What do I ask the doctor for?: Hello everyone, I... - Thyroid UK

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What do I ask the doctor for?

Chamonixxx
Chamonixxx

Hello everyone,

I have been following this blog for a few weeks and have learned a lot, but this is my first post. I have been prescribed Levothyroxine for around 8 years now, currently on 75mcg and 100mcg alternate days. For several years now I have had difficulties sleeping and staying asleep which has been getting worse. I also have a pounding heartbeat which is a bit worrying. This seems to have got worse since I started taking the new formulation of Lego earlier this year,combined with restless leg syndrome in bed. The concern about this new formulation and now Lego in general is what started me on my research.

I have annual blood tests for thyroid function and other this, though I have no current health issues that I am aware of. The last of these tests was February this year. I just called the surgery and was told that no thyroid test was done then! Though a cholesterol test was done which came up high at 6.7. On phoning my GP for the results afterwards she recommended I start statins for the cholesterol which I refused saying I would prefer to try to get it down by diet and lifestyle measures first. When I asked about my thyroid function test result she said it was fine, which was obviously a lie as no test was recorded. I am now angry. The last thyroid results recorded were in June 2017 which were TSH 0.46 and T4 20.3.

I have read that blood pressure and cholesterol levels can be affected by incorrect levels of T4, levothyroxine, so could this be connected?

I am currently in France where I live half of the year and have an appointment to see a GP here next week. What should I ask him? Obviously a new blood test, but for full thyroid or just standard TSH and T4? Maybe then a change in meds.?

Thoughts and advice gratefully received as I feeling a bit lost and unsure what to do, not to mention let down by my GP in UK.

Sorry for the long post. Thank you.

9 Replies
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SlowDragon
SlowDragonAdministrator

When you say brand of Levo changed...did it change to Teva brand? If so many many patients do not get on with Teva

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Essential to test FT3 and vitamin levels plus both antibodies

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

High cholesterol is often sign of being hypothyroid

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

Yes the levothyroxine changed to Teva. Thanks, I will ask here in France for full test, not sure what they normally do and this is a new GP.

SlowDragon
SlowDragonAdministrator
in reply to Chamonixxx

Then suggest you put in a yellow card for Teva and request new prescription from GP

You will see many, many patients do very badly on Teva

healthunlocked.com/search/t...

ALWAYS get same brand of Levothyroxine. Different brands do not give same effective dose. They are not bio equivalent

academic.oup.com/jcem/artic...

Physicians should:

1) alert patients that preparations may be switched at the pharmacy;

2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and

3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

In UK most of us forced to get private testing for full Thyroid and vitamin tests

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

As Greygoose says...definitely avoid French Levothyroxine at moment

sciencemag.org/news/2017/09...

Thank You for that. Very useful.

In France they are becoming less and less inclined to test the FT3, but it's absolutely essential that it is tested. It's the most important number. But very few doctors, in any country, understand T3. I've always managed to get it tested by insisting on it. One doctor actually said to me, but I don't understand T3. I said, never mind, I understand it, you just order it. :) Only once have I failed to get my FT3 tested by the doctor, so I asked at the lab for them to do it and I paid for it.

There are lots of problems with the new formulation of levo in France, too. And there's no choice, there's only one brand. So, not a good idea to take that.

Thank You, I am now armed with enough information

You're welcome. :)

shaws
shawsAdministrator

If you've been diagnosed 8 years ago it is time you got a Full Thyroid Function Test. This consists of TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Blood tests have always to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards. This keeps the TSH at is highest and may prevent doctor reducing our dose.

I see @SlowDragon has given usual helpful response.

Chamonixxx
Chamonixxx
in reply to shaws

Thank You.

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