Apologies in advance whilst I try to condense back story (prior posts refer) in relation to blood tests.
Had been on a steady dose of 125mcg for the last few years, (have Hashis’) with some residual issues. Though didn’t feel too bad there was definitely room for improvement with regards, specifically sporadic tiredness, weight gain, muscle fatigue and breathlessness. This has never resolved even though I stopped smoking. Understand now this could be a thyroid issue
Following excellent advice here improved vitamins, my results in August 18 were encouraging, heading in the right direction and was beginning to feel much better.
TSH 0.641 ( 0.27 - 4.2)
FT3 5.11 ( 3.1 - 6.8)
FT4 20.06 ( 12-22)
A year later, no changes, test under the same condition and was surprised to see that FT3 had dropped, but with an increase to T4
Aug 19
TSH 0.257 ( same ranges as above)
FT3 4.31
T4 22.7
Reduced levo slightly to see if this improved FT3, believing the increased FT4 may be converting to rT3
Nov 19 result: 125mcg x5 / 100mcg x2
TSH - 1.73
FT3 - 3.99
FT4 18.3
Felt rubbish so reverted back to original 125mcg
Jan 20 result: 125mcg x7
TSH - 1.08
FT3 - 5.06
FT4 - 22.10
Since the above results have tried to increase slightly, 150mcg x3 125mcg x4 but not feeling great, and am struggling to preserve, keep chopping and changing my mind. Will follow the above regime for a couple of weeks and then go back to 125mcg for a few days to see if some of the issues abate. I fully appreciate this is absolutely the wrong thing to do and I need to keep to a consistent regime for at least 6 weeks to understand how my thyroid is behaving. However my temperature has dropped since I started tweaking the amount of levo, more noticeable since trying to adopt an increase in Jan. For the last few years temperature varied from 36.2 – 36.6, and stayed consistent within these ranges. More recently i have recorded a temperature of 34.8, though a one off, my morning temperature is circa 35.1 and never goes any higher than 35.7. I am constantly cold. This and the onset of a daily headache which I have had for the last few weeks is why i have been toing and froing on maintaining the increase, though also acknowledge that an increase may be exactly what my body needs.
I am aware that no one can make this decision for me, but would be greatly interested in your views as I have no idea why I now feel so terrible. Are temperature / headaches a red herring?
Should I maintain the increase for 6 weeks with no changes and preserve, or revert back to the 125mcg to get a base line in order to make an informed decision about the addition of T3.
I have no issue in having an over range FT4, but now wondering if this will only have a negative impact on T3. I also don’t why my TSH, appreciate you don’t dose by this has been above 1, when for the last few years it always been under and sometimes supressed. I appreciate I won’t know unless I carry on, but getting frustrated that I haven’t felt OK since last summer and becoming impatient.
The only other thing that has changed is that for the last 10 months or so, I have insisted on having the same brand, mercury pharma, whereas previously I would accept any brand other than teva. Thought this would bring about some positives, but since then my FT4 has been top / over range. Don’t believe this would be a factor, but it’s the only material difference since my results in August 18. All vitamins are optimal
Any thoughts, encouragement would be greatly received 😊
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LisaG28
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Very common for conversion to get worse at menopause or after years on levothyroxine....especially with hashimoto’s
Are you on strictly gluten free diet or dairy free diet....or tried either
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)."
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
Some of us actually find conversion gets worse if raise levothyroxine dose higher.....which seems to be what you are finding
Conversion only good enough, if not on high enough dose of levothyroxine........is catch 22
If that’s the case you may need small dose of T3 added alongside levothyroxine
if you can stick on constant unchanging dose for 6-8 weeks before testing you may get better idea what’s happening
Thanks SlowDragon, I'm 53 and have gone through menopause, but what you say makes perfect sense in terms of conversion being impacted. Just need to make a decision on persevering with the slightly increaded dose, or reduce back and hold for 6 weeks.
Have just got home from work and my temperature is still only 35.1, so something is going on, that wasn't a factor previously.
I am gluten free but haven't eliminated dairy, may have a look at this.
I know you often mention the DIO2 test, and this may be my next step, as opposed trying to chase the illusive conversion which may never materalise, however do you know if you have to pay for the required consultation if it comes back negative, you dont have/ inherited the faulty gene. Not sure I've framed that correctly.
Thanks, I will do. Absolutely have no issue for paying for interpretation of the results if there is something to comment on. Will update in case its useful for others considering
Hi SlowDragon, In the end I didn't given there is little chance of being prescribed T3 under my CCG, Croydon. I have persevered since I posted the above, went strictly gluten free and have continued to test. Same result regardless, high / over range T4, mid range / low T3. Today have made the decision to trial T3 sourced privately to see if this is the answer. Fingers crossed!
LisaG28, it sounds like you have a good understanding of how to analyse these results, so I'll just give a few comments.
The highest your freeT3 has been is about halfway through the range, which is probably too low. Most people will feel better with it in the top third or so.
Its okay to take freeT4 a little over the top, some people need it that high in order to make enough T3.
In general you need to stay on a new dose for at least 6 weeks to see how it's going to settle for you. This is doubly true with Levo, because it's slow acting. In my experience during the first few weeks of a dose change almost anything can happen, I can feel overmedicated, undermedicated, a completely new symptom can appear, I can be very cold, very hot, etc, etc. You can't take anything too seriously until it has persisted for at least that 6 weeks. I sometimes push on to 8 weeks or more if something looks puzzling.
As you've been undermedicated for several years, you could maybe do your increase quite a bit more slowly if you're getting troubling symptoms as you raise.
Looking at your results you've had a fairly substantial freeT4 the whole time, with low freeT3s, so it is very probable that you'll need some T3 in the end. If you've already got good access to it, then you might as well start it sooner rather than later. If there are logistical issues then it may be worth trying a higher Levo dose first, but I don't think you need to do it.
Many thanks SilverAvocado, really appreciate your input. On reflection you are spot on with regards my T4, though I have included only my more recent medicheck results, those under the GP had my T4 always at the top end, from 18 to 22. The only time i have felt really well was a couple of months in 2015, T4 circa 21, lost weight and was full of energy, however this was before I joined this forum and understood about T4/ T3 and conversion. Therefore I have no idea on what to aim for as T3 wasn't tested, so I simply don't have a handle on where this needs to be to feel well.
Though will continue to hold current dose to see if there are any improvements, I will also start a separate thread requesting details of any supplier. Quite convinced, like you say that I will need a small amount of T3.
Thanks once again, it is always reassuring to know that I'm on the right path and interpreting my results correctly
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