Well, as you can see, percentage-wise that reduction of 12.5 a day has made a huge difference to your results! You are now under-medicated.
Why was the dose reduced? Due to the low TSH? They never learn, do they! You were not over-medicated in December, and now you're under-medicated by the TSH is still below-range. Waste of time!
You're also a poor converter, so reducing your levo has left you with very low FT3 - not surprising you're cold and lethargic! If I were you, I'd insist on having my dose increased again - or else ask for some T3 to raise your FT3.
Like many on here the challenge seems to be getting the GP's to understand the problem but they just look at the test results and say they are within range, I have tried to challenge the GP and say that I don't feel particular well, I'm feeling tied & feel the cold but he just says the results say different, I don't understand why they refuse to listen to the patient. I have cattle and sometimes require the vet, these are so different individuals, they examine and then listen to what you have to say and only then make an informed prognoses and the cattle can't talk. Sorry to ask but what's the argument to say that the results don't tell the whole story as I'm 100% certain he's going to want to reduce my meds as my TSH is still too low.
Unfortunately, they just don't learn about thyroid in med school. Nor do they learn how to interpret blood test results (one has to wonder what they do learn!). They think that just being anywhere within the range has to be 'good', and outside the range is 'bad'. But it's not as simple as that. Maybe you would like to send your GP a copy of this article:
The normal range: it is not normal and it is not a range
If you take a person with no thyroid problems (euthyroid) the TSH is around 1, and FT4/3 around mid-range, with the FT3 just slightly lower than the FT4. However, for reasons I can't explain (because I don't know) hypos tend to need their Frees higher in-range than euthyroid. Which means that the TSH is going to be lower.
TSH - Thyroid Stimulating Hormone - is a pituitary hormone, not a thyroid hormone. When the pituitary senses that thyroid hormone levels - T4 and T3 - are too low in the blood, it increases output of TSH to stimulate the thyroid to make more hormone. And that's about all the TSH does. So, if the pituitary decides there is enough thyroid hormone in the blood, it drops/stops production of TSH. Because you don't need it. It doesn't have to be in-range for you to be well. It is just a messenger and doesn't make you feel anything.
Also, something that doctors probably have no idea about, when there is thyroid hormone in the blood, the pituitary gets served first, so to speak. So, although the pituitary is satisfied, other cells in the body can still be deficient in thyroid hormone. And that's why you can still be hypo even with a very low TSH. Once the TSH gets below 1, it is a very poor indicator of thyroid status, it is just an indicator of pituitary status.
Dosing by the TSH is just 100% wrong. But, doctors don't know enough about thyroid to understand that. Nor are they interested enough to find out. It's just so much easier for them to just look at the TSH and say: oh, in-range, everything must be hunky-dory then and the patient's symptoms are all in their head! Or: Oh!!! TSH below-range, must be over-medicated! Reduce dose! Reduce dose! Red alert: reduce dose! They don't even have to think about it, they just have knee-jerk reactions.
So, if he suggests reducing dose, just tell him b***** off! No, be polite. lol But just refuse. No. I will not reduce my dose because I feel it is too low already. In fact, I want an increase!
He should not alter your dose without your consent. It should be a joint, informed decision - and, frankly, you're likely to be better informed than him! He is not there to dictate to you, he is there to advise you. If you do not chose to follow his advice, there is no law that says you have to.
I have ordered some supplements from Thorne which will probably arrive tomorrow
*Magnesium CitraMate, Basic B Complex & Zinc Picolinate 15mg*
I'm thinking should I start taking these or should I get on with a full set of bloods to see where my levels are now
If you're query is regarding testing for these *_________ but, specifically the Magnesium*, along with these core vitamins - Vitamin D, Folate, Ferritin & B12 - needed to ensure optimal thyroid functioning, then I believe the consensus on here is that YES, these should be tested first before starting supplementation. This is so that you have both a baseline/starting point to work from and help to guide any further tweaks, symptoms, etc., you may need from henceforth. (I'll ETA when I can find you a link for testing these, unless someone else comes along and adds a link before I can find one...)
As for testing for Reverse T3 & Total T3
That will be a definite NO: First one is a waste of time (and money!) and also takes a lot longer to come back if memory serves me correctly. Second one is way too soon after the tests you've just had on 5th June and is going to give you no more useful information - whether guiding what you need to do now and/or dealing with your GP as greygoose has suggested.
In relation to the latter point...[I'm thinking] I could tell my GP that if he wants to reduce my meds then I'll only agree but first I want to see the results of these tests
I would personally hold that thought to yourself 🤐, go with what GG has suggestedand also put in a request (preferably in writing so that you create a paper trail for future reference) for all your test results with ranges - both in hard copy form and on-line - and [both of] which you are legally entitled to. In other words, as the saying goes, "Don't give [them] an inch or [they'll] take a mile!" 😀
Other posts with possibly useful replies (just discount anything that doesn't apply), particularly ones from SlowDragon re testing vitamins, etc., and the last two I've included because they're also from male members who've recently started on their thyroid journey like yourself ☺️
Pinned Post with links to Thyroid Test Results Calculators (2), the second of which (thyroid chingkkers) also contains the ability to put in the all important core vitamins and other results as well 😊
Hope they help and, just to add after reading your Bio, why don't you get your twin to join the forum, too, I'm sure many Admin, particularly helvella (also male), and other experienced members jimh111 (off the top of my head) could well be interested in following your journey(s). Whatever, good luck, and here's a final meme👇 to keep in mind next time you think of/talk with your GP?!! 😜
*the first of which (thyroid chingkkers)* not the second...Sorry, from experience (though still not sure if it's my FUBAR IT system?!), couldn't risk editing in the post, as I'd loose the meme!! 🙄
Completely agree with everything PRJ20 say regarding testing rT3 and TT3.
I'm thinking I could tell my GP that if he wants to reduce my meds then I'll only agree but first I want to see the results of these tests.
But he wouldn't have a clue what those tests were! And even if he did, they wouldn't contain any clues about whether or not he should reduce your dose. Absolutely no point in testing them.
No point in testing magnesium, either. It's expensive and the results are unreliable due to the way the body handles magnesium. But the zinc and B vits should be tested first.
And, when you do find out if you need them or not - especially zinc, don't take that unless you need it - don't start them all at once. Leave a gap of about two weeks between starting each one or you won't know what is helping and what is making things worse.
When taking T4 only (levo), patients usually end up with relatively higher T4 / relatively lower T3 / and relatively lower TSH than people with functioning thyroid glands . ( because they have lost some (or all) of the T3 that is produced / converted in the damaged (or absent) thyroid gland.
so .... even though in a person with a properly working thyroid gland , a below range TSH would indicate their thyroid hormone levels were a bit too high for them , it does not always indicate the same thing in someone on levo :
this is backed up by research : lot's of details/ references in this post : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
you can also use this evidence that TSH between 0.04 and 0.4 in patients on levo) has no more risks associated with it than TSH in range does : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
and emphasise that your fT4 and fT3 were well within range on 150mcg , and now on 137.5mcg your fT3 is disproportionately low .
and assuming the following are true:
emphasise that you have no symptoms of overmedication.
emphasise that you felt better before the reduction , that you've given the reduction long enough to settle in (at least 6-8 wks) , but are definitely feeling worse .
~~~~~~~~~~~~~~~~~~~~~~~~~~~
Shame you can't get the vet to treat you . as most vet's would understand the logic of the above much better than a GP can .
I don't really know how to put this without looking like a fool
I double checked my prescription and the change was an increase from 125 >125/150
I remember having a big discussion with my GP and thinking it was about reducing my dosage when it was the fact he didn't want to increase and only agreed to the increase if I did the 125/150 alternate days when I wanted 150
Free T4 (fT4) 14 pmol/L (9.1 - 17.6)
Triiodothyronine 3.8 pmol/L (2.4 - 6.0)
TSH 0.26 mIU/L (0.32-4.9)
I'm taking 125 & 150 Levothyroxine every other day
my test results 11/12/23 - morning
Free T4 (fT4) 15.6 pmol/L (9.1 - 17.6)
Free T3 (fT3) 4.1 pmol/L (2.4 - 6.0)
TSH 0.16 mIU/L (0.32-4.9)
was taking 125 Levothyroxine every day
its looking like he may have been correct or maybe I could reduce a small amount
No worries . we all get lost in the woods occasionally.
Well your results just go to show that thyroid hormone levels don't always do what we expect.
So since the small increase from 125 to 137.5mcg , your TSH has actually risen a little , and your fT4 and fT3 have fallen a little . (you'd expect the opposite , lower TSH / higher fT4 )
But 'bloods results not doing what we expect' is not at all unusual, well not for me anyway. I've had the same issue sometimes with TSH and fT4 doing the opposite of what's expected/logical.
Have you noticed any difference in how you feel on 137.5mcg ? that is more important than the numbers .
and No ... this doesn't mean GP was right not to want to let you try an increase.
he was looking at the low TSH and was worried that if he increased T4 , the TSH would go lower in response ......in reality T4 has inexplicably lowered and in response TSH has gone up a tad , and he would be no more able to explain why the T4 went down / TSh went up than we would.
p.s .. if he's anything like my GP he won't bother thinking about 'why' .. he'll just assume that you misunderstood his instructions and have been taking less than 125mcg by mistake . and will also fail to believe you when you insist you have been taking 137.5mcg as instructed .
presumably it makes 'doctoring' a lot easier if you decide to blame everything you don't understand on 'poor patient compliance'
I'm a little lost on how to progress this now, I don't feel any better if anything slightly worse as I've got dryer skin on my face, eyes are a little itchy and I still have the cold intolerance which implies under dosed yet I've slightly increased my meds
get b12 / ferritin / folate / Vit D tested , see if there is anything that could be improved. here's a link to the private testing companies that we usually suggest . most have discount codes from Thyroid UK charity: thyroiduk.org/testing/priva...
not sure which is one is best for you .. depends if you need full iron panel or just ferritin .... SlowDragon / Jaydee1507 can hopefully advise better than me .
i would not agree to reduce dose at the moment. if GP asks you to, point out that TSH has gone up and T4/T3 are now lower.
would also be a good idea to edit your original post so the correction about previous dose being 125mcg is more obvious to others trying to help.
to edit your post click on
reply/ like /report/ more .. just underneath the post
unfortunately i'm rubbish at vitamins advice , i'll tag Jaydee1507 , or SlowDragon for you .
if you don't get a reply here , try putting a new post up with these results
(it's usually best to write a new post entirely for new results .. because of how busy this forum is replies to previous posts often get missed entirely , or are only noticed by one or to people.... new posts get more attention )
I'm taking 125 & 150 Levothyroxine every other day
How long have you been on this dose
Which brand of Levo are all your tablets
Always same brand?
Ideally testing day after taking 125mcg (rather than day after 150mcg)
B12 low
Folate unfortunately no result
With serum B12 result below 500, (Or with active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until Active B12 over 100
Post discussing how biotin can affect test results
But as B12 is low you will be taking a daily B12 plus a week later start vitamin B complex
serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until Active B12 around 100
Post discussing how biotin can affect test results
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Statins
What might cause a spike in FT3?
Update again again again!
TSH level
Latest blood results
