I did a blood test where my GP tested my TSH only (even after telling him that he won't get much information from that) and found it to be low at 0.04. I am taking 100mg of Levo and I have been feeling great for the first time in my life for the last year or so. It feels like I am back to my old self again. Anyway, he wants me to half the dose. He didn't even test for T4 or T3.
Are there any medical papers that state that taking Levo suppresses TSH that I can show him, and that he needs to check my T4 and T4 levels too?
Thank you.
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I don't have any articles that say Levo suppresses TSH, but there is the article in Pulse magazine by Dr Toft (leading endocrinologist and past president of the British Thyroid Assocation) in which he states:
"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.
The ThyroidUK office is closed until 3rd January though.
You cannot reduce from 100mcg Levo to 50mcg, dose changes should be done in 25mcg increments. However, personally I would refuse any dose reduction until FT4 and FT3 are tested and then only reduce if FT3 is over range.
Half the dose? Is he insane? That’s cracking a bit with a sledgehammer!
I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps.
Are you hashimotos? If so, this is what my endo told me.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo. What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, so they just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low. He also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need more of the synthetic T4 stuff than we would of our own - even more than the normal range for some people to make/convert into adequate active energy and therefore to feel well. The combination of hashimotos and synthetic T4 creates a perfect storm. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
Nut! Not bit! Bloody autocorrect. But why are doctors so cack-handed? If they are insistent why don’t they try asking you to alternate between your normal dose and 25mcg less first? Or have your normal dose 5 out of 7 days and a lower dose the other two? Why do they always go for a massive increment? Is the notion of fine tuning lost on them? Why do they want us to be ill? Grrrr!
Hi MissGrace, like Kitten44, I too would love to know the name of your endo because the one I visited was not great. Please send me a private message when you've got a second. Thanks!
Absolutely essential to test vitamin D, folate, ferritin and B12
When these are too low (extremely common on Levothyroxine) then TSH drops even when FT3 is too low
Refuse to reduce dose until had FULL Thyroid and vitamin testing
Only reduce if FT3 is over range (extremely unlikely)
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 Thyroid antibodies are raised
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
is this how do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies Or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Thank you. I certainly refused until the doctor knows what he is talking about. I am just so frustrated at having to educate someone who arrogantly tells you about he learned at school every time I highlight things to him.
I hope you mean "raw food" as the whole animal right? If you are just feeding a pet raw meat they are not getting all of the nutrients they need. carnivores need to eat the entire animal including bones and organs to get the full nutritional value out of the raw food.
Thank you for the replies. I ended up on a phone call in which I lectured the doctor to not use blood test results as the end all be all for his decision making and that my symptoms, or lack thereof also matter.
He said begrudgingly that I can stay on 100mg until I am hyper. *rolls eyes*
Anyway, my results were as follows:
TSH 0.135 from yesterday. So he wasn't being entirely honest when he said on the phone that it was 0.04.
From my previous tests done on 25 Oct 2018,
TSH: 0.071 (0.27 - 4.2)
FT3: 4.5 (3.1 - 6.8)
FT4: 19.2 (12 - 24.1)
So I will be staying on 100mcg of Levothyroxine until further notice. I would have taken some T3 too in order to push it towards 6.0 but I am breastfeeding and I don't know how that affects the baby.
My ferritin is 139 (13- 150) and I am supplementing folate via my prenatal vitamins that I take while breastfeeding. I am also taking vitamin D, etc. My haemoglobin was low due to losing blood while giving birth but that has since become better at 13.8 (11.5 - 18.1).
With all that is said, I literally can't remember the last time I felt this strong, and I didn't have to take t3. My weight is still an issue, but the breastfeeding hormones are likely the culprit there, not the thyroid.
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