Hi
I had my normal bloods done at my GP and they rang me to tell me to reduce my dose as my TSH was 0.2 I said no as I increased a few months ago due to my hair falling out and it's not now.
The GP was understanding and asked if I felt overmedicated and I said I feel fine apart from my clicking thyroid and aching joints.
Is it OK at 0.2?
I didn't get anymore results as they only do the basic
Thanks
Ali
That's o.k. I don't think our dose should be adjusted downwards just because the TSH is low. Some might feel quite well with a low TSH. It is only when it starts to rise that we may be symptomatic. This is a link from TUK:
When you say clicking thyroid can you explain what you mean? I think I’m experiencing the same thing. My TSH was 0.34 and GP has reduced my dose.
Hi,
It clicks when I swallow really bad and I had a private scan and there were loads of nodules but my thyroid was small for my age I was told.
I refused to reduce my dose based on my bloods as the helpful people on here advised me last year so I increased my dose and I feel slightly better and my hairs stopped falling out. My GP was good and said if I fell ok then we will see how you go.
I'm going to take slowdragons advice and get some more private bloods just to be sure.
Thanks
Ali
I’ve had the same sensation for about 10 days. It really scared me to begin with but it seems to have settled a bit. Still clicks but not as much. Went to GP who said it was cartliage?? My thyroxine was reduced about a month ago and I have felt dreadful since. I am having private tests done as well and then going to see a private endocrinologist. I feel really let down by the GP. Thank you for sharing and answering.
Refuse to reduce dose based just on TSH test
If Ft3 is not over range you aren’t over medicated
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking
Do you have Hashimoto’s
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels or test privately
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)
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...
NHS easy postal kit vitamin D test £29 via
Thank you I will
Ali
Come back with new post once you get results
Members can advise on next steps
Thank you
I have recently read that levothyroxine is better taken at night ( 4 hours after food) -
I find it much more convenient, possibly more effective taking levothyroxine at bedtime
Prevents evening snacks too
I agree - just changed to evenings myself - as I was having to get up silly early in the morning to take mine .
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
What positive effects have you noticed from taking your levo at night? Have considered trying this. Thanks!
I changed on advise of endocrinologist about 10 years ago
I found it gave better absorption and much more convenient
Thanks for responding. Did it affect your sleep, good or bad?
Is there any research paper we can show to GP to demonstrate all this true? I found myself getting tongue tied and my GP just said low TSH is dangerous for your heart and bones and we must reduce your levothyroxine dose. I’m about to go in and ask for full blood results to see if they’ve tested for T3 and T4.
Hi,
That would help to have proof. Hopefully someone might have some
Thanks
Ali
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
See reply by Diogenes in this post
healthunlocked.com/thyroidu...
the best paper on this that I have seen indicates that a TSH of 0.03-0.5 is best on therapy. Above that is insufficient and below MAY or MAY NOT indicate slight overdosing
academic.oup.com/jcem/artic...
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
20% Patients with no thyroid can not regain full health on just Levothyroxine
ncbi.nlm.nih.gov/pmc/articl...
Thank you so much.
My TSH - 0.07 (0.30-4.20mu/L)
T3 is 4 pmol/L (3.10-6.80pmol/L)
T4 is 16.1 pmol/L (12.00-22.00 pmol/L)
My GP is saying I need to reduce thyroxine (125mg/day) as its dangerous for my heart ad bones at this level.
I feel great.
From what you are saying it wouldn't be dangerous for heart or bones to stay at this level TSH.
I will use these resources to make my case!
Thank you again.
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you currently take T3
What vitamin supplements are you currently taking, if any
Do you have Hashimoto’s, are you on strictly gluten free diet
Hi SlowDragon,
I had not long taken my levo so should I ask to re-test and take my last levo 24hrs before? I only take levothyroxine not T3.
I take Vitamin D 3000 x2 spray, B12 drops and folate pills (the latter only when I remember to).
I don't know if I have Hashimoto's - how would I know this? I've only ever been told I have an underactive thyroid. Should I be asking for an antibodies test?
I am not on a strictly gluten free diet, no. Should I be? I would say I am on a 95% gluten free diet, mainly as I feel better on a grain free diet and eat LCHF to lose weight - I've lost 2 1/2 stone in past 2 years on LCHF (was 3 1/2 before lockdown) and IF but GP says no its because your levothyroxine doseage isn't right...
I now have 3 stone to lose and really don't want to reduce levo dose as I think it will make it so much more difficult.
Thank you so much.
Refuse to reduce dose
Get FULL thyroid and vitamins tested done
Likely you do have Hashimoto’s. About 90% of primary hypothyroidism is autoimmune thyroid disease diagnosed by high thyroid antibodies
Gluten intolerance EXTREMELY common with Hashimoto’s . Gluten free diet does need to be absolutely strictly gluten free to be effective
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 at least annually
Test vitamin D twice year when supplementing
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
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)
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...
NHS easy postal kit vitamin D test £29 via
My TSH is 0.005 and I feel fine. Doctors keep trying to cut my thyroxine but I feel ill if just 25mcg is cut from my daily dose. My T3 is normal though. The TSH figure looks as though I am quite poorly, but I'm not. Doctors should be trying to fathom out why the figures dont match the reality, not trying to make us fit in with the numbers!!
Hi
I do have an constant aching behind one eye I've had for a few months and hot my eyes tested and there fine I'm.hopingbits not related
Ali
Hi Alisbabas, I’m sorry you’re experiencing this unexplained pain in the eye. I’d be interested to hear some more about it. Is it constant? Does it get worse when you’re touching your eye? Do you suspect it’s thyroid related? I’ve lived with hyperthyroidism symptoms for years before I got diagnosed with graves last year. Equally, I’ve had this on and off pain behind my left eye for a few years yet two independent ophthalmologists couldn’t find any reason for it. I worry about it at times... Gosia
Hi
Its been a lot but I would say 24/7 it hurts more looking left and right and throbbing like behind, it was there when u woke up today.
You can get thyroid eye with overactive
Take care
Ali
Sounds painful and unsettling. Hope you get to the bottom of it why this is happening. Yes, I’m afraid I’ve developed some graves related eye disorder, however, the two ophthalmologists that have seen me cannot find a reason for the pain behind my left eye since all the other issues have resolved. All the best. Gosia
There are specialist eye centres ( TED clinics ) throughout the country who deal with Thyroid Eye Disease and other than be referred to see a specialist Graves Disease Ophthalmologist possibly a better bet than the normal high street chains.
You might like to dip into the Elaine Moore Graves Disease Foundation website ;
Elaine has now written several books on Graves, and there one especially on Graves Ophthalmology
Thank you! I’ll definitely look up your suggestions. It seems I’m thankfully in remission now, so as my TED. Yet this unexplained, erratic eye pain worries me at times. The two ophthalmologists (one a nhs doc and the other a private doc) seemed thorough and each examined me for an hour. Still, they had no answers on this matter. Thanks again for the info. Gosia
Unfortunately it has been my experience that with Graves - no one has any answers.
Running blood tests that can tell you this or that but this is only one part of this AI disease and there appears no understanding of monitoring antibodies and looking at the immune system response to environment and " life " triggers.
Best first option is to read up and become you're own best advocate :
You might like to start by diping into the Elaine Moore Graves Disease Foundation website - Elaine now also has several books published on this poorly understood and badly treated autoimmune disease.
All true words Pennyannie. The unknown part of this disorder is the one that I find upsetting and anxiety provoking. But we do what we can, right? 
Educate ourselves and share our findings with others. I’m a nurse much familiar with medical research and very fortunate to have found a private endo that has shared with me no less but the life saving knowledge that I plan to keep building on. Many thanks again for sharing yours. 
Overall, this platform, found when I got diagnosed last year, is where my learning has begun!
As you quite rightly say, this forum is a life line for many and this is due to all forum members supporting each other.
It would therefore be a good idea for you to complete your profile page and share your thyroid journey with forum members as we all learn from each other.
Everybody has something to give, and as you rightly acknowledge, this platform is your learning base, just as it was, and is, for all of us in our own time and need.
Hi fiftyoneThis is the fight I'm having with GPS, endos, my gp keeps insisting I've to reach this golden TSH level and once that is achieved I will be normal again, what a load of crap, I've challenged him and the endo who I have never seen since my thyroidectomy in 2019. My last encounter with this particular gp was last year he insisted this is what you need to be at TSH 1.6...4.50..the actual rangers are... 0.30....4.50 in my blood results so I said where do you get the 1.6 from, as you pointed out he said a low TSH is dangerous 🙄.. I relayed... first surely people are different we can not all have the same tsh, T3, T4, we have different metabolism OK you have a broad range of each but some people will feel fine slightly above or slightly below these golden ranges, I put this in reverse for him when I was trying to get diagnosed with hyperthyroidism (graves) when I asked for bloods for my awful symptoms he only did TSH.. A number of these were slightly lower than the range, some were suppressed! He never acted upon those results, I found them in my records, so... Whilst trying to Diagnose me with hyperthyroidism which he and the endo failed to do.. A TSH below range or suppressed didn't bother either my gp or endo then, so why bang on about it now!! This is why I don't have much faith in either the gp, or endo.. I get my info off here 👍 they don't seem to grasp thyroid disease very well, and all to often fixate on reference ranges rather than how the patient is actually feeling. 🤷♀️🤷♀️
you are so right. I've walked out on doctors before now. Ask them to identify what exactly is not working properly in your body, now, as a result of 'wrong' TSH. Challenge them to examine you in order to find out. I spoke with an endo who was determined to find something wrong and sent me for a bone scan. Nothing wrong at all. No osteoporosis as doctors keep threatening and my TSH has been well low for 15 years and myt T4 high. I suffered a bout of atrial fibrillation last year which of course was blamed on my high T4. It has disappeared now and I'm still taking the same thyroxine dose. I am sick sick sick of doctor's attitudes, not checking out the wellbeing of the patient, and not wondering why the figures are so misleading. The figures should reflect the wellbeing of the patient.
Its amazing how many people are ignored 😢
Hi Alisbabas❤️It also amazes me how some people can't get diagnosed, I myself after having graves then a thyroidectomy because of incompetent GPS and endos, I'm now having high calcium and parathyroid hormone levels, which indicates hyperparathyroidism, I had this in 2004,and they did the wait and see method! Then one blood test came back as normal so that was that, both calcium and parathyroid went overactive again last August and they have again done the wait and see method eventho my calcium is still high, I have all the awful symptoms of hyperparathyroidism, and have had the DEAX scan which has shown bad ostiopeania in my spine, and x rays of both knees which show osteoporosis /ostio arthritis I've passed several kidney stones in the years prior to 2004,all these are linked to hyperparathyroidism!! And here I am suffering it just doesn't make sense 🤷♀️ I've eventually got my gp to send me to an endo but the app is for July.. 😢 I've been told by my surgery to watch my symptoms until the appointment, lovely eh.... 🙄🙄🙄🙄
Hi fiftyone❤️You know what makes my blood boil the most is when you manage to see a doctor or endo and they pull up your latest blood results on their computer and fiddle about looking back and forth (well that's been my experience) relaying to you that ho your TSH is not in that good range or your T3, T4 are off, they don't actually look at you or even ask how you are!! In my opinion they give more time to a computer screen than the patient's themselves, 🙄🙄🙄
On T3 it’s almost guaranteed your TSH will be well below bottom of range long before on high enough dose T3
Hi slowdragon ❤️Yes of course it will.. 😂 But as we all know on here GPS or even endos don't seem to like it low 🤷♀️ as you know I'm slowly increasing my T3 meds now on 30mg, increasing to 35mg after my next bloods 29th march seeing as I seem to be tolerating it do you think going up 10mg instead of 5mg would be pushing it slowdragon?? I told my gp I intend to get it to 1 or under he was not best pleased and said 1.60 would be the sweet spot 🙄 but what do they know🙄 to busy scrolling down the computer to even look at you!
❤️❤️❤️
I would only increase by 5mcg
Wait 2-6 weeks (depending how you feel) before increasing by another 5mcg
Perhaps Retest 6-8 weeks after increased to 40mcg or 45mcg
Hi ❤️❤️❤️Thank you slowdragon will do👍👍👍
My TSH has been all but suppressed since I had my thyroid removed. Both the GP and the endo say that I am over medicated and the endo insists I have been treated incorrectly since having my thyroid removed 25 years ago. I did spend 3 years on a lower dose because of this belief and I was really struggling. According to the endo, I wouldn't notice reducing my dose 25mcg. He blamed all my symptoms on the menopause and just didn't want to listen. Luckily, the GP I saw then came on here and read up on it and increased my dose, but I haven't seen her since. Last year, they sprang a blood test on me when I was in for something else, so everything was skewed - it was afternoon and I had taken my levo in the morning. You can safely say I was annoyed.
Wow, I've had all that with my endo in the beginning treating me like a naughty school girl.If it wasn't for this group I'd be in a mess.
Take care
Ali
It’s a merry go round!! 😤
My TSH is usually suppressed and I have had the lectures from the consultants about heart failure, about the effect on my bones etc. My TSH started to rise and became detectable and I put on over a stone in weight and felt really unwell for about 18 months. After a challenging conversation with the consultant my T3 medication was increased as I pointed out my T3 level had significantly dropped. I usually get the consultant saying, well it depends on what time of day you took your medication and the time that you had your blood test taken so we can't really compare. I find myself explaining I take my medication at the same time of day and have my blood tests carried out at the same time of day so a comparison can be made, I expect my next blood test to show my TSH is undetectable again as I now feel well. We all know how we feel and I wish they would listen to us as we are all individual.
The TSH will be suppressed if you are on T3 medication
Suppressed TSH AND LOW T4
Very low TSH and low T4
low TSH higher cholesterol 
Is this TSH and T4 too low?
