Does anyone have a high level TSH (0.1) but function well like that? Rather than being ‘in range’?
I have congenital hypothyroidism and have been on 137.5mg levo daily for over 10 years but it’s been lowered to 125/137.5 alt days and I feel so sluggish!!! No energy and slow bowels etc.
GP said it wasn’t possible to feel this after 7 weeks and such a small adjustment but I really do! Any insight or experience would be helpful thank you x
My latest TSH was 0.11 and Free T4 was 20.7
Previously in October (no change to meds just a small weight gain) TSH was 0.08 and Free T4 was 18.5
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LauraBryant
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Just testing TSH is completely inadequate and yes on levothyroxine many people will have extremely low or suppressed TSH when adequately treated
Never ever agree to dose reduction based on just TSH and Ft4.
You’re only over medicated if Ft3 is over range
When dose levothyroxine is inappropriately reduced, vitamin levels tend to drop too
For full Thyroid evaluation you need TSH, FT4 and FT3
tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
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
Thank you. I’ll get a blood test done in the next two weeks. I keep forgetting which dose I’ve taken so not sure how ‘true’ it is! But let’s see. Thanks so much.
I have had my b12 done and I actually have double the amount needed so stopped my multivitamin containing it.
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
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
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.
GP said it wasn’t possible to feel this after 7 weeks and such a small adjustment but I really do!
GP's (and chemists , and receptionist's , and the monkeys uncle ! ) are all far too quick to tell us what it is and isn't possible to feel on Levo.
Unless they happen to be, or know someone personally ,who is in the approx 15% of levo treated patients who do not get well on it by following the very crap current guidelines for treatment, they frankly, how would they know what we can feel.
Take comments like this with a large pinch of salt , they love to say "it's only YOU making a fuss , all my other patient's on levo .. blah blah"... but this forum's membership has gone up from about 107,000 a year ago to 117,000 currently, so what does that tell you.
From personal experience a drop from 125/day to 112.5/day was perhaps necessary, but a further drop from 112.5 to 100 resulted in chronic constipation which was apparent within a week and didn't resolve even though i waited 6 weeks on that dose..... My stomach felt like it had just gone to sleep and it also caused a big decline in function and several months of 'too much time on the sofa' which i haven't fully yet recovered from.
Theoretically i should not be able to tell within the same day if i miss a dose of Levo, but i absolutely can ..... i know by about 2 pm...
P.s What were the lab ranges for those fT4 results ?, we cant interpret without them,
fT4 20 [12-20] is a very different result from fT4 20 [7.9-14]
Do you know the lab range for that 20.7 ? it will be after the result in brackets.
20.7 could be very over range if lab range was eg [7.9-14] and would have contributed to a decision to lower levo dose. But if lab range was eg. [12-22] then it is within range and would not have been a legitimate reason to reduce dose.
These are the results from Feb blood test which has prompted the change in meds to be lowered. So I’ve been on a lower dose for 7 weeks and feel rubbish x
Well in that case , assuming fT4 was in range (check first before arguing with GP lol !).... That just leaves the below range TSH as the reason for the dose reduction.
For information about the 'risks' of Low TSH...I will copy a reply i gave to someone else , if you read the links you can hopefully argue the case for Levo to be put back up to previous dose.
(p.s my TSH was 0.05 ish for over a decade with T4 near /sometimes over top of range...... if that's where you need it to feel well, then so be it. and anyway it turns out that despite GP's panicking about it and reducing doses ,there's actually no increased risk to heart or bones unless TSH goes below 0.04 )
"From my own experience of GP lowering dose.... caused me to end up constipated and generally go downhill, and i wasn't feeling too good anyway.. we had a 'discussion' after i tried it for 6 weeks and i said " i'm sorry , but i'm going to put it back up myself" after discussing the study below with him ,and telling him about the constipation etc, he put a note on my records say that i understand the risks, and asked me if i wanted to go back to my previous dose of 125mcg.. actually i now take 112.5mcg /day, which is better than 100 was, and because my fT4 was very over range, as well as TSH being lower than he'd like i've left it at that for now, to see how it goes.
If discussing the 'risks ' of Low TSH with GP you might find the following ammunition helpful :- If you look at the first reply to this: healthunlocked.com/thyroidu...
and click on the links within it , you will find discussions , and a link to evidence that convinced me that it doesn't really present a problem until TSH is below 0.04 and even then , it's all relative."
Thank you. I’m going to email my GP and up my dose again. I’ll then await a few weeks and go and pay and see a thyroid specific endo (privately) and have my whole blood panel checked x
When I joined in September 2010 I think that there were about 10,000 members approximately. That makes it just under 10,000 joining each year. A lot of unsatisfied people. Jo xx
lol .. imagine having the audacity to tell 10,000 people a year "it's just you" .. and even worse to keep saying it every year to 10,000 more... i refuse to believe that all these people are going in to the Doctors saying " i feel really well now , thanks doctor "... so that just leave the explanation that they don't listen to anyone....
When I moved from 50mcg Levo up to 75mcg I definitely felt more energetic and slept better for the first five days on the new dose (but not after that) so it may confound the science but I have found change in dose can be felt straight away.
So my comment is anecdotal, but many members on here have done quite a bit of research and even if not medically qualified can give references to support their advice. 😉
I think the other thing to consider is that it seems to me that doctors just follow the computer print out and a TSH of 0.01 is considered suppressed / low and a dose reduction is indicated as a way to raise the TSH and get it into the range.
The computer doesn't know the reason for your hypothyroidism :
It seems to me that these blanket statements and guidelines are applied to everybody, irrespective of how or why the patient became hypothyroid and if the doctor doesn't know why you are hypothyroid and or know enough to make a judgement call and dismiss this dogma, it becomes a slippery slope for anybody whose reason for being in this big " hypothyroid " pond isn't as clear cut as the " norm " eg :
For example thyroidectomy patients, Graves patients after RAI thyroid ablation, your good self, and no doubt any patient who has an auto immune thyroid disease.
Until there are guidelines appertaining to your specific reason for being on Levothyroxine no thought process seems to happen :
We must fit into these ranges - irrespective of what we are dealing with :
Does the computer know that you were born without a thyroid ?
Maybe if the computer had this piece of information you may get a different answer.
I became very ill by being kept in this TSH range and offered anti depressants when I questioned why couldn't I stay on the dose of Levothyroxine where I felt better ?
I'm with Graves post RAI thyroid ablation and needed my TSH at 0,01 to be well :
Some people need to have a low suppressed TSH to be well so for these people why can't a T3 and T4 be run to check these all important levels.
The TSH was originally introduced as a diagnostic tool to help confirm a diagnosis of hypothyroidism : it was never intended to be used once the patient was on any form of thyroid hormone replacement, as a T3 and T4 should then be run with the intention that T3 and T4 should be balanced at roughly a 1/4 ratio and at a high enough level for the patient to have relief of symptoms experienced.
I now self medicate and buy my own full spectrum thyroid hormones as I was unable access either Natural Desiccated Thyroid or T3 through the NHS - and I'm now off the sofa and am much improved.
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I was born without a thyroid at all x 
High TSH & High Free T4
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High TSH and T4 in upper range?
