Discharged by endo - anxiety? : So, 2 years I... - Thyroid UK

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Discharged by endo - anxiety?

mishoakes profile image
16 Replies

So, 2 years I first saw my endo, I've been discharged. Yet, my symptoms still remain.

Basically, for over 2 years my main symptoms have included sweating, tiredness, and a constant feeling of heat radiating from my body. This got worse around 10 months ago. And I mean, ridiculous. Cross my arms for a second and any parts of my skin which were touching each other would be sweaty. That's how bad it was.

After various, and too many, changes to to my medication, by bloods results are finally what they should be, as are my vitamins. I don't have them to hand, but they are within optimum range. Now taking 125 levo.

So the endo has discharged me, saying the symptoms are 'because my body has been put into a constant state of anxiety.' My anxiety is worse, sure, but the symptoms are there 24/7 even when I don't feel anxious. It makes sense with the symptoms, but skeptical this is suddenly the end of y thyroid problems.

Prescribed sertraline to help take my body out of this state and stop the symptoms.

Anyone experienced this situation?

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mishoakes
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16 Replies
Lalatoot profile image
Lalatoot

What are your actual blood results and the ranges. For years my blood results were in range but I never felt right and I was anxious and had panic attacks. I was taking citalopram and levo. Now I know that my in range results were not good. My tsh was too high at 4 for someone on levo and my ft4 at 15 was too low for me. My Ft3 was low too.

What was happening was my body was using adrenalin to make up for the lack of thyroid hormones hence the anxiety.

Jazzw profile image
Jazzw

Oh, what a charming Endo. So what you got there then was, “I don’t know what’s wrong so I’ll just say it’s all in your head”. An Endo has absolutely no business diagnosing a mental health condition. If that doctor has written that on your medical notes, I’d be asking for it to be removed pronto.

As Lalatoot says, what exactly were your most recent results? You’re male aren’t you (thought I’d add that before anyone started banging on about menopause etc. :) ). Could you post them for us - and your most recent vitamin B12, Vit D, folate and ferritin levels if you have them?

humanbean profile image
humanbean

I would be suspicious of your adrenaline and cortisol levels. Look up lists of symptoms for low cortisol and high cortisol. There tends to be a lot of overlap between the the symptoms of low and high cortisol, and so testing is essential to discover if either situation is a problem for you.

Unfortunately I don't know of a way to test adrenaline levels, but cortisol can be tested with a private saliva test :

regeneruslabs.com/products/...

I'd be interested to see your thyroid results and your nutrient results too.

Edit : I used to suffer from depression and anxiety from childhood onwards - I eventually discovered (in my 50s!) that a major cause of it was low iron. I monitor and treat myself to maintain my levels now.

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking?

First thing is, do you have any actual blood test results?

if not will need to get hold of copies.

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

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

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 you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

shaws profile image
shawsAdministrator

They talk a lot of rubbish, just because they cannot figure out that the patient's body may not find levothyroxine suitable and who still remain symptomatic.

Unfortunately as they've withdrawn other options i.e. NDT, T3 or adding T3 to T4 that we don't have the option to trial these to see if they work better than levo alone.

I, for one, was more unwell on levo than what I take now - which is T3. We used to have options:-

NDT - natural dessicated thyroid hormones - used since 1892 up until a couple of years ago. Withdrawn I believe to force us onto a cheaper option, i.e. levothyroxine - not incljuding the 'extras' many have to be prescribed to try to relieve symptoms.

You haven't given any history in your profile, i.e. when diagnosed etc.

This is the method for blood tests (just in case you aren't aware).

The earliest possible blood test, fasting (you can drink water).

Allow a gap of 24 hours between last dose and the test and take it afterwards. This helps keep the TSH at its highest as that seems to be all the professionals take notice of. TSH is actually from the pituitary gland and it rises to try to flag up the thyroid gland to produce more. The aim, once diagnosed and taking replacement thyroid hormones, is a TSH of 1 or lower with Free T4 and Free T3 towards the upper part of the ranges. (the latter rarely tested).

Levothyroxine (T4 ) is an inactive, synthetic hormone and should convert to the Active thyroid hormone T3 and it is our T3 receptor cells that need T3.

hormonerestoration.com/

Thyroid hormones should always be taken on an empty stomach with one full glass of water and wait an hour before eating. Food can interfere with the uptake of hormones.

I am also not medically qualified - had to diagnose myself and then treat myself as I didn't improve whatsoever when following doctors' instructions

JD138 profile image
JD138

Like you I had great difficulty in getting endocrinologists to take me seriously. At age 62 the first one suggested that I lose weight, the second suggested I was depressed, and the third suggested I was having A SECOND MENOPAUSE!!! I didn't go back. I saw a functional medicine doctor who treated me with supplements and excellent nutritional advice. I was having roughly 10 major sweats a night until we figured out that I was both gluten and dairy intolerant. My advice is try to find a good nutritionist with a BANt qualification. Good luck.

shaws profile image
shawsAdministrator in reply to JD138

They do have a cheek in 'assuming they know more than the patient (the patient who does eventually know more through the necessity of trying to restore themselves to 'symptom-free'.)

I've never heard of a Second Menapause and that statement made me laught aloud. What next - any excuse is better than none - I think not because we've to read much more than they do, we actually experience disabling symptoms and are usually given another prescription to try to control them.

The fact that they disgrace themselves by telling the patient to 'lose weight' as they have no clue that weight gain is a common clinical symptom (due to inefficient dose of replacement hormones or undiagnosef) or are depressed (who wouldn't be if replacement hormones not working) but blame us, the patient of eating the wrong food etc - nothing about not having an option or an optimum of thyroid hormones that allows us to recover our mo-jo :)

I should also state I'm not medically qualified but as I had to diagnose myself when TSH was 100 - a week before the GP 'missed TSH of 99.5'. I cried when he told me I had nothing wrong and all 23 tests were fine. He didn't read the TSH.

It's a blessing we have an internet connection otherwise we'd have no support and I pity those who do not as they are just unwell everyday with little respite.

Lora7again profile image
Lora7again

I am surprised he hasn't referred you to a counsellor that's what mine wanted to do because I started crying because he said everything was normal. I felt so ill and my hair was dropping out and I could barely stand and he said I was normal?! I sometimes despair at the way we are being treated by these so called experts! Sorry to rant but I would look for another Endocrinologist all you need is a referral letter from your GP and you can go anywhere in the UK.

Benos123 profile image
Benos123

Through all of this one must never forget the difference between God and an Endo!

Oh and the difference is that God doesn't make out to be an Endo!

Dressagelovr profile image
Dressagelovr

Anxiety can, unfortunately, be a side effect of the thyroid medicine itself as well as sertraline.

Smorzando profile image
Smorzando

I've read somewhere - and I have a feeling it was the NHS website? - that sertraline can interfere with levothyroxine absorption. Maybe worth looking into?

Smorzando profile image
Smorzando

I've read somewhere - and I have a feeling it was the NHS website? - that sertraline can interfere with levothyroxine absorption. Maybe worth looking into?

Smorzando profile image
Smorzando in reply to Smorzando

I found the reference I was looking for, not sure if it will be relevant to you but maybe to others. CKS (NHS clinical knowledge summaries) under "Prescribing information" : "The effects of levothyroxine may be decreased by concomitant treatment with Sertraline"

Lora7again profile image
Lora7again in reply to Smorzando

Have you seen this?

ncbi.nlm.nih.gov/pubmed/195...

Smorzando profile image
Smorzando in reply to Lora7again

Yes, I had a quick look at that just now, actually - wasn't quite sure what to make of it, though!

vocalEK profile image
vocalEK in reply to Lora7again

What exactly do they mean by " T(3) levels remained within the euthyroid range during the study period"? Do they believe that the range in which 95% of the people sent for testing ended up establishes "euthyroid"? Have they ever heard that to be "free of symptoms" (which is how "eruthyroid" SHOULD be defined) most folks need their T3 to be in the upper third of the lab's "standard" range?

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