Levothyroxine reduced now feel worse: I had been... - Thyroid UK

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Levothyroxine reduced now feel worse

Hs12171
Hs12171

I had been taking 50 mcg of levothyroxine for about a year and a half and felt mostly fine apart from some anxiety here and there, recently I’ve had a blood test and the doctor said my levels were a bit high so told me to reduce back to 25 which I initially was on and I have been taking that for about 2 weeks and feel much worse that I ever felt on 50, I am just wondering if anyone has expirienced this and if it is just because of the change and will level out or if it’s likely I need to increase again? I have been feeling really cold, spaced out almost and like it’s hard to balance? Any advise is welcome as I am only 23 and this whole thyroid thing is fairly new to me

10 Replies
oldestnewest

You need to get your test results and the ranges ,as lab ranges differ then post again.I suspect the GP has based his reduction on TSH alone but as long as Free T4 and Free T3 are in range it is not normally a problem.Often the GPs do not test FT3 which is the active hormone every cell needs.

50 mcg is a low dose in any event and reducing it will make you ill.

You need to learn about thyroid illness ,tests and treatments and a good place to start is the Thyroid UK web site.Become a member as well to keep informed.

shaws
shawsAdministrator

50mcg of levothyroxne for one year - is one year too long as 50mcg is a starting dose with 25mcg increments every six weeks until symptom-free. Problem is doctors know no clinical symptoms and adjust medication according to the TSH alone.

The Thyroid Stimulating Hormone is from the Pituitary Gland - not the thyroid gland and it rises when gland is struggling, however, it should not be used for reducing dose down when the patient has already been diagnosed as hypothyroidism.

Doctors and endorinologists believe that a low TSH equivals hyperthyroidism as there are some serious deficincies in their training with regard to anything to do wth the thyroid gland. They all neeed refresher courses. Poor training.

If 50mcg is a starting dose, why is he reducing your dose down even further to 25mcg which means your body will not have sufficent thyroid hormones for our brain and heart in particular to work effectively. We have millions of T3 receptor cells in our body which need T3 to function and you'll certainly not have sufficient from 25mcg of T4.

All blood tests for thyroid hormones have to be at the very earliest - not after you've taken levothyroxine.

So, the earliest a.m. blood test, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards.

Tell your doctor you've taken advice from Healthunlocked Thyroiduk. the NHS Choices for informatio and help about dysfunctions of the thyroid gland.

Can he please give you a new blood test whyich is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferrtn and folate.

Make the appointment for the very earliest and follow procedure above, i.e. 24 hour gap from last dose of levo and fasting (you can drink water).

SlowDragon
SlowDragonAdministrator

Please add the results and ranges on the last blood tests that GP said were high

NHS guidelines saying standard starter dose is 50mcgs and that dose is increased in 25mcg. Most patients eventually need somewhere between 100mcg and 200mcg

beta.nhs.uk/medicines/levot...

Do you know if you've had your antibodies tested? Could be that you have Hashi's, and that would change everything.

Hs12171
Hs12171
in reply to greygoose

I don’t think I have, I’m going to ask to be tested as after looking online I definitely think I could have this

greygoose
greygoose
in reply to Hs12171

I think that's a good idea. :)

TSH is Thyroid Stimulating Hormone. It is produced by the pituitary to stimulate the thyroid to make more hormone. The higher it is, the more hypo you are. However, you can still be hypo even if the FT4 and/or the FT3 are low, even if the TSH is 'normal'.

T4 and T3 are the thyroid hormones. Your FT4 looks high, but difficult to tell without the ranges. But, even if your FT4 is high, you could still have hypo symptoms if your FT3 is low. But, as they rarely test the FT3, a lot of people probably go undiagnosed.

T4 is the storage hormone that has to be converted into T3, the active hormone. But, not everybody is good at converting. Unfortunately, doctors don't understand that.

The only ones I was tested for was TSH which was 1.41 and T4 which was 23.4

Not too sure what this means

When I was initially diagnosed I think my TSH was 9 and my other ones were in the normal range

SlowDragon
SlowDragonAdministrator
in reply to Hs12171

A TSH of 9 before treatment shows you were hypothyroid

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

Just testing TSH and FT4 is completely inadequate

Low TSH and high FT4 can be due to poor conversion of FT4 to FT3. This is very common problem if vitamins are too low or have Hashimoto's

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, delay and take straight after test. 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_...

I was on 75 mcg of levo and my doctor told me my TSH was a bit high but my dose was reduced by 25 every other day which might be a better option.

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