Why do I Feel Rubbish when I am on the same dose of Thiroyd - 2.5 grains as I was just over a year ago? Blood results all over the shop??!

[princess20]

Hello everyone. A year ago I decided to go the route of T3 only, which I had to explore but, in the end did not agree with me at all and I've been quite ill. Now I am back to 2.5 grains with no T3 and I've just had my bloods done. I should mention that I cannot find my blood test results before I began to experiment but I was on 2.5 grains for a long time. My TSH was always a low 0. something, T4 was usually in the high range and/or sometimes over range and T3 was in mid range to high. But experienced brain fog and other cognitive probs.

Anyway blood test result 17 July 2019

2.5 grains Thiroyd. FT4 6.45 pmol/l 10.32 - 25.8

FT3 12.7 pmol/ 2.15 - 6.45

Blood test 12 March 2019 1.75 grains Thiroyd & 1/4 tab T3

FT4 11.6 pmol/l 10.32 - 25.8

FT3 2.02 pmol/l 2.15 - 6.45

I do not understand what is happening with these results at all. The latest T4 result should be significantly higher and my T3 result has gone through the roof.

The question is - Has the lab got the latest results around the wrong way or is there something strange going on with my Thyroid for some reason?

Even if my latest results are around the wrong way my T4 is still really low and T3 on the high side ( but not as worrying as 12.7).

I'm thinking that I should go back to LEVO alone for a time as my thyroid and I seem to be confused for some reason.

I've also put on lots of weight, I'm tired all the time (in fact i'm off for a snooze - right now hee hee) no energy and the brain fog is back.

Since Sunday 21 July I have dropped my meds to 2.25 grains

Love to know your thoughts

[greygoose]

It does rather look like a mix-up at the lab, doesn't it. Would make more sense the other way round.

In March you were taking a total of 22 mcg T3 and 73.6 T4, approximately.

In July you're taking 22.5 mcg T3 and 95 mcg T4.

The difference in dose of T3 cannot possibly account for the difference in the results, either way round. So, do you have Hashi's?

[princess20 in reply to greygoose]

I don't have a swollen thyroid gland if this is what Hashi's is?

[Angel_of_the_North in reply to princess20]

No. It is an autoimmune disease which gradually destroys the thyroid and causes it to dump hormones into the blood stream so your results jump around. it is usually diagnosed by having over range TPO and/or TG antibodies. It is most common cause of underactive thyroid

[princess20 in reply to Angel_of_the_North]

It has always been over range. When I was first diagnosed the anti thyroid peroxidase was 1268 IU/ML normal range <82 IU/ML.

But when I was trying to switch to T3 only (April 2018) I got a result of 41 IU/ML normal range <34.001.

The Dr's did say that there was nothing left of my thyroid.

Thanks for replying. It's nice to know there is someone sensible out there who's a lot more knowledgeable than I am.

[Angel_of_the_North in reply to princess20]

So you have Hashis/autoimmune thyroid disease so your results will jump around. When your thyroid has completely gone, they should stabilize, but it is worth trying a totally gluten-free diet and supplementing selenium to try to stave off attacks

[greygoose in reply to princess20]

OK, so you do have Hashi's. And, not doctor has ever told you? This is a brief run-down on how it works:

Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.

After every attack, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can do for him/herself to help them feel a bit better.

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified by a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, but it also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

The fact that you got a lower antibody result in April 2018 means nothing. Antibodies fluctuate all the time, so a lower result does not mean your Hashi's is cured, or even getting better. It just means they haven't been needed for a while. Antibodies tend to be highest just after an immune system attack, when they come along to clean up the traces of TPO and Tg that leaked into the blood during the attack. Then, they go low again.

[SlowDragon Administrator]

Had quick look through your previous posts

Couldn't see any vitamin test results or thyroid antibodies

Do you have Hashimoto's?

Ever had TPO and TG thyroid antibodies tested?

Low vitamins are extremely common generally, but especially if been alternating dose or mix of thyr Treatments

Bloods should be retested 6-8 weeks after being on constant unchanging dose of thyroid hormones

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also 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).

If/when also on T3, or NDT make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

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

Come back with new post once you get results and ranges

[princess20 in reply to SlowDragon]

Hi Yes. I took my previous day's dose 24 hrs before the tests and fasted.

with regard to TPO and TG I have a result from April 2018 Anti thyroid peroxidase (TPO) when I was in the middle of switching to T3 only -

Result 41 IU/mL range <34.00IU/mL

I also have a test from when I was first diagnosed with Hypothyroidism - Anti thyroid Per - Result 1268 IU/ML range <82 IU/ML.

I know I have had these other Anti thyroid Per tests done and they have all been very high but since moving I cannot locate them.

April 2018 - T3 dose 12.5 mcg T3 - Results - TSH 43.1 mIU/L 0.27 - 4.20

T4 1.6 pmol/L 12.00 - 22.00

T3 2.5 pmol/L 3.10 - 6.80

June 2018 . Dose - Thiroyd 3/4 grain. 3/4 tab T3 (25 mcg tab).

T4 - 3 pmol/L 12.00 - 22.00

TSH - 4.83 mIU/L 0.27 - 4.20

T3 - - 5.3 pmol/L 3.10 - 6.80

Tested low on Vit D. 32 nmol/l. when I was given several boxes of vits.

Folate 2.9 ug/L 2.50 - 19.50 ug/L

Ferritin 36 ug/L 30.00 - 470.00ug/L

B12 419 ng/L 180.00 - 900.00

That's all I've got to hand at the moment. Thanks

[SlowDragon Administrator in reply to princess20]

So if you are taking NDT last dose should be 8-12 hours prior to blood test (not 24 hours)

When were these vitamin tests done?

All were too low

What supplements do you currently take

Vitamin levels need retesting

Vitamin D aiming for at least around 80nmol and around 100nmol may be better

B12 at least over 500

Folate at least over 10

Ferritin at least over 70

so your high thyroid antibodies confirms you have Hashimoto's

Are you on strictly gluten free diet?

[princess20 in reply to SlowDragon]

I will get a more comprehensive test done with anti thyroid per and all the vits etc. and get back to you. I will stay on the dose I was on when I had the tests done last week. thanks again

[SlowDragon Administrator in reply to princess20]

If you are taking any vitamin supplements that contain biotin you need to stop these a week before as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

If taking any iron supplements you need to stop these a week before if you want accurate test of iron levels

Make sure to take last dose of NDT 8-12 hours prior to blood test

Test as early as possible in morning and fasting

If doing Medichecks or Blue Horizon best to test on Monday, Tuesday or Wednesday and post off bloods immediately

[princess20 in reply to SlowDragon]

I'm actually living in Bulgaria and only able to get blood tests from the local lab between 7 and 9 in the morning.

Thanks for the all the information and i will post once I've got fresh results.

[Angel_of_the_North in reply to princess20]

All bad!

Vit D. 32 nmol/l. needs to be at least in the high 90s

Folate 2.9 ug/L 2.50 - 19.50 ug/L needs to be in double figures (best to take methylfolate, not folic acid)

Ferritin 36 ug/L 30.00 - 470.00ug/L needs to be at least 70

B12 419 ng/L 180.00 - 900.00 needs to be over 500 to prevent neurological damage. Over range is fine if supplementing.

But if those results are from 2018, they are not relevant now.

[princess20 in reply to Angel_of_the_North]

Thanks for that. I will get some more tests done next week and re post.