New member feel like giving up advice please - Thyroid UK

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New member feel like giving up advice please

Zara_K87 profile image
20 Replies

Diagnosed hypothyroid 2011, no idea what to do about dose. Do I stop or take or reduce or stay on the same 150mcg levo, dose been changed too many times to count. Fed up with feeling so awful with normal results.

Thank you

TSH 5.6 (0.2 - 4.2)

FREE T4 12.9 (12 - 22)

FREE T3 3.0 (3.1 - 6.8)

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Zara_K87 profile image
Zara_K87
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20 Replies
greygoose profile image
greygoose

Hi Zara, welcome to the forum.

When you've been here for a while, and done some reading, you will realise that there's no such thing as 'normal', and when a doctor uses that word, all he means is 'in-range', which is not the same as 'optimal'.

So, do you have your actual numbers - results and ranges? If so, post them here and let's have a look. If not, ask for a print-out of your results. If you live in the UK, it is your legal right to have one. Then, people will be better able to help you. :)

Zara_K87 profile image
Zara_K87 in reply togreygoose

TSH 5.6 (0.2 - 4.2)

FREE T4 12.9 (12 - 22)

FREE T3 3.0 (3.1 - 6.8)

greygoose profile image
greygoose in reply toZara_K87

Well, there's nothing normal about those results! Your TSH is much to high - should be one or under. Your FT4 is at the bottom of the range when most people need it at least over mid-range. And your FT3 is below range, when most people need it up the top of the range to feel well!

If this is what your doctor calls 'normal', then he is very ignorant and you need a new doctor. It's really not surprising that you feel bad with these results.

When were the tests done? And, how much levo were you taking at the time? 150 mcg? If so, then I have to ask : how do you take your levo? Do you take it on an empty stomach, just with water, and wait at least an hour before eating or drinking anything but water? Are you taking any other medication? Your results shouldn't be quite so bad on 150.

Zara_K87 profile image
Zara_K87 in reply togreygoose

They were done October 2017 and I was taking 50mcg levothyroxine and I take levothyroxine on an empty stomach with just water and I take no other meds

Clutter profile image
Clutter in reply toZara_K87

Zara_K87,

You should have a follow up thyroid function test 6-8 weeks after any dose adjustment. You are likely to be very overmedicated if dose was raised from 50mcg to 150mcg. Dose adjustments are supposed to be in 25mcg increments every 6-8 weeks. Please arrange a thyroid blood test as soon as possible.

Zara_K87 profile image
Zara_K87 in reply toClutter

Hi dose wasn't raised from 50mcg to 150mcg I am still on 50mcg

SlowDragon profile image
SlowDragonAdministrator

Do you have high thyroid antibodies? Ever had these tested? If high this is autoimmune thyroid disease also called Hashimoto's

Highly likely to have low vitamin levels. Have you had Vitamin D, folate, ferritin and B twelve tested ?

Dose is far too low. TSH should be around one and FT4 towards top of range and FT3 at least half way through range.

You need 25mcg dose increase and retesting after 6-8 weeks

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Link about antibodies

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

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Private testing available if GP is unhelpful

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.

Zara_K87 profile image
Zara_K87 in reply toSlowDragon

Hi I am not on 150mcg I am still on 50mcg and been on this since June 2017. I don't know what's been tested and what hasn't

Clutter profile image
Clutter in reply toZara_K87

Zara_K87,

You said you were on 150mcg in your opening post. Never mind. You are undermedicated on 50mcg to have TSH 5.6, low FT4 and FT3 below range. Ask your GP to increase dose to 75mcg. When you see your GP you can ask whether thyroid antibodies were tested and, if so, what the results and ranges were.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Zara_K87 profile image
Zara_K87 in reply toClutter

Sorry the endo thinks I am on 150mcg but I didn't feel comfortable on this dose at all. I have just looked at previous blood work and I have TPO antibodies of 530.5 (<34)

Clutter profile image
Clutter in reply toZara_K87

Zara_K87,

You are undermedicated on 50mcg so increase to 75mcg and have a follow up thyroid test after 6-8 weeks to check levels. You may need a further increase to 87.5mcg or 100mcg but I should think you would be very overmedicated on 150mcg.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

greygoose profile image
greygoose in reply toZara_K87

Well, when posting on here, it helps if you tell us what you're really taking, and not what your endo thinks you're taking! How on earth can anyone help you if you don't give all the facts? :)

So, you're on 50 mcg now, right? But when those tests were done you were on 50, right? Well, it looks like you should be on 150 mcg because those labs are very bad. And, you've really got to stop jiggling your dose around without getting tests done first. You need to stay on any dose for a minimum of six weeks to know if it really suits you.

If you didn't feel good on 150, it's probably because you have nutritional deficiencies. You need to get your vit D, vit B12, folate and ferritin tested.

Zara_K87 profile image
Zara_K87 in reply togreygoose

Sorry I just didn't want anyone to think that the endo was wrong in reducing me from 150mcg to 50mcg

Zara_K87 profile image
Zara_K87 in reply togreygoose

FERRITIN 5 (15 - 150)

FOLATE 1.3 (2.5 - 19.5)

VITAMIN B12 145 (190 - 900)

VITAMIN D TOTAL 20.4 (<25 DEFICIENT)

greygoose profile image
greygoose in reply toZara_K87

Well, you're deficient in everything, so not surprised you're having problems.

I suggest you have a look at some of SeasideSusie 's responses to people in the same position, to get an idea about how to supplement in order to raise these levels. You're never going to be well unless you do.

SlowDragon profile image
SlowDragonAdministrator in reply toZara_K87

Ferritin is extremely bad

Others are dire

When were these done?

Has GP seen them?

If they have, but done nothing, then see a different GP.

Make an urgent appointment

You will almost certainly need iron infusion

Full testing for Pernicious Anaemia before starting B12 injections

Loading dose of Vitamin D

They are so low because Thyroid dose is too low. But they need improving urgently because you can't use thyroid hormones when these are too low

See SeasideSusie advice to similar dire results

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply toZara_K87

So when was this test result from?

You are entitled to copies of your own blood test results

You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

This test result shows you are under medicated

When was it reduced from 150mcg and why?

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Zara_K87 profile image
Zara_K87 in reply toSlowDragon

The endo thinks I am on 150mcg but I didn't feel comfortable on this dose. The result was taken October 2017 but was previously on 150mcg levothyroxine but no reason for reduction.

TPO antibodies 530.5 (<34)

Zara_K87 profile image
Zara_K87

Been on as much as 175mcg levothyroxine and everything still in range

SlowDragon profile image
SlowDragonAdministrator in reply toZara_K87

If you have never had vitamin supplements I am not surprised you felt dreadful

Hashimoto's trashes our vitamins

Strictly gluten free diet is very likely to help. But you must get Levo dose up in steps. Plus get vitamin levels up to very good levels

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