Depression and Anxiety

[Salem1313]

I was diagnosed with an overactive thyroid in March I was then put on carbimizole 40mg I have only had my bloods done twice since and I have never seen the Dr is this normal? I also had a thyroid storm which landed me back in hospital but still given no medical help then three weeks ago they told me threw the specialists receptionist to come off it after being on 20mg I have done so but I have been left with awful moods swings and feel incredibly low pls could anyone tell me is this normal as I have no one to ask because I can never get to speak to the specialist, thank you.

[PurpleNails Administrator]

I do not believe this is the typical sequence of treatment.

Firstly the cause of your hyperthyroidism must be determined before commencing treatment, usually a specialist investigates this.

It can only be done by antibody testing. Thyroid Stimulating Immunoglobulin (TSI) and TSH receptor antibodies (TRAb) are associated with Graves (constant hyperthyroid). There is also Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) which are positive in BOTH autoimmune conditions (thyroiditis/Hashimotos & graves). Autoimmune Thyroiditis ultimately causes hypothyroidism but can begin with transient hyperthyroidism)

Was this step done? Do you have access to blood test results you can post on here?

40mg is a standard starting dose for Graves patient with high levels (can go up to 60mg), but it is usually tritiated down slowly in line with your FT3 & 4 levels. Six weekly testing is standard. You would normally remain on anti-thyroid medication for around 18 months before seeing if you can remain in remission without it.

Your levels would have to drop very significantly to warrant a complete stop. You need repeat testing to see where your levels go from here. Has a repeat test been scheduled?

Also important to test B12, ferritin folate and vitamin D.

[HashiFedUp]

This is quite shocking and not normal at all. You should be in regular contact with your doctor and regular bloods while they establish whats going on. Have a look at the NICE guidelines for the treatment of Graves disease / overactive thyroid patients. They give you a flow chart so you can see whats meant to have happened and would should happen going forward. Perhaps in the Covid chaos you’ve been missed off someones list!

[humanbean in reply to HashiFedUp]

Clinical Knowledge Summary : cks.nice.org.uk/topics/hype...

NICE Pathways : pathways.nice.org.uk/pathwa...

In the above link click on the appropriate boxes - anything to do with thyrotoxicosis or hyperthyroidism.

You definitely need to get hold of copies of any blood tests that have been done, or better still get access to your medical records and test results online. Speak to the receptionists, not the doctors about this.

[pennyannie]

Hello Salem and welcome to the forum :

You are correct as this is not normal :

Do you have any paperwork showing blood test results you can share with forum members ?

If you go on the Thyroid uk you can read up a bit about hyperactive / overactive thyroid :

How did you get diagnosed and what did you go to the doctor complaining of :

To have had a thyroid storm is serious and you shouldn't just be left without treatment nor an understanding to what happens next :

Depression and anxiety are common symptoms when not optimally medicated :

Where are you in the World ?

[Gertrudepotter]

I am taking Carbimazole and having very bad anxiety, panic attacks and extremely low mood. Iv had one blood test, and been waiting almost 3 months for hospital appointment to see endocrinologist. Not sure if I'meant to be having blood tests as no one told me anything.. Not heard a peep from anyone.

[SlowDragon Administrator in reply to Gertrudepotter]

Ring contact your GP

Get full thyroid and vitamins 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

Low vitamin levels are extremely common, especially if you have Graves’ disease or Hashimoto’s

Ask GP to test vitamin levels

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 .

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 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/thyr...

Graves Disease antibodies test

medichecks.com/products/tsh...

Link about thyroid blood tests

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

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...

NHS and Private

[e-mail]

[Gertrudepotter]

Thank you, I will ask about these tests.