Hi everyone. 2017 diagnosed hypo, as extreme fatigues and night sweats (not exhausted when not having night sweats too). Been on 50mg Levo since taken 6am then eating 7am rarely with caffeine. Last year at least fittest in my entire life running and working out 4 to 5 times a week abd eating healthy. I started taking vitamin D, B complex, A-Z and omega 3,6 &9 in February (at lunctime). I am also on the Cillest pill I take before bed. I have developed lower back and hip issues past 3 years and been having physio for that and also have IBS and bouts of depression . I tried taking levo before bed but didn't make much difference so switched back.
Recently had my NHS tests, no values as despite online you clog the phone lines calling in for results no actual values given just told normal. I decided about 4 weeks later to get the private test done. Both test taken in morning fasted and no levo taken that day or day before (also no vitamins day before). Private test done last week
Wondering what else may help me or any ideas others may have. I have a very busy job but as said I eat right, exercise and am in bed at 9 30 pm but often feel so fatigued am wondering if I should get vitamin tests done or anything else? Many thanks sorry so long!
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Aimez_1
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Well your T4 is hardly in the range, at around just 4% and we generally feel at our best when T4 is heading into the top quadrant of its range at around 20 - which in turn should improve your conversion into T3 which is the active hormone that the body runs on.
It is low t3 that causes all the symptoms of hypothyroidism just as a high over range T3 would probably give you symptoms of over medication and " hyper " type symptoms.
You sound very active and this depletes your T3 even faster - than just say sitting on a sofa.
If I understand things you left off your T4 thyroid hormone replacement for 2 days, rather than 1 so these results are slightly lower than normal anyway.
No thyroid hormone replacement works well if ferritin, folate, B12 and vitamin D are not maintained at optimal levels so this might be an area to look at - but I think in the very first instance you need a dose increase or two in T4 - Levothyroxine.
" test taken in morning fasted and no levo taken that day or day before" ?
please can you clarify...... how many hours was last dose of Levo taken before the test ?
if it was more than 24hrs , then that explains the low fT4, as it's a 'false low'
But if it it was no more than 24hrs, the low fT4 indicates you should ask for a dose increase.
this will raise FT4 and lower TSH.
50mcg is only a very small dose.. but if your GP only tests TSH they will not be aware how low your fT4 is.
If you get through to reception they should give you/send you the actual results if that is what you asked for (as long as the GP has already seen them )... don't feel bad about bunging up the phone lines ... if they want to be more efficient they should train there receptionists to answer requests for test results properly without wasting time fobbing people off so they have to keep phoning back.
Depression is a symptom of hypothyroidism , and despite the fact that TSH is in range, your fT4 (the actual hormone) is still very low indeed.
(Yes, you should get vitamins done, but i'm no good at the detail on what / where from, so will leave that for someone else to answer better than i can)
Both test taken in morning fasted and no levo taken that day or day before (also no vitamins day before). Private test done last week
Last dose levothyroxine should be 24 hours before test
IBS and bouts of depression .
Suggests autoimmune thyroid disease and being under medicated
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
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.
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 patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
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.
Thanks for so many replies, I am confused a private and NHS test says everything is fine.My test in 2019 shows what they tested then, all tests were under exact same circumstances which as I said I take levo at 6am daily and eat 1 hour later so before these tests I did not take it the day before, test done about 8 30 am then taken after do about 38 hour without it at test time. I just read not to take it day of or before test and that's best I could do in real time. I listed my vitamins and when I take them in my first post, been on them over 90 days.
My dose has been the same since 2017 never been called back in. Was told night sweats are hyperhydrosis (which seems ridiculous as I am fine during the day unlike real sufferers) and nothing can be done (i will be single forever is so embarrassing)
Oh I am 37 if relevant.
I suffer headaches alot too but this has been discussed as the pill I am on is known for it and I am bit rubbish as hydration I find it a real effort.
So I am reading this as the tests are correct as I didn't test 24hrs since dose so must be something else causing fatigue. I have never had any tests bar the ones listed, well don't think (since they ever send/upload anything!). But originally I was told I was anaemic as this also came from being unable to donate blood as failed the iron tests then thought I had hormone issues cos of night sweats so who knows.
I never get any results I get told verbally results are normal. I only got the ones above for 2019 because I complained I never have any proof of results. I asked for all tests to be emailed and they told me I have to go in and ask (?!) I work all day so never had time for this,l. Seems stupid can email one test ok they just wanted to fob me off and it worked. Most surgeries have all this online apparently.May well had hormones tested as originally I was taken off the pill when I went in for fatigue and night sweats and tested for god knows what as they probably thought was early menopause at 33 maybe?!
I already have online access just our surgery needs dragging into 2021 as most of the options are not available. For years we are banned from calling for repeat prescriptions as long as you have internet access which is good and online appointments were forced during pandemic which is all great. But still no medical record or results set up yet which is a shame.
To clarify a couple of points ... you left 38 hours .. this is too long, and will mean fT4 result looks lower than it normally is on that dose The instruction for 'leave 24 hrs' means '24hrs at most' this is to avoid the peak level in blood which happens about 4/5 ? hrs after taking the tablet )So .....if you normally take levo in morning , take Mondays levo as normal , test first thing Tuesday morning. then Take Tuesdays Levo after test.
If you also missed Mondays Levo the fT4 result from Tuesday will be somewhat lower than it 'really' is .. if you see what i mean ... we call it a 'false low'.
(We recommend early morning testing to show TSH at it's highest, useful when trying to get diagnosis or dose increase)
Second .... reports of 'fine / normal' for thyroid test results are just saying 'it's with in the normal lab range'..... this just means "you are not extremely ill"..... it does NOT mean "you are as well as we can get you, or your results are similar most healthy people"
For example, when looking at TSH results, the VAST MAJORITY of healthy people without thyroid disease have TSH near 1... but the [reference range] for healthy people goes from [0.4 to 4.5] ish because it includes 97.5 of the population, but only a very very small % of these will have TSH over 2
When treating someone for hypothyroidism Gp's should be aiming to get TSH to between 0.5 and 2 to replicate the 'MOST normal' ... but they are often unaware of this because the rather useless NHS Thyroid treatment guidelines simply tell them to "get TSH into range.." which they interpret as "anywhere in range is good enough" ... its not.
To show you what Normal /fine really means for TSH look at this graph showing % of healthy people with TSH at various levels :- healthunlocked.com/thyroidu...
NHS Specialist registrars in cardiovascular /endocrinology do actually advise GP's to aim for TSH between 0.5 and 2 :- healthunlocked.com/thyroidu....
So, yes , your TSH might be in the 'normal' range at TSH 2.02[0.27-4.2]... but that doesn't mean it's where you will feel best .. and your very low fT4 of 12.4[12-22] could offer an explanation of why you don't feel good despite TSH in range .... but to know how low your fT4 really is you would have to retest 'no more than 24 (but a lot more than 5) hrs after last dose. Your 'real' fT4 will actually be a bit higher that 12.4[12-22] , but still might be too low for you to function well.
(When comparing tests always keep same hours between last dose/test , and take tests same time of day. as both these factors will affect results)
I literally have no idea how or why I typed 38 hours (tiredness!?) sorry 6 am took tablet took test next day at 8:30 am then took tablet after that is not 38 hours is 26 half hours!!Ok so they can't tell me to do one if I complain I feel crap which is what I didn't get which is understandbly as we are told everything is fine.
ok, lol . my brain can't add up today either .. it's not just you xso .. at 26 hrs ...your low ft4 is accurate..... and low ft4 is a pefectly good reason to ask GP about trialling an increase in levo dose.
GP might say 'it's in range' .. well ...only bloody just.
0.4 less and you'd still be classed as 'clinically hypothyroid'.. so if you hit this problem ask them what they think the other 95% of the fT4 range is there for.
If they say 'they don't want TSH to go lower' put that GPonline article about 0.5 -2 under their nose.
If getting latest results any other way is impossible for you , then (with caution ) ask for them to be read down phone , [with ranges].. however take care if doing this .. not all receptionists can understand the concept of "the decimal point".. and not all of them can find the actual test you are asking about.
Be very specific :-
TSH(thyroid stimulating hormone) result 0.000 ....range [?-?].... DATE ?/?/?
fT4 (free T4 /thyroxine) result 0.00..... range [?-?]..... DATE ?/?/?
and then ASK THEM TO DOUBLE CHECK.
As long as a Doctor has already seen them you DO have a legal right to the actual result , not just the 'comments' that are on it....and they ARE allowed to give them to you. but a lot of them don't know this and are scared of doing something wrong. so you have to Keep Calm and Persist in asking.
Think I just need to do this, ha thanks for that, I always feels rushed or I am wasting their time so as you say wording things correctly is important. I am thinking of going in for joint issues anyway as physiotherapy is not working for me. Thanks I WILL refer back to your reply!
If it helps with the confidence any... next time a receptionist / chemist / GP / monkeys uncle / say's something along the lines of.... "it's just YOU making this much fuss.. everyone else on Levo doesn't ... blah blah" Just remind yourself of this fact...
When i first came here a little over a year ago ,the number of members shown at the top of this ThyroidUK forum page was about 107,000
It is now 117,683 .............. really it's not just you.
Very few times I have gone to Dr it usually turns out I have something not right and I leave it too long. I left having physio for 4 years which was stupid so...
Some people, including me ,find joint issues improve when thyroid meds increased.. I had an old knee bursitis come back to bite me last year when levo dose was reduced.. it slowly went away again after levo was put back up. Out of curiosity I looked up when i'd had it previously .. lo and behold it was the last time my Levo was reduced.. and that time it was later put back up too , because the lower dose left me feeling crap...Of course i can't prove the connection ... but there is plenty of 'old school' medical text books making connection between certain aspects of joint function and thyroid hormone levels.... unfortunately these chapters have all been removed from the thyroid 'textbook' nowadays... but they weren't removed because they were proved wrong.. they just thought they didn't need them anymore once they could accurately measure the great God of Infallable TSH......
3 years later........ I did nothing about this as been so consumed with changing jobs 4 times and joint issues which are sadly same and new ones added on! Reason I came back on is I couldn't find my old blood test to match with July 2023s to compare and that I have had for years ridges and splitting nails despite good diet and supplements as above. I now take omega 3 6 9 high dose vitamin D and vitamin b complex. Still feel same sadly. Here is last summer's results. Ironically having the energy to sort this our as even booking an appointment is now such a faff to login at 8 am only before system fills up😒 I feel for people with things that are maybe life threatening!!
I'd recommend firstly you start a new post as many won't see this one, it being 3 years old.
Secondly you do really need to get some complete up to date blood results for TSH, FT4, FT3 plus key vitamins ferritin, folate, B12 & D3.
Make sure when you do the blood test there is a 24hr gap between last Levo & Blood test. Do the test at 9am or earlier for highest TSH, fast that mrning only drinking water before the test and stop any biotin containing supplements (B complex) 3-7 days before the test as biotin can interfere with your results.
Its not because they think you are fine. In many ways its a bit of a post code lottery as to what the lab decides they will or won't test, its not even the GPs deciding these things. All down to cost savings (at the expense of our health!).
Many areas only test TSH these days, a few add in FT4 nd its super rare to be able to get an FT3 test on the NHS. Even if your GP requests it it may well not get done, so its down to us as patients who obviously want to feel well to do it ourselves.
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it's not just you. 
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