Hi all,I'm feeling pretty desperate 😕 I'm underactive and still feeling very flat/tired/cold etc... on 125mcgms of levothyroxine. However my GP wants to reduce it further as my TSH is very surpressed 0.01. My T4 is 17 and T3 3.3.
I'm not sure I will be able to keep working or cope with the coming winter with a lower dose but the GP is adament that I'm risking osteoporosis, AF... on my current dose 😥 I'm wondering about trying Metavive to help balance for the lowered dose, does anyone have any thoughts? Chloë x
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Tiggs11
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Sorry to hear how you are feeling, sounds awful. I’m no expert, I expect they’ll be along shortly, in the meantime you will save time if you add a little more info.
Do you have ranges for those blood test results?
What are your vitamin levels? Have you had those tested?
quick reply cos my brain isn't great this time of day . might be able to find some useful links tomorrow ..
Levo reductions , even small ones can make you unwell and really mess things up ... or , sometimes they can bring unexpected improvements ..... i've experienced both.
For now ...Negotiate with GP, ( firmly)
the 'risks ' ( alleged/ future ) of low TSH have to be balanced against the risks (very possible/ immediate ) of feeling so unwell you can't work or look after yourself properly over the winter.
a) suggest to GP you would be willing to try a small dose reduction at an easier time of year, (ie spring/ summer next year ) in case it makes you unwell... it would be easier to handle . and Osteoporosis / Atrial Fibrillation (even if you accept them as real risks) aren't going to make you drop dead before then.
b) don't accept a reduction to 100mcg ... compromise and say you'd prefer to try 112.5mcg first for a few months to see how it goes and to see what effect that has on TSH. (112.5mcg dose can easily be done using 100mcg and 25mcg tablets , GP's often prescribe 100 one day 125 the next, or you can cut a 25 in half each day... so don't get fobbed off with "there isn't a 12.5mcg tablet"
i was reduced from 125 to 112.5 ,, it was pretty rough for about 4/5 weeks , i did feel really undermedicated at first , but then started to feel ok again, however a few months later due threats of heart issues/ strokes and "you'll die" etc etc from GP , i agreed to try further reduction to 100mcg ... that was a reduction too far and left me really unable to manage.. the fact that i tried it , did at least mean he knew it had made me unwell and agreed to put it back up to what ever i wanted .. i settled on 112.5mcg which to my surprise is actually an improvement over 125mcg ,,, however it did take a few months for that improvement to be apparent becasue the 100mcg 'adventure' took quite a while to get over .... but i sleep much better , and some odd aches and pains i had melted away.
c) check the lab range for the fT4 result ... is it comfortably in range ie. 17 [12-22] or over range ie. 17 [7.9-14] ... if it's not over range, emphasis this to GP. (as well as the fT3 .. that is clearly pretty low end of range)
d ) of course you could just try saying No altogether , but GP might reduce prescription anyway ..... better to have some sort of imput via negotiation .
past my best this time of night, so that may make no sense and/ or have bits missing.... but others will fill in the gaps/ help you find evidence to say No / and hopefully you can end up feeling better than you do now.
Tattybogle thank you so much for this, that's really helpful. I reduced from 150 to 125 3 months ago, TSH hasn't improved although T4 has gone from 19 to 17, range is 12-22, I've felt awful since the reduction so the idea of taking it down further is terrifying 😢 GP says my body is just used to being overmedicated and I should take a 3 month sabbatical and concentrate on myself whilst I adjust to a lower dose, not terribly helpful as I'm self employed and can't really do that 😳 x
Rant ........ i'm self employed too ..we have no safety net .. so as a result of the second reduction happening when i was barely getting my act together after the first one, i had to close down my main source of income... one where i needed to be on top of things for safety reasons .... i'd already been 'flying by the seat of my pants' for a few months since the first reduction. Had the second reduction not happened when it did . i would probably have been able to get things back on track and keep it going . as i was just starting to feel better , and winter was nearly ended, which always helps.... but instead i had to run an increasingly unacceptable risk to myself and others, or let it go ...i let it go and it's not something i can easily re-start even though i could now manage it very easily again.
as a result i'm now financially very insecure. Winter (and this one in particular) is not the time for a GP to force this sort of experiment on a person who has no safely net , purely in order to 'save' you from a theoretical bone problem or A fib .... ending up without your income in February because the wheels have fallen off will do your physical and mental health much more harm.
i would argue that 3 months after a relatively small reduction is not always long enough to allow TSH to rise ( especially if it's been extremely low for a while) /
It's well known that TSH can take quite a while a while to rise when it's been supressed. (it's seen all the time in patients after treatment for hyperthyroidism , doctors have no excuse for not being aware of this information , they will find it if they look) .
You have clear evidence that your fT4 levels are now lower ... therefore your TSH clearly just hasn't caught up yet .... if GP argues that 'TSH is always right' , ask how come something so allegedly sensitive /accurate /infallible , apparently hasn't noticed this drop in your fT4 ?
Ask him to consider this 'TSH lag' and review /retest at least 6 months after the dose was reduced rather than reducing again just yet .
I'd try logical persuasion first , but frankly if that doesn't work i'd let them know that reducing your Levo prescription further at this point would make you seriously consider 'buying NDT / or T3 off the internet' ....... hopefully that idea would make them back off as they won't want to feel responsible for this 'horribly dangerous' action .
“GP says my body is just used to being over medicated”. I don’t think I have ever heard such tosh. Apparently ‘gaslighting’ is the Merriam-Webster Dictionary word of the year. Medics are becoming disgustingly adept at ‘gaslighting’.
Tbh that's how it felt, I was so shocked I was kind of useless at advocating for myself - so many thing I wish I'd said now. If I hadn't had feedback from here I'd be in a real pickle today, it's just so lonely 😞 and feels like they think it's acceptable to feel this tired and cold - the air feels like treacle by lunch time and brain fog I'd a real problem x
Tiggs11 I have been on this forum less than a year. Despite excellent advice I find it’s still difficult to advocate for myself; although I am getting better. I think no rushing is best. I have had to have a complete rethink of the GPs role. I have found it’s not that useful. Endos no better. The GPs are not half as clever as they think they are.
The only thing I can do is send u some love really..lots of people on here to give you sound advice... I struggle like you...my brain fog..lack of motivation and depression means I can't even get my head around understanding this overlooked and sometimes ridiculed condition...my friends don't understand with almost the approach of its only thyroid and that I'm on medication..so I should be OK!... this is first time I've posted on here. I'm now suffering from social anxiety, partially through my weight gain. My doctor is sympathetic and tries, but they ust dint understand the condition. Its hard to be referred to a consultant which I now am, but access and help still limited. I've recently been put on t3 alongside levothyroxine but not noticed an improvement. Just gotta keep carrying on.
Sending you a big hug back 💕, it feels like a lonely journey, this thyroid thing, This group has really helped me not to slip too far into panic and apathy over the last 2 days - at least we have each other xX
Hi Stormsy . just to say well done for 'taking the plunge'.
Hanging around this forum ,(initially as a 'lurker' for 6 months when i just read and didn't post anything) has proved to be very good for improving my mental health . which was 'lousy' when i first stumbled across the forum .
The isolation , due to no -one around us (including the Doctor) understanding or even believing we still have problems despite being 'treated ' is insidious , and after years of it , i'd more or less stopped talking to anyone ,about anything ..... but as a direct result of being on here , and reading the experiences and histories of others and then gradually joining in as i got to feel safe doing so , my self confidence returned ... (and not just in 'dealing with Doctors' ....in all aspects of my life) Mostly because i no longer feel like 'a fraud making a fuss about nothing' .. i now believe myself .,... it's NOT "just me" ... and it never was.
I'm aware every day that for each person who takes the plunge and posts on here, there are dozens more lurkers who are still just reading and learning ..... and so this reply is for them as much as it is for you ........ welcome to the forum
Your GP is talking total tosh! It is not the TSH that causes osteoporosis!! In any case the jury is out on that topic. As for Afib what on earth is ure GP on about?!!! Maybe your GP would like to consider the long term effect on undermedication & what that does to the heart (never mind the rest of the body.) Yet another GP that hasnt a clue, causing harm to patients. Ask him for the proven evidence for his claims. It's not there..... do it politely but firmly. Your thyroid levels, are fairly low, especially your ft3. He should never have reduced your dose. It maybe you need some T3. The effects on your iron levels are a consequence of being on too low a dose and not being optimal.
As for taking 3months off work - clearly that's what ure GP dreams of but most of us have to make a living! Is he going to recompence you your loss of earnings then? Absolute bull! And not good enough.
Doctor's obsession with TSH is often causing more problems for patients than it solves.
TSH is a pituitary, not a thyroid, hormone it reflects the level of thyroid hormones in the serum but crucially does not give the level of each individual hormone....FT4 and FT3.
FT3 is the most important reading followed by FT4....according to science!
T3 is the active hormone and for good health needs to saturate almost all the cels in the body
Low FT3= poor health
We really need reference ranges for your results but it looks as if your FT3 is very low.
it also looks as if you may not be adequately converting T4 to T3 meaning FT4 remains relatively high and that high FT4 is possibly lowering your TSH.....and putting the cat among the pigeons.
Please try and post the ref ranges ....then we can make some progress
it’s definitely worth getting the full range of tests including vitamins like D, folate, b12 iron etc as these being low can give you the symptoms you mention and getting them higher can really help. but if your t3 is still that low, it does look like you’re not converting well and could maybe go with adding in some liothyronine.
The accepted conversion ratio when taking T4 - Levothyroxine is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when they come is this range at 4 or under.
So to find how well you are converting the T4 - a storage hormone - into T3 the active hormone that runs all your bodily functions you simply divide your T4 by your T3 result.
I'm getting your conversion coming in at around 5.15 - showing poor conversion:
Conversion can be compromised by non -optimal levels ferritin, folate, B12 and vitamin D and inflammation, antibodies and any physiological stress ( emotional or physical ) plus depression, dieting and ageing can all down regulate T4 to T3 conversion.
The TSH was originally introduced as a diagnostic tool to identify someone dealing with hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement as then you must be dosed and monitored on you T3 and T4 levels being balanced in the ranges at around a 1/4 ratio T3/T4.
What is the reason for your hypothyroidism- do you have a auto immune disease ?
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well- being, your inner central heating system and your metabolism.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Test was done at 15:30😔and I'd taken my Levo in the morning.
I take a vitamin D3 Spray from Betteru, 3000iu , and I take a B vits supplement. My B12 was low in the past (although I do have intrinsic factor) and I was on injections pre-covid, they stopped those and I was given oral meds for just the B12, but I've altered to a full spectrum B complex over the counter.
I'm taking an iron supplement and have been for ages, but the haem is still only 124 (120-160 ) and can't seem to get the ferritin up.
I've never had my antibodies tested. My eosinophils are low 0.08 (0.1-0.5) but they didn't actually take any notice of those x
They are blaming all my symptoms on a slightly lower than average BMI, but that's due to a sternal structural defect that they are well aware of. I eat a lot of high calorie dense foods and am very careful to try and keep my weight up - but tbh it's quite hard to eat and stay cheerful when all this is so hard, and I feel now that I'm being punished for not getting my whight right - they are blaming it for cold, low BP and pulse and tiredness, no libido etc... - but I'm over the 18.5 on the BMI and I have small bones, so I don't really think it's a good answer x
Do you have online access to previous test results
Can you check if thyroid antibodies tested when initially diagnosed with hypothyroidism
Ask for retest thyroid test….ALWAYS book test as early as possible in morning, ideally just before 9am and last dose levothyroxine 24 hours before test
Request thyroid antibodies tested and coeliac blood test too
Low weight common with gluten intolerance/coeliac
Low vitamin levels should trigger test for coeliac too
Everywhere I researched when my ferritin was down at 22 said that ferritin needs to be at least over 70 for any thyroid hormone replacement to work well.
I know now that I need my ferritin up at around 100 :
Active B12 75 ++ - serum B12 500 ++
Folate at around 20 :
Vitamin D at around 100 :
So there's where you start :
When diagnosed what were you told and do you have the blood test report from that original blood test possibly showing antibody interaction ?
It might make sense to register for ' on- line access ' to your medical records, it's your legal right, and saves keep asking the receptionist for print outs of any blood test results.
Tiggs11 ...with that FT3 level it's little wonder you are struggling
Your FT3 result is only 25% through the reference range which by anyone's standards is abysmally low!
The aim is to have both Frees ( FT4 and FT3) sitting around 75% through the reference range ....with the caveat that this will vary for each patient because as human beings we are all different.
With machines it is easy to calibrate an accurate result to correlate the readings of (an instrument) with those of a standard in order to check the instrument's accuracy.....we are not machines but medics seem to forget this!
Your FT4 is 81% through the ref range....so without looking any further, comparing both Frees it is clear that your conversion rate is very poor. Were it good your FT3 would have risen to roughly the same %age
That FT4 level has lowered your TSH which is causing your GP to unnecessarily panic! He doesn't understand TSH!!!
The TSH test was first devised in the early 1970s to diagnose hypothyroidism....nothing else. It is a pituitary, not a thyroid, hormone and as such is not a reliable marker for monitoring thyroid function/ dosing.
It was later tweaked and used as a shortcut/ lazy way to monitor dosing etc. While it measures the overall level of thyroid hormones in the blood it does not measure the level of each thyroid hormone.....and there lies the problem that is causing so much difficulty.
In your case a low TSH is caused by that high level of FT4 that is not beng converted to T3....with no correlation to existing low FT3 and relating problems... so the cause is missed.
I suggest you have a full thyroid test to include TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies TPO and TG ( the latter totest for thyroid autoimmune disease/ Hashimoto's)
Many of us test privately because the NHS don't normally check all those important tests.
Following those tests you then need to optimise any nutrient deficiencies ...these need to be optimal to support thyroid function/ conversion
If that fails to raise FT3 then you need to add a little T3 because Levo alone is not likely to improve your health.
Neither is reducing from 125mcg levo!!
We only change one thing at a time if possible so I would suggest you initially add 5mcg T3 ( from a 20mcg tablet) to the 125mcg levo.....the T3 will naturally reduce the F4 in any case.
( If T3 tablet is 25mcg then use 6.2mcg)
Maintain that for 2 weeks and if no improvement add another 5mcg T3.....now 125mcg + 10mcg T3.
You have to listen to your body! Is this improving things?
10mcg might be enough....we don't know without trying. This is why clinical evaluation/ signs and symptoms must go hand in hand with lab numbers....modern medics often forget this!
After another 2 weeks if no improvement, add a further 5mcg...and repeat
if you reach 20mcg without improvement then test again and the results will point the way forward
At that point you can consider reducing levo to 100mcg.
There is no quick fix and it involves a lot of trial and error and considerable patience I'm afraid.
i need high dose T3-only to function and it took several years and considerable trial and error before I found my therapeutic dose.
The following might help you build a case for T3 prescription
Hi Tiggs, I’m sorry to hear how you are feeling and how your GP is treating you. I have been through exactly the same issues in the past.
Lots of good advice here. It wasn’t until I started doing private blood tests and grasping the fact that there is a world of difference between ‘normal’ and ‘optimal’ - and starting to trust my own judgement on how I feel - that I could engage proactively with an Endocrinologist (NHS) who changed my prescribing, and I now feel better than I have for 20 years.
It’s been far too long a journey to get here for me and I wish I’d realised much sooner that although I really like my GP and have never been treated badly, they don’t always know best .
You know how you feel : trust yourself above any other ‘opinion ‘. Remember that you are treating a whole person - a GP is responding to a number on a piece of paper and making a decision based on guidelines . That may be sufficient for a large number of people but it doesn’t mean it’s right for you .
Don’t be afraid to challenge your prescribing if you know you are unwell . If your GP says they cannot do anything else, request an Endo referral (which I did) and, armed with what I had learned mainly from this support group, everything has changed for me.
When I insisted on a referral my GP’s words were “well I’ll do one but I don’t see what he can do”- so I just said ‘thank you’.
So don’t be put off or made to think that your opinion doesn’t matter - it matters the most !
Due to TSH getting lower later in the day make SURE next blood test the doctor see's is done early am and with 24 hr gap from last dose Levo . Should hopefully result in the TSH 'appearing' to be marginally higher ,and slightly lower fT4.( even if nothing has 'actually' changed ). Even if it means you have to wait several weeks to get a blood test slot at 9 am , don't accept one near midday / afternoon . Most Doctors / receptionists won't accept the need for an early morning test for TSH as most of them are either unaware of the circadian rhythm, or have been told the effect is insignificant... but its significant to you if it means your dose is reduced. Rather than argue the toss , i usually just say i can only make it @ 9 am 'due to work commitments' , and if one is suddenly sprung on me while at GP's , i tend to have 'a train to catch' and say i'll come in tomorrow instead .
addressing the other issues mentioned in replies and also waiting another few months on same dose will hopefully allow TSH to 'really' increase a bit, and may improve conversion of T4 to T3 . which will hopefully mean you feel better.
be aware that if you add metavive , it will possibly lower TSH further ( if lower is possible) , and raise fT4 ,,, which often just leads to Doctor reducing Levo prescription even more .... once you start down that road you are looking at having to self source extra Levo too.. and potentially having them stop prescribing it all together .
I felt like you 3 years ago, with patience, this fantastic forum I am much much better now, still room for improvement, low and slow is my mantra... 🌸🌸🌸🌸
If all else fails, Metavive works, but it will confuse the results of your next blood tests, and you may end up with the doctor lowering your dose further and further and having to take more Metavive to make up for it. The 'TSH Lag' is a real thing - it took my TSH 2-3 years to recover from me being overmedicated.
Getting your vitamins and ferritin up to healthy levels - at least half way up their ranges - will make your body much better able to use the Levothyroxine you are taking, and therefore improve your symptoms.
I have noticed many similar posts. I wonder if after a certain period of time on medication, TSH is just unable to be raised in some hypothyroid patients, no matter how low GPs or others insist in reductions of levo. This seems to be making many patients very ill indeed. It would make sense in that, the initial lack of hormones is being replaced by the meds. Why would the TSH loop even become necessary after the hormones are being replaced, especially after fairly long treatment? This winter is going to be very difficult for many hypothyroids. We just find so much difficulty with the cold. Our personal thermometers mostly do not work either way. Sometimes too hot but mostly too cold. My advice under no circumstances consider dropping your meds at this time of year. Get some more knowledge from the administrators and set a new path. Sounds like your doctor is no better informed than most.
apparently the pituitary gland (which produces TSH) can shrink a bit when it's not been needing to produce much TSH for a while (think diogenes mentioned this in a recent reply) .. and it takes a bit of time to grow again , even when more TSH is needed ~ or words to that effect .. if i can find his reply i'll add it later .
Tiggs11 ..... Found it ... it's a whole post , not just a reply ... even better . healthunlocked.com/thyroidu... why-tsh-only-responds-to-change-of-circumstances-after-a-long-delay-if-at-all?
( diogenes is a respected ' scientist and thyroid researcher . co- author of many accepted papers on the subject, and inventor of the fT4 and fT3 tests , and advisor to Thyroiduk)
Quoting diogenes..."This study again casts doubt on the value of TSH as an indicator of thyroid hormone sufficiency, especially in longterm therapy. These studies show what T4 longterm takers know well. And doctors ought to know."
Also ..see the link I added above with diogenes as first author ( Dr John Midgley)
FT3 is the most important lab followed by FT4
TSH fixation is causing the problem
It's not so scary when you dismiss the "fluff" and unfounded scaremongering and concentrate on the substance .....which your GP seems incapable of doing
You need to optimise the essential nutrients and add some T3!
It's not rocket science... "they" need to focus on the science not just on the often unverified opinions of the decision makers
Sorry to harp on, but I get really frustrated by the rediculously poor thyroid treatment patients have to endure at the hands of incompetent medics. The posts on this forum underline this.
Thank you, you're not harping on at all, it's good to know we're not alone. I feel c**p too, my thyroid results are very similar except I have raised ferritin but as I previously posted "the Professor " at QE Birmingham still totally believes tsh is the only number to see. She probably still believes in father Christmas too. Still awaiting her to lower herself and contact me following a normal cardiology appt. Think they're trying to get us to give in to lower their caseloads.
Thank you....yes I used to feel it was just me that wasn't recovering on Levo until I found this amazing site and started to research my condition with the help of a group of very knowledgeable members.
My GP was convinced I was killing myself with high dose T3-only so sent me for a heart scan
Result.... healthy heart.. I was taking 200mcg at the time and was aged 74 ( now 77)
I discovered that I have a form of Thyroid Hormone Resistance.
I've now been able to reduce my dose to 125mcg ....most likely because some of the dormant T3 receptors have been re- activated by the force of the high dose.
Over to you....
Two months ago you posted these results
T3 3.2 (3.1-6.8) 2.7% in range
FT4 17 (12-22) 50% in range
TSH 0.72 (0.27 - 4.2) 11.17% in range.
Your conversion is very poor....you need T3!
It's tantemount to criminal neglect that those of us who can clinically prove that we need T3 are fobbed off with excuses with more holes than a sieve.
Thank you, I know and will, so glad you're doing well, hope for me too. It is neglect in my eyes too but I can't prove it. I'm awaiting next in line to God to get back to me, I know I should just restart T3 but somehow I'm not brave enough. I'm just one of them that likes to have it in writing, I'm going to have to put my big girl pants on and do it as this is existing not living. Thanks again for your support xxx
Oh I was so happy to find this reference. I was wondering how I had missed it. Scrolling down the comments I saw I had made a contribution. Obviously it must have been on a less than good day! Thank you for highlighting it. I will just have to get over my embarrassment!
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