Thinking about coming off levothyroxine..... an... - Thyroid UK

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Thinking about coming off levothyroxine..... any advice?

Hi , I've been on levothyroxine for about 2 years now, and I can honestly say the side effects which I am experiencing are making me wonder if it's worth it.

I have good and bad days , probably more of the bad .

The side effects I'm getting are...

Blurred vision (mainly morning)

Aching muscles (I like to run but feel like I've got no strength anymore)

Throbbing sensation in throat

Sometimes get a pressure sensation in my head

Libido gone (cant get an erection.. I'm struggling mentally with this too)

Recently had a gushing of blood out of my nose (never had a nose bleed before)

And just generally feel down ....

I've spoken to my doc who says .. just persevere...

Im a 40 year old married man who's thinking is it worth taking these pills as I believe my quality of life is suffering and not getting better

If anyone has any advice...itll be much appreciated.. cheers

8 Replies
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Johnljc

I've spoken to my doc who says .. just persevere...

Well after 2 years on Levo, I think your doctor is missing the point.

We might be able to comment if we have some basic information

What are your latest test results, can you please post them, with reference ranges, for

TSH

FT4

FT3

Thyroid antibodies

Have you been doing your blood tests the way you've been recommended in previous threads, i.e first appointment of the morning, no later than 9am; overnight fast from previous evening meal/supper; water only to drink; last dose of Levo 24 hours before blood test?

What brand of Levo are you on? Always the same brand?

Have you had nutrients tested:

Vit D

B12

Folate

Ferritin

If so please post results/ranges, if not it would b a good idea to get them tested.

Reply

What’s your most recent results? Before you throw it away, let’s just see if you’re adequately medicated.

Some of your symptoms are similar to some of mine when I was under/improperly medicated. I really sympathise with the loss of libido. Feeling down and achy body. I never quite fit those in check whilst in Levo alone for 10yrs. Sure I’d have good days and bad but good days only if I really pushed for more Levo which my GP would say meant that I was over medicating.

What really made me well was vitamin and minerals. (Magnesium for those achy muscle, Vit D was low, B12. Ferritin and folate so so.) And also adding T3 because I don’t convert as well as I should. Combination therapy has really made ALL my symptoms go away and now my husband and I are very happy that my libido is good 😉 I’m 45yrs and he’s got to keep up with me now 😂

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Post from 6 months ago says you were only on 75mcg

That's a tiny dose. Especially for a man

Has GP increased dose to 100mcg since?

Bloods should be retested 6-8 weeks after each dose increase

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

As you are likely under medicated, it's very likely testosterone is low.

Extremely common as well to have very low vitamin D, folate, ferritin and B12

Can you add most recent blood test results and ranges

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 Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Ask GP to test vitamin levels, Thyroid antibodies and testosterone

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

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_...

List of hypothyroid symptoms

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

Reply

Low testosterone and hypothyroidism

thyromate.com/blog/hypothyr...

Low testosterone and Hashimoto's

thyroidpharmacist.com/artic...

Reply

Many do not recover on levothyroxine alone. Doctors don't believe us and do not recognise any of the clinical symptoms we can have. Before blood tests and levothyroxine were introduced, we were all diagnosed upon symptoms and give NDT. (natural dessicated thyroid hormones). NDT is made from cows or pigs thyroid glands, therefore may be more conducive to the human body than synthetic levothyroxine or liothyronine.

The NHS used to give us options if we still complained. The 'BTA Association' who I would have assumed knew more than those on this forum made False Statements about NDT in order to remove it from the NHS as they've also done with T3 (due to exorbitant high cost).

NDT contains all of the hormones a healthy gland would produce and saved lives since it was first introduced in 1892 and is still prescribed in other countries. Before that hypothyroid people died an awful death. There were no blood tests back them and it was all about clinical symptoms and the relief of them.

Read 'safely getting well on thyroid hormones'. The doctor would never prescribe levo. Only NDT or T3 alone for thyroid resistant patients.

naturalthyroidsolutions.com...

Those on this forum are on it because they struggle with recovering their health and I think its due to non-knowledge by the medical profession who seem fixed upon the TSH instead of concentrating on relieving clinical symptoms.

Natural dessicated thyroid hormones contain, T4, T3, T2, T1 and calcitonin (calitonin is good for bone health).

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Hi , thanks for all of the replies

Been to see a different doctor today , mentioned my symptoms, she has sent me for a full blood test including liver function and testosterone levels.

She also said to take my tablets on the day .... this is to see what the steady level is .....previously I've done the tests with no meds for 24 hours .... which I'm going to do to get a true test( reason for this ..I'd told her I wanted to come off)

When I go back I'll ask for a print off for the results and post

Again thanks

Reply

Update.

Had a call from doctors , been told to reduce levothyroxine from 75 to 50 and have bloods done again in 6 weeks.

Going to try and get a copy of results tomorrow.

Anyone else been reduced ..... I'm glad I took my tablets on the morning of blood test because obviously they have been taking me over and making me ill

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