I have been on 50mg levothyroxine for about a year after finally being diagnosed with Hashimoto's (I had TSH of around 7 and very high TPO antibodies). I have generally felt a lot better since being on the meds but the last couple of months I've had the most terrible fatigue, feeling like my body's made of lead despite sleeping 8-9 hours a night, and severe brain fog/forgetfulness. It's starting to affect my work and daily life.
I had a routine blood test a couple of weeks ago (in the morning, fasting) where my TSH was 2.7 and everything else was normal. Despite this I booked an appointment at my surgery and today saw a different GP than my usual one who was completely clueless about my medical history, kept talking over me, clearly had no idea about anything thyroid or autoimmune related and just kept insisting everything's normal so I must have depression or something.
I feel totally defeated and wondered whether anyone on here might have any advice or experienced similar? Could it perhaps be that 2.7 isn't in fact optimal for TSH and I need a higher levo dose, or maybe it could be an indication of something else wrong?
In addition to the 50mg levo I also currently take Dianette (for PCOS), vit D, B12 and selenium supplements.
Thank you.
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rustymoon88
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50mcgs levo is just a STARTER dose and should be titrated upwards in 25mcg increments with bloods every 6-8 weeks, until your TSH is at or just under 1 with resolution of symptoms.
I would make an appointment with your usual GP or one that is helpful to discuss a 25mcg dose increase. Also ask them to test ferritin, folate, B12 & D3.
Thanks so much for your helpful reply and the link 🙂 I spoke to someone at my work who has Hashi's too and she also said TSH should be around 1 so this makes a lot of sense. I will see if I can make another appointment to see my regular GP who knows my history and discuss this.
With this condition you do need to self advocate a lot. GPs often keep us under replaced as they have fears about over prescribing, but not giving us enough keeps us sick and unwell. Insist on the 25mcg dose increase and don't back down!
That's very true, I only got a diagnosis in the first place after pushing my GP for a thyroid panel/antibody test following a year of being fobbed off while getting more and more ill! Fingers crossed I can get him to up my dose.
When I was in this position I upped the dose and then told them and they upped the script no quibbling! Check your prescription renewal dates and if you have enough in hand start by adding a little extra 😏
No, absolutely don't take 2! Get a pill cutter and cut into 4 add a little every other day to start with or twice a week... Levo is slow uptake so uneven dosing is fine 🤗
You often find the pills have a groove and if you push down hard on them they split in half
Get the NICE Guidelines on Thyroid under your belt there’s plenty of ammo there to bring them into line. I self advocated - fought my way to a therapeutic dose. I wrote my bio as a case study and have posted my Dr’s Report- me to them to get my doses increased 😂👍 clicking on my icon will take you there.
Knowledge is power and it flows both ways so as soon as the balance tips in one’s favour the road is a lot less rocky.
All I can say is go for it but be armed with knowledge. They are impervious to people saying I feel this, I feel that. You need to present your symptoms etc in a more dispassionate way than they see usually - so when I was battling for a dose increase I would report how symptoms disappeared after a dose increase - the order they left me, the lag period etc then quite dispassionately explained how the effect wore off, when it wore off and the order the symptoms returned. I related this back to blood test so it was in context. I essentially did the work for them- all the thinking and gave them the solution- I used references to head them off at the pass on flawed thinking and got what I needed. Submitting a report post will tell you more. 😉
we seem a bit similar .. i was diagnosed and treated with TSH 'only' 6.8, but extremely high TPOab.
TSH does NOT tell the GP everything .. (even though some of them think it does) .
Healthy people usually have TSH under 2.5 , most common is around 1
My TSH behaved quite oddly ... it stayed 'stuck' at around 2. 5ish on 50mcg / 100mcg / and 150mcg levo .
GP's CANNOT predict what someone's TSH will be on an increased dose , so if symptoms suggest a dose increase might be beneficial and TSH still has 'room' to increase dose , they should at least try the increase to see what happens.
On 50mcg Levo after 7 weeks my TSH was 2.9 ( i had felt 75% better for about 2 weeks )
increased to 100mcg for 5 months ... TSH was 2.5 ( i had felt about 75% better for about a month)
increased to 150mcg for 3 months ... TSH was 2.7 ( i had felt about 75% better consistently)
Stayed on 150mcg for about a year ,.... (i then started to feel less good again, so
tried a bit more 175mcg for a few weeks but didn't feel better... went to GP TSH was 0.001
Dose reduced to 150mcg.
stayed on that dose for 15 years .
if my GP had gone solely by my TSH being " 2.5 ish is good enough, it's in the normal range , go away/ have some antidepressants "... they would have said 50mcg was a 'good enough'
They would have been wrong .
To adjust thyroid hormone dose properly , GP's need to pay attention to symptom response and fT4 levels too , not just get the TSH "somewhere in range"
So..... go back to GP with links from that list of recommendations and ask GP for "a trial increase to 75mcg to see if it improves your symptoms" .
don't take no for an answer....while your TSH is still over 1 , they have no grounds whatsoever to refuse to try it.
if they say they don't want to risk 'over treating you" then you point out that they have absolutely no way of predicting how low your TSH will be on 75mcg unless they try it .
*Note* .. i increased my own dose by 50mcg at a time , and then got GP to test bloods after i'd been on the increased dose for quite a while ( and he then said ok because TSH was still in range ) ..... but this was long time ago and i had no idea what was doing .... i would NOT recommend anyone increase by 50mcg at a time... and i now i suspect was slightly overmedicated for 15 yrs because i never tried 125mcg or 137mcg.
Also it was easy to do then because they gave us 3 months worth of tablets at a time and filled repeats whenever we put them in .. nowadays it would be extremely hard to get enough tablets to increase dose by yourself in this way.
Thanks so much for your reply. I've heard a lot that what GPs call 'normal' for TSH actually isn't. I'm going to see if I can speak to my regular GP about increasing my dose - it sounds like this is what I need and if not it can always be reduced again.
No such thing as normal - really- it’s a total misuse of the term- as a minimum they should be saying “Well you are in range but where you sit in the range is uncertain- that’s why we go by symptoms for fine tuning treatment”- but that is my fantasy and not the reality 🙄
There is a significant, widespread knowledge gap that needs plugging in the medical profession requires a little stats and common sense…… hmmm 🤔
Honestly I was a bit taken aback by how clueless he was! Was like he was just making wild guesses based on the word fatigue - suggested depression (or rather, that it was in my mind) and when I said no he said it could maybe be CFS, totally ignoring all the evidence based on my medical background 🙄
welcome to the wonderful world of thyroid treatment rustymoon ... to get the best result out of the "just take this one little white pill each day and you'll be back to normal in a couple of months " treatment offered by the NHS , you will need to:
a) bolster your self belief , you'll need it .. as you will encounter "it's normal now , could you be depressed/ menopausal ? " as the initial (and often 'only') response from many GP's. You will often be given the impression that "everyone else is absolutely fine once on levo with TSH in range , it's just you " (it's not)
b) do the equivalent of an 'A' level in 'thyroidology' , by learning how thyroid hormones work and how they affect different parts of your body , how individual our responses are, and what else to improve to help them work best (from this forum ~ 'O' level , and from here thyroidpatients.ca/home/sit... ~ 'A' level ) so you can make sure your treatment is adjusted in the best way and at the right pace., and everything else is as good as it can be. Then hopefully you'll feel a lot better than you do now , and be able to keep it that way.
Yep, that all already sounds familiar! I've done so much research it's coming out of my ears, although without the help of this community and online info I'd still be undiagnosed so I'm grateful for it. Funny to think a couple of years ago I'd never heard of hypothyroidism or Hashimoto's and wasn't even sure what autoimmune meant 😆
P.S. Don't know if you saw the episode of Call the Midwife that was on a few weeks ago - one of the characters got diagnosed with underactive thyroid and it was great to see awareness being raised but the doctor literally said to the character "don't worry, just take one pill a day and you'll be back to normal!" 🤦♀️
1) we must be on the same dose everyday for 6 weeks before blood tests for TSH/ fT4/fT3... otherwise the results could be very misleading .
2) The TSH (thyroid Stimulating Hormone ) had a circadian rhythm , it is highest middle of the night , and lowest between about 1-3 pm. We want a consistent comparison each blood test.. so try to keep test times similar..... and we want to see the TSH at the highest (as GP's adjust dose by looking at TSH)..... so a 9am test is best or not too long after.
3) Eating breakfast lowers TSH a bit .. ( also why 9 am is better ~ have breakfast afterwards )
4) the time gap from taking the last dose of levo affects the fT4 level of the test .There is a 'peak' lasting for a few hours after you take it, then the level slowly settles. Keep this time gap consistent for each test so it's a proper comparison .( another reason why 9 am is better ), take previous days tablet as usual in am . then wait till after the blood test to take that days tablet . this gives the recommended 24 hr gap .
NHS won't specifically give early am blood slots for thyroid tests..(they say it doesn't matter as thyroid doesn't need to be a fasting test ~ but they under estimate the effect of TSH rhythm /time of last dose, on results ) ..... best way to get one is say you can't come any later due to work.
Links to papers supporting the above, are in replies to that post of "recommendations for GP's to keep TSh lower " that Jaydee gave you .
(See SeasideSusie / SlowDragon frequent replies on other posts for advice about how long to leave off B vits before blood tests .. (as biotin can affect the results). and how long gap to leave from taking levo , for vitamins / food everyday .. these can affect how much Levo you actually absorb every day )
I was aware of these apart from 4, thanks! I always have my blood tests between 8.30 and 9am without food. I only ended up getting a proper diagnosis after insisting on tests being at that time after a string of ones done around lunchtime and after food showing a lower TSH result.
i think Jaydee1507 has a graph to hand showing how fT4 level rises /plateau's / falls following levo dose .
Basically~ somewhere between 1 to 2 hrs following dose, it goes to it's highest (depending on the speed of your digestion)... stays up there until about 6 hours , .. falls to 'more or less' it's resting level by about 12 hours .. and falls the rest of the way by 24hrs.
Have you had your ferritin (iron stores) and serum iron tested in the last year? It is common for people with low iron and/or ferritin to be exhausted.
But your low dose of thyroid hormones would be my favourite for the cause of your lack of energy - your doctor(s) are sadists keeping you on 50mcg Levo all this time.
I have yes a couple of times and they're all fine. Weirdly I have a very high concentration of red blood cells but not so high it's a concern at the moment especially as I have pretty low blood pressure.
I think you're right - the low levo dose sounds like the most logical explanation. Thanks!
As well as having a TSH (thyroid stimulating hormone) checked request Free T4 and Free T3. The aim is a TSH of around 1 or lower.
I think you are aware that blood tests for thyroid hormones is at the very earliest, a fasting test (you can drink water) and don't take thyroid hormones before blood draw - take these afterwards.
Thanks, it does seem like TSH of 2.7 - while a lot better than 7 when I was at my worst - is still too high. I'm going to try and speak to my regular GP about upping my levo dose and asking for another (pre-9am fasting) blood test when I haven't taken my meds beforehand (have to admit I had taken my morning dose before my last blood test). I seem to remember my T4 was about 11 in my latest blood results which was quite high.
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