Levothyroxine not making me feel better.

[Delphine-18]

Some years ago I was told by my GP that I was borderline hypothyroidism. Because if a history itf Atrial Fibrillation he told me he was reluctant to start me on meds. I never asked what my blood test was at that stage

I always felt cold, exhausted, constipated, aches snd pains and it was suggested I had fibromyalgia. I have had sleep disturbance and my hair lacks the lustre and thickness it use to have.

Approximately 3 years ago, now with a different GP, I again put my symptoms forward. When she tested my thyroid, it came back with a TSH 3.4 and my T4 10. I was recaleed to have my bloods repeated. I was told the results were normal with a TSH 3 and a T4 of 11.5

I felt all my symptoms were that of an underactive thyroid. My GP agreed and decided to try me on a low dose of thyroxine 25mcg to begin with and then up to 50mcg. To be honest I have just felt progressively unwell.

Last year the practice nurse called me to say I should increase my meds up to 75mcg as my TSH was 2.78 I did this and initially had some palpatation but this settled and when I got my bloods checked some months later my TSH had gone down to 0.27 but my T4 was 16 and I felt much better. Told to reduce my meds back to 25mcg. I insisted on staying on 50mcg.

Latest bloods TSH 1.01 and T4 13.4

I feel awful like I am just going in circles. I had a run if Atrial Fibrillation last week. I required iv drugs to get my heart back into normal rhythm. They discovered in A&E my phosphate level is low, 0.59 I was told to increase dairy products which at the best of times I do not tolerate very well.

Id be so grateful for some guidance. I am only 57 and feel terrible. Joint pain and lethargy getting worse.

Thank you very much.

I

[Kazbe]

Hi Delphine-18

I’m so sorry to hear you are feeling so unwell , I am not medically trained my circumstances are very similar I’m on 75mg Levo and have had problems with heart palpitations tried to put me on Beta blockers etc ! I know how you feel just drained and exhausted all the time !

Have you been referred to an Endocrinologist because that would help they might be able to insist you stay on 75mcg Levo because your other blood levels were better then and you felt better .

GP should treat you on how you are feeling not just because your TSH is suppressed they panic and reduce medication that’s not ok when you felt much better !

I would ask for further referral and I’d ask GP to Check Antibodies to see if you have auto immune Thyroid condition because it all makes a huge difference to your treatment and recovery .

Ask GP to check all vitamins Vit D B12 Iron etc because if these are deficient that makes you feel very poorly too.

I hope some of the amazing people on the forum offer you their great advice they have helped me so much ! and Seaside Susie is amazing with all your vitamins minerals 😀

Hope you start to feel better very soon

Kazbe x

[Delphine-18 in reply to Kazbe]

Thank you for your reply.

[SlowDragon Administrator]

A standard starter dose of Levothyroxine is 50mcg.

Dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Can you add the ranges on your results

FT4 looks on low side

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

Low vitamin levels are extremely common. Low vitamin D often linked to low magnesium as well. Magnesium helps control the heart

Many patients with low FT3 find heart control improves when FT3 is higher. This may mean simply you need high dose, or you may need addition of small dose of T3

First step is to get full testing, just TSH and FT4 is completely inadequate

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or 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 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, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the tests?

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_...

[Delphine-18 in reply to SlowDragon]

My vit D level was 30 last year. After supplements it came up to 65.

I had a debate with the surgery to have my T3 done. Lab refused. I was persistent and eventually was done. Result T3=4 last year around May 2017

Antibodies 1 year ago fine. I have made a private Endo appointment. Just had enough of this. Thank you for your help.

[SlowDragon Administrator in reply to Delphine-18]

Would strongly recommend you get full private testing of thyroid and vitamins FIRST before seeing an endo

Vitamin D still too low. Most need it around 100nmol (assuming your results are in UK units nmol)

What's the range on FT3?

Also extremely important to pick the right endocrinologist. Most are Diabetes specialists

Thyroid Uk has list of recommended thyroid specialists

Email Dionne

[e-mail]

[Delphine-18 in reply to SlowDragon]

Hi

Got all my tests done before seeing Endocrinologist. He was so helpful.

Really listened to what I had to say. When he looked at my T3 4.6 my T4 of 13.1 and TSH 1.2 on 50 mcgs of levothyroxine he stated that he thought a conversation problem was likely so I have been commenced on T3 Liothyronine 5mcg. Also my Vitamin D level is only 65 so advised he would like to see it in a higher range. Supplement commenced.

I was in a state if shock at the price of T3!! How can people be expected to fork out this amount of money.

It's discriminating.

Anyhow thanks again for your assistance and support. Much appreciated.

[SlowDragon Administrator in reply to Delphine-18]

Suggest you put up a new post so that more people can see this

Can you add ranges on TSH, FT3 and FT4. FT4 looks too low

Have you had folate, B12 and ferritin tested? Add results and ranges on these too

Vitamins must be OPTIMAL FIRST

Your vitamin D is still low. Recommended to increase to around 100nmol. How much are you supplementing?

Also essential to know if you have high thyroid antibodies. You need both TPO and TG thyroid antibodies tested FIRST. If TPO antibodies were negative a year ago they will probably not have tested TG antibodies

A Fib can be due to low FT3

But your results look like they suggest you are on inadequate dose of Levothyroxine, not that you are a particularly poor converter. (Need ranges on FT3 and FT4 to be certain)

50mcg Levothyroxine is only a starter dose.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

(If/when also on T3, make sure to take last dose 12 hours prior to test)

Have you seen this endo privately?

Presumably you have a private prescription

If you get prescription to read

Liothyronine 20mcg x 100 tablets

This enables purchase from Germany at MUCH cheaper cost - eg from Bennewitz on link below

thyroiduk.org.uk/tuk/treatm...

100 tablets of Thybon Henning from Germany is 31 Euro plus p&p

100 tablets of Morningside Healthcare or Mercury Pharma brand here in UK are around £950

Once on T3 your TSH will almost inevitably be suppressed and then GP's tend to freak out.

Essential to test FT3 and FT4 at every test (i.e. Privately) and to make sure to take last dose of T3 and Levo is timed as described above prior to each test

[Delphine-18 in reply to SlowDragon]

Thanks for reply. Yes will do new post and share information. Latest results:

My FT3 = 4.6

FT4 = 13.3

TSH = 1.4

Antibodies well within range

B12, folate, ferritin good

Vitamin D 1000 supplement commenced.

As I said will submit new post.

Again, sincere thanks.

[SlowDragon Administrator in reply to Delphine-18]

We ALWAYS need the ranges on results....especially FT3 and FT4 as each lab is different

Typical range on FT4 is 12-20 sometimes 12-22

If on adequate levothyroxine result of FT4 should be about 18 minimum

[SlowDragon Administrator in reply to Delphine-18]

1000iu vitamin D may not be enough to improve levels

Retest in 2-3 months

Personally, with Hashimoto’s, I need 3000iu maintenance and higher dose to improve levels