Hi i have been diagnosed with underactive thyroid. Im 26 years old. My doctor said my levels were really low so she started me on levothyroxine 100mg daily since June. I take this in the morning first thing then wait 45-60 min before eating. I still get tiredness, i get headaches and i always get a sore stomach and a couple of times a day i go to the toilet for number 2. Sometimes i feel really warm and sweaty. I get irritated and anxious. I still have memory problems. Just wondering if these are normal side effects from the medication. Has anyone here got their levels back to normal and stopped medication and didnt need it again? If so, how long were you on medication for?
Levothyroxine side effects?: Hi i have been... - Thyroid UK
Levothyroxine side effects?
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Coco1230
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That is a very high amount to give you to start with, usually you start at 25mg and work up testing every 6 weeks. Ask to see and endocrinologist, there is more to thyroid that just TSH. Join a thyroid group there are some on fb and there is one that is not on there but has their own website, not sure if i am allowed to name them but you can search, that is where I learnt I was being undertreated a lot are.
She's already on a thyroid group: Thyroid UK. This one. Bit rude to recommend others on the actual group you've joined.
Actually modern guidelines are to start on higher dose (if patient can tolerate it)
guidelines on dose levothyroxine by weight
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
hello so i spoke to my doctor today she said my level shouldve been between 10-20 it was sitting at 80 now its 16. she said sorry the dose was high and has lowered it to 50mg
That doesn’t really make sense
I suggest you get hold of actual results and ranges from receptionist
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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
Was last test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Reducing levothyroxine by 50mcg likely too much
yes thats fine will get the results
how do i post my results?
On a reply (like this one)
Choose the rectangle picture of mountains to add an image
Make sure to hide your name, DOB and NHS number etc
Looking for results for
TSH
Ft4
Ft3
TPO and TG thyroid antibodies
Vitamin D
Folate
Ferritin
B12
I went for a blood test after 6 weeks when i first started the medication and the doctor said the medication is working. I had sore stomach and headaches and asked if i could get a lower dose she said she isnt able to put my dose down just now but let me have another blood test last month again but i wasnt due one until end of october. Again my results r fine and im continuing with this dose still. Yes il have a look thank you!
facebook groups, of course, automatically exclude those who will not join facebook.
Both from getting and from giving support on them.
And groups which are not public do not provide information available to everyone, nor can information be challenged. They can very easily end up as echo chambers.
Whereas this forum is open to anyone - most posts are accessible without even joining.
I am not now, never have been, nor ever will become a facebook member.
Levo is not 'medication' in the normal sense of the word. It doesn't cure anything. It won't make your thyroid start working again. It is thyroid hormone replacement, replacing the hormone - T4 - your thyroid can no-longer make enough of to keep you well.
But, thyroid hormone replacement is for life. If you get your levels back to 'normal' and then stop taking it, your levels will drop again and you will get more and more hypothyroid. There is no known cure for hypothyroidism, I'm afraid.
The 'side-effects' you are talking about sound more like hypothyroid symptoms. And it's not really surprising that you still have them. 100 mcg is not a very high dose, even though it's often too high for people to start on. With hormones, you have to start low and build up slowly until you feel well and your symptoms have gone.
Your doctor should have retested your levels after six weeks on that dose and increased by 25 mcg. If she hasn't retested you, then get on to her and tell her you don't feel well and need a retest. She doesn't sound very well up on thyroid treatment.
Yes i did get retested after 6 weeks and all they said were to stick to levo and they cannot lower the dose as my bloods are ‘normal’ i am speaking with the doctor again on friday.
I doubt you want the dose reduced. You're far more likely to need it increased.
Did you get a print out of your results? If not, ask at reception for one - it is your legal right to have a copy, and not just trust your doctor to understand the results. You need to know exactly what was tested, and exactly what the results were, and keep your own records. If you don't understand them, just post them here - results AND ranges - and we can help you.
There's no such thing as 'normal' where blood test results are concerned. When a doctor says that, all he means is 'in-range'. But, that's not the same as 'optimal' because the ranges are too wide. It's where within the range that the result falls that is important. 
thank you soo much! il ask the receptionist to print out the results for me and il let u know what they are. thanks
You're welcome.
so my doctor has reduced my dosage to 50mg. she said my level was sitting at 80 when shouldve been between 10-20 now its at 16. i forgot what my TSH was but its now 0.03
Well, the TSH is next to useless as a guide to thyroid status once you are on thyroid hormone replacement. But, which level was 80? FT4? I cannot imagine that that could be right. Not on 100 mcg levo.
Do you take biotin in any form? Either by itself or in a B complex or a multi-vit? It is possible to have interferrence with testing, giving skewed results.
Or, alternatively, do you have Hashi's - aka Autoimmune Thyroiditis? But even then, 80 is unbelievably high for an FT4 - if it is FT4.
And when was it 80? And how long have you been on the reduced dose to get tested again? I'm afraid I don't really understand what you're saying here - the more I think about it, the less I understand.
sorry i meant before starting medication so in May and i think she meant that. she just said it shouldve been between 10-20 and it was 80. no i dont take any those and i just only started multivitamins. think it is hashis if it was that bad. so i start the reduced dose tomorrow of 50mg and next blood test is end of october xx
If your FT4 was 80 and the range was 10-20, you weren't hypo you were hyper. So, she wouldn't have given you levo, she would have given you an anti-thyroid drug.
And, if your FT4 is now 16, with a range of 10-20, the last thing you need is a reduction in dose, you need and increase. So, this still doesn't make any sense.
Are you sure it wasn't your TSH that was 80? That would make more sense. And, it would also mean that your doctor is dosing by the TSH, which is wrong.
You can only know if you have Hashi's by testing antibodies or having an ultrasound.
Multi-vits are not recommended on here for a multitude of reasons. At best they are a waste of money, at worst they are dangerous because they contain things you do not need.
not sure il get my results and post them up here
she just said my thyroid was fighting so hard
Not sure that 'fighting' is the right word. Struggling, maybe. But if it was an FT4 of 80 then it was over-working, not struggling.
how do i post my
results?
There are options for posting photos on the main question, when you first post. Also under every resonse: the oblong with the mountain and the sun.
Or, you could just copy them in like this:
TSH (result) (range)
FT4 (result) (range)
But, as this post is two days old, I would start a new post for your results, if I were you, so that more people see them. Not many people will see them tagged onto this post.
hi i have posted all 3 results so before i started medication in may , then july results are posted seperate then recent results. check them out xx
TSH range is typically 0.4- 5 Being hypothyroid TSH would be over 5
Ft4 range is typically 12-22
Being hypothyroid Ft4 would be low
Just testing TSH and Ft4 is completely inadequate
You need thyroid antibodies and vitamin results too
If you were over medicated Ft4 would be around 22-30. Very unlikely higher than that
ive posted my results plz have a look at 3 of the posts thanks xx
SlowDragonAdministrator
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
Which brand of levothyroxine are you currently taking
Have you had same brand levothyroxine since June
If not had blood test done since starting on levothyroxine, you need to get retested
Book a test for 9am (or earlier)
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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
About 90% of primary hypothyroidism is autoimmune thyroid disease, so it’s likely cause
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 TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Do you have results from before starting on levothyroxine?
Do you know if GP tested vitamin levels or thyroid antibodies already?
Hi my blood were tested after 6 weeks that time and they came back ‘normal’. Doctor doesnt discuss what level they are sitting at etc but i could ask on friday when i speak to the doctor again. im not sure about the brand the box just says levothyroxine 100mg north star.
Doctor said she cannot lower my dose as i just started but she took another blood test last month again bloods are ‘normal’ but my stomach is still sore everyday. do you think she is able to lower my dose or she cant as ive already been taking 100mg since june.
yes its the same brand ive been taking. doctor didnt check my vitamins but i take multivitamins and seperate vitamin D about 8 -10 hours after my thyroid medication
thank you
Northstar 50mcg and 100mcg are Accord brand levothyroxine (boxed and sold by Lloyds pharmacy)
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Posts that mention Teva
healthunlocked.com/search/p...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change if dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
thank you for the information. il have a look at all the links. so if i take it at bedtime how many hours do i eat before taking levo? or i could just take it through the night i usually do wake up x
If you reliably wake up every night, take in middle of night
Recommend getting a weekly pill dispenser
Incredibly easy to forget wether you have taken a pill or not
Weekly pill dispenser makes it so much easier
Remember to adjust last dose levothyroxine to 24 hours before test
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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
You say your stomach is still sore everyday.
Autoimmune thyroid disease frequently affects gut, causing low stomach acid and poor nutrient absorption
So it’s very common to have low vitamin levels
Improving low vitamin levels by testing, and supplementing if necessary, to optimal vitamin levels improves how well levothyroxine works
So ask GP to test vitamin levels and thyroid antibodies if not been tested yet
Request coeliac blood test at next appointment too
Gluten intolerance is very common
Always test for coeliac BEFORE considering trial on strictly gluten free diet
Multivitamins are never recommended on here
Too little of what we need
Most contain iodine too, not recommended with Hashimoto’s
Test vitamin D twice year when supplementing
Test folate, ferritin and B12 annually
Come back with new post once you get vitamin results
the vitamins help with my hair growth, and keep my nails strong too and skin good also i feel it will help with my energy levels etc
Recommended on here to regularly test vitamin D, folate, ferritin and B12
If any of these not optimal, supplement individual supplements
If taking vitamin B supplements, or any other supplements that contain biotin stop these a week before blood test as biotin can falsely affect test results
That seems a very high dose to start with personally I was started on 50mg then on to 75mg after another 3 month then finally 100mg after (9 months. Go back to your go and ask to be retested it could be a another part of your Thyroid profile that needs investigating,
my doctor doesnt really do anything she takes bloods again and it comes back ‘normal’ other than that she cant do anything
nice.org.uk/guidance/ng145/...
1.4.2 Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
Approx how much do you weigh in kilo?
Guidelines on dose by weight at 1.6mcg per kilo would be around 62kilo in weight (around 9st 12lb)
i weigh about 60kg
So you are likely on the right dose
I’m lucky mine has an interest in thyroid problems. x
Hi, The best thing is to ask for a printed copy of your results so you can keep track of things.
thanks i will x
The exact dose of Levothyroxine that makes us feel best often needs to be adjusted very finely... For example ....
Some of your symptoms at the moment could be due to a very slightly too high levo dose .. (the 2x bowel movements , the hotness, the irritability, the headache) and if that was the case ,a slightly lower dose of 87.5mcg mcg might be an improvement . Some GP's think you can only adjust by 25mcg increments because that's the smallest size the tablets come in.. but other GP's are better at maths , more creative , and experienced enough to understand that fine tuning is needed for some people .
(but just to make life difficult .... symptoms of 'slight undermedication' can seem pretty much the same as symptoms of 'slight overmedication' and we are all very individual in what happens. ~So NOBODY really knows if you are currently on 'a but too much' or 'not quite enough')
Once you are on the 'right dose for you' , the idea is that there are no symptoms.. it doesn't always work out that way .. but that's the idea.. many peoples symptoms are not 'because of the Levo' , but because their dose of Levo is too much or too little.
But since you've only just started ... (june to october is 'only just' it thyroid terms ) other factors need considering....
When we start taking Levo, if we go straight onto something like the full dose we eventually need, TOO quickly.. then we can also have similar feelings to those that a slightly too high dose would give us , and it could take a few moths for them to slowly improve, as the body that had adapted to run on very low levels of thyroid hormone gradually gets used to running on more again.
Because your GP said "your thyroid hormones were very low " it could be you were very hypothyroid , and that is partly why she chose to put you straight on 100mcg , and possibly why she doesn't want to reduce it at this point .. but we need to know your blood results (the actual numbers, not the opinion of 'normal') to see if what she says makes sense ... or not.
Not all GP's know what they're doing with the finer details of thyroid treatment, so it's best we don't assume they do, and check their decisions by understanding the numbers ourselves.. Your bloods may well show you really shouldn't reduce your dose at this point and should stay on the same dose for another few months to get some stability.. but it may also be the case that there is no reason at all why your GP couldn't have very slightly reduced your dose after you last blood test and she just didn't realise how to do it without dropping to 75mcg ... (it's simple .. they prescribe 50mcg and 25mcgs tablets , and you take 100mcg one day and 75mcg the other.. it evens out to 87.5mcg /day .. or you split a 25mcg in half each day .. or many other variations of averaging it out over a week to get a finer adjustment than 25mcg)
GP's education about thyroid related symptoms is woefully inadequate. but people with experience of adjusting their doses over time understand you sometimes need to be more subtle with doses than the GP is to get rid of symptoms.
eg .
125mcg became too much for me (over frequent bowel movements , tense painful stomach , sort of a cystitis feeling , but not cystitis , reflexes were really jumpy at noises, odd back pains, exhausted , terrible sleep) .
but 100mcg was clearly too little (food just sat in stomach . like digestive system had just gone to sleep, chronic constipation, wasn't safe crossing the road , forgot which shop i was going to etc ).
112.5mcg seems about right. digestion sorted within a couple of weeks , go to loo once a day , within about 6 months all odd pains were gone , and realise i sleep better than i had for ages.
My blood results said i was 'taking to much' on 125mcg , but they also said i was taking too much on 100mcg.. so blood's aren't everything , you have to put them together with symptoms and understanding.
After 7 months on 112.5 my bloods looked better even though they 'd previously indicated 100mcg was too much.
Soo .... get hold of your actual numbers from diagnosis (before any levo) , and the last 2 tests done on 100mcg and it will be easier to tell if it's more likely you need to stay the same dose for longer , or take a little less ,or need a little more.
You want the results [and reference range] for :
TSH (Thyroid Stimulating Hormone) ie. 0.0 [? -?)
fT4 (free T4 / free thyroxine) ie. 0.0 [? -?]
They may not have done fT4 , some GP's just go off TSH ,, which is not so informative as seeing both together.
ideally fT3 (free T3 ) , but this is very unlikely to have been done by NHS.
You say do not mix brands, my chemist kindly put all our meds. in daily doses. As they seem to be working I do not think it matters. What do others think. I do get tired but I am 72 with a fairly active life.
First of all, if everything is working, that is great.
But:
Some people undoubtedly find significant differences between makes.
Levothyroxine tablets are sensitive to light, heat, humidity and oxygen. All of which are reasons to avoid putting tablets into daiy dosing packs. It is probably not too bad if you take a few out and put them into daily pots, but doing it weeks ahead is an issue.
Daily dosing packs will often include other medicines and, if they do, it at least encourages taking other medicines at the same time as levothyroxine which is also an issue.
mixing/changing bands.....
For the first 12yrs i was on Levo, my chemist usually gave me the same brand , with only an occasional change , and then it was only to one other brand. and they would give the same one for several prescriptions, And i also got 3 months prescribed each time. I felt pretty stable. not 100% but stable. i knew what i could do and what would be too much. i could plan my life.
Then i moved and the new place ,it was every 2 months, and more often than not it was a different brand each time, and there were 4 or 5 different brands . I went downhill... i kept having months where i felt better, then months where i was no use. and i couldn't see a reason. I started to wonder if one particular brand (Teva) just made me feel 'slower ' than the others. and another (Mercury) felt 'faster. But i thought tablet brand couldn't make any difference and the differences must be just my imagination.
As time went on i paid more attention to which brand i got and how i felt. Over a couple of years it became apparent that i'd be having a good few weeks then get Teva Levothyroxine, and within about a week and a half i'd be feeling much less good. At this point i started taking my own observations on differences more seriously.. and lo and behold , a few yrs later when i came here i found many similar stories.
So now i avoid Teva , and try to keep the other brands as consistent as possible .. i had to change chemist to one that would be helpful in this , as the one attached to the GP's were very condescending about the idea of different brands having any effect. and just said "we only get what we're sent, there's nothing we can do "
The differences may only be very subtle for me (unlike some people), but life's hard enough without having it made harder by a change in brand moving the goalposts every couple of months.
Recently the MHRA have acknowledged that some people do have negative affects from changing brands , or have a particular brand they have bad effects from.. so they have now written to Chemists and GP's to tell them to keep tablet brand consistent for these people. and also to try them on liquid Levo if all brands are a problem.... So it seems it wasn't ever 'just my imagination'
Hi coco1230 I’m on levothyroxine and I have the same symptoms you just described and I was getting worried because I didn’t know if it was the medication or something else so I’ve got a doctors appointment maybe it’s worth you seeing a doctor if you don’t get any joy .
i have spoke to doctors they cant lower the dose and theyve checked my bloods which are ‘normal’ as they said o they arent doing anything about it. i have another appt today x
Hi, I have a pituitary gland tumour which affected my thyroid gland, basically it was hardly working. I started medication for my thyroid around June also and currently on 75 per day, I see the endocrinologist on Friday for an update.
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