Doctor again

[Andypandy30]

Hi my story is since increasing levothyroxine from 75 to 100 mcg I have experienced severe anxiety and nervousness and shaking .I am sorry for all the posts but feeling very unsure of what's been happening to me as doctor still insists on staying on 100 and to take diazepam when I feel anxious .I know the feelings are coming from my body though and feel she thinks it is in my mind .i am not sleeping well and I have no appetite and after calling the out of hours doctor again I have to get another blood test tomorrow .I had two infections prior to my raised TSH and a T4 of 14 which I feel now has affected my results .is that possible and I don't think I want to take the 100 again after today .but what do I take

[tattybogle]

copied from a reply i made to someone else so it may not apply to you exactly , but the general principle does:

Waiting 6 wks fro a blood test can seem impossible if you really don't feel well , but it really is the only way to know where you are .

weeks 3/4/5 after any dose change can often feel very unsettled and it's easy to believe "i just can't tolerate this dose , it's wrong for me" , but by waiting on same dose until wk 6 and afterwards thing often begin to improve slowly.

if we have already done 3/4 wks on a dose , there is no point changing it at this point , however bad it feels ...it makes more sense to stick it out until at least 6 wks, get tested , and then decide . Blood tests done before 6 wks are largely useless for decision making , as everything is still potentially changing / settling down.

6 wks seems so long , yes. but people who change dose before giving it a fair chance to settle in and without waiting for reliable blood tests usually end up lost and confused for months and months , while still feeling rubbish .

So preferably, stay on 100mcg until you get the results from the blood test, see what the results are , then use the results to help you decide what to do next .

if you do decide to change dose early , ie to try 87.5mcg rather rather than 100, then , however it feels , give that a good 6 wks at least to settle before worrying how it feels .

remember , it is very common to feel rubbish in the first 3/4/5 weeks after changing dose . but that doesn't mean the dose won't feel ok once the body has had enough time to acclimatise itself to the new levels.

i have been absolutely convinced at week 5 that a particular dose was wrong ...... but was forced to wait on that dose for one reason and another .. and lo and behold , wk 6 was a tiny bit better , and by wk 12 ish ,,, i realised i felt better than i had on previous dose , and was sleeping better than i had fro many months .... so feeling awful in the early weeks after a dose change does not mean thing won't improve as the body adjusts to the change you have given it .

[FallingInReverse in reply to tattybogle]

I’ve written that last paragraph myself in other posts almost word for word. As I read it I actually thought I was reading my own words! I once searched “week 5” on this forum as I was so fed up and losing my patience, and found lots of company to help me wait it out : )

[tattybogle in reply to FallingInReverse]

yes ,and even though i KNOW this stuff from experience of changing my own levo doses for 20 yrs, i have still been wrong footed by how i have felt in the first few weeks of adding some T3..... currently my brain is all over the place and i was getting really impatient last week , you know how it goes "i want to test now, i want to change dose tomorrow , shall i change this to that , or move this dose to there, maybe i feel like this because this is the wrong dose and changing it will be better.... "

but i have lowered Levo by 12.5mcg and added 6 then 9mcg T3 during the last 6/7 wks , and i had a minor operation a week ago which floored me , and a week of steroid eye drops/ and antibiotics, which all adds to the time i need to wait before assessing how my dose feels and getting useful tests.

so "keep calm , keep an eye on the calendar, have a plan" is helping me keep things in perspective ., but it has been pretty hard to get my overactive brain to go back in it's box and shut up.

it is easier to regain some calmness about it once i have looked at the calendar and made my mind up that 'however it feels , i'm waiting until x date to do a blood tests ' .

[FallingInReverse]

Hi Andy,

Do you have anyone (a family member or a friend?) who can help you read the replies to these posts and who you can share what your doctor has told you? A hand to hold or a little human support might help calm you right now.

What you are experiencing is common for dose changes. Right now you need to set a 3-6 week dosing plan, and just have to wait it out, or additionally you can try the anti anxiety meds the doctor gave you..

Can you find and share your last blood test results from a few weeks ago? The one where you’d been in 75 mcg for 7 months? You haven’t shared any results with us yet and those are important.

A blood test tomorrow will not be helpful and could be misleading. You changed your dose 3 weeks ago and also if I remember correctly even in the last 2 days you dropped a dose.

You have all the info and input you need to decide what to do. Were you able to read the replies to your last post. Helvella and I shared pretty similar approaches that you could take.

The important part right now is to write up a plan.

I think you said

2023 and back: 100 mcg a day

January 2024 through August 2: 75 mcg a day

Aug 3 - Aug 18: 100 mcg a day

Aug 19: 75 mcg

Aug 20 ?

Aug 21?

What mcg pills do you have? Do you have a 75? Or are you taking 50 and 25s?

[Andypandy30 in reply to FallingInReverse]

Yes to the plan .I will get print out tmoro .I am so grateful for all your help

[Andypandy30]

Thank you .yes I have 50a and 25s

[FallingInReverse in reply to Andypandy30]

With 50s and 25s you can easily half the 25s and get a nice steady dose.

Get your results from around August 3. Those are the results you want to clarify your daily dosing against.

Keep us posted and hang in there.

[Andypandy30]

Thank you .it's just no one else seems to have experienced the extreme nervousness I have .I have checked on alot of posts .this is what is worrying me more

[tattybogle in reply to Andypandy30]

sometimes i find it helps to remind myself that nervousness / anxiety is "just your brain firing off signals , it's not real..... find a distraction, clean a cupboard, or watch a film "

[WestElf]

Hi, I’m sorry you are feeling so awful and just wanted to send some words of encouragement and say you are not alone.

I’m very new to this forum and only started levothyroxine in April. I increased my dose from 50mcg to 75mcg four and half weeks ago. The anxiety I have been experiencing since week 2 has been brutal. I have had severe anxiety in the distant past so I am no stranger to it, and I know techniques to help myself through it, but this experience is very very hard. It is an incredibly physical type of anxiety, not in my head, and is completely overpowering and overwhelming. I have found the last few days it seems to be coming more in waves rather than continuously and I’m having more calm moments, so I’m hoping that as I move past week 5 next week it will ease further.

This forum has been very reassuring for me the last few weeks. I’ve taken screenshots of messages that explain that anxiety is often heightened during the first six weeks of a dose change and in moments of despair I’ve looked at these messages to remind myself that it will get better and I’m on the right track.

I hope you can hang in there Andy and soon this will all be a distant memory.

[DippyDame]

As the others say you cannot chop and change your dose

For good health the body needs an adequate and constant supply of T3 so that it floods the cells, reaches the nuclei and attaches to the T3 receptors....then it can get to work!

Some sources advise that there is no reaction between levo and diazepam, while Drugbank states that, " the therapeutic efficacy of Levothyroxine can be decreased when used in combination with Diazepam."

If the latter is the case then your nervousness may be the result of reduced T4/levo which is a textbook symptom of hypothyroidism....you will find it towards the bottom of the following list

thyroiduk.org/signs-and-sym...

You really must stick with 100mcg for 6 weeks before testing otherwise you won't get a true picture of your thyroid status

Unfortunately there is no quick fix or short cuts....recovery can take a long time so we have to be patient and stick with the treatment.

Good luck!