1)I spoke with an NHS Endo yesterday and mentioned lowering my T4 and adding T3. He said he couldn't ever give me T3 cos it was 'blacklisted'. He said if I lowered my T4 it could take several months for my body to adapt (he thought I was taking too much.) I told him how ill I feel if I drop the dose slightly. It's terrible that I am expected to feel ill for months, with no extra T3. What he means of course is I will feel ill for months but eventually my mind will accept that feeling ill is the norm!!! Any thoughts anyone.
2) For many years my TSH was 0.01 and my T4 was high but j ust within range. A while back a different laboratory was used and my TSH became 0.005 and my T4 rose several points above range. I still felt exactly the same. Can a change of lab make this difference and give the impression I'm overdosed with Tr4????
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fiftyone
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Essential to regularly retest vitamin D, folate, ferritin and B12
Obviously essential to test TSH, Ft4 and Ft3 together
Which beta blocker are you taking? Is it propranolol?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies...or test privately
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)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Well, i tried the lower dose of Levo approach for 4 months , and that was not long enough for my body to 'adapt'. It told me it didn't like it within the first week and it kept telling me it didn't like it, only louder, for the next 15.I'm in an area that has started using the same lab ranges as yours , and there are two possibilities ;
1) my Ft4 has genuinely gone up significantly on the same dose, without affecting TSH so much. (despite many years previously of fT4 between 60%-120% of range[8-18] ...but most results on new [7.9-14] range now routinely around 200%)
or,
2) the new lower and narrower range exaggerates the look of previously 'slightly over range' results, and now presemts them as through the roof.
Sorry to hear you got seen by a naff endo....'blacklisted' my a*se, doesn't want to get told off for prescribing it more like.
edit. have you looked up the 'openprescribing' website ? you can find out surgery by surgery in your CCG how manyT3 prescriptions there have been month by month.
I looked up and found current prescriptions from gp's practices in Kendal , Grange over Sands, Windermere, Ulverston, Morecambe, Barrow in Furness.
He said he couldn't ever give me T3 cos it was 'blacklisted'.
What he really meant is that it's very expensive and nobody wants to pay for it.
T3 appears in the British National Formulary (BNF) - and if it was dangerous (which is what the word "blacklisted" is probably meant to imply to patients) it would not appear in the BNF.
you can see that data has been recorded on adverse effects since 1967 (although not very consistently I must admit - but that is true for almost all drugs).
In 53 years there have been zero deaths attributed to liothyronine.
I should just mention that the Yellow Card system records 19 deaths attributed to Levothyroxine in 53 years. So Levo isn't dangerous either.
You could look up adverse effects of other commonly used drugs e.g. blood pressure drugs, blood thinners, diuretics, statins and compare the deaths recorded for those to those recorded for thyroid hormones, just to get some context.
Another possibility is that the patients were left untreated for a few decades, ended up with heart damage because of their low thyroid hormone levels, and died because of long-delayed treatment.
The problem with the above link is that it isn't clear whether people die because of low T3 or they could have low T3 because they are dying of something else. Which comes first, the chicken or the egg?
I believe that there has been evidence just this year that the above question may have been answered and it has been discovered that low T3 increases death rates in cases of Covid-19. But whether I dreamed that I don't know. helvella might know more about the issue.
There have been published papers and it appears that, for example, the lung tissue of at least some Covid-19 patients can be incredibly low. Which seems to suggest that low T3 is itself an important factor and not just an observation.
my GP told me to reduce Levo because they were worried about my heart .(from down the phone!.. and i might add i have Zero history of any past or present heart issues)
At a later appointment he told me that " the dose should be 100mcg... you'll die " (still based on no heart problems , and still no sign of a stethocsope )
I've been told I'll get osteporosis. Haven't broken a bone in my body yet"! I daresay everyone is different, but what annoys me most is that these experts don't seem to look on their patients as individuals, with personal histories
yes. I've sat in an office with a GP where he's doled out upsetting thyroid advice staring at his computer screen for most of the consultation. I walked out!
Lovely example of bias versus cause and effect! How does he know that people die from taking T4 at this level? People on T4 or not die from all kinds of reasons and one simply can't link T4 cause to a death effect simply because one is on T4 and died..
I wonder how many patients give up altogether trying to improve their health and who may take their own life. We've read that before, of one person who did so.
Why have 'they' removed NDT altogether, then T3 so patients have no options but forced to source their own and some people not confident enough to do so.
He said he couldn't ever give me T3 cos it was 'blacklisted'.
I was under the impression that the term was deprecated for the at least potentially racist undertones.
I appreciate that doesn't help you, fiftyone , but saying something is on some list - whatever the colour - doesn't provide any explanation whatsoever. Do you know what it means? To make any sense, you need the details of why it on the list and what the terms and conditions of the list are. For example, that list status could apply only in your area. Or have a get-out clause something like "unless patient does not respond to levothyroxine".
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Starting T3 - what to expect
Does my endos comments make sense?
Endo had finally had finally decided to try me on low dose t4
Rundown of TSH, T3, T4
