DESPAIR

[Adelaidebewley]

My name is Gaynor. After seeing 4 Drs in 2000 I was sent away with anti depressants (which made me feel worse) & no blood tests. A year later I was on my knees feeling like death, & heart rate through the roof. My under active thyroid (which I didn’t know anything about) had gone over active & the nurse said it was anxiety.😡 Since then I have had a rollercoaster of bad thyroid issues, & it would be nice if the Drs could accept that our thyroid makes us feel very poorly . Their answer is “It’s in the range you are fine”😡

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking...if any?

Do you always get same brand of levothyroxine at each prescription

Are you currently taking any vitamin supplements

Sounds like you nay have autoimmune thyroid disease also called Hashimoto’s where levels can go up and down

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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested

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 at least annually

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 (and thyroid antibodies, if not been tested yet)

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)

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Adelaidebewley in reply to SlowDragon]

Thank you Admin for your prompt full of Information reply, much appreciated. I have never had my antibodies checked, nor have I been referred to an Endo. The only blood tests they do is T4 & TSH, FBC, liver etc. Neither have I had vitamins done. I am a keen runner but if I exceed my limits I pay a high price. I will check next time I collect my prescription if the levo is the same make.

[SlowDragon Administrator in reply to Adelaidebewley]

Strongly recommend getting full thyroid and vitamin testing done privately as next step

Only test after 6-8 weeks on constant unchanging dose and unchanging brand of levothyroxine

Exercise depletes Ft3 especially if under medicated

How much levothyroxine are you currently taking

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo of your weight

Guidelines are just that ....guidelines.

Some people need more .....some less

healthunlocked.com/thyroidu...

Essential to always test thyroid as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Obviously just testing TSH and Ft4 is completely inadequate.

Low Ft3 tends to lower vitamin levels

Low vitamin levels tend to lower TSH

Are you currently taking any vitamin supplements?

Come back with new post once you get thyroid and vitamin results

[Adelaidebewley in reply to SlowDragon]

Thank you soooo much.

[Adelaidebewley in reply to SlowDragon]

Sorry missed off I am on 100

[Buddy195 Administrator in reply to Adelaidebewley]

Welcome to the forum Gaynor!

I only started to feel better when I joined this forum & followed advice to have thyroid bloods & key vitamins tested privately. I use Medichecks & they often discount tests on Thursdays so maybe worth considering. I was sent by GP to psychotherapist with ‘health anxiety’ but forum members helped me realise that my symptoms were all linked to thyroid problems not in my head!

Feel tons better now thyroid meds & vitamins high in range. Also members encouraged me to trial gluten free & this also helps me. Best wishes to you!

[Adelaidebewley in reply to Buddy195]

Thank you very much for taking time to reply, much appreciated. Will check out medichecks.

[humanbean]

My under active thyroid (which I didn’t know anything about) had gone over active & the nurse said it was anxiety

That nurse doesn't know what she is talking about.

People who have an underactive thyroid i.e. hypothyroidism, can't suddenly become overactive, i.e. hyperthyroid. People can be over-medicated though.

There is a condition called Hashimoto's Thyroiditis (known to patients as Hashi's) that is the commonest cause of hypothyroidism in the UK. About 90% of people who are hypothyroid develop it as a result of Hashi's.

en.wikipedia.org/wiki/Hashi...

Have a poke around in the website of Thyroid UK, the charity which runs this thyroid forum.

thyroiduk.org/

One issue with Hashi's is that in the early days of the condition developing there can be multiple episodes over several years of apparent hyperthyroidism.

It is not true hyperthyroidism where the thyroid over-produces thyroid hormones.

Instead, the immune system goes on the attack against the thyroid, and in the process the destruction of thyroid cells releases the hormone contents of the thyroid cells into the body, increasing levels of Free T4 and Free T3 and thus reducing levels of TSH.

Since doctors rely almost completely on TSH to tell them what is happening with the thyroid this immune system attack reducing TSH makes them think the patient is now hyperthyroid.

Immune system attacks can last hours, days, weeks, ... Nobody can tell when they will stop, but eventually they do and the patient goes back to being hypothyroid again, and in fact may be noticeably more hypothyroid than before the immune system attack. Each attack damages the thyroid more and more.

Rather than reducing the patient's dose, or stopping the levothyroxine prescription altogether, which is what doctors usually do, the best thing a patient can do is to stop taking Levo altogether until they feel very slightly hypothyroid again, then restart their Levo again. If the immune system attack is still going on then they may need a lower dose for a while. Once the attack is over they may need a slightly higher dose of Levo to compensate for the new damage to the thyroid.

This way of coping with immune system attacks is something that patients can do by themselves without involving their doctor. But it does require confidence to do this and might not be feasible for people in the early stages of the disease.

Unfortunately if doctors take away a patient's Levo or reduce dose, it can take months or even years to get the Levo back again at a suitable dose which keeps the patient well, which is why self-help and self-manipulation of the Levo dose is considered a good idea by some patients.

I wish thyroid patients were treated like diabetics who can treat themselves with their insulin according to need. And, ironically, insulin is dramatically more dangerous than thyroid hormones are.

[Adelaidebewley in reply to humanbean]

Thank you so much for your very informative information. I will digest & take on board. The nurse at my Drs stopped me from going in saying it was anxiety. I should have gone to A&E but instead begged the Receptionist to let me see the Dr. When I arrived my heart rate was that high he had to bring the Pharmacist in to give me the thyroxine. I was very poorly but treated very badly by the Drs to the extent where one said “It wouldn’t do this to you” Maybe retraining on thyroid for a lot of them😡