TSH Level - Lower Dosage: Hi all, I had a near... - Thyroid UK

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TSH Level - Lower Dosage

Kajcho profile image
15 Replies

Hi all,

I had a near-full thyroidectomy in December 2014 and have been taking Levo since. I initially started on 150mcg but the doctor increased it in 2016 to 175mcg.

I had a blood test done a week ago and the doctor said that my TSH was reading 0.9 and that he is going to lower the dosage to 150mcg.

Is this a good thing?

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Kajcho
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15 Replies
SlowDragon profile image
SlowDragonAdministrator

Just testing TSH is completely inadequate

How do you feel?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

Ask GP to test all four vitamins

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose 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)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or all vitamins

thyroiduk.org.uk/tuk/testin...

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

Marz profile image
Marz

You really do need to know how the T4 you are taking converts into the ACTIVE hormone T3 which is needed in every cell of your body ... I read that you are a runner - so using up lots of T3. Lowering your T4 will lower your T3 - not a good idea.

How do you feel ?

It depends how you feel. Do you feel better on 175mcg? The aim of thyroid treatment is to remove all the symptoms and restore health not to dose according to blood tests. How are you currently, what is the history of your symptoms?

Kajcho profile image
Kajcho in reply to

I feel fine on 175mcg. My symptoms pre op were atrial fibrillation, hair loss, anxiety as I had an overactive gland. That all went once I had the gland removed. I don't know what the symptoms of underactive thyroid look like because I've always taken levo since having the op. So I'm not really sure.

in reply to Kajcho

symptoms of underactive are multiple but include constipation, tiredness, weight gain, dry hair and skin, infertility and menstrual problems, fluid retention. poor memory, depression, anxiety, slow pulse and feeling cold. It sounds like you have been doing fine so far, look out for symptoms and get back to us if they imerge after doctor reduces dose. You might find going back to Doctor alike to banging head against wall.

"the doctor said that my TSH was reading 0.9 and that he is going to lower the dosage to 150mcg."

Surely 0.9 isn't low! What was the reference range? The range with my tests are 0.27-4.20 mU/L . If hypo the TSH should normally be below 1 to feel well

LAHs profile image
LAHs in reply to

Yes, agree. My TSH has been .002 for about 10 years (since my TT) and I am still here with no complaints. And more importantly no osteoporosis nor heart disease.

in reply to LAHs

My thyroxine was reduced (thankfully not a lot) because of a TSH of 0.01!!! :-(

Result, not as good as when supposedly "Over-medicated". Hope the next test will show it too high, then maybe they will realise that TSH is not a reliable guide to health - let alone the be all and end all of thyroid testing!!!

vocalEK profile image
vocalEK in reply to

My TSH varied from 0.626 to 1.79 (range 0.3 to 4.2 uIU/mL) on 175 mcg of levothyroxine. My free T4 was in the top quarter of the reference range, but free T3 was between 1.9 and 2.3 in a range of 2.57-4.43 pg/mL. My doctor added 25 mcg of liothyronine (T3) in December. I started taking 1/4 of a tab at first, and boosted it every 2 weeks by 1/4 tab. Most recent test was TSH 0.108, FT4 1.6 (range 0.60 - 1.70 ng/mL) and FT3 was 3.0. Doc said to continue on the same meds and retest in 6 weeks. So from where I sit, unless your lab's range is a lot higher, your TSH is just fine. I'm in the U.S., but I seem to remember reading that the NICE guidelines advised to aim for a TSH of 1 or less.

in reply to vocalEK

The problem is they won't test for T3, let alone prescribe it, if they can help :-(

I decided to pay for a private test which includes T3, so will get that done at the same time as the NHS test (TSH only!) next week. In the same hospital!!! I suspect my T4/T3 conversion is poor as the T4 was almost at the top of the range and I still didn't feel right.

Can't complain however, many on here are far worse off and I can still function fairly normally.

NickP1 profile image
NickP1

Without T3 and T4 blood results., TSH will tell very little.

There is a US Osteopathic Physician called Westin Childs who runs an excellent thyroid blog (restartmed.com). He will use any kind of hormone the patient needs (T4 only, T4 + NDT, T4 + T3, NDT + T3, T3 only) because we are all different. I find his advice excellent and have learned so much from his blog. Anyway, he says that he has never seen a truly healthy euthyroid person with a TSH above 1, and that an optimal TSH could be closer to 0.5...OK, as I said, everyone is different, but it seems many people on thyroid hormone replacement need a TSH on the low side to rid themselves of all symptoms and feel truly well.

If you feel well on 175 mcg of T4 and have no symptoms of being under medicated (hair loss, weight gain, low energy levels, dry skin etc), chances are you are an optimal converter, meaning you convert enough T4 to T3. Many aren't good converters, and those are the people who need additional T3. But if you are, congratulations, as it's often easier to take T4 only - most doctors prefer it and it's cheap and readily available.

I recently read in the blog mentioned above that people who are good enough converters are the ones who cannot take any kind of T3, but do best on T4 only drugs. There are people like that as well, which is easy to forget sometimes when you read about all the thyroid patients needing T3 in addition to T4 or even T3 only...if you are a good enough converter, but need 175 mcg to feel truly well and rid yourself of all hypo symptoms, then you should not accept lowering your dose simply because your doctor is worried about your TSH (most likely in range as someone pointed out).

But, as others have pointed out, you need a full thyroid panel, including free T4 and T3 levels. The TSH by itself is not enough as it's not even a thyroid hormone but a pituitary hormone.

SlowDragon profile image
SlowDragonAdministrator

Suggest you say to GP you would like full testing of FT4 and FT3 plus vitamins before considering any dose reduction

As others have said TSH of 0.9 is not low for someone on Levothyroxine

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states 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)."

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

pennyannie profile image
pennyannie

Hello Kajcho

Were you diagnosed with Grave Disease, if so we have a TSI and or TRab antibody that take over the control of the TSH production, and continually stimulating the TSH, so you may appear to be overmedicated when in fact you are not.

The TSH blood test means diddly squat and you need to have blood tests for T3 and T4 and both these vital hormones need to be balanced, and in the upper quadrants of the relevant ranges.

I'm glad you are well on 175 mcg Levothyroxine, let's hope that continues.

Just as a point of reference a fully functioning thyroid gland would be supporting you daily, with approximately 100 T4 and 10 T3.

Personally speaking I think it is only sensible that after a medical intervention of thyroid removal or ablation, both these vital hormones should be on one's prescription.

Some people do well on T4 alone, some people for some reason stop converting the T4 into T3, and some people need both these vital hormones monitored and dosed accordingly.

Replacing what is known that you have lost, makes sense to me.

I'm with Graves, and had RAI treatment in 2005. I have been on Levothyroxine and been restricted in my T4 dosing to only 100 or 125 mcg and been very ill.

I now self medicate with Natural Desiccated Thyroid and am getting better.

jgelliss profile image
jgelliss

From my own experiences having had TT I learned through my thyroid journey that knowing your FT3 FT4 TSH values are very important . Get a copy of each of your lab results and write on them the dose you where on at the time for comparison too . It will help you to familiarize yourself with your thyroid values and symptoms . Journal your symptoms they are very telling they are cellular results . BW is a snap shot of the moment your BW was done . No one should be dosed by TSH only . TSH is a pituitary value . If TSH is high it's a *hypo* indication . The most important is your *symptoms* and FT3 FT4 values .

Being that you work out a lot and a runner having enough T4 for conversions to T3 is very important .

Nutrients are very important Vitamin "D"/K2 , B-Complex , B12/folate , Iron if you test low , vitamin "C" , *Magnesium* , Selenium (if you can tolerate), *Celtic Sea Salt* for Electrolytes /Adrenals .

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