Hi all. How have I only just found this site! I put a post on yesterday to ask about extreme abdominal bloating leading to my hypothyroid diagnosis and I got so much great advice. I thought I would start another post with a different query for more information.
I’m basically looking for advice on publications or guidelines on the optimum TSH, T4 and T3 levels while on treatment that I can discuss with my GP when I go back and see him with my most recent results.
My results are as follows-
November 2019 TSH=69 (027-4.2) T4=7.2 (10-22) and T3 wasn’t checked. I started on levothyroxine 100mcg daily
March 2020 TSH=1.23 T4=18 T3=3.5 (3.1-6.8)
So I read on Thyroid UK’s website that hypothyroid patients do better when their TSH is at the very low end of normal and their T4 can be slightly above the high end of the range without any problems. However I’m looking for a bit more information on this to take along to my GP as I still have all the initial symptoms I saw my GP about before starting treatment (severe abdominal bloating, feeling cold, brain fog, fatigue) and I would like to have my levothyroxine dose increased to 125mcg daily.
I’m a prescribing pharmacist so I totally understand that my GP might not want to increase my dose as my levels are ‘normal’ so I would like to research this as much as possible before I see him.
Thanks
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Wellhellothere101
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So I read on Thyroid UK’s website that hypothyroid patients do better when their TSH is at the very low end of normal and their T4 can be slightly above the high end of the range without any problems. However I’m looking for a bit more information on this to take along to my GP
This will be from Dr Toft's article 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).*"
*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 doctor.
As far as I am aware, there is very little other evidence as doctors are fixated on TSH and tend to use that alone for deciding on dose of Levo.
Assuming that your March FT4 range is the same as November, your FT4 is now 66.67% through range with FT3 a mere 10.1% through range.
Conversion of T4 to T3 can be helped by optimal nutrient levels - Vit D, B12, Folate and Ferritin.
Thanks. I’ll start on selenium and vit C daily. I think you linked brands before on my post yesterday. I was tested for HPylori when I had my endoscopy and it was negative. SIBO I totally understand however I am a critical care pharmacist and have worked in an acute hospital for years and I’ve never once come across an acknowledgment of this condition. I don’t think this is recognised by the medical profession is it?
I feel a course of rifaximin may help but I don’t know who would prescribe it for me.
I am having a sulphur breath test at the end of the month to determine if I have a bacterial overgrowth in my small intestine! This has been ordered by my gastroenterologist, I would also suggest looking into a low fodmap diet for the bloating it worked for me....
March 2000 - FT3 3.5 (3.1 - 6.8) is only 10.81% through the range, the result should be closer to 75% through the range.
You are undermedicated
Nov 2019 - FT4 7.2 (10 - 22) is -23.33% through the range.
Again result should be close to 75% through the range.
Was this result before or after you were prescribed 100mcg levo
Was that TSH 69 or 6.9? Big drop from 69 to 1.3 in 4/5 months!
However without having both FT4 and FT3 tested at the same time it is difficult to know what is happening to you on 100mcg levo. We need both numbers to work out if you are effectively converting the storage hormone T4 to the active hormone T3 which, for good health, is required by trillions of cells in the body.
Is the range for the March FT4 result the same as for Nov test i.e 10 - 22 (ranges vary from lab to lab)
IF so, FT4 18 (10 - 22) is 66.67% through the range which is "normal"
However with that, the FT3 being low at 3.5 (3.1 - 6.8) suggests that you are not effectively converting the storage hormone T4 to the active hormone T3 which, for good health, is required by trillions of cells in the body.
It is likely that once you have double checked the numbers, that firstly you need some more levo. Retest after 6 weeks on increased dose and if FT3 rises ...fine.
If not, and nutrients are optimal therefore supporting conversion then you may need some T3.
Sorry I’ll try and explain this a little clearer and put in an interim result too.
November 2019 at the point of diagnosis of hypothyroidism ie on no treatment yet my results were
TSH 69 (sixty nine) (0.27-4.2) free T4 7.2 (10-22) my GP didn’t test T3 at this stage and he diagnosed hypothyroidism and started me on levothyroxine 100mcg daily
January 2020 after I had been on levothyroxine for around 10 weeks
TSH 1.25 (0.27-4.2) free T4 22.5. (10-22) and again my GP didn’t check my T3. He wanted to reduce my dose of levo to 75mcg daily but I resisted this. As a note I took my dose of levo in the morning before the test and I was also on multivitamins which contained biotene. I didn’t know not to at this stage.
March 2020 ie on Friday
TSH 1.23 (0.27-4.2j free T4 18 (10-22) and I asked for a free T3 which was 3.5 (3.1-6.8) I didn’t take my morning levo the day of the blood test and I had stopped taking my multivitamins containing biotene 1 week before my blood test.
Your post was clear enough, thank you....just that the TSH of 69 raised a question
Surprised you were started on 100mcg levo despite the fact that your TSH was 69...your body must have been "working overtime" to adjust to that initial amount! 50mcg is the more usual starter dose'
In your shoes, and with your results, I would not be accepting a decrease to 75mcg, you need to trial an increase instead!
I suspect this medic is dosing by TSH which isn't helpful after an initial diagnostic test.
SeasideSusie has already given you the link to an excellent paper which explains.
If/when your GP does increase your dose (after these initial 10 weeks), then my thoughts above, remain i.e retest - must include FT3 - after 6 weeks on the increased dose and if FT3 rises ...fine.
If not, and FT3 remains low (while nutrients are optimal and therefore supporting conversion) then you may need some exogenous T3 because a lab result with high FT4 with low FT3 indicates poor conversion of T4 to T3 which I explained above.
This is often the result of a genetic polymorphism which can, should you wish to, be tested as follows...
Thank you so much. I’ll read that paper again but I didn’t initially understand it as I thought it related to hyperthyroidism and not hypothyroidism but I’ll spend a bit more time reading and trying to get my head round it! Interesting about the genetic testing. If, after an increase in dose of levo my free T3 levels don’t increase, I’ll definitely look into this more.
Thank you so much for all the advice. The information I’ve learned from this site over the weekend has been invaluable and would have probably taken me years to understand otherwise!
Assuming you do get a dose increase prescribed, I suggest you consider only implementing it slowly.
For example, 112.5 for a while before increasing to 125. Or alternate day dosing. Or whatever works for you.
Whilst I agree that you need an increase, as we approach an adequate dose, any increase should be done slowly, gently. If it is in your control you always have the choice of taking the higher dose for a few days, then dropping down for a day or two, if needed. (Having to go back to get a new prescription messes up these options. Hence best to get prescribed 125 and take what you need.)
thank you for this, I recently upped my Levo from 100 to 125 for a couple of days and felt pretty jittery so stopped for a day, and now think I will take 112.5 daily to see if that works. Otherwise, would you recommend 125 every other day? What's the best way to tell whether you are taking too much? i.e. symptoms? I am really susceptible to meds!
My story is that I very slowly increased to 100 and stayed there for a long time (can't actually remember how long - many months, years?).
Then I felt slightly under-dosed and tried an extra 25 and felt, well, wrong. Yes, possibly slightly jittery. Dropped back to 100 and initially felt better but very soon was convinced that I really was under-dosed. So went to 112.5 a day. (Luckily, I had UniPharma 12 microgram tablets which made it easy. I liked them!)
Eventually, same thing happened again, and I went round the same sort of loop - 112.5/125 alternating, etc. - then went to 125. And had my GP increase my prescription.
Currently feel it is right for me.
I did NOT like alternate day dosing. Better than being on too much or too little but somehow, wrong.
Incidentally, I did try Teva - got some 12.5 from GP to go along with my non-Teva100 tablets. I disliked them intensely despite them only being one ninth of my dose! Made my stomach uncomfortable. (Some people find Teva the best make for them.)
Thanks a lot, I'll try 112.5 (ish!) for a bit. I think I am undermedicated but as I am always super sensitive, I'll take it slow. Just waiting to see results when I am 'properly' medicated to see whether I should go on DTH.
Can I ask why the advice is always to increase slowly? I've been increasing every 8 weeks 25mg. However, my last increase was by 50mg (was increased from 100mg to 150mg). I've still felt absolutely no change in my symptoms at all, and no effects from the 50mg jump.
I'm due a blood test and then a dr's appointment when I'm back from my holiday in April, so obviously any upping of dose will be based on my blood results, but I'm starting to lose hope that levo will do anything for my symptoms.
The NICE guidelines now, broadly, recommend starting on a calculated total replacement dose based on body weight. If followed, that would have started me off on a dose higher than my current dose.
The traditional approach was to start on 50 micrograms and increment at 6-8 week intervals by 25 micrograms.
We are all different. But I believe both of these approaches are inappropriate.
Someone who is several hypothyroid probably needs to ramp up quite quickly. Starting on 25, then 50, then 75, and so on inordinately delays reaching an adequate dose. But it does appear that people need to pause at various points as they increase their dose.
I was emphasing slowness in a specific context:
as we approach an adequate dose, any increase should be done slowly, gently
If I were on 100 and then had my dose raised to 150, I suspect I would feel awful. We have seen all too many patients report that having their dose raised to a point of being clearly over-dosed was very unpleasant and also that it takes a long time to recover the situation.
But we are all different. If at 100 I was severely under-dosed, then jumping to 150 might make sense. I wasn't - I was just a little under-dosed. So 112.5, then, after quite a while, 125, made sense for me.
If you are on 150 micrograms a day and not feeling any different, it would be appropriate to consider why that might be. One possibility is having issues with absorption. Another is poor conversion. Or low iron levels.
Makes sense. I just see it on here a lot about upping doses slowly, and I wondered why when it seems quite common now for people to be started on 100mg. Unfortunately I was started on 25mg, so it feels like it's taken forever to get where I am. I'm quite disappointed that at 150mg I'm still not feeling any better.
Its very practical to get extra 25mg levo prescribed. You can split the pill and raise the dose gently. Even 6mg raise makes a difference although you will see the change in a month or so. Remember to avoid iron supplements close to levo.
Do you have a doc who thinks the bottom of any range, is just as good as the top? I.e. a doc who thinks lab numbers are more important than how you feel? If so, you have the gargantuan task of making him switch his mind from lab test values, to how you feel.
But if you still really want to focus on lab tests: #1 most important thing for me is FT3. I make sure my FT3 (get TBG out of the picture) is in the middle of the 2.77-5.27 pg/ml range which my lab uses. I want to avoid the bottom half of the range, because I do not trust the people who compile values from "normal" people, to insure that every subject they used, was truly healthy.
Hello ..I found that changing to sourdough bread made a huge difference and no more bloating - and on the odd occasion I have ‘normal’ bread I feel like I’m being pumped up! Sadly it hasn’t shifted any fat but that’s more down to me! Good luck and yes you are probably undertreated ..symptoms are all important.
Thnak. I'm trying to go completely gluten free so I can't even have sourdough unfortunately. It's the only bread I would ever eat so I'm kind of gutted about that!
Oh well if you had symptoms while only having sourdough that’s a shame. I was pleased to find it was the added yeast that was my problem and of course can still have yeast extract which I love!
Thanks. I did put up a post with my last blood results when I was on 100mg, didn't update that the Dr upped me straight to 150mg.
I've got access to T3 (bought 14 boxes in Greece) but the consensus on my last post was that although my T3 levels weren't great, I was better to try and keep on with levo for a while, and hope that an increased dose would help. Unfortunately it hasn't.
I'm due a blood test in April, so will do a new post then asking for advice. Hopefully I will get a T3 result as well - the Dr always requests it but usually the lab refuse. Last test was the first time they actually did it!
Yes absolutely. I called my surgery this mornign and can't get an appointment with GP until the 27th March as I'm trying to see the same GP all the time. Therefore I'm just going to increase my levo dose myself in the meantime. I've got lots of spare boxes of 100mcg tablets at home and I'm taking 150mcg one day and 100mcg the next.
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