T4 could have any harmful effects. May 2021 FT3 70.81% through the range, what would the upper limit be for FT3 % through range ?
There is no upper limit for FT3 percentage through the range. It needs to be where it makes you well. And, only you can know that.
As far as I know, a high FT4 over-range has no harmful effects. But, then, there's so much we don't know about thyroid. All I know is that a lot of people live quite happily with it even higher than that, when they can't get T3, because the most important thing is to have the right FT3 level for you. T3 is the active hormone. T4 is basically a storage hormone.
greygoose, just a very special thank you once again. I’m so grateful for having you and your selfless curing & healing advice 😊 We are truly blessed to have you. Thank you.
Thank you Shaws. It’s most definitely the same phenomenon worldwide; thinking of the criminality due to the lack of understanding of doctors. I often used to have general discussion on the subject of thyroid with doctors but the emotionless indifference is just astounding. On this occasion at emergency, we simply ignored the advice which was to stop the Thyroxine totally for 7 days! Vitals checked, ECG ok, pain killer administered, that’s all we hoped for.
Yes indeed, last dose 24 hours before, fasting. B12, D, Folate, Ferritin last tested ~ a year ago, but they were all optimal, except Ferritin which was headed in the right direction. From memory B12 was over 900, D was 60, Folate 15.
Current Daily take: Vit D 5000, Magnesium chelated ~400, Zinc 30, Selenium 100, iron 27mg x 2, Folate 400, NAC 600 (after lunch - for insulin resistance), 1 Metformin 500mg (after dinner). I self inject B12 (methylcobalamin ~ 10 injections every year), K2 mk7 100.
Metformin was prescribed in July 2020 by gynaecologist for insulin resistance and possible PCOS. Have had PCOS checked several times since, I’m totally clear, I do not have PCOS. But I’m still taking Metformin & NAC, as gynaecologist had suggested she would continue during pregnancy, if or when I became pregnant. Still trying to conceive. You’ve just reminded me, I’m still taking Metformin.
I’ve presumed I needed to be in the top quartile or thereabouts for T4, hence with the 133% over the range I reduced the dosage. Yes the last drop this morning from 100 to 75, sounds like too much of a shock. I was almost minded to head to the hospital as today’s attack was possibly worse than the first that landed me in hospital 2 days ago.
I dropped my dose from 125 to 100 recently as an experiment (I take T3 as well as Levo). I felt terrible quite quickly. By the 2 week mark I could barely function and my hair shed horribly. And yet you have dropped 50mcg a day quickly and then even more. I dream of a T3 result like yours was. I don't think you should have reduced. You need to increase again slowly. Don't rush it, but do it steadily.
Just coming to terms with what I’ve done by reducing the T4; I’m just in shock. Yes, increase slowly indeed. I think what confused me was the upper limit of the FT4. I’m still not sure where one would draw the upper limit FT4 line and hence the need to add T3. Thank you FancyPants54.
Remember the range is an average. It's not a hard stop, not a limit as such. Bad things don't happen immediately if you go over it. And if you are a poor converter as others have said (I'm terrible) then you most likely need more Levo to get the T3 you need. You weren't that over either. Quite a few people need to take it just over in order to feel well. You have learned a lesson by doing this. It seems to me that we have to learn lessons the hard way to know what's best for us. You won't do that again. If you ever want to try a reduction again, just ry 12.5mcg and wait to see how you feel. If OK then retest in 6 weeks. But if you start to feel worse, back up you go.
I can't increase over 125 Levo. I've tried, but it makes my FT3 go down not up, and I feel most odd and unpleasant. I've tried at least twice, possibly 3 times to do it. So I know my limit of Levo is 125. But on that I have a FT3 stuck around 4.2 or less, sometimes a lot less. So I have to add T3. I have a genetic fault, Dio2, which means I'm prone to poor conversion. As soon as my private endo saw that Dio2 test result he started me on T3.
As for the threats of atrial fibrillation and osteoporosis they like to dish out to scare us if our results are higher than they want, its balls. If your FT3 were consistently over the top of the reference range for a period of time then both of those things might happen. However they won't happen with a FT4 result over range because it's a storage hormone not an active hormone. And there's just as much of a case for both of those conditions to occur with low FT3 levels as well as over range high. I should know. I live in permanent AF now. I was most certainly not over medicated when it began. They talk a lot of nonsense about thyroid and especially about T3.
So don't worry. No permanent harm done. Just get yourself back to where you were and then reassess. If you still have unpleasant symptoms I suggest you get a private blood test done. Use Monitor My Health because it's done in an NHS lab and your GP can't poo-poo it as bogus in some way. Measure TSH, FT3 and FT4 and see what's what.
A huge lesson learnt, thank you for the clear explanation. Going back up slowly towards 150 Levo is really challenging; headaches, exhaustion, blurry vision, emotional, detached etc. I’m in Dubai and have never been under a endo here; all the amazing people here in this group are my Endo. People don’t actually understand why I don’t have an endo. There are literally hundreds of private labs here in United Arab Emirates, we’re a little obsessed with labs & pharmacies! I’m hoping for my first pregnancy soon so I think the gyno might insist on an endo being involved, now that will be interesting.
Medics often forget that Metformin makes the TSH appear artificially low because it works along the pituitary/hypothalamus axis and skews the result.
I take 500mg Metformin too (but divided into after breakfast and after dinner) and I have had no end of arguments with GPs at the surgery who have tried to reduce my levo based purely on my suppressed-looking TSH.
Your FT3 is the result to go by when deciding whether you are under/over medicated.
Thank you, I’m sure the suppressed TSH was possibly the only determining factor for the emergency doctor in suggesting stopping T4 med all together! My hba1c is always under 5.5 and I’m hoping to learn what my options are for Metformin. I was prescribed it by my gyno as a safety measure. The Metformin and NAC has really helped my weight too. I didn’t know Metformin is available in 250mg capsules.
if you felt OK and didn't have these problems on the 137.5 or 150 for over a year, even though fT4 was 133% ,then i would suspect the big drop to 125 then 100 is what has caused the problems.
That's a big loss in a relatively short period of time compared to what your body was used to .
Over range fT4 does not necessarily lead to problems like you are having.... mine is currently 140%, for a while previously it was 200% and i did then reduce dose slightly, but not because i was having any symptoms of overmedication.
What is a little bit curious is that your fT4 at the hospital just now still shows fT4 at same level despite 3 weeks on125 and 1 week on100.. i would have expected it to be lower .....perhaps some of this is explained by difference in time of last dose /time of test ?... or maybe not .. when my fT4 was 200% i reduced dose from 125 to 112.5 and the bloomin fT4 went UP to 242% and the test conditions were exactly the same.. so I don't know what to make of that.
That's not to say that over range fT4 is desirable , i do think it might bring some problems , and i'm sure it's preferable to have fT4 in range and get fT3 similar,, rather than taking so much Levo on it's own to be able to function.... but since they make it so difficult to get any T3 it's not always possible to have the ideal. and in that case over-range fT4 (if that 's what it takes to feel Ok) is probably better than feeling crap with fT4 in range.
I wonder if they are just blaming the over range fT4 /low TSH because it's the most obvious thing they can see to hang it on. (and those TSH and fT4 levels might make SOME people have symptoms of overmedication)
We're all different , but personally on Levo when my TSH was 0.04/5 i felt OK, but if it went as low as 0.01/2 i would feel over -medicated.. and for me the TSH was actually more reliable in this respect than the fT4 % was.
But looking back you've previously been on T3 only so maybe your TSH is 'down regulated' ?
And last time you were on 100mcg Levo in 2019 your T4/3 was comfortably in range but TSH was still also really low.. so i'm not sure your TSH is very reliable for monitoring T4/3 .
October 2019 100mcg T4...........May 2021 150mcg T4..........................*Dec2019 137.5mcg T4
It's also Interesting that your FT3 doesn't seem to have been affected by increasing Levo form 100 to 150mcg .
*edit.
*if your fT3 doesn't increase with higher dose Levo, then what's the point of going over range on T4 ? (unless it makes you feel better).. On paper 74% seem a pretty good fT3 level, and your conversion of T4 to T3 looked pretty good at 100mcg and 137.5 mcg... but now, on 150mcg it looks as though you are not able to get anymore than 74% anyway which makes conversion look 'poor' ... but is it really ?
Thank you indeed for the extremely detailed response. Yes I believe the FT4 at hospital taken at 10pm may be a little skewed. T3 availability is marginally better here in Dubai, as you can theoretically ‘get’ an Endo to prescribe and then source from the compounding pharmacy, a public pharmacy or very limited private hospitals here that are allowed to stock T3. It is a complicated process that can take 3 months for the health authorities to approve! Better just to fly somewhere and get your T3.
That’s very interesting, on my FT3 not being affected by increasing T4. I’m not familiar with the down regulated TSH. I understand at a given point in lab results, it makes sense to add T3.
I’m just hoping to wake up one day and be back at the 150 Levo as soon as and then retest and revisit the possibility of adding T3. Currently upping the dose slowly is going pretty painfully, the headaches, blurry vision, difficult mornings energy & concentration wise, overly emotional etc.
Hi. These episodes sound awful and scary. They are very similar to ones I had on a particular brand of levo. Twitches, headaches, buzzing, dizziness, feeing faint. What brand are you on?
Hi Mollyfan, I’m on Euthyrox by Merck. It’s mostly the only one available here. Eltroxin is occasionally available here in Dubai.
I’m slowly increasing my dose back towards the 150 and whilst it’s not without difficult symptoms. Having explained all here, I learnt I was never over medicated going by either the FT3 or even the FT4 and to take the FT3 as the guide to being over medicated. T4 bring the inactive hormone it to a large extent doesn’t matter being over the ‘range’ if one affixes some boundary.
I can see where the hospital is coming from here. They obviously looked at your disease and wanted to do a cold boot. Stop everything like in block and replace to see if you could then manage with a low dose.
It may work in some people and may not in others. I would say I had those reading on my first experience and the discovery of my over active thyroid. Second time although still high they were lower than the first time.
I hope you find your answers in here as there are some knowledgeable people in here to help you along the way.
I’m learning things on this site too. I didn’t realise it was ok to be over the limit on T4 range and this be ok. I do get headaches though and wonder if this is the Levo. On the leg pain, I get what I call ‘thrashing legs’. It’s like I have to kick them about all the time at night. Wacky theory alert but I wondered if when one is ‘low’, cholesterol rises. I know when I take aspirin the thrashing legs stop. Weird. As I say, wacky theory. Anyway hang on in there and I hope you start to feel better soon.
Look up the possibility of RLS, which is restless leg syndrome. Often the cause is unknown, but it can be linked to iron deficiency and dehydration. Worth considering.
The ‘thrashing legs’ , the best description! With heading back to my original T4 dosage, the leg thrashing has now gone thankfully. The biggest shock of course being I was actually needing an increase in my level of FT3. Thanking you for your good wishes.
Doctors love to frighten thyroid patients. They go on and on about the risks of low in range or under the range TSH, but they seem to be completely oblivious to the dangers of low Free T3 or low Free T4 or high TSH.
They also assume that tachycardia (heart rate over 100) is strictly a symptom of overmedication or hyperthyroidism or atrial fibrillation. But people with too low a level of prescribed thyroid hormones or hypothyroidism can have a fast heart rate as well, and so can people who have low iron and/or ferritin. Other low nutrients can affect the heart too. And guess what? People who are hypothyroid often have very low levels of nutrients.
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There was no need to reduce it unless you felt unwell.
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