Feeling worse but test results satisfactory

[Tatties]

I was diagnosed with hypothyroidism three months ago and put on 50mcg Levothyroxine. Since then, I've not been feeling better - if anything the fatigue is worse. Had blood test earlier this week and apparently the result was "satisfactory" - but that's not how I feel so I'm seeing the doc tomorrow to discuss. Is it normal to feel a bit worse once going on a low dose of meds? I'd like to try going up to 75mcg but what if the doc says no? Any advice?

[Nanaedake]

What was the actual blood test result and what is the lab range? Best thing is to get a copy of results along with the lab ranges and post them here for advice. You are legally entitled to a copy of your blood test results if in UK. Ask at GP reception. You should be able to register for online access to results too.

Ask GP to test, vitD, folate, ferritin and B12. If any of these are low they can compound symptoms and can be similar to thyroid symptoms. These essential nutrients are often low in people with thyroid disease.

[Buddy195 Administrator]

Can you post your blood results with ranges as this will help members to offer advice? Have you had an antibody test for Hashimotos?

50mcg is a starter dose of Levothyroxine, so its likely you may need an increase to feel better.

You may also need to check your vitamin levels and supplement - many of us with thyroid issues only feel well if both thyroid medication and ferritin, folate, D3 (& others!) are optimal.

[greygoose]

I would ask 'satisfactory for whom?' Obviously not for you. 50 mcg is just a starter dose. It's rare to find someone who feels well on it. It should have been increased to 75 mcg six weeks after starting it.

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

Normal means little

You need the actual results and ranges

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

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 primary 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_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that 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...

[Oldlady123]

Hi Tatties, when I first started Levo 50mg it was a good 4 or 5 months until I got used to it, then I had to increase to 75mg and again it took me a while to acclimatise. I remember feeling quite poorly but you will get there. I did get a couple of side affects too like aching joints etc but a year on they have gone. Hope you feel a lot better soon.

[HoovyPudsey]

Thank you. This is the most easy to understand answer I've ever read. I've been going crazy reading everything but not really understanding , but your post now confirms that my G.P hasn't done the full range of tests and I need to buy testing.

I have been on 75 levo for nearly a year and still felt so tired, confused and achy that I gave up work in the summer. However, in the past month Ive experienced palpitations, anxiety and awful sweating. On visiting hospital for a minor Gynecological opI asked if they could look at my bloods. Surprisingly my TSH was 0.1 but ,T4 was very high at 28. The nurse said " oh your meds are too high!"

But, as they only did the old T4 test, not T3 how do I know that is the cause? Is it normal for results to switch from hypo to hyper without an underlying medical problem? I'm too scared to go back to the G.P as I believe they won't investigate and simply Lowe my dose of Levo.

Please could you advise me on the next step to take?

Again, many thanks.

[vocalEK in reply to HoovyPudsey]

Yes, if you have Hashimoto's thyroiditis, your thyroid hormone outputs can go up and down. Dr. Amy Myers explains why the doctor missed diagnosing this for you. amymyersmd.com/2018/02/3-re...

If your Free T4 is over range, they don't need the Free T3 to confirm Hashi's, but it is really important to know your FT3 numbers when you are trying to eliminate symptoms of hypothyroidism. To stop the symptoms you are experiencing from high FT4, just reduce your levothyroxine a little for a short time. Your next step might be to ask for the full panel of testing. See the response above from SlowDragon for details.

[Shelley1146]

GP's will always start you off on a low dose for a month or two to see how you cope.

Unless the go does a full thyroid panel blood test it may look ok. But you may not be managing T4 very well.

I would also get your B12, vit D3, Magnesium levels checked.

I supplement with these and others to help throughout the year.

At the end of the day, you know your body better than anyone else. Go with your own gut instinct. But keep persevering. Its not an overnight fix.

[Roadrunnergreg]

Hi tatties it's not if your in range, it's where you are in that range. Most people feel the best with the following

TSH 1 or below.

FT4 65%of the range usually in the UK that is 12-22 your aiming for 17ish

FT3 about 75-80% of the range, usually 3.0-6.8 so your looking for 6.0-6.2

Without testing FT4 FT3 you/the doctor won't know if your converting properly, ie you could have ideal FT4 and low FT3 and if your not converting properly you could well be low in Selenium or Zinc as these are required to covert FT4-FT3

Hope that helps...

[Tatties]

Thanks very much everyone. I saw the doctor today and she put me up to 75mcg and gave me a copy of my results. I'm off to sleep and will post the details tomorrow. Grateful to have this forum

[TeamMK]

My blood boils every time I read that a Dr relies on numbers on a lab result to judge that a patient is therefore "within range", end of story, but clearly a patient is NOT feeling good. We are all individuals. Until one is optimised - whatever that takes - you will not feel well. Surely the main factor a Dr should consider is "how do you feel"? I

[Tatties]

Here are the results from my first test in August and then again this week. Tests were done through the NHS and don't include T3. I've been told it's autoimmune/Hashimoto's but I'm having difficulty getting my head around the details so would appreciate any help interpreting the numbers and advice regarding what I might want to do next. As of today I'm on 75mcg Levo, to be tested again in 6 weeks.

Mid-August:

TSH 9.57 mU/L (0.55 - 4.78)

Free T4 15 pmol/L (10 - 25)

FSH 43.0

Now (after 3 months on 50mcg Levothyroxine):

TSH 3.56 mU/L (0.55 - 4.78)

Free T4 16 pmol/L (10 - 25)

FSH 8.2

In Mid-August they also gave me results for:

Ferritin 42.4 ug/l (7.0 - 150.0)

Vitamin B12 344 ng/l (200 - 700)

Serum Folate 7.2 ug/l (3.0 - 20.0)

Thanks

[Tatties]

PS I followed the advice here and was tested in the morning before taking my Levo and before eating.