Over med Symptoms worse at night ?

[Daffers123]

can anyone explain why the awful symptoms I get from inadvertently taking too much T4 always happen during the night ?

[helvella Administrator Thyroid UK]

Probably because the effects of taking levothyroxine have all sorts of time delays/factors associated with them.

Take your tablet and about two hours later your blood T4 level peaks - then slowly drops over the next few hours.

Your peak T3 as a direct effect of taking that levothyroxine occurs about 48 hours after taking the tablet.

The effects of T3 ripple through for, maybe, two or three days.

But all the above are "typical" - your timings might vary.

When do you take your levothyroxine? If you currently take it in the morning, try taking it at bed-time.

Also, whilst everyone can make a mistake, I urge you to do whatever you need to ensure you take the right dose! Alarms. Writing on paper. Pill pots. Apps on mobile phones. Temporary tattoos on the back of your hand when you take your dose.

[Daffers123 in reply to helvella]

Thanks so much for explaining. It's very interesting all the time delay stuff. The 'inadvertent' comment was because I am trying to add in T3 but didn't reduce T4 so I got over educated again!

Yes I will try the Levo at night.

Liked the tattoo idea....

[Hidden]

Might it be that during the day you're distracted and busy? I always notice the flushes and heart beat more at night.

[Daffers123 in reply to Hidden]

Could be -I think everything can seem worse at night.

[Rosierebel]

I don't know but I have had the same with side effects which I have been experiencing since last December, I think it;s because we are lying still. I find it very difficult to deal with I went onto Adartrill about three years ago for restless legs, actually it was restless body, my whole body would jump and twitch at night keeping me awake, like someone was prodding me in my side with a stick, awful. Found Adartrill very good, however when I was in hospital last year they gave me Ripinol instead which is a different brand of Adartrill and that was awful and gave me side effects, can't win. I am now coming off Levothyroxin and going onto NDT ERFA which should be arriving in the next day or so, as I now can't tolerate Levothyroxin anymore.

[Daffers123 in reply to Rosierebel]

Thanks for your reply. It's not fun being awake all night with the awful symptoms. I too have suffered from RLS on and off. It's miserable isn't it. Have not had any med for it yet.

What does Levo do to you ? Is it causing your RLS ? I have some Erfa but I'm scared to try it. Will you go straight from T4 to it or try a mix .

I am running out of things to try. Am considering LDN

[Rosierebel in reply to Daffers123]

The ERFA has just arrived from Tollesbury Pharmacy Maldon, I am going to start it tomorrow. The side effects I've had from Levo have been so bad I had to stop taking it, delays in getting a prescription for ERFA meant I had to go back on it last Monday but by Wed the restless legs and headaches were back, very ill yesterday and this morning. Going on ERFA I hope tomorrow, so will give an update as to how I am getting on with it. Most people I have come across online seem fine on NDT, so am hoping it suits me. I go to the Endo in June and have been told they may prescribe T3, which I will try but as I think it;s synthetic as well I am not sure if it will work, but will try it. I will keep updating these sites. I am thinking also of starting a campaign re the NHS not prescribing NDT which was used up until the 1970's I think with very few problems then the drug companies got involved and developed a synthetic version and that's when the problems started. So NDT has been around for 100 years believe it or not, not new. Hope this helps.

[Daffers123 in reply to Rosierebel]

Sounds like you've been really unwell, how horrible. Those symptoms are so bad. Did you buy the Erfa without a prescription from Tollesbury ?

I have been wondering if the T3 I have tried (Cytomel, and currently Perrigo) are upsetting me because they are synthetic..I hadnt thought of that until you mentioned it.

Which brand of Levo have you tried ? I tried all and can manage just about on Wockhardt but don't feel great by any means.

Good luck with the Erfa. How much will you start on ? Would love to know how you get on anyway

[Rosierebel in reply to Daffers123]

I had to get a prescription from a private doctor for ERFA which was difficult to find and expensive but finally got it. I have tried three different brands of Levo all gave me side effects, but each had their own set of side effects. Wockhardt, Mercury and Advantis. That's why I am wary of synthetic medication I suppose. I am hoping ERFA is OK but have never been on it before so it's an unknown quantity to me, it's wait and see time. I have a friend who has been ill like this for 13 years, I wish there was more research and less criticism of Doctors who try to take it forward.

[stoneym]

Hi Daffers123

I sympathise, as I too sometimes dread going to bed, knowing my symptoms are worse at night. Laying down, my heart beat is bumpy and scary; it jumps all over the place and legs have this urge to keep moving; eventually i go off to sleep sat up, with four pillows. This seems to help. I don't even bother trying to lay down flat any more. But overall symptom are reducing (after 3/4 years of it) - haven't had the night-time tachycardia, sweating and doom for some while now. I'm taking Erfa, and currently happy with it. But I haven't tried anything else, so can't compare.

S.

[Daffers123 in reply to stoneym]

Did you really have to put up with it for 3/4 years ??? thats unbearable. I know excatly what you mean about the pillows, I do that too and just hope eventually to drop off. Doesnt always happen! And the LEGS!!!

Is it the Erfa which is helping, do you think ? How did you dare to try it, I am so terrified of making things worse....

Did you start on a low dose ? I do have some already so might get brave.

[stoneym in reply to Daffers123]

Hi Daffers

For 3/4 years I didn't really know what was wrong - it felt like nothing worked properly. GPs couldn't cope with all my symptoms. I had tachycardia, exhaustion and unable to cope with ANY stress, dreaded night-times waking up with tacky, sweating but shivering with a feeling of doom.. I rarely went out and if I did, suffered severe symptoms for days.

I had Sarah Myhill test showing I had Chronic Fatigue. So I was focusing on all her supps. and advice; plus Sinatra's heart sups. Staying in my comfort zone, avoiding as much stress as poss. I made tiny improvements but was still house-bound.

Then I found a Test result from 5 years ago showing low T3. At the time I didn't know what that meant.

Started reading about thyroid on HU, asked my GP who wasn't interested. I found a Doc on Louise's list was only 5 minutes away from me and went to see him last year. He put me on Erfa straight away.

He then advised me badly, re dosing and testing & i endured another 6 months of roller-coaster misery.

He started me on half a tablet, and didn't raise correctly. Then he raised it, then reduced it! I became very ill again.

You'd be better to follow the dosing advice on here.

So I decided to do it myself, just as he happened to retire, in December. For 5 months I've kept the prescription going… (but will have to pay for an Appointment for a new repeat soon)

I now take 3 tablets a day (although he only prescribed 1 a day).

Six weeks ago I realised some energy had suddenly, unexpectedly returned; suddenly I can do so much more. I can hardly believe I'm beginning to feel half way back into the real world again - after being practically house-bound.

I think it is the Erfa but I also take lots of vits. and minerals as well.

I've still got symptoms. (arrhythmia is the worst) I'm still pacing and cautious but It feels marvellous to have some energy back and be able to do things and go out. I just hope it lasts!!

Go for it, and good luck! it's as if it took some months for NDT to soak into all the cells.

S

[Daffers123]

I'm so pleased to hear some good news!Great that you're doing better - I do hope it continues to improve your energy etc.

I couldn't cope with any stress (not even anything tense on the telly) - endo in Harley St said was adrenalin/cortisol but instead of explaining his best offer was ADs, psychiatrist and beta blockers! which I didn't do as I knew it was thyroid balance.

I will heed your comments about dosing -it's a bit worrying knowing when to raise but will be brave and try some Erfa which I bought on Internet .

thank you again