thyriod removed and anxiety

[SharonW1976]

hi I’ve had a total thyroid removal. Since having it done and taking levothyroxine I’ve suffered terrible anxiety, before taking it I didn’t have the anxiety. When I up the dose I get worse anxiety, I want to stop this medication has anyone else suffered in this way ?

[SlowDragon Administrator]

Please add most recent thyroid and vitamin results

Which brand of levothyroxine are you taking and how much

Do you always get same brand levothyroxine at each prescription

ESSENTIAL to maintain OPTIMAL vitamin levels

When were vitamin levels last tested

What vitamin supplements are you taking

What was reason for your thyroidectomy

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Lalatoot]

Oh I suffered terrible anxiety and panic attacks.I have no functioning thyroid and I was kept on too low a dose of levothyroxine for 4 years because my results were in range and deemed normal.

When we don't have enough thyroid hormones for our body, the body compensates by using adrenalin instead. So we can function but the anxiety is there. This is why the anxiety comes even when you are at a happy event such as a lunch out with family or a coffee with a friend. It is not a good way to be .

The ranges for thyroid tests are guides. But we need to find where we feel best within these guidelines. Tsh should be lower than 2 and probably around 1 or lower to give us an idea of how well we are medicated on levothyroxine. The range for ft4 is quite wide for example one testing lab gives a range of 10 to 25. If your ft4 result is anywhere between 10 and 25 then you will be told it is normal. But what if your result is 11 but you really need a result of 18 to feel well? This is why we need to ask for our actual results and their ranges, so we can find out which normal level suits us best as an individual.

Anxiety can be a symptom of too low a dose of levothyroxine. If you share any results on this site plus the dose you are on then we can offer help.

I also found that I could only tolerate increases in levo if I split my dose. So I take some in the morning and some at bedtime.

[SharonW1976 in reply to Lalatoot]

I’ve been on a roller coaster ride since I had the thyriod out in aug 19, I had already suffered with anxiety and depression and I was on medication for 16 years and was fine. But not long after the operation it all started, and I’m still like it now. I’ve seen lots of endocrinologists and all of them say it’s in my head. My TSH currently sits at 40.0 yes it’s that high. (It has been 85.0 at its highest) and I take 100 levo, I can’t seem to tolerate the medication at higher levels at all. I shake and feel so anxious I don’t know what to do with myself. I’m so low at the moment I would do anything to feel like my old self.

[Lalatoot in reply to SharonW1976]

I would get your TSH, ft4 and ft3 measured. Private companies do this through finger prick if docs won't. Put a post on here asking about testing I was on 100 mcg levo when I was having my panic attacks and anxiety. Endocrinologist said my levels were fine.

Well I got my levels tested and my ft3 was way out of step compared with TSH and ft4. I went back to the endocrinologist and showed her. She started me on liothyronine as well as my levothyroxine and the anxiety has gone .

The place to start is getting your blood test results and posting them on here.

[SharonW1976 in reply to Lalatoot]

I’ve just checked my last results and in June I was on 100 levo and my results were

TSH 32.10

T4 8.5

Triiodothyronine 2.0

I’m not very good at understanding these results to be honest. Can you help ?

[Lalatoot in reply to SharonW1976]

Well the GP guidelines say that tsh should be under 2 and yours is 32.So you are very undermedicated.

To interpret the results we really need the ranges that the testing lab gives with them .

But I suspect that the other 2 results are very low and well under range

It all points to you needing more levo.

Have you tried different brands of levo? Have you tried taking your levo in 2 or 3 doses throughout the day?

[pennyannie]

Hello Sharon and welcome to the forum - though see you registered a couple of years ago, so guess you've been reading around and now feel the time is right to jump in :

What was the reason for your thyroidectomy please ?

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. t2 and calcitonin + a measure of t3 at around 10 mcg + a measure of T4 at around 100 mcg. - with T3 said to be around 4 times more powerful than T4.

The thyroid is a major gland responsible for full body synchronisation of your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism and living without a thyroid - your power engine - can be a challenge.

T4 - Levothyroxine is pretty much inert and a storage hormone which your body converts to T3 to power and fully charge up your body to function, with the brain and heart taking the lion's share of this vital hormone.

Conversion of T4 into T3 can be compromised by non optimal levels of core strength vitamins and minerals - especially those of ferritin, folate, B12 and vitamin D and also inflammation, any psychological stress ( emotional or physical ) depression, dieting and ageing will also down regulate T4 to T3 conversion.

Some people can get by on T4 only medication - Levothyroxine :

Some people find T4 seems to stop working as well as it once did and that by ass ing in a little bit of T3 - likely a dose similar to that which their own body naturally supplied them with their health and well being is restored.

Some people can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

Currently in primary care your doctor can only prescribed T4 medication with the second line of defence should you complain, likely being being anti depressants.

There is a lot to get your head round but we are a patient to patient forum and all been there, and with a little bit of help, you too will get support, help and advice on your next best steps back to better health and well being

[SharonW1976 in reply to pennyannie]

Hi penny

Thanks for replying I appreciate any help at the moment.

I had thyriod out due to Graves’ disease. I did get put on t3 for a little while but the anxiety continued and I got put back on to levothyroxine. And I was doing better but I’ve since gone down hill again since the doctors tried to up my dose from 100 to 112.5 of levo, I’m back to 100 again but I’m struggling with bad anxiety again. I’m also already on anti depressants at a high dose, i feel like I’ve come to a decision of wanting to either try a different brand of levo rather than generic levo or take the NDT. I’m beside myself and appreciate any advice or help I can get. My TSH is currently sitting at 40.0 it was 85.0 a while back. Yes that’s right it’s high isn’t it !

[pennyannie in reply to SharonW1976]

Oh, ok. I'm with Graves also but had RAI thyroid ablation back in 2005 - a treatment I deeply regret, but back then knew nothing and just trusted what I was told by mainstream medical.

The TSH is nor a reliable measure of anything once on any form of thyroid hormone replacement, especially if you haven't a thyroid and especially with Graves patients and we need to dose and monitor on the corresponding T3 ad T4 readings drawn at the same time - but -

I'm guessing you have an absorption problem - have you tried liquid T4 ?

We really do need to see a full thyroid panel to include a TSH, Free T3 , Free T4, antibodies, inflammation and ferritin, folate, B12 and folate.

How are your eyes ?

Between them I think Medichecks and Blue Horizon cover the country offering a nurse home visit to draw your blood for you - if this takes some stress out of the day for you.

Once with the results just start a new post/question with all the results and ranges and you will be talked through what it all means and advised of the way forward back to better health.

For all things thyroid dip into Thyroid UK - the charity who supports this forum - thyroiduk.org.

For all things Graves - elaine-moore.com

[mjackson387]

Hi there, quite the opposite for me, i suffered fogginess and anxious symptoms before i got the dose right, and it comes back when i needed to be re-evaluated. I'm underactive T, 200 a day currently. I would speak to your GP.

[SharonW1976 in reply to mjackson387]

Really the higher I got with the dose the more anxious I got, I got up to 150

[Crunchie11]

not had any adverse effects, i would suggest you stick to the dose prescribed amd speak to your doctor

[Silverdaisy]

Hi Sharon, I found that overmedicating on Levothyroxine (thus becoming hyperthyroid) made me extremely anxious and nervous (to the extent I hid from my landlord as I believed he was going to throw me out of my house. He wasn't, and he hasn't - He calls me his best tenant!). I understand the feelings you may be having. I would have a blood test to check the levels.

Good luck.

[SlowDragon Administrator]

Are you taking your levothyroxine on an empty stomach and then nothing apart from water for at least an hour after

Which brand of levothyroxine are you currently taking

Was 25mcg extra same brand as 100mcg

very important to test vitamin D, folate, B12 and ferritin levels too

As you are under medicated and hypothyroid you will have low vitamin levels

We MUST have good vitamin levels to help levothyroxine or T3 to work

What vitamin supplements are you currently taking

[SharonW1976 in reply to SlowDragon]

I’m not taking any vitamins at all, and I’ve not been tested for those either, the doctors just don’t seem to care much. Yes taking it in the morning on empty stomach my TSH was 40.1 last time which is really bad I know

[SlowDragon Administrator in reply to SharonW1976]

So you need to get testing organised

Request GP test vitamin D, folate, B12 and ferritin levels

Thousands of U.K. patients forced to test privately if GP won’t

All thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks currently has 20% off

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[pennyannie in reply to SharonW1976]

Hey there again ;

it is not that ' it is really bad ' but signalling that you obviously are not able to digest, absorb, utilise the T4 tablets -

and the logical next step is to try liquid T4 and see if that resolves the situation.

It's not a question of more tablets but a different form of thyroid hormone replacement at this point in time.

What does your doctor suggest to bring the TSH down into range ?

Do you have readings and ranges of a Free t3 and a Free t4 there please ?

[SharonW1976 in reply to pennyannie]

Ok well doctors want me to take more levo, but in higher doses it makes me feel really anxious the higher I go up, I have tried the liquid type but not for long. I will have results soon as just had another blood test. I haven’t been in range since my operation which was aug 19, I’m so fed up with it all. Being anxious and a high TSH is getting to me. 😞

[pennyannie in reply to SharonW1976]

Well - it's bound to ' get to you ' -

Why not ask to be referred back to endocrinology ?

First get the patient to patient recommended list of thyroid specialists both NHS and private held by admin @ thyroiduk.org and hopefully there is someone on the list who you feel you can get to see or have a video consult with -

You can also start a new post asking for recommendations within an acceptable distance from where you live if a face to face is your preference and there is no one on the list near you - replies will be via Private Message - and then the chat box icon above lights up - the paper plane symbol - and you talk to forum members through a closed, one to one messaging option.