New to Hyperactive Thyroid Issues: I have a few... - Thyroid UK

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New to Hyperactive Thyroid Issues

Lilyrosemarie profile image
24 Replies

I have a few results from the endocrinologist but do not understand what they mean.

I am not asking for any 'medical' advice but please can anyone explain how 'hyper' these levels are:

FREE T3 4.60

FREE T4 14.20

THYROID STIMULATING HORMONE 0.08

I have been prescribed 5mg Carbimazole, what would be the best time of the day to take this?

Thanks in advance

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Lilyrosemarie profile image
Lilyrosemarie
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24 Replies
SeasideSusie profile image
SeasideSusieRemembering

Lilyrosemarie

To be able to interpret your results we need to see the reference ranges that come with them, can you post them please.

Going by most reference ranges we see here that doesn't look like over active thyroid, so before we can make any comment we must know what the reference ranges are.

Lilyrosemarie profile image
Lilyrosemarie in reply toSeasideSusie

Thanks for responding so quickly

FREE T3 4.60 pmol/L 2.63 - 5.7

FREE T4 14.60 " L 9.01 - 19.05

TSH 0.08 mIU/L 0.35 - 4.94

SeasideSusie profile image
SeasideSusieRemembering in reply toLilyrosemarie

Lilyrosemarie

OK, so we have

FREE T3 4.60 pmol/L 2.63 - 5.7 - 64.17% through range

FREE T4 14.60 " L 9.01 - 19.05 = 55.68% through range

TSH 0.08 mIU/L 0.35 - 4.94 - below range

Am I right in thinking these are the results that your endo used to diagnose hyperthyroidism and prescribed you on Carbimazole?

If so there is no evidence of hyperthyroidism. If you had an overactive thyroid or Graves disease (autoimmune thyroid disease causing hyperthyroidism) then your FT4 and FT3 would be way, way over range.

It looks as though your endo is just looking at your TSH alone and ignoring the FT4 and FT3 (which are the actual thyroid hormones).

Do you you have any other thyroid test results before these?

Lilyrosemarie profile image
Lilyrosemarie in reply toSeasideSusie

Hi, yes they are the results that my endo used to diagnose over-active thyroid.

I've looked through all correspondence and the only other TSH results are from 2019, which are

TSH 0.09

FREE T4 14.4

HbA1c 34 mmol/mol

Thanks for your help

SeasideSusie profile image
SeasideSusieRemembering in reply toLilyrosemarie

Lilyrosemarie

So it looks like you've had a below range TSH with in range FT4 before, in fact the results are almost identical.

The TSH is a signal from the pituitary to the thyroid, the pituitary checks to see if the thyroid is producing enough thyroid hormone, if there's not enough (FT4 will be low) the TSH will be high signalling the thyroid to produce more and if there's too much (FT4 will be high) the TSH will be low signalling the thyroid to produce less.

Your results are conflicting in that with such a low TSH you really should have a much higher FT4. This leads to the question is there a breakdown of communication between your pituitary and your thyroid (which can happen).

Your endo should be looking at your thyroid hormone levels - FT4 and FT3 - and realise that they should be much, much higher if you did actually have hyperthyroidism, and not just look at TSH alone.

Fruitandnutcase profile image
Fruitandnutcase in reply toSeasideSusie

Agreed SS, when I was first diagnosed with Graves my TSH was 0.03 which was below the reference range - consultant said it would have been well below.

My Free T4. - 29. 6. (10.0 - 19.8)

My antibodies were high.

I never had my T3 tested until I discovered TUK.

I felt really dreadful though I was really shaky, my heart pounded all the time, i couldn’t sleep because of the pounding heart and sweats, I lost a massive amount of weight and I was utterly exhausted. I used to go to bed when my husband got home from work. I felt so ill it wasn’t true.

My consultant (s) never ever frightened me, they were really positive although they did start saying that should I not go into or stay in remission I would be given radioactive iodine and I kept saying I wasn’t going to have it. I was treated by ‘block and replace’ which worked very well for me but it depends on the hospital. I started on 20mcg and after a month nothing seemed to change so that was doubled to 40mcg - I took it all at once in the morning. One of the doctors I saw asked if I split my dose and I said I took it all at once in the morning and he was fine with that.

No consultant should be scaring the Lilyrosemarie especially as her ‘frees’ are within range.

I also have osteoporosis and gave up bisphosphonates after taking them for four very miserable months.

pennyannie profile image
pennyannie

Hello Lilyrosemarie and welcome to the forum :

Do you have the ranges relating to these blood test results please ?

Going by the UK most usual ranges used these results do not look to be hyper :

Are you already on a form of thyroid hormone replacement - if so what were you diagnosed with ?

Lilyrosemarie profile image
Lilyrosemarie in reply topennyannie

Thanks for responding, I have put the ranges up now.

No, I haven't been on thyroid meds before!

pennyannie profile image
pennyannie in reply toLilyrosemarie

Ok - so your T3 and T4 are in range and with just your TSH below the range :

We generally see a T3 reading tracking % wise behind T4 reading -

but I'm very surprised you have been prescribed an Anti Thyroid drug such as Carbimazole -

Do you also have an antibody reading there - probably looking like TPO or TgAB or a TR ab or TSI ?

What symptoms are you dealing with ?

Lilyrosemarie profile image
Lilyrosemarie in reply topennyannie

Thanks Pennyannie,

No, those are the only figures on the letter but I am due another blood test next week.

The endocrinologist made me it sound like those levels were really bad.

I have osteoporosis and she said they over-active thyroid would make that worse.

Apart from that, just tired most of the time.

pennyannie profile image
pennyannie in reply toLilyrosemarie

I think you are owed a further explanation as these results do not ' look like ' hyperthyroid and taking the AT drug will suppress these reading further and likely make you more tired.

The antibody blood test is paramount as we need to know which antibodies are circulating in your blood - which is the medical evidence and proof of diagnosis and on which a prescription is then issued.

Why were you seeing an endocrinologist anyway - because of the tiredness ?

Can you contact this endo again and just ask for clarification since both T3 and T4 are in the ranges ?

Lilyrosemarie profile image
Lilyrosemarie in reply topennyannie

I am 'seeing' the endocrinologist because of osteoporosis but I only get phone consultations.

It's all very confusing and I appreciate your help as I hadn't got a clue. I will definitely ask.

pennyannie profile image
pennyannie in reply toLilyrosemarie

Well - the antibody blood test should have been run from this first blood test = maybe it has been and they have just omitted to tell you ?

Are you able to have a face to face and can talk with your primary care doctor - maybe h has been advised of the antibody blood test ?

If you go into Thyroid UK - the charity who supports this forum - thyroiduk.org - there is a page detailing symptoms of hyper - and hypo - thyroidism - and it might just help you better focus and be less confused if you check out which set of symptoms you feel you ' sit in .

It can also be a bit confusing as some symptoms sit in both camps - but overall it should leave you feeling more confident to ask a few more questions.

Lilyrosemarie profile image
Lilyrosemarie in reply topennyannie

Yes, I've definitely got some in each camp but I would say more hypo

kiefer profile image
kiefer in reply toLilyrosemarie

What tests were performed that showed you have osteoporosis? Did they do the DXA?

Lilyrosemarie profile image
Lilyrosemarie in reply tokiefer

Yes, I've had a DEXA and a REMS scan

Buddy195 profile image
Buddy195Administrator

Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

I was initially diagnosed as hyper with Graves but following advice from this forum I ensured correct antibody tests were taken and I found out that I was actually hypo with Hashimotos.

Lilyrosemarie profile image
Lilyrosemarie in reply toBuddy195

Oh that's interesting

Thanks for replying

PurpleNails profile image
PurpleNailsAdministrator

Your doctor is scaring you unnecessarily by focusing on TSH.

If your thyroid levels FT4 & FT3 were significantly above range for a prolonged time then that could contribute to osteoporosis. Yours are not.

Having a low TSH can occur for all sorts or reasons. & they should be investigating why and testing antibodies/ scanning thyroid if necessary before concluding low TSH = hyperthyroid & trying to force the TSH to rise.

5mg carbimazole is very low starting dose & viewed as lowest dose as it’s the lowest manufacturered but carbimazole works by temporary preventing the way iodine can be used to make new hormones. In other words your doctor attempting to lower your “normal” mid range range to make the Thyroid stimulating hormone from the pituitary to increase and signal thyroid to work harder?

Ask for TPO & TG antibodies be added to your next test. Your GP can arrange TPO antibodies possibly TG antibodies. These test for autoimmune issues with thyroid.

What your specialist needs to test is Trab or TSI antibodies these relate to Graves continuous hyper. GP say they can request this type of test.

Your results might show that your levels have dropped from being previously hyper….the TSH takes longer to respond. This can occur with autoimmune thyroiditis (Hashimoto’s) when levels can fluctuate early on but ultimately remain low.

You may find your TSH naturally rises. I’d question why doctors are suggesting antithyroid based on a single test & without establishing what the cause of your “hyper” is.

Lilyrosemarie profile image
Lilyrosemarie in reply toPurpleNails

They are definitely scaring me. I'm so glad I asked here.

Thankyou

SlowDragon profile image
SlowDragonAdministrator

Osteoporosis can also be due to LOW thyroid hormones

Ft4 and Ft3 are not high at all …..if anything they’re on low side

Looking more like central hypothyroidism

Have you had vitamin D, magnesium, B12, folate and ferritin levels tested

Next step get FULL thyroid and vitamin testing done including TPO and TG antibodies for autoimmune hypothyroid disease

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

SlowDragon profile image
SlowDragonAdministrator

When were vitamin levels last tested

what are most recent results

What vitamin supplements are you currently taking

Osteoporosis and thyroid

thyroidpatients.ca/2018/07/...

Lilyrosemarie profile image
Lilyrosemarie in reply toSlowDragon

Thank you for your helpful reply SlowDragon,

the only results showing Vit D was from August 22 when Vit D was :

25 Hydroxy Vitamin D (total) 97.5 nmol (50-150)

I take Vit D tablets 800uand Vit K2 spray and that's all

SlowDragon profile image
SlowDragonAdministrator in reply toLilyrosemarie

Request GP/endo test

TPO and TG antibodies for autoimmune hypothyroid disease (hashimoto’s)

And TSI or Trab antibodies for autoimmune hyperthyroid disease (Graves disease)

Plus folate and B12 and ferritin

Or test via Medichecks or BH

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