Test Results: Diagnosed with hypo and given Levo... - Thyroid UK

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Test Results

Peggy-Priceright profile image

Diagnosed with hypo and given Levo in 2016 - (was euthyroid at 125mg for past year). I was recently sent for blood tests on an unrelated matter. Given that the GP didn't say that my thyroid would also be checked I took my Levo early morning prior to the 11.50am appointment (which I would never normally do if thyroid is being tested). The GP telephoned me 2 weeks later telling me I have inflammation (no suggestion of what I should do about that), high cholesterol so I will need statins and that he has reduced my Levo by 25mg to 100mg due to the results of the thyroid function test. Please could you help advise me how to respond as I really don't feel a reduction in Levo will help and I don't want to go on statins.

Serum free T4 Level - 19.9 pmol/L - range (7.0 - 17.0)

Serum TSH level - 0.05 mu/L - range (0.20 - 4.50)

Serum total choleserol level - 8.5 mmol/L - range (2.5 - 5.0)

Non HDL Cholesterol/HDL ration - 6.8 mmol/L - range (1.5 - 4.0)

Any advice gratefully received.

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Peggy-Priceright
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19 Replies
SlowDragon profile image
SlowDragonAdministrator

Contact GP and refuse to reduce levothyroxine until you have had FULL Thyroid and vitamin testing including Ft3

High cholesterol is linked to LOW FT3

Low vitamin levels also linked to LOW ft3

Just testing TSH and Ft4 is completely inadequate

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 if not been tested

Insist on Ft3 being tested

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 GP won’t do all tests..,test privately

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 antibodies and vitamins

medichecks.com/products/adv...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

Peggy-Priceright profile image
Peggy-Priceright in reply toSlowDragon

Wow SlowDragon thank you so much for all the helpful advice and links to further information/services! That’s so kind of you and I really do appreciate it. I’ll follow up on this and feedback to the forum in the new year.

SeasideSusie profile image
SeasideSusieRemembering

Peggy-Priceright

I've had something similar recently, story is too long to give full details but basically this.

My TSH has been suppressed for many, many years and never comes into range. GPs don't like this and won't accept that it's the FT4 and FT3 that are important, not TSH.

However, the Advanced Nurse Practioner (ANP) at my surgery is more educated on thyroid matters and is happy to accept such a low TSH as long as FT4 and FT3 are within range.

I have had surprise thyroid tests sprung on me a few times which always come back with a high FT4 (because the Levo has recently been taken so the FT4 level is at the top of it's spike post ingestion).

To avoid this situation the ANP and Practice Manager and I have agreed that because ordering certain blood tests automatically triggers a thyroid test as well at my surgery, I should now assume that I may have a thyroid test regardless of what test I am booked in for so I am allowed to have an early morning test and I don't take my thyroid medication before any blood test. That solves the problem of over range FT4.

In your position I would refuse the statins and explain to the GP that because you had taken your Levo before the test then the FT4 result is over range because the test would have been done when the Levo was at it's peak in the blood and that it's advised by some endos that Levo should be taken after the test not before. SlowDragon , do you have a link to something official about that?

So ask GP to retest without you taking your Levo beforehand and include FT3 as well as FT4 as it's the FT3 result that tells us if we are overmedicated.

SlowDragon profile image
SlowDragonAdministrator in reply toSeasideSusie

NHS England Liothyronine guidelines July 2019

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

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

Peggy-Priceright profile image
Peggy-Priceright in reply toSlowDragon

Thank you 😊

Peggy-Priceright profile image
Peggy-Priceright in reply toSeasideSusie

Hey SeasideSusie, thank you so much for sharing your experience of blood tests and offering advice on how I should respond to my GP. Much appreciated.

SlowDragon profile image
SlowDragonAdministrator

As your sister is/was on liothyronine (T3) you may also be poor converter of levothyroxine into Ft3....very common with Hashimoto’s

All four vitamins need to be OPTIMAL for good conversion

Strictly gluten free diet often helps or is essential too

Peggy-Priceright profile image
Peggy-Priceright in reply toSlowDragon

She had her Liothyronine prescription reinstated by an Endo after her GP stopped it due to a lack of evidence it works!! So she’s happy. You may be right about me also being a poor converter so perhaps I need to insist on a referral to an Endo. In the meantime I’ll ask my GP to test my vitamin levels. I went gluten free a few years ago following advice from a nutritionist about several gut issues I was suffering from. Thank you again SlowDragon.

SlowDragon profile image
SlowDragonAdministrator in reply toPeggy-Priceright

As someone who has gluten intolerance and autoimmune thyroid disease you are highly likely to be poor converter of levothyroxine to Ft3

And as gluten intolerant and on gluten free diet extremely likely to have low vitamin levels

First step is to get FULL Thyroid and vitamin testing

Work on improving low vitamin levels as we need all our 🦆 🦆 🦆 in a row before considering T3

But likely to need addition of small doses of T3 prescribed alongside levothyroxine

Getting Dio2 gene test can help persuade NHS to prescribe - assuming you test positive

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

Are you able to see your sister’s endocrinologist?

Peggy-Priceright profile image
Peggy-Priceright in reply toSlowDragon

Hi SlowDragon, many thanks for all your really helpful tips. Unfortunately, my sister lives over 2 hours drive away so I'm not in a position to gain access to her Endo.

SlowDragon profile image
SlowDragonAdministrator in reply toPeggy-Priceright

Not possible as private consultation on zoom?

Peggy-Priceright profile image
Peggy-Priceright in reply toSlowDragon

I didn't even think of that - thank you SlowDragon I will make enquiries.

thegemprincess profile image
thegemprincess

I agree with many of the opinions listed above, to recount- check vitamins and may I add start a diet to reduce the cholestrol problem. This will avoid need for statins. Usually in USA they approach cholestrol problem with diet first and make you retake blood test 3 mos later. Most people here feel statins are last resort. Hope you regain health and leap over this speedbump following the good advice of others to get proper blood work.

Peggy-Priceright profile image
Peggy-Priceright in reply tothegemprincess

Thank you thegemprincess, I mentioned changing my diet to my GP and he said that diet alone won’t bring down my cholesterol levels! However, I agree with the view held in the US and will be addressing my diet in the first instance. I appreciate your input and following the sound advice from everyone, I feel motivated to take control of my own health going forward.

SlowDragon profile image
SlowDragonAdministrator in reply toPeggy-Priceright

Cholesterol is high because you are hypothyroid and highly likely poor converter of Ft4 to Ft3 ...has little to nothing to do with diet and everything to do with low Ft3

Even NHS agrees

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Lovecake profile image
Lovecake

My cholesterol level was only ever recorded up to 6.5 (lucky me)But, it only dropped down below the nhs line (5.3 I think) after I started taking a little T3.

I therefore think the testing of FT3 is important before you decide to take statins as said in a reply above.

Peggy-Priceright profile image
Peggy-Priceright in reply toLovecake

Thank you Lovecake.

thegemprincess profile image
thegemprincess

In USA its recommended to be a 3 phase punch - proper thyroid meds if needed plus diet plus exercise. It worked for my mate. Here was his roadmap to success: He had to phase out pizza, desserts, hot dogs and fatty items. He went on a diet with 4 egg whites and cheese , , dry toast and fruit or breakfast of oatmeal with cinnamon. He had to say goodbye to bagels and muffins. He did eat all whole wheat or rye bread .

Lunch was veggy burgers, falafals w/ salad, tuna in water and diet mayo sandwich, roast beef on rye. no ham or bacon. He had normal dinner but trimmed the fat and 1/2 baked potato but no rice. His cholestrol plummeted. About the exercise....my mate is couch potato. Exercise was 1/2 hr walk every other day. His dinner dessert was yogurt because the MD said it kills a sweet tooth. I bought him vanilla oikos Danannon. He put banana 1/4 and other nuts and fruits. Some days he cheated and ate a fat free icecream bar. I also encouraged him to eat some dried fruit and nuts to keep him regular. We saw the difference in 2 months when he returned for testing

Peggy-Priceright profile image
Peggy-Priceright in reply tothegemprincess

Thanks for offering your friend's case as an example. I've got a lot of work to do to prepare for a lifestyle change I think.

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