Need advice

[Ralph1985]

My doctor raised my levothyroxine dose from 125mcg to 137mcg about a 6 weeks ago, for the last week and a half I’ve been feeling really anxious and panicky, can’t sleep at night and was getting worse with every upcoming day. For the last three days I haven’t gotten any sleep at all maybe 2 hours a day and so I decided to stop taking the levothyroxine, this happend over the weekend and won’t see my doc for another 3 days, today is my second day without taking any medication and I’m finally more calm and was able to sleep. I don’t know if should go back to my previous dose untill I see my doctor or stop taking it, afraid that is build up in my system and my previous dose would make me feel like I was feeling. Btw my tsh before dosage increased was 2.8 I was gonna get tested next week for the new dose but I guess that won’t happen now that I quit.

[Jodiedebs55]

Wow that's very brave of you . Word of adviceI did the same thing 2 years ago and then changed doctors my new doctor lost my records so refused to prescribe the levo anyway so i went without my daily dose of 150mcg and felt fine ... for a,while . Then I became extremely ill and suffered a stroke and was in danger of having a thyroidstorm which can be fatal . It's very very dangerous to stop taking levo even though for a lot of sufferers we can't take levo alone as we don't convert to T3 . If I were you I'd take something even if its just the original dose . It's just my opinion im not an expert and not telling you what to do but after the stroke id never risk anything like that again . Good luck and I hope you feel better soon .

[Nanaedake]

If it were me, I would go back to the dose of 125mcg and retest in 6 weeks. It might take a couple of weeks to start feeling back to normal and it will take 6 weeks to reduce the additional levothyroxine in your system back to previous levels. Don't stop taking your levothyroxine.

Do you have autoimmune thyroid disease? If so, then levels can fluctuate due to the activity of antibodies. You can read more about autoimmune thyroid disease otherwise known as Hashimotos on Thyroid UK's website.

I would then ask your doctor to test your vitamin levels if not already done.

[Ralph1985]

I thought a thyroidsyorm had to do untreated or undertreated hyperthyroidism and not hypothyroidism, I suffer from hypothyroidism is it still possible to have a thyroid storm in my case?

[Nanaedake in reply to Ralph1985]

Untreated hypothyroidism will eventually result in myxoedema coma but you're not going to encounter this by missing your levothyroxine for a few days when your thyroxine levels were good. However, our bodies don't like big unexpected changes in thyroid hormones so it's best to increase and decrease slowly.

I find that altering by more than 12.5mcgs at a time is too big a leap. But we are all different and some people are more tolerant than others. If you're experiencing anxiety symptoms it makes sense to reduce to your previous levels where you felt well.

If the change in your dose meant that the pharmacist gave you a different formulation of levothyroxine then it could be the change in type of levothyroxine that is causing the symptoms. Check the box and read who the manufacturer are and compare with your previous box. They are supposed to be bioequivalent but people absorb them differently and some types of levothyroxine seem to cause upset for some people.

[Ralph1985]

Ok thanks, I will return to my previous dose and test again in a couple of weeks.

[jgelliss]

I would try to lower by 25mcg for one or two days . And see if that will help make a difference or even take out 25mcg three days out of the week at the most instead of going back to your original 125mcg T-4 . Small increments you'd be surprised can make a huge difference . You might want to alternate between 125mcg T-4 with 137mcg T-4 .

Have you also checked your Ferritin levels too ? Low Iron can cause anxiety as well .

Best wishes on your next steps .

[Venicefan]

Ralph, how did your doctor increase the dose? Did you cut one of your usual tablets in half or did he add a smaller dose tablet? What make/makes of levo are you taking?

[Bob00752]

It sounds from your symptoms as though the increased dosage was too high but that the previous dosage was about right. I assume that as levo comes in 25, 50 and 100 pills that you are cutting a 25 in half to get the 137, or taking a 25 every other day. If you were halving a pill, please make sure it was a 25 you were halving and not a 100!

I had my levo increased from 75 to 100 in December and took another TSH test in January. My TSH dropped from almost 5 to under 1. The Dr was concerned that he’d overdone it and asked if I’d noticed anything such as panic attacks or an increased heart rate. He then checked my pulse there and then and got a reading of around 55 bpm - so no white coat syndrome that day!!

I had moved my levo from late evening to the middle of the night as due to my age (make 70) and diabetes I’m always up at least once each night. I would say I’m a very light sleeper but at usually get 6 hours total sleep each night - recharging my batteries at the same time as any tablet or phone!

[Hidden]

Some brilliant advice from everyone. Nothing to add except to emphasise the point about taking a different brand. I got wise to it thanks to this forum and the last time was offered Tevo, which apparently upsets many people, instead of the usual Mercury that I had from the start.

I noticed before leaving the chemist thankfully (they have to throw meds away if they leare taken out of the shop) and went back and they changed it to the usual

[greygoose]

Personally, I would interpret this entirely differently. I think that when you started feeling anxious and panicky, etc., just at the end of the six week period, it was a sign that you were ready for another increase, not a sign that you were taking too much. I think if you'd been taking too much, it would have affected you before the six week mark.

And, the fact that you felt better stopping the levo proves nothing at all. That's what we would expect to happen. It's an unexplained phenomena that happens to just about everyone that stops taking their levo, for whatever reason. But, soon the hypo symptoms start creeping in again.

However, now that you have stopped your levo for a few days, it's sort of put you back to square one. Probably not much point in getting tested, now, and best to go back to 125 mcg and wait another six weeks to get tested again. One day might not make much difference, but this is going to be what? Three days? Five days?

One thing is certain, if your TSH was 2.8 before the increase, you really needed that increase. And it's doubtful that an increase of 12 mcg would take you over the top into over-medication. It probably just wasn't enough.

[Venicefan]

What I was thinking is that Teva do a 12.5 mcg tablet of levo. If GP has prescribed that, it may well be causing the problems. So many people become ill on Teva.

[JAmanda]

I’ve been trying to do 50/75 on alternate days as agreed with my doc 2.45 tsh) but after weeks of trying have decided to do 75 every day as I feel awful on the 50 day - teary and heart racing (ie on the lower dose day). I’ll start on wed as am having bloods taken then.

[Ralph1985]

I was taking a whole pill 137 mcg levothyroxine by zandos. I stoped taking it for two days and felt good, but I know I have to take levothyroxine and so went back to my dose of 125 mcg one pill also same brand, I always take it at 6 am, follow all rules. I started feeling the same bad effects again today I spoke to my endo and said to stop taking the pills and go see him.

[Ralph1985]

I finally saw my doctor and he told me to reduce my dose by 37 mcg and now I’m taking 100mcg daily, took my first dose today and so far I’m good, I was told to come back In 6 weeks for blood work.