Fluctuations from very high around TSH to very ... - Thyroid UK

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Fluctuations from very high around TSH to very low TSH

vishnucta profile image
13 Replies

Diagnosed hypothyroidism in August 2020

TSH 450 t3t4 normal - Eltroxin 125mcg

September TSH came to 0.33 - Changed to 100 mcg

October it again came to 0.08- changed to 50mcg.

TSH Reference range 0.4 to 4

What's happening to me? Such drastic fluctuations

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vishnucta profile image
vishnucta
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13 Replies
jrbarnes profile image
jrbarnes

Once I got on medication my TSH was not useful. Your Dr is trying to medicate you according to the TSH and that's not really a good plan of action. It will keep you unwell. What matters more is how you feel. FT4 and FT3 would be a better indicator of what the medication is doing for you. I would tell my Dr that continuously changing my medication every time there's a change in TSH is affecting my well being and that I would prefer to go by how I feel and the free hormones. If you feel good on one dose you may have to get firm with your Dr!

SeasideSusie profile image
SeasideSusieRemembering

Vishnucta

Can you please double check this

TSH 450 t3t4 normal - Eltroxin 125mcg

Was your TSH really 450? Or is that a typo?

Do you always do your test u dee the same conditions every time as we advise here:

* Test no later than 9am

* Nothing to eat or drink except water before the test

TSH is highest early morning and lowers throughout the day, so to compare accurately the test should always be done at the same time.

Eating can lower TSH and coffee affects TSH

Also, if you take Biotin or a B Complex containing Biotin then this should not be left off for 7 days before any blood test because it can give false results if the lab uses biotin in the testing procedure (which most labs do).

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine has very narrow dose range for each individual person

Dose should only ever be changed by 25mcg, often smaller increases or decreases

Just testing TSH is completely inadequate

Reducing dose inappropriately frequently dramatically lowers vitamin levels and low vitamins tend to lower TSH

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

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

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)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

vishnucta profile image
vishnucta in reply to SlowDragon

Thanks for such great explanation. I have put more details in below comments

jimh111 profile image
jimh111

Assuming the TSH was reported as 450 the most likely explanation would be a clerical error or possibly assay interference as antibodies can sometimes cause a false result.

What did your doctor say about this result? Surely they must have been shocked and checked it out with the lab?

Do you have the actual fT3, fT4 results?

What sings and symptoms did you have. I’m not sure you should have been started on levothyroxine, not without double checking the TSH.

vishnucta profile image
vishnucta

Hi All,

Thanks for the reply..I didn't expect this many replies in such short time. Thanks again.

How i figured out I have hypothyroidism?

I was so week, lethargic and even very low libido, tiredness in pelvic region, weak knee joints n pain. I knew something is Very wrong with me and I booked a full body checkup to figure that out. And that's how I found TSH 450.

Right away I met an endocrinologist and started eltroxin 125 mcg.

Still I had my doubts about any clerical error in lab results. Just after 4 day's of medication I did the test again and results are below.

T3. 1.01 Ng/ml (0.6 to 1.81)

T4 6.3 mcg/dl. (4.5 to 10.9)

TSH. 242.971mcIU/mL. (0.4 to 4.2)

Now doctor cut down my tablet to 50mcg and asked me to take few antibody Tests after a month.

Now my values shows I am hyperthyroid

My one concern is why sudden fluctuation from hypo to hyper in just 2 months.??

Angel_of_the_North profile image
Angel_of_the_North in reply to vishnucta

Your results do NOT show that you are hyperthyroid as your FT4 and FT3 are low in range. TSH is largely irrelevant when you are on meds. If anything you needed a slight increase as FT4 was only 28.12% through range and FT3 33.88% when they should be over 50% - pref nearer 75%. You need a doctor with a bit more of a clue.Plus you are still saying that your TSH is still in the hundreds - are you getting the decimal point wrong?

tattybogle profile image
tattybogle in reply to Angel_of_the_North

Current TSH See top of post :) sept 0.33 /oct 0.08 (no FT4/FT3 given)

Angel_of_the_North profile image
Angel_of_the_North in reply to tattybogle

You need to know FT4 and FT3, just TSH is useless

That's what happens when you are dosed according to TSH instead of thyroid hormones. Plus changes in meds should be 25mcg maximum at any one time and you need to wait 6 - 8 weeks after a dose change before retesting.

vishnucta profile image
vishnucta in reply to Angel_of_the_North

I did a test 4 days back .

I had a discussion with doctor and he said he gave to 50mcg because my TSH was very low.

TSH 0.08

Angel_of_the_North profile image
Angel_of_the_North in reply to vishnucta

You need a new doctor, that one will keep chopping and changing your dose unnecessarily, stressing your body and stopping you from feeling well.. It's the thyroid hormones that are important, not the pituitary hormone- and you were tested to soon after a dose change

mistydog profile image
mistydog

Just wanted to add "normal" is for others, not necessarily for you. Never accept "normal", get actual figures. And time of test crucial, as well as not taking caffeine or food

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