Very quick background - 36 year old, formerly fit and healthy male, have been suffering increasingly debilitating symptoms for 3-4 years. I have a demanding job which I'm now physically and mentally struggling to manage, and feel absolutely dreadful in general.
A few months ago I found a thyroid specialist prepared to treat what was technically 'subclinical hypothyroidism', on the basis of a steadily increasing TSH reading over the years, and my extensive symptoms. These are my most recent bloods, pre-treatment:
TSH - 4.9
FT4 - 18.9 pmol/l [12 - 22]
FT3 - 5.2 pmol/l [3.1 - 6.8]
I was initially prescribed 25mcg levothyroxine for an initial 6 weeks. After about 4 weeks, I felt amazing in so many different ways, but then things soon went back to how they were. After those 6 weeks, these were my results:
TSH - 2.6
FT4 - 15.7 pmol/l [12 - 22]
FT3 - 3.9 pmol/l [3.1 - 6.8]
Perversely (at least to me), my TSH had gone down, but so had both my FT4 and FT3, which seems counter-intuitive. My specialist decided to increase my dose, but only very slightly - to 37.5mcg (1 tablet one day, 2 the next). I'm not due for a follow-up test and re-evaluation until early September, but I've begun feeling absolutely dreadful and so I decided to get another blood test in the meantime which I took on Monday. Here are my readings now:
TSH - 3.1
FT4 - 18.5 pmol/l [12 - 22]
FT3 - 4.8 pmol/l [3.1 - 6.8]
So, TSH has now risen slightly, whilst FT4 and FT3 have also increased but are still below my pre-treatment levels.
As a layman, I find these patterns somewhat baffling. I feel like things aren't 'working', and my bloods would appear to back that up. But what next? Do I need a [significantly?] stronger dose of levothryoxine, a T4/T3 based medication, or something else?
I appreciate that it takes time to get medication right, and my doctor is probably erring on the side of caution of not swinging the pendulum too far in the other direction. But time isn't exactly on my side, I feel like I am at risk of losing my job - I am physically, mentally and emotionally exhausted, absolutely fed up and barely able to function as a husband, father and employee right now. I just can't continue like this.
Thoughts very welcome. Thank you!
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JonnyA
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For someone of your age, you are going extremely slowly! It is more normal to start of 50 mcg of levo, or a weight-based dose [1.6 mcg per kg of weight, rounded up] - and to increase by 25 mcg a day at a time.
Your experience though is pretty normal, although it feels counter-intuitive. This is because levo doesn't "top-up" the hormone your body makes: it replaces it. So for the first few days, you were getting what your body made PLUS the extra from the meds; then your body started to reduce what it produces itself, so you are now probably getting a total of LESS than you started (if that makes sense) ... this is why doses need frequent re-testing and increasing until the meds supply what your body needs.
So you don't need T3 meds - you just need (probably quite a lot) more levo - so try an get a full extra 25 mcg a day in Sep. And it would be worth testing your key nutrients - ferritin folate vit D and B12 - as you need these to be good for your levo to work best and so many of us hypos need to supplement.
And remember always to have an early morning (before 9am) fasting blood test, when TSH is highest, and leave 24 hours from your previous dose of levo (take the next straight afterwards). Good luck
Thanks for that. I’m currently around 80kg (up, almost uncontrollably, despite regular exercise and a healthy diet, from 68kg) so based on the 1.6mcg per kg ratio that would be a dose of around 150mcg if my rounded mental arithmetic is correct.
Is it possible I might need that much? I feel frighteningly far away from that dosage right now.
That's a pretty standard dose, don't be frightened by it. Doctors think that they will cause heart problems by putting doses up but frankly you're a long way from that. Also don't try to lose weight and exercise will deplete T3 so don't overdo it until you are correctly medicated
I'm a LOT littler than 80 kg but was (eventually) on 150 mcg 4 days a week before poor conversion was detected - it's not that high a dose - many people take 200mcg+ but at the end of the day you need to get to the dose you need.
I suggest you ask the GP why you have been started on such a low dose and then increased so very slowly - SlowDragon has helpfully given you the link to the NICE guidelines. Unfortunately, many of us have found we need to take charge of our health, our meds and our testing - the GPs lag horribly behind ...
This came on the back of dropping about 6 - 7 stone over the course of 2016 and 2017 (to around 10.5 stone) - all intentional through diet and training.
Despite this, blood tests have always argued against a case of hypothyroidism (with the following TSH recorded over the last few years:
2018 - 0.72
2019 - 1.9
2020 - 2.4
2021 (last week) - 4.7
I’m currently around 80kg (up, almost uncontrollably, despite regular exercise and a healthy diet, from 68kg)
Did you take any diet “supplements or aids” when you lost such a substantial amount of weight?
TSH started rising after this dramatic weight loss
Are you now actually eating ENOUGH food
Continuously starving yourself results in down regulation of thyroid and poor conversion of Ft4 to ft3
The TSH is somewhat meaningless, as for a variety of reasons is not always a reliable indicator of thyroid hormone levels. You are also still in the throes of early treatment which often decreases TSH even without adeqaute thyroid hormone levels because it has sensed a sudden additional level, and so backs off for a while before realising actually more is needed and so fluctuating.
The bad news is thyroid hormones can take many months to balance and make you truly euthyroid. By rushing to elevate levels you risk unbalancing any one of the processes such as absorbtion, conversion, utilisation, excretion, etc all that have to work with many other bodily systems. Commonly seen problems in members who raise too quickly are elevations in transport protein carriers that risk excessive binding of other hormones, so lowering their 'free' availability. Or stressing adrenals that start secreting adrenaline making members feel jittery, shaky and inducing panic attacks. Also your body has to get used to clearing higher levels of excess hormone, otherwise it risks ending up recirculating.
You do not need to switch your meds at this moment in time as by doing so could prove counter productive if you were not to need additional T3. If tests were taken like-for-like your levels have already improved at FT4 60% & FT3 46% through range, and you have room for another dose increase in september when you have your follow up. When levels are eventually optimised you then need to wait several months as symptoms often lag behind good biochemistry.
Also, it isn’t just about the numbers but encouraging meds to be effective by ensuring essential cofactors are optimised such as iron, VitB12, folate & Vit D. Address any gut issues to prevent impaired absorbtion & conversion of thyroid hormones. Yes, a small amount converts in the gut, a larger amount in the liver so cutting down on alcohol /fatty foods/excess coffee, etc, and supplementing a liver clearence such as milk thistle can be helpful. Also optimsing Vit C to support the adrenal glands.
And then if symptoms were still to persist you could start looking at other hormones such as testosterone which is commonly low in males with inadeqaute thyroid hormone, or cortisol. Remember hormones do not work in isolation but together, and an elevation or deficiency somewhere up the line will be felt further down somewhere.
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.
EXACTLY what vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
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)
hi, by way of comparison. Diagnosed age 37 . had a very physical job.
I was only ever around 60Kg.
My TSH was 5.7/6.8.
I was prescribed 50mcg for 7 weeks .felt better for a few weeks, then less good again. TSH was 2.9
I took 100mcg for 3 months. felt better for longer this time, then less good again. TSH was 2.5 . so GP let me carry on.
I took 150mcg for 3 months . felt ok (about 80% better overall) not quite my former self , but i could manage. TSH was 2.7 so GP let me carry on.
9 months later i felt less good again.. i tried 175 ? ish for a month, but it didn't improve how i felt this time . had blood test 0.001 / fT4 36[13-26] .GP said don't take more than 150mcg.
Took 150mcg again for 2 months TSH rose a bit to 0.09 [0.02-6] / fT4 28 [13-26].
A year later we tried 125mcg for 2 months . TSH rose to 0.69 /fT4 20 [13-26] but i felt naff on the lower dose so went back to 150mcg TSH was 0.1 /fT4 23 [13-26] .
result and how i felt( ie. good enough to manage work , not good enough to have as much fun after work as i used) stayed similar level to that for the next 10yrs. on 150mcg.
My point .... i'm not surprised you feel rubbish on the tiny dose you have been given.
Some doctors seem to look at thyroid hormone like .. 'if you are only a little bit hypo, then we only need to top it up a little bit' ... but the system is more complex than that .. every time you add a little T4, the pituitary notices and produces less TSH ,so you produce less of your own T4 .... if you don't add enough to keep this system balanced to "more T4 than you had when you were diagnosed" , you will be worse off on treatment than you were before.
It's a bit like trying to top the bath up without the plug in properly ....
Ask to be got onto a full replacement dose quicker then they have been doing , aiming to get TSH closer to 1.
See this graph .. most common level for healthy peoples TSH is around 1 healthunlocked.com/thyroidu... tsh-levels-in-healthy-people-with-no-known-thyroid-disease
See this article in GPonline , for TSH level GP's should aim for healthunlocked.com/thyroidu.... gps-told-keep-tsh-0.5-2pmol-l-hypothyroidism-causes-raised-cholesterol-thyroid-disease-effects-on-heart-and-cardiovascular-system.
(If they don't agree to increase appropriately .... you could consider doing what i did .. put it up by a sensible amount yourself 6 weeks before your next blood test .. tell the blood nurse what dose you've been taking ... assuming TSH still comes back within range and fT4 is within range.. then GP will have no grounds to ask you to reduce again , and will have to increase your prescription if you prefer that dose.
...if i was doing it again knowing what i know now ,i'd have gone up in 25mcg's and when i got near the full dose fine tuned by adjusted in 12.5mcgs .. i now realise even 12.5mcg up or down can make a big difference .
Well certainly stress at work has a detrimental effect on your health and then coupled with your concerns about your health then no wonder you feel exhausted. I was very lucky as soon as I explained my medical problems to my employer in 2015 they were excellent. They gave me the opportunity to work from home 3 days a week and helped me get the right work life balance. It was actually a big weight off my mind once I had shared things with my senior manager and occupational health. Now I appreciate not everyone is so lucky with their company. But I would urge you to think about talking to them in confidence. You may be surprised at their response. I know I was.
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