Struggling after levothyroxine was reduced.Have went from being agitated with palpitations insomnia and feelings as if I was marching everywhere.To being down depressed fatigued and just want to hide from everyone feeling fearful.Feel as if it’s due to the levothyroxine but doctors are saying all my results are ok.Was on levo for around 10 years and it was never checked didn’t know I had to get it checked yearly.Past two years have been terrible! Got it tested again first in 2018 due to palpations insomnia and marching everywhere and high blood pressure that was hard to get under control.The test came back in the red to high of something (memory has become terrible and can’t take anything in) and for over a year they kept coming back the same.One doctor said it was if there was to much levothyroxine but didn’t want to change the dose.Another doctor dropped it from 125mcg to 100mcg and about 5 weeks later the deep depression and fearfulness started and still bad insomnia.Anti depressants aren’t working either.Tried putting the meds back up myself and a week later I was having wave sensations running through my body and bad anxiety and palpitations.I was dropped down to 75mcg after that then after 7 weeks back up to 100mcg for two days then 75mcg the next to and so forth.Has anyone had anything similar or if it could be the levothyroxine not agreeing with me now? All my test are supposedly in the middle and ok but they said that in the first place before dropping the dose.Could Someone advise me on how to go about trying efra and the costs? This is a long thread but I’m at my wits end and I apologise profoundly! If I sound dramatic
Private prescription and cost of efra - Thyroid UK
Private prescription and cost of efra
Hi there jacobite33
I think this is your first post, so welcome.
I’m sorry you’re having this dreadful experience. Before anyone here can advise you on anything, it would be useful if you could share some recent blood test results, with ranges. Ideally TSH, FT3 and FT4.
Also vitamin D, folate, ferritin and B12 if you have them.
Localhero (That is a movie set in the village of Ferness in Scotland and with Burt Lancaster)I am awaiting on the last three results being sent from my doctors surgery
Will post them on when I get them
I’m wondering if it could be the levothyroxine that it isn’t agreeing with me in some way as they tell me everything is within range now
Thanks for replying!
Just because results are “within range “ doesn’t mean they are good enough
Ft4 range is usually 12-22. Most people when adequately on just levothyroxine will have Ft4 at 19-21.....sometimes a bit higher
TSH always below 2. Often when adequately treated TSH will be well under one. Sometimes below range.
Ft3 must be at least half way through range. Often need it in top third
All vitamins need to be optimal too
(Yes, Local Hero is my favourite film, hence the name here!)
What level and brand of T4 are you taking?
While some people do have problems with some brands (eg I can’t tolerate TEVA), I don’t think it’s the Levothyroxine that’s causing your issues. Rather, it’s the amount you’re taking (ie, not enough).
Do read and respond to SlowDragon It’s not just a case of being in range. You need to have levels optimal to feel better.
(Also welcome to the world of GP/endo insanity when it comes to thyroid health!)
Welcome to the forum
How much levothyroxine are you currently taking
Do you always get same brand of levothyroxine
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12
Vitamins need to be at GOOD levels for levothyroxine or NDT like efra to work
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you know if you have Hashimoto’s
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
(If/when also on T3, or taking Efra make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
Essential to test BOTH TPO and TG thyroid antibodies at least once (usually, but not always, done at time of diagnosis)
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
If neither of these are high that still doesn’t rule out Hashimoto’s
20% of Hashimoto's patients never have raised antibodies
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
Hello Jacobite and welcome :
I was on Levothyroxine and now I am on NDT - not Armour - but another similar product.
The first base requirement when taking any thyroid hormone replacement is to ensure your core strength is strong and solid.
We need bench mark numbers and ranges, posted back up on this rolling screen for forum members to offer comment and considered opinion.
Thyroid uk is the charity who support this amazing forum and you can read further around everything thyroid on their website.
If your doctor can't action the appropriate blood test for you, there are private companies, on the Thyroid uk website, who can.
It's the first step in taking back some control of your health and we've all been there, but now better equipped we come back on here to help others in their thyroid health journey.
Hi PennieannieFirst things first
I apologise for not noticing your reply to my post and thank you for taking time to read my post and replying with your advice
It’s deeply appreciated!
Im all fingers and thumbs and bouncing around this site like Mr Magoo!
Thank you again and stay safe!
Folks I had a novel typed for a reply twice but you would need a big bag of popcorn a Diet Coke and a tub of Ben & Jerry’s to get through it!Feeling a bit embarrassed as it has been one thing after another and constant
Feel as if I have a bad case of oral flatulence!
Have been on another forum too but just finding things very difficult to take in and read
I’m on levothyroxine 100mcg 2 days then 75mcg repetitive
Yes I had a change of brands back in 2017 or just before.That’s when I feel all this started and has gradually got worse and to the stage I don’t sleep at all just go in to a right fatigued state up and down and toss and turn all night.Like a wee puppet on a string with a face like a dead kipper!
Im taking liquid vitamin B12 again own choice as they say it’s ok.Had gastroenteritis for 3 weeks and finally they took blood tests back in may 2019 and was very low in vitamin D and folic acid which they never told me or got back in touch with a repeat prescription as I found when I had to go back months later.Oh and around that time I developed Rosacea and when it’s Sunny I look as if I have been dooking for apples in the deep fat fryer.Got to laugh though!
Pity you didn’t share your novel! 😉
My opinion for what it’s worth (and, to be clear, I’m no expert, just another thyroid patient who is wising up on how best to treat herself), you need to do a number of things. The first is to stabilise your T4 dosage. It sounds like your dosage has changed frequently recently (?) It takes the body about 6 weeks to adjust to a dose change. Lots of change is very disruptive for the body. Second, I would get my blood tests (Thyroid plus vitamins) done privately as advised here ASAP. Then, bring them back to this forum and we can give you a view as to what is going on.
I know it’s hard not to try different things in the hope something sticks. Thyroid diseases make us feel so tired, depressed and hopeless sometimes (and let’s face it, the doctors are mainly clueless) that we will pretty much do anything. But I think it’s worth being a little canny and patient, and adopting a more systematic approach.
Thank you local hero your being one and “a canny lassie”Problem is I started taking extra myself there for three weeks hoping I would feel better.But felt a lot more buzzy and agitated again so will need to wait six weeks.That’s twice I have tried upping my dose
All I know is I am not getting the heart shivers and palpitations anywhere near as much when I was on 125mcg per day just a deep fatigue and very low mood on top of not sleeping
I’m hoping to get my past three blood results last one was done in early January soon from the docs
All I’m thinking is even with everything coming back in the middle of the graph now that it’s the levothyroxine.So I would just like to try come of it altogether and see how I feel.All I know is I’ve went from high to a low .Even had a free hurl in the van with the blue lights on a while back.Then they gave me a lovely cup of tea and told me everything was ok but I’ve never been right since
Think the tea was just a way of an apology offering for shaving me chest!
Your option is valued and appreciated.I’m just a construct worker that can’t understand what’s been going on! And thank you again!
I’m sorry you’re having such a crappy experience. You must have collapsed? That happened to me once in the early days of treatment when I was undermedicated.
FWIW, I would echo what tattybogle says below. Do not just come off your medication. I think you could make yourself very ill.
"Like a wee puppet on a string with a face like a dead kipper!" ,
lol 
Anyone who can come up with that (brilliant) description of the reality we often face, can write a novel for me to read anytime they like ... even if it is verbal flatulance
x
I'm just guessing at the moment, until we've seen your 'normal' results (bear in mind, size 5 is 'normal ' for feet...... unless you are size 6... then 'normal is no use to you and you'll feel really uncomfortable and get blisters)
Any way , in my recent experience of dropping Levothyroxine from 125 to 112.5 then 100 then back to 112.5 i have learned that doctors sometimes make too big changes , (just because 25mcg is the size tablets come in) and also that they sometimes make another change too soon after they first one didn't provide the blood tests they were expecting ,
A difference of just 12.5 mcg is enough to make the difference between my digestive system going to sleep totally and leaving me feeling dreadful, or being much better.
I've also learned that it takes at least 7/8 weeks on a changed dose to really know how i feel on it .
And i'm sure the body really doesn't like it when Levo dose gets changed, so even though we may have to do it , it should be done in the smallest possible increments and as consistently as possible .
A recent good analogy on here was that treating thyroid is like steering an oil tanker.
A very small turn on the wheel is a big change in direction , but you have to wait for the front of the boat to move in response. if you turn the wheel more before waiting you end up going round in a circle.
I do wonder if this is a bit of what is happening with your doses.
But we'll see.... when you get hold of some 'normal' results and the results that prompted the dose changes.
Oooops!A wee scarecrow whispered that yin tae mae yin braw moonlicht nicht as I bounced along over the frosty turnips and between silvery silhouettes towards the church spiral
I see you mentioned certain ailments in your profile.Not being crude but my waistband at my ankles duties is away to potty since I had my dosage lowered.Nod of appreciation from me for being totally honest and laying it bare.Bottoms up!
Geez you have me laughing here at my own nonsense!
Yes time will hopefully tell?
lol
I don't like turnips you can have 'em... but i'd better not catch you in my field at night nicking swedes
There's a sign on my gate says "Anyone found here at night .... will be FOUND here the morning"
P.s re. your comment to
Localhero about wanting to try coming off thyroid replacement hormone totally and see how you are without ..... it's been tried by a few on here , the usual outcome is feeling inexplicably good for a few weeks , followed by turning onto a zombie /falling off a cliff , having to restart taking it and taking months and months to get back to how you were before you started the adventure. ask @pennyannie , she tried it.
If that’s the case I won’t turnip in your garden during the night!The way I’ve understood it is people are better on NDT or EFRA no? Just by with what I’ve have been reading
Oh and I really appreciate your reply and thank you as I never did earlier
"i won’t turnip in your garden" lol
It's very much an individual thing , no 'rules' which work for everyone i'm afraid , and don't trust anyone who says there are.
Some do fine as long as Levo dose is correct for them , and isn't messed about with by doctors panicking about low TSH.
Some do fine as soon as they add a tiny little bit of T3 to their Levo .
Some can't get on with T3 , find it a bit harsh , and much prefer NDT, (but can't get hold of it . or when they do the manufacturer changes it , or a swine flu problem means they run out of pigs to use which has been an issue recently)
Some just need to get their vitamin B12, ferritin, folate, selenium sorted out.
Some get sorted quick and stay sorted, and most keep on looking , tweaking , for a long while , and just when you 've got it sorted something in you changes again, and you have to tweak stuff all over.
And that's an oversimplification .
P.s i only noticed your reply by chance, there is a reply button under each reply , and one for the post. When you use the one under the reply you are responding to it 'alerts' the person you replied to, and shows up as this one will -- indented and with "in reply to ..." after your name
Ah think this is it........Wee tap to the back of the hand DUH! Everyday is a school day only thing missing is the short shorts,cap and the runny number 11’s on my top lip (not being crude there just had a wee mental image silly sense of humour)
I’m down 250mcg per week since they started dropping it from 875mcg per week.They were telling me everything was ok before and ok now.Doctor said the thyroid is a sensitive thing.Being brought down 250mcg I think is a lot for a sensitive organ and could explain the big change
Any ways of woes and wonder it’s totally confuzzling me!
Localhero and tattie-Bogel I will need to go back and re read what you both have wrote.Would just like to thank the both of you for replying and giving advice!
Every time I’m on to the doc I think he sits with the loud speaker on and two index fingers in his protruding lugs! Can’t blame him!
nope , u still doin it wrong
look
for
blue
'reply'
box
directly
under
here
use
this
and
person
will
receive
an
'alert'
(yellow bell)
to
notify
them
of
your
reply (i will look at results in a bit)
ooops! I honestly deeply apologise though!
Never used these before
Thought i was sending on my post
yes , that's the one !
Test results
bit hard to see, so ..... for those without good eyes :-
13/10/20
TSH 2.39 [0.27- 4.2]
fT4 19.5 [10- 22]
fT3 4.6 [3.1- 6.8]
08/01/21
tsh 1.9 [0.27- 4.2]
fT4 19.3 [10- 22]
ferritin/ b12 / folate . i don't know enough about, but somebody else will.
SlowDragon
My best guess at the moment is that the reduction from 125 to 100 was more of a reduction than was needed, resulting in feeling crap....
(they are a bit heavy handed and just adjust in 25mcg's cos that's what size the tablets come in, but it's often to big a change for such a finely balanced system)
and then ? possibly that your experiment to increase again might have influenced the next blood test and caused them to lower Levo further to 75 which would have made the under medication worse.
Then they noticed the effect and put it back up to 100/100/75 etc which from the look of your TSH being now 1.9 is still not enough. so Levo dose probably still needs increasing. in my opinion.
TSH is usually best nearer 1 and many don't feel well until it's under 1.
TSH (Thyroid Stimulating Hormone)is a signal from pituitary to thyroid gland, asking for more or less thyroid hormone to be produced by thyroid (or prescribed by Doc).
TSH 0=enough already TSH10 = make more quick.
Imagine T4 /3 (hormones) on one end of a see saw, and TSH on the other.
As T4/3 go low ....TSH rises,
As T4/3 go higher ... TSH falls.
Test results
Test results
Forgot to put these on earlierWould be grateful for any comments
No rush
Thanks!
Tests in Oct 2020:
Ft4 was 80% through range
But Ft3 only 41% through range
Helpful calculator for working out percentage through range
So very poor conversion
Recent test...doesn’t include Ft3
TSH has reduced
Folate is too low
No vitamin D test
Suggest you get vitamin D tested
Come back with new post once you get results
Vitamin D NHS postal kit
Meanwhile Start improving low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Slowdragon I haven’t thanked you yet for being so helpful.From the heart I really appreciate you taking time and replying with help and advice your sweet thank you!Can’t get my head around anything at the moment even struggling navigating the site.Head feels full of gas might change my name to helium head
Once again thank you and stay safe!
Localhero tattiebogle thanks again for your help and advice! Oh and apologies again for replying in the wrong places but I’m still bamboozled with things!
Not very bright but can lift heavy objects Ug!
You just got to laugh at it!
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