Hi, wonder if anyone can advise. Constantly tired. Some days i have to cling to the kitchen benches it’s that bad so bit of a nightmare trying to make tea for 3 children! On 50mcg levo. Last results were:
TSH 2.55
FT3 4.5 (3.1-6.8)
FT4 19 (12-22)
So all looks ok, i thin? Trying to work out if it’s thyroid related or if there’s some other underlying reason. Just fed up with being tired. Thanks for your help.
How long have you been on 50mcg levothyroxine, Redcar1993? If it’s been a while you’re undermedicated…
Thank you so much for the reply Jazzw. I’ve been on 50mcg for a few years now. I was worried if I up my levo it would push me over the top of the t4/t3 ranges?
My goodness - you've been neglected. It's now time to recover your health - no matter what your GP states as mine couldn't even diagnose me at all, despite a TSH of 100 plus symptoms.
I diagnosed myself thanks to Thyroiduk and we hadn't a Healthunlocked forum then. Lyn Mynott began TUK because she had similar problems of either being undiagnosed or being constantly unwell.
The aim - once we're diagnosed - is to have a TSH of 1 or lower and a Free T4 and Free T3 towards the upper part of the ranges.
Due to GPs being totally inadequate to diagnose/help a patient who has hypothyroid, we have TO GO IT ALONE - and that is with the help/advice of many on this forum.
This is the method when having a blood test for thyroid hormones is to always make the earliest possible appointment - it is a fasting test (you can drink water) but do not take thyroid hormones (usually levothyroxine) before the blood test. Take it afterwards always with one glass of water.
Ask GP to test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.
Always get a print-out of your results for your own records and post a new question on the forum but always state the ranges too as labs differ and so do ranges.
Those results indicate that you are undermedicated. TSH should be around 1 and there is room for your ft4 and ft3 to be higher.
50mcg levothyroxine is only a STARTER dose
Do you always get thyroid levels tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or if left under medicated for a long time
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
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...
I was worried if I up my levo it would push me over the top of the t4/t3 ranges
Do you test with last dose levothyroxine 24 hours before test
please see my reply to this post (4th reply down ) healthunlocked.com/thyroidu... gives 4 or 5 references advising GP's to get TSH below about 2.
Try using them on your GP to get a trial dose increase to 75mcg, to see if it helps.
(or perhaps a smaller increase of 50 /75mcg on alternate days , which makes dose = 62.5mcg)
Redcar1993
Do make sure you check your nutrient levels, in particular low ferritin and/or iron deficiency can cause fatigue.
Thank you so much all. Was feeling a bit lost until I found this forum and a bit down with it all. Didn’t realise about the “when to test”’thing so think my last test may have been down at about lunchtime after my morning levo dose. I have used medichecks before and they were great. When I was initially diagnosed (had to go through private endo due to miscarriage and my GP wouldn’t accept there was anything wrong with my thyroid) my TPO antibodies were >1500. Went gluten free after reading advice regarding this, and they are now under 300.
I’ve now made an appointment with my doc to get levels checked (will ask for tsh - and t4 if they give me it) but also iron levels to be checked as last medichecks report had my ferritin on the low side.
Didn’t realise it affected vitamin levels too. My vit D was on the low side too on the last report and have been supplementing since then.
Feeling a bit more positive after your comments. Thanks again.
If the blood draw for the above results was around lunchtime, then your TSH would have been at its lowest. If you had taken the blood before 9 am, it would have been quite a bit higher. Also, if you took your levo less than 24 hours before the blood draw, then you have a false high FT4. So you are pretty under-medicated.
Don't worry about your FT4 going over-range - unlikely your FT3 would - you're not going to drop dead on the spot. T4 is basically a storage hormone that doesn't do much until it's converted into T3, the active hormone. But, even if the FT3 goes a bit over-range, it's not that much of a problem unless you start to have hyper-type symptoms - trembling and loose bowels, etc. Ranges are only a rough guide, but it's how you feel that is most important. And, you obviously feel pretty under-medicated! 
High thyroid antibodies confirms autoimmune thyroid disease (hashimoto’s)
Great to hear that gluten free is helping
ESSENTIAL to test vitamin D, folate, ferritin and B12
Important to maintain optimal vitamin levels
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Folate and ferritin at least half way through range
When hypothyroid, especially with Hashimoto’s we frequently develop low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result
What vitamin supplements are you currently taking
ALWAYS test thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Ah yes I went to see a nutritionalist who did the bicarb test on me and found I had low stomach acid test and it came back positive. I’ve been a bit lax remembering to take my digestive supplements so will up my game with this. Ferritin levels were near bottom of range.
Again, I’ve not been very good taking vitamins at the mo (Christmas chaos and then covid) but need to start looking into this again. I was just taking a H&B supplement. If there’s a better one though I would be interested in knowing.
No not always the same brand. I guess this makes a difference too then?!
And I’m not near the Nice guidelines for my dosage! I have def learned a lot tonight!
Work out which brand levothyroxine suits you best and always get same brand at every prescription
Test vitamin D, folate, ferritin and B12 levels now
Come back with new post once you get results
Members can advise on what supplements required
Thank you. I will get these looked at again. Appreciate all the advice you and everyone else have given me tonight
Can I just interject and say that if you take a vit B complex for example or any supplement containing Biotin (B7) you will need to stop this for 5 days prior to testing as it skews lab assays
Re H&B for tablets, Which Magazine said they're not very good for supplements.
Ah really?! Thank you for this. Will get my vitamin levels checked as advised by SlowDragon and post results.
We never recommend multivitamins on here or H&B own brands
Come back with new post once you get results
If deficient GP should prescribe
If insufficient/not optimal you will need to self supplement depending on what you need
My Functional Nutritionalist put me on the Pure Encapsulations multivitamin & separate D3 as they have no fillers and the B vits are methylated (more body available). I’m also terrible at remembering (I take so many and need to take them with water so haven’t found a routine where I *always* remember/ find a window of time on a hectic family morning- unlike Levo by my bed), so I’m about to try Patch MD multi
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
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 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.
BMJ also clear on dose required
Unfortunately many GP’s seem unable to actually read guidelines
Interesting greygoose. Thanks for the info. I didn’t think of it like that but it makes perfect sense when you’ve explained it about the timing of the test. Definitely feel undermedicted. Besides the tiredness, hair feels very brittle and skin feels rubbish! I think because I hear of people on much higher doses of levo, I always feel like a bit of a fraud and think “it can’t be my thyroid”!
"because I hear of people on much higher doses of levo, I always feel like a bit of a fraud and think “it can’t be my thyroid”!
I made that same mistake of 'feeling like a fraud' for decades.
About 16 yrs ago. I was on 150mcg , but i knew my aunty was on 200 / 225ish, and she seemed to be doing much better than me.
I thought , "oh , i can't be that bad then, if i only need 150mcg" It confirmed what the doc had always implied .. ie. any other problems i still had were 'not my thyroid'.
Also because she'd had part of her thyroid removed and i hadn't ... again i thought 'that's why she takes more than me'.
But i now realise that she was taking that dose (and doing very well on it ), because when she was first prescribed it , it was in the 1950's , before they used the TSH test to decide dose .... they largely dosed based on symptoms being relieved... and so a lot of people back in the 1950's /60's/ ?70's were taking much higher doses than we commonly see nowadays. (and there were a lot less 'dissatisfied' thyroid patients then )
200 , even 300mcg was fairly common... and because she felt well , she never bothered with the doctors and carried on taking the same dose , and ignored their requests for blood tests for years at a time.
I didn't understand then, that just because my thyroid was still in there, that didn't necessarily mean i was was any better off than her, hormone wise, or that i would need any less Levo than she did .
In fact , it's possible i was actually 'worse' than her ... mine was being slowly destroyed by my immune system , but she'd had Graves which doesn't destroy it , just causes it to make too much T4/3 , so they cut some of it off.
If her Levo had been dosed according to her TSH, rather than by how she felt.. she would almost certainly have been prescribed a lot less than she was.... and i'll bet you 50p she wouldn't have managed so well.
She did have a stroke though , but that was when she was in her 80's and she was still managing to keep sheep at the time.
I wish i'd understood more about it back then ... it would have saved me years of beating myself up for 'being useless'.
If you do try an increased dose , your TSH may or may not go much lower. It probably will , but mine didn't .. it was 2.9 on 50mcg / 2.5 on 100mcg /and 2.7 on 150mcg ... but i might just be 'unusual'.
I was on each of these doses for several months , and basically put the dose up myself with spare tablets, and then at the next blood test, told GP what i'd done ... and (because TSH was still in range) , he said 'fine, if you feel better on it i'll prescribe that dose'
My Total T4 did go up from low to just above mid range, but back then they didn't test Free T4, so i can't find out what was really going on with my freeT4 and freeT3.
Then about a year later after i'd tried taking more than 150mcg for a few weeks (might have been 175 ? , not sure).. my TSH had dropped to 0.001 and my freeT4 ,which they had now started testing, was way over range.. and doc wrote me a letter (!) saying 'do not take more than 150mcg"
But , don't underestimate the effect that thyroid hormone has on everything your body does ... pretty much all your cells in all your organs, muscles , brain, bones, skin , digestive system , and everything else... need it to be correct , for them to function properly.
Because our GP's (and everybody else ) don't make any fuss about Hypothyroid issues, and they don't seem to understand how much of your body's function is affected , and because we rarely end up in A&E with it ,....we end up believing it's 'just a little thing' ... but it's really not .
It's a really slow, unspectacular , un-exciting , thing .... but its still a 'big' thing.
Thank you so much for sharing your story. In my head, yes I def think “oh it’s nothing, it’s just a little thing, can’t be that”. Think it’s hard for family to understand as well because it’s not a visible thing so I always feel guilty if I say the words “I’m so tired”. I have learned more in the past day about thyroid than I have over the last 9 years of being on tablets.
You're faster than i was .. took me 17 yrs to get here, cos i didn't 'do' internet.
Families can't 'get it' unless it happens to them , but :
Next time they're watching a mountaineering programme on telly, and it gets to the bit where they are talking about altitude sickness .. tell 'em that 's pretty close to what you feel like when you're saying 'i'm so tired' ...... Or the end of the london marathon ,when they collapse on the tarmac just over the line.. and can't even speak to the reporter.
.......Or when the lifeboat crew pull a guy out of the sea who looks fine but they are worried about him having early hypothermia cos he's not making much sense.
And then ask 'em if they'd think that person might just have a little bit of difficulty whipping up dinner for the family at 6 pm....... then ask for your medal for every time you've managed it over the last 9 yrs
You have all my sympathy Redcar. I too was put on a starter dose of 50mcg & left on that for a year by which time I was on the floor & felt incredibly ill. I went private & was lucky enough to see a well renowned specialist who sadly has passed away. He guided my GP on my treatment & I slowly recovered. In addition to this lovely forum its a good idea to read up as much as possible as in truth GPS know nothing on how to treat hypothyroidism. A good starting point isiving with your Thyroid by Barry Durrant - Peatfield. Thyroid UK have a list of books on their website. You need to become an expert patient as its called in the NHS and then you can push the doctors to help you regain good health with appropriate thyroid treatment AND as needed supplementation of vitamins & minerals. Classically, ferritin, iron B12 &
Vit D can be low in hypothyroidism & these in turn bring fatigue & other symptoms.
Always have your thyroid blood test as early as possible in the morning, take your levo AFTER the blood draw. I go to phlebotomy at the hospital as my GP can't offer me an appointment with nurse before 9.30am.
You are most certainly undermedicated as your current blood test results show a too high TSH, low ft4 & ft3, despite the test being done at midday & you had taken your levothyroxine which will have falsely raised the ft4 & lowered the TSH.
I think I know the Dr you are on about - was he quite controversial? When I miscarried and was told my symptoms were just depression, he was the only one who listened.
I wouldn't say controversial but he stood up for the needs of thyroid patient treatment & helped many people to become well. He was a very good listener too! With a dry humour.
An ok, maybe a different one to the one i saw then but he was still very good like yours, and I wouldn’t have been diagnosed without him
Thank you again everyone. Only discovered this forum last night and I have been overwhelmed by the support! Sounds like I need to do some reading up as recommended so I’m armed when I get my blood results!
Stick with this group they are so informative. They will change your life 😉
Hi my tsh is 0.33 I’m on 100mg of levo I’m like you so tired all the time with brain fog and anxiety. My endo has booked me in for a cortisol test in March. My t3 is 3. 39 I was thinking if I could bring it up it would help me have more energy but I see your t3 is higher and your still so tired - could you ask for a cortisone test like I’m having? I wish you well and I hope you find an answer for the tiredness x
Hi, yes I get the brain fog too and just generally a “not on the ball” feeling most days. I’ve never thought about cortisol before. Do you know how it impacts thyroid function? I know I’ve read that lots of people seem to feel better on NDT or T3 only treatment (maybe this would help you? There’s obvs lots of very knowledgeable people on here who
would be able to help you more with this) and I had wondered whether or not I was one of those people, but taking it step by step for now to see if I can get my T4 meds moved up once my blood tests are through, and taking it from there.
Thank you. Wishing you very well and hope you get answers too x
Hi I would advise you to d/w Gp that you want your symptoms treated and ask for a referral to an endocrinologist as that is what I had to do and never looked back .
Thank you. I went to see an endo maybe 7 years ago and have a letter from him that says I should have TSH under 1 if I have symptoms, so this is my trump card if my doc says there’s nothing wrong with my blood results! Do you think it’s worth asking to be referred again? I’m just wondering what else can an endo do? I’m not very knowledgeable on this!
I'd approach the GP with your results (done without levo taken, early as possible, fasting) plus endo letter. I really can't see how the GP can turn down an increase! Endocrinologists are a mixed bunch, many specialise in diabetes and therefore don't necessarily have much knowledge of thyroid. If you do go down that route research very very carefully who you want to be referred to. Personally if it were me I go for the increase with the GP and see how you go. And get her/him to do the other blood tests b12 etc.... One step at a time....
Thanks waveylines. Noted re the endo. Blood test booked in for a week on friday and letter is at the ready!
I was left on 50mcg of thyroxine for four years after I was first diagnosed and felt dreadful. I paid to see a private Endocrinologist in the end who put me on T3 and told me to slowly increase my thyroxine. It's a disgrace we are left to educate ourselves before we get properly treated.
Good luck on your journey.
Karen
Totally agree. It seems to be one of the most misunderstood diseases out there. Thank you. Good luck with your journey too x
feeling really tired and fuzzy head.
Im Tired
Soo tired
Levels constantly changing
