My latest blood results show that my thyroid hormone levels are low:
TSH 0.44 (0.27 – 0.42)
T3 3.8 (3.1 – 6.8)
T4 14.7 (12 – 22)
I have Hashimoto's and take levothyroxine (100 x5 days/week; 125 x2 days/week ) and 10 mcg T3 once daily.
My endocrinologist is of the view that TSH tells us whether the body needs more - and having a relatively low TSH like mine suggests all is well. However, I feel rubbish and would like to have a conversation about increasing my dose to aim for top half or top quartile hormone levels. I know that many people on this forum feel better when their levels are higher, but I'm wondering if there's anything beyond patient testimonials that I could use to make the case to my consultant (e.g. studies, treatment guidelines etc.)?
Many thanks!
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Dr Toft's article, he was past president of the British Thyroid Foundation and leading endocrinologist so you'd hope his opinion counted for something:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your endo.
Also
From the British Thyroid Foundation, which is backing up what Dr Toft says:
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
SeasideSusie can I ask another question about the Dr Toft quote?
"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."
Reading this again, it seems to suggest that the focus of treatment should be on getting TSH down in order to feel well, and that the higher levels of T3 and T4 are an incidental conseqeunce.
In my case, TSH is in the 'target zone' but my hormone levels are low. Do you think it would be stretching the intended meaning of the article to say that optimal treatment for some patients involves focusing specifically on getting T3 and T4 into the upper part of their ranges?
OK, scrap what I said before. The Toft article doesn't apply to you. I missed the fact that you take T3 in addition to your Levo, and his article is based on patients taking Levo only, so you can't use it.
My endocrinologist is of the view that TSH tells us whether the body needs more - and having a relatively low TSH like mine suggests all is well.
I think what your endo is missing, and if he is prescribing T3 he should actually know this, is that taking T3 tends to suppress TSH (it's just what it does) and therefore it's the FT3 that is more important test.
When on combination hormone replacement we are very individual as to where we need our hormone levels. Some are fine with a low FT4 as long as FT3 is in the upper part of it's range. Some need FT4 and FT3 balanced and both in the upper part of their ranges. Personally I need both FT4 and FT3 around 60-70% through range. So the aim is to get FT4 and FT3 where you need them to feel well and ignore the TSH because at best it will be low but likely to be suppressed.
Your results show your FT3 is just 18.92% through it's range which is very low for someone taking T3.
Your FT4 is 27% through range and that might be an OK level for you but your FT3 level isn't. You need more T3.
I believe the NHS might only prescribe a maximum of 20mcg (depending on area) so you might have scope to get an increase. Whether 20mcg will eventually be enough isn't possible to say. Combination hormone replacement takes a lot of gradual tweaking of doses (only change one at a time, never both Levo and T3 together) to find our sweet spot.
As your endo seems to be focussed on TSH I have my doubts as to whether you will ever be optimally treated by him.
Ok - thank you. I’ll just approach the conversation like that and see if it works. My hormone levels are the lowest they’ve been since I started treatment, (and are lower now with the addition of T3 than when on Levo only which is confusing), so I think it’s fair for me to request a raise in dose.
Did your endo lower your dose of Levo when T3 was added?
If your endo lowered your FT4 when T3 was added, you'd get the double whammy of the lower dose of Levo lowering your FT4 plus the fact that you're taking T3 lowering FT4.
If your FT4 was over range or at the top of the range then lowering dose of Levo when adding T3 would be right thing to do.
If your FT4 was lower than, say, 75% through range then there would be no real need to lower dose of Levo, it would be better to add the T3 first then see how levels are affected before deciding on next step.
I'm not medically qualified but my own experience of adding T3 to Levo due to poor conversion has had me go through lots of different scenarios and I learned a lot on the journey!
I added T3 in April with only a slight reduction in Levo (I used to take 125 x 4 days/week and 100 x 3 days/week; now I take 100 x 5 days/week and 125 x 2 days/week --> so a total reduction of just 50mcg per week).
Levels before T3 was added were:
T3 – range 2.63 - 5.7*
Feb 4.86 (73% through range)
March 4 (45% through range)
T4 – range 9 - 22*
Feb 17.6 (66% through range)
March 13.9 (38% through range)
TSH – range 0.35 - 4.94*
Feb 0.11
March 0.22
*Different lab to latest test results at top of this thread, but all tests conducted in identical circumstances (at same time of day, fasting, delaying medication).
Based on your suggestion, maybe I should ask for previous Levo dose to be reinstated (or even raised above original levels).
It's hard to know what's working as I have had (brief) periods of feeling good, but then seem to get these crashes that coincide with low hormone levels for apparently no reason 😕
I really don't know why your endo introduced T3. In both tests your FT4 and FT3 were reasonably well balanced, there is no real evidence of poor conversion. There is quite a difference between the results and this could be Hashi's activity if the tests were both done the same circumstances as we advise. Your last sentence illustrates Hashi's.
I do have Hashi's (confirmed with antibody test) and I also suspect the fluctuations are caused by flare ups / attacks... however, the endocrinologist doesn't really subscribe to the idea of the underlying condition causing fluctuations in levels - the theory being that replacement hormone overrides whatever may be happening in your actual thyroid gland. That doesn't reflect how I feel, and my results are all over the place, but I suspect it might be an even harder argument to win. I wasn't going to get an increase in Levo, so I just thought "take the T3 that's being offered" , but I agree with you it's probably unneccessary and could be taken care of with an increase in Levo.
Devon CCG has the ridiculous maximum limit of 20mcg T3 daily. I don't know of any other CCG putting a limit on the dose. No one would give a diabetic only half or a third of the insulin they need.Of course many CCGs still don't allow any at all.
I have in the past experimented with going gluten free but unfortuantely it didn't make any difference. I still have bad flare-ups that feel like IBS, but I can't connect them to particular foods - I'm starting to think it's just my body's way of reacting to too low thyroid hormone levels...
Not sure if this is of interest to you, but i'm working with a team who are treating based on how you feel including your blood results, rather than just your blood work by itself. They're called hypothyroidmom.com/ and are based in the US. I had my virtual consolation last week with a naturopathic doctor called Dr Rex Wilson, he was very good. The medical company is overseen by a thyroid specialist called Dr Daryl Turner. He has lots of videos on youtube as the inventor of the Thyroflex machine. I'm now being prescribed natural thyroid hormones to help with my low (but in range), thyroid hormones.
Thank you, LPLx - really interesting! I’ll have a look online at some of the videos.
I’m certainly not dismissing the possibility of trying a different consultant…but I also feel like perhaps I haven’t given it long enough (started treatment almost a year ago) and generally my endocrinologist is empathetic and open to trying new things. Also, I take liquid thyroxine + T3 and I get this on the NHS which I feel very lucky about and so a little reluctant to move to a different team and potentially lose what I have at the moment… I will definitely keep it in mind though as I feel like I’m running out of options (and patience!)
Thank you again and best of luck to you - would be great to hear how you get on with the natural hormones 😊
This makes perfect sense! I just thought i'd put the option out there, as it's great to have back up plans too, as it's our bodies at the end of the day and we know how our bodies feel and it's so frustrating when we're told how we feel!
All the best on your journey to recovery and I will update you with the natural hormones.
I think I'd try the following tack: say well we can see that I'm fairly low in the ranges and have such a lot of continuing symptoms... I hear the aim of medication for thyroid is to resolve symptoms rather than hit a particular number... I'd like to ask for your support to try a raise in dose to see if I can resolve these symptoms... and then retest in 6-8 weeks and see if another raise is necessary. Perhaps say if pushed you'd hate to go off and self medicate as you really appreciate their support but suggest you simply can't cope with the current symptoms... making you depressed, relationship suffering etc.
Basically try and get the doc on your side! Failing that I would consider buying extra meds privately or seeing another doc.
Thanks JAmanda - that makes a load of sense! I'm cautiously optimistic that my consultant will want to help, I just thought I might be able to bolster my case if I could find some 'evidence' to support it. However, as you've put it it sounds pretty compelling, so I'll start there - thank you! 🤞
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