Incredibly stupid mistake. What to do now? - Thyroid UK

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Incredibly stupid mistake. What to do now?

Evej13
Evej13

Hi All,

I was on 150mg for quite some time, doing well and increased my dosage to 157.5 for about three weeks. I seemed to be over-medicated, and (I don't know what I was thinking), reduced my dosage to

Day1: 120mg

Day 2: 120mg

Day 3: 60mg

Day 4: 30mg

Day 5: 0

Day 6: 30mg

Day 7: 60mg

I am now on Day 15 back to 150mg and am feeling a strong heat flush in the afternoon, plus increased heart rate / blood pressure and panic.

Do I stay the course at 150mg or do I reduce to 120mg for a day or so to try to reduce these symptoms?

Thanks!

Eve

67 Replies
oldestnewest

Did reducing to 120 get rid of the symptoms the first time you did it? If not, why would it now. Apart from totally confusing your poor, long-suffering body, I doubt you did much harm. My opinion is that you need to sit it out for a while at a steady dose, and let things calm down. Say about six weeks? And, then get tested. :)

Evej13
Evej13 in reply to greygoose

Hi greygoose. No. It didn't. I am trying but it feels like maybe I increased back to 150 too soon? The heart rate increase and panic are happening around 2.5 hours after taking my NDT. Is this a normal reaction and how long should it last?

I will NEVER reduce like that again!

I've had a UTI and been on antibiotics for nearly two weeks, plus have had a horrible stomach flu for the last couple of weeks (running at both ends!).

Thanks.

greygoose
greygoose in reply to Evej13

Not only did you increase to 150 too soon, you decreased to 0 too soon! Decreases are supposed to be done the same as increases : 1/4 grain every two weeks. Of course, you can expect to feel awful. What were you trying to achieve? I can't tell you if it's a normal reaction, because I doubt anyone has ever done that before. Try splitting your 150 into two or three doses, see if that helps. But, given your other problems, I doubt the rapid decrease/increase is the only reason you're feeling rough. You just need to take it easy for a while, whilst your body sorts itself out.

Evej13
Evej13 in reply to greygoose

I know. It's 4:30am and I am wide awake feeling just awful. My whole body is tingling and shaking. I've already done it. How do I fix it? What do I do now?

greygoose
greygoose in reply to Evej13

All I can suggest is you wait, and let it pass. Things will calm down eventually.

Evej13
Evej13 in reply to greygoose

Thanks greygoose. I already am splitting the dose into 5 @ 30mg each, and didn't feel any of these symptoms, except for 2ish hours after taking the NDT for about an hour I felt a hot flush with increased heart rate for about an hour. Today was much longer than that. And much more intense.

I realize what I did was really stupid. Now... I have to get through it somehow...

Eve, my endo who is somewhat helpful said that when you are taking too much, avoid the medication entirely for three days. Then resume at your desired lower dose. I did this recently and had about 2-3 weeks of hell before I started feeling better. So you may be almost there, just stay the course with the 150 and things will sort themselves out.

I understand wanting to try a teensy bit more. We are striving for perfection sometimes. Or always, if you are like me. :)

Evej13
Evej13 in reply to thyroidrose

Thanks thyroidrose. How did you get through the 2-3 weeks of hell? Yeah, I'm a bit of a perfectionist as well ;)

thyroidrose
thyroidrose in reply to Evej13

Hi Eve, I just told myself that it would be awful and to be prepared. After a short while the worst of the symptoms were fading and I knew I was out of the woods.

Does NDT work well for you? I am considering switching from Tirosint which is T4 only. My biggest problem is brain fog/heavy head.

Evej13
Evej13 in reply to thyroidrose

Hi thyroidrose. NDT WAS working well for me until I made this bad mistake. I was on Synthroid for about a year, which didn't work at all well. Still had lots of symptoms. With NDT, I was feeling quite well, until this winter. I increased from 150mg to 157.5mg, which seemed to make me over-medicated. in retrospect, other things might have been going on and I shouldn't have increased in the first place.

thyroidrose
thyroidrose in reply to Evej13

I hear you, when I increased I felt a little voice telling me not to, but I did it anyway. I went from 88 micrograms to 100 micrograms. It's amazing how much a small amount of the hormone can make you feel so different!

So glad that NDT is working for you, thank you. I am sure in a few days you'll start to feel the worst of the symptoms abate. I think it's promising that you were doing well and that you didn't totally avoid taking the hormone for several days. This way you still had some in your system so the build up to where you were on 150 shouldn't take that long. I doubt it will take the full 6-8 weeks that's for sure.

Evej13
Evej13 in reply to thyroidrose

Yeah, it is. I hope it doesn't take 6-8 weeks too. I did have some in my system for sure. But, clearly was a very big mistake to do what I did. I guess if you go over, you just have to reduce back to the original dose and put up with the symptoms.

thyroidrose
thyroidrose in reply to Evej13

Yes... so the good news is that it's only 6-8 weeks.. and the bad news is that it's also 6-8 weeks. We can't win! :)

Evej13
Evej13 in reply to thyroidrose

Agreed. I feel AWFUL!

TSH110
TSH110 in reply to Evej13

Don’t beat yourself up about it a lot of people up their dose in the winter you were just doing what you thought would help, now you know it is too much for you which is good knowledge to have. You can turn a -ve into a +ve 👍🏼

I’ve posted a guide for you on dosing with NDT which I certainly found very helpful it is lower down on the threads

😉

Evej13
Evej13 in reply to TSH110

Thanks for the encouragement TSH110!

Evej13
Evej13 in reply to thyroidrose

What type of symptoms did you experience thyroidrose?

thyroidrose
thyroidrose in reply to Evej13

Oddly my symptoms of overmedication were very similar to those of undermedication with just a couple of differences. I had the familiar brain fog and joint pain but I also had a burning type tongue (it is swollen but the burning every day was definitely a new symptom) and hot flashes.

Evej13
Evej13 in reply to thyroidrose

Interesting. I have similar hypo and hyper symptoms as well. But, I also have some that are unique to each i think. Right now I seem to be swinging between them, feeling hypo in the morning and hyper by mid-morning to evening - coincidentally 2 to 3 hours after my first NDT dose!

thyroidrose
thyroidrose in reply to Evej13

I think it's common for us to swing between hypo and hyper feelings when there is any sort of imbalance. That adds to the mystery of it all - that we can have such different symptoms from the next person.

One other suggestion would be, if you can, to sit outside or try to take a walk while listening to some good music. Anything I can do to "get out of my head" during times like these seem to help me.

Evej13
Evej13 in reply to thyroidrose

Mystery is right lol. A walk sounds like a really good idea.

jamesal0
jamesal0 in reply to Evej13

Eve this is pretty normal, I think thats the T3 making you feel a little hyper and then as you come down off T3 and start using T4 you feel a little hypo. You sound like you're splitting your dose. I do 3 splits 6am 11am 10pm. I think this allows me to keep my T3 dose pretty optimal through the day and not feel to too wacky in that first hour after taking. The other thing I do is try and eat with each dose, this dampens/spreads out the T3 a little, you will eventually absorb it some time in your 20feet of intestines.

Evej13
Evej13 in reply to jamesal0

Thanks James. That actually makes sense, as I feel hyper at around the 2 - 3 hour mark after taking it, and then hypo (cold) around the 5 hour mark. I am splitting five times a day right now - at 7am, 10:30am, 2pm, 6pm and 9:30pm. I will try splitting it your way and see if that will help me feel better. I thought you were supposed to take NDT on an empty stomach? But... if taking it with food will help with these hyper symptoms, I'll try that.

From what I read, the T3 peaks around 2 to 3 hours after taking it, and starts to decrease after that.

jamesal0
jamesal0 in reply to thyroidrose

Hi TR - yes I'm similar (ndt), as I go too far, my feet go first and then scalp, tongue, lips. I use these symptoms to tune my ndt dose. My biggest mistake in the early days was altering my dose too much at a time. Now I just add or delete 1/2 grain from daily to tweak things. I also need 1/2 grain more in winter as compared to summer.

Evej13
Evej13 in reply to jamesal0

James, I also feel like I need more in winter, but that's what pushed me over this time. So, am not sure. I just need to be able to notice the hyper effects sooner than I do I think. I only raised from 150mg to 157.5, and pushed myself over.

jamesal0
jamesal0 in reply to Evej13

Hi Eve When I first went on NDT I had dramas too, I started taking 1 grain per day and blew up after 3-4 day. Dropped down to 1/2 grain still struggled for months. Bought drug scales on ebay and measured 15mg NDT powder and diluted it in 1 Litre of water and would sip through the day. This went on for 3 months (I went more and more hypo), until I discovered TRT Testosterone supplement (it's a bloke thing - sorry). Once I was on TRT I could then increase by 1/2 grain every couple of weeks. My GP didn't understand it but was just happy I was beginning to get a TSH in the normal range again. I put it down to my endocrine system being totally broken from years of Levo T4. You need endocrine hormones to help you convert T4 to T3 and you need T3 to keep you endocrine system healthy. It's a vicious circle. Once it's broken, it's quit difficult to get it kick started again. I guess all I'm saying is you may want to think about your oestrogen, progesterone, testosterone levels etc.

jamesal0
jamesal0 in reply to jamesal0

I forgot to say - if you're not converting T4 it pools in your tissues and makes you feel really off, headache, peripheral neuropathy crawling scalp, numb lips, burning tongue, shaky hands, etc (no Mr GP I don't have MS - I have levothyroxine poisoning)

Evej13
Evej13 in reply to jamesal0

Thanks James. I am post menopausal, so are these still important? I was fine on NDT for years. I think am just having problems now because I shocked my body badly by reducing to almost nothing for five days, and then going straight to 150 again. I did manage 150 again yesterday, but am having quite a lot of anxiety this morning.

Not sure whether I'm pooling T4, as I can't get my doc to order reverse T3.

Evej13
Evej13 in reply to jamesal0

Buying a scale and measuring 15mg is a brilliant idea! Yesterday I took 15mg at a time by biting the tablet in half. It helped the flashes immensely. What I'm having the hardest time with right now is early morning anxiety. Am finding it very difficult to control.

Interestingly, my heart rate and BP are not high this morning - they're perfectly normal. But, still feeling anxiety! I wonder if the anxiety is coming from a LACK of T3 in the morning?

TSH110
TSH110 in reply to Evej13

Ha ha I just bite mine with my teeth!!

Evej13
Evej13 in reply to TSH110

I do as well... But a scale would give you a more reliable amount at a time I think.

TSH110
TSH110 in reply to Evej13

I would think so, but scientific tests on cutting up Levothyroxine into smaller doses did not have any detectable effect overall. I know T4 is less reactive and has a much longer half life than T3 but maybe where NDT is concerned it is not that significant either. Must depend on the individual. Perhaps if our free T3 is in the upper third of the range it buffers slight variations in dose but lower down the scale it may matter more.

jamesal0
jamesal0 in reply to TSH110

hahah - I chew all my ndt too. If I swallow it on an empty stomach with water as recommended - I end up with acid reflux after a few weeks. But if I chew and swallow no problems. I ignore the no food thing too, figure it doesn't matter so long as my hypo symptoms and bloods are ok I'm getting enough.

TSH110
TSH110 in reply to jamesal0

There was a recent post about eating helping to absorb the hormones so who knows! It’s courses for horses I’d say 😉

TSH110
TSH110 in reply to Evej13

This is good you must be very close to you optimal dose!

Evej13
Evej13 in reply to TSH110

I think my optimal dose is 150mg, which is what I was on before I raised to 157.5. My biggest problem is that I reduced to almost nothing for about 5 days. So, now I am swinging between both hypo and hyper symptoms it seems.

TSH110
TSH110 in reply to Evej13

I get a bit of that -my temperature gauge is really faulty sometimes vacillating between very hot and freezing cold and I have short bouts of anxiety. I am sure Helvella said a dose of something odd like 112mcg Levothyroxine was perfect but anything more or less brought back symptoms. Perhaps you are the same and need a very specific dose: equal to or >150mcg but <157mcg . It is a shame they do not do more divisions so we could fine tune more easily than depending on teeth or pill cutters. Scales sound like a good option but i’d Be useless with them. I forgot to even take it this morning in the rush to get out. I find it does not make a big difference missing it. I don’t get back till the evening. I just don’t feel as energetic. Not sure how I’d go after 5 days without it tho. I’d never cope with weighing it at least my teeth are my real ones not falsies and I cannot loose them 😂🤣😂

May a euthyroid state be with you very soon 💐

jamesal0
jamesal0 in reply to TSH110

I believe a broken temp gauge is really broken endocrine system (adrenal system). What's your lowest temp and resting heart beat. I was down to 34.5C (94.1F) and 45bm. Ok now after 2 years of 2.5 to 3 grains NDT per day

Evej13
Evej13 in reply to jamesal0

My temp is always about 97.6F or 36.4C, and my lowest heart rate is around 75bpm

TSH110
TSH110 in reply to jamesal0

I fon’t Fit all the adtenalstuffbut feel sure it must be related. I have not bothered with my temp or hr for quite a while. My heart rate has gone from 55 to about 70 ☹️, but I am no long freezing cold all the time NDT sorted that out. The hot and cold are intermittent minor annoyances. One day they say it is mitochondria the next vascular tissue response I think really that nobody knows!! 😂🤣😂😎🤯😨

jamesal0
jamesal0 in reply to TSH110

just keep getting as much ndt into you as you can tolerate and it all gets better :-)

Evej13
Evej13 in reply to jamesal0

Thanks James. Still managing 150mg, 15mg at a time.

TSH110
TSH110 in reply to jamesal0

I think I am there if I take any more I get really quite aggressive and anxious a bit like when I went hyperthyroid before being diagnosed - I have lots of energy tho 😡🤣😂🤣🤬

Evej13
Evej13 in reply to TSH110

Great news TSH110!

Evej13
Evej13 in reply to TSH110

I'm pretty sure it is. I think first thing in the morning is a cortisol release, causing anxiety, increased heart rate and blood pressure. This settles down about 2 hours after my first NDT of the day.

The other time of day that seems rough is around 2pm, which is 2ish hours after my fourth dose. This is where I feel the strongest heat rush and my heart rate and blood pressure are at their highest of the day.

Things seem to settle down around supper time, and I feel a bit better for the evening.

jamesal0
jamesal0 in reply to Evej13

Eve - Before I was on an optimal NDT dose. I was taking 1/2 grain about 3am to deal with getting cold over night. Maybe try taking some of your daily dose a couple of hours before you get up.

Evej13
Evej13 in reply to jamesal0

James. I'll try that tomorrow morning. I'm not getting cold overnight. Just waking up at 5:30 or 6 with lots of anxiety and increased pulse / blood pressure. This settles within about an hour or so of my first NDT dose.

TSH110
TSH110 in reply to jamesal0

You’re brave I never change more that by 1/4 grain!

Hi Evej13,

Oh my! What a scary situation. Yes, that is not surprising you had that reaction since you abruptly went down in major amounts so incredibly quickly, and then stopped it all completely. Your poor body and thyroid went thru major shock with too little hormones and then no supplementation at all. At this point, the damage is done. Stabilize your dosage, stick to it, and stop playing around with your meds before who knows what happens. Choose a dose (150? if this is where you had the best levels and least amount of symptoms) and stick to it for 6 weeks. It might not be an easy or fun 6 weeks, but you can't yo-yo anymore. After that 6 weeks passes, then you can test your TSH, FT3 and FT4, and see where you are. You might need to increase in a _tiny_ increment after that. You might find that you have increased symptoms for awhile after this experience, or that you do not go back to where you previously were.

When over medicated, it's recommended to slowly decrease your dose by no more than 25 mcs (which is probably too much). Simply reducing or increasing meds just a little (12.5 mcg +/-) can result in some significant changes either up or down in the range.

I hope you feel much better sooner than later! Hang in there!

:-)

Evej13
Evej13 in reply to ShootingStars

Hi ShootingStars. I'm having a lot of trouble with the anxiety, shaking and heat rushes right now. Any advice on that? Do I reduce a bit today and slowly increase over the next bit or just stick with the 150? I just don't feel I can manage 150 and put up with the symptoms right now...

Evej13
Evej13 in reply to ShootingStars

I managed 150 yesterday! Ended up taking 15mg at a time instead of a full 30 by biting the tabs in half. It did help with the heat flashes, heart rate and BP

I do have some lab results if anyone can comment on them:

B12 1476 (ref 138 - 781)

D 103.5 (no reference range)

Ferritin 70 (20-120 ug/L)

Iron 20 (10-29 umol/L)

TIBC 59 (45-72 umol/L)

Iron Saturation 34 (14-51%)

ATP Antibodies 33 (0 -34)

My TSH is always suppressed. My FT3 was at 3.59 (3.9-6.7 pmol/L) and FT4 was at 14.4 (12-22 pmol/L).

These results were from April 5 (after I'd decreased my meds for those 5 or 6 days), but before I had increased back to 150mg. I realize the thyroid results are probably completely inaccurate.

thyroidrose
thyroidrose in reply to Evej13

Your B12 looks high. What did the doc say about that?

Evej13
Evej13 in reply to thyroidrose

Not a word. The B12 is because I was supplementing with 2500 mcg per day instead of 1000. Mis-read the bottle. Must have forgotten my glasses and didn't look until I got the results.

thyroidrose
thyroidrose in reply to Evej13

Ok well that is an easy fix at least!

Evej13
Evej13 in reply to thyroidrose

Lol yeah. Wish the rest eas as easy to fix!

You might find this guide helpful. It has good advice on how to reach your perfect medication level and what to do if you exceed it. The T 3 leaves your body very quickly and will cause a lot of strange symptoms if you get a bit too much - so don’t panic!

tpauk.com/main/article/trea...

Hope it helps ☘️🍀☘️

Evej13
Evej13 in reply to TSH110

That's a great article. Thanks! As I am in the middle of going back to my 150, I think I should try to stay the course. I realize I made a BIG mistake... but I can't undo it, so will have to try to get through somehow.

TSH110
TSH110 in reply to Evej13

i’m Sure you will be fine again soon it was only a little mistake 😉 and glad you found the article of interest

Evej13
Evej13 in reply to TSH110

Thank you TSH110. Your comments and encouragement have been most helpful.

helvella
helvellaAdministrator

Whilst I appreciate that there is no guarantee of even distribution, and understand that ERFA have to express the worst case, I find it difficult to accept that biting a tablet is likely to result in such unevenness. (Obviously, I am assuming that the tablet after biting actually looks about half in size!)

TSH110
TSH110 in reply to helvella

Ha ha mine are a tad suspect sometimes - 1/4’s multiply up errors but after 4 days it’s all evened up again. I think teeth are often more accurate than the pill cutter.

Well... I am at Day 19 of 150mg. Still feeling lots of anxiety and tingling arms when waking up around 6am. BP and HR are still on the high side. I take 15mg at 6 and another 15 around 7:30. By 8:30 or so, I am feeling quite a bit better.

I am continuing to bite my 30mg tabs in half, and this has helped with the anxiety, heart rate and blood pressure quite a lot.

I usually have a bit of trouble around 1pm and then things settle out again after about an hour.

Overall, still not feeling great, but MUCH better than a week ago.

Thank you all!

Evej13
Evej13 in reply to Evej13

Looks like I spoke too soon. This afternoon I've had about 2 hours of a strong heat flush and high heart rate and blood pressure. I hope this settles out soon. It's getting very difficult to take the symptoms.

Day 22 at 150mg, after dropping to very little NDT for those five days. Today's anxiety and heat rushes (kind of hard to explain but basically a tingling rush of heat washes over my whole body, concentrating at my arms and trunk) accompanied by anxiety has been quite a bit worse, and is lasting longer. It's been really hard to get through. Just looking for some encouragement I guess, and that these are normal reactions. My heart rate also rises, but doesn't seem as if it's rising quite as much - instead of rising to 100 or so it's rising to about 90 or so.

Ugh. How to get through this? I have been tempted once again to lower to 120mg for a few days, but it seems that might just prolong this whole thing...

Can anybody tell me what the best way is to support my adrenals? I'm pretty sure they're over stressed.

Day 26. Not a great day today. The only heart rate / blood pressure increase is first thing in the morning, and lasts about 2 hours. The rest of the day heart rate and blood pressure are fine. I still feel very hypo - mostly anxiety and weakness. I would have thought I'd feel better by now. I guess I'd have to say I'm a little discouraged. Am I expecting too much?

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