Hypothyroidism

[John1935]

Hi my name is Denise & I was diagnosed with hyperthyroid 2 years ago. I started treatment then 3 months after it went very under active & now I suffer with hypothyroidism. I suffer a lot with low moods weight gain & very itchy skin. I would love to hear from someone who suffers with the same. Thanks

[SeasideSusie Remembering]

John1935

It sounds as though you could be undermedicated.

Can you post your latest results, including reference ranges (as they vary from lab to lab) for

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

Also, please say how much Levo you are taking and what brand of Levo you are using.

[John1935]

Hi there I do not have results. I was very anemic but I really struggled with the tablets. My does are alternate days. 100mg 75mg

[SeasideSusie Remembering in reply to John1935]

John1935

If you are in the UK then we are legally entitled to copies of our results without question or charge. Just ring the surgery and ask for a print out and say you will pick them up in a couple of days. Make sure you get a print out and don't accept verbal or written results.

We can't make any suggestios without seeing your results, with their reference ranges, I'm afraid.

[John1935 in reply to John1935]

My tsh 1.28 ft4 40.0

[SeasideSusie Remembering in reply to John1935]

Are these results from November 2019? Whilst on Levo?

Do you have the reference ranges that come with those results please. They are very important, not so much for TSH but definitely for FT4 and, when tested, FT3.

By all the ranges we see here on the forum your FT4 is very, very over range (highest top limit of range we normally see is 24), suggesting overmedication of Levothyroxine or hyperthyroidism yet your TSH doesn't suggest this.

[John1935]

I have just found my results in November. My tsh was 1.28 ft4 40.0.

[shaws Administrator in reply to John1935]

Your doctor will probably be content with your TSH but you need an overall test for a Full Thyroid Function. GPs don't usually do an FTF.

This is some advice to get the best results from blood tests:-

1. The earliest blood draw - fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and the test.

2. Levothyroxine should be taken on an empty stomach and take it with one full glass of water and wait an hour before eating.

Always get a print-out of your results, with the ranges for your own records. You can post if you have a query.

A Full Thyroid Function Test is - following advice in No. 1 above:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Doctors don't normally test these and do only TSH and T4.

There are private labs that do home finger pin-prick tests. Make sure you are well-hydrated a couple of days before (if you decide to do this) and follow No.1.

TSH drops throughout the day, so that's why an early blood draw is advised.

GP should also check Vit B12, Vit D, iron, ferritin and folate.

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

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

Post results for comments.

[pennyannie]

Hey there John

What anti thyroid drugs were you put on initially when diagnosed hyperactive ?

How have you become hypothyroid ?

Did you have your thyroid removed through surgery, or were you treated with radioactive iodine ?

I was with a overactive/ hyperactive thyroid and diagnosed with Graves Disease and given RAI treatment - and I now manage lingering Graves systems, thyroid eye disease and hypothyroidism

Can you please give us more details ?

[John1935]

Hi there I was on carbinzole & it was caused by a virus.

[pennyannie in reply to John1935]

Ok then,

I too was on Carbimazole and then this was stopped and I was given a drink of RAI :

What happened when you came off this anti thyroid medication ?

[John1935]

I don’t have the ranges sorry. I found in my diary when I had telephoned for results’

[SlowDragon Administrator]

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.

Important to know exactly what has been tested and equally important what hasn't been tested yet

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 and thyroid antibodies if not been done

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 or all vitamins

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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 antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Come back with new post once you get results including ranges (every lab has different ranges)

FT4 is very unlikely to be 40 (unless this was when you were "over active " before starting on carbimazole)

Very common for Hashimoto's (hypothyroid) to start with initial period of hyperthyroid type symptoms and blood tests. But carbimazole is not right Treatment for Hashimoto's.

Carbimazole should only be prescribed if Graves' disease (hyperthyroid) is confirmed by testing TSI or TRab antibodies

We see many Hashimoto's patients, where GP or endocrinologist has assumed low TSH and high Ft4 is Graves ....but this should always be confirmed by testing TSI or TRab antibodies FIRST

Suggest you get copies of your blood test results and see exactly what was tested

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[bubbatetley]

Hi John, I hope you're ok.. Yes I too am suffering badly with this illness with so many symptoms from head to toe literally. I have had this disease for 9 years now, and the Endocrinologist keeps adjusting my medication in a hope to make me feel better, but still not working for me.. She is saying that I may be intolerant to the Liothyronine T3 and Levothyroxine T4.. I am struggling with all of this mentally and physically. I am now being referred to a Professor of Endo, which I have requested in the hope that he can help me.

These are my symptoms....

Itching all over, causing sores and bleeding

Awful headaches

Loss of hair, especially eyebrows

No appetite

Brain fog

Mood swings

Emotional

Dry skin

Peripheral Neuropathy

Carpal Tunnel, which has needed surgery

Constant loose stools and stomach flatulence [ Embarrassing]

Awful ear pain

Certain foods makes me nausea

Light sensitivity

Painful bloodshot eyes

The symptoms are all horrendous and the GP says, its not related to the Thyroid, even when my ranges are inconsistent.. He is an IDIOT.., they clearly do not understand the complexity of this disease and need to learn more..

You take care

kind regards

Bubba

Merry xmas

🎄🎄🎈🎈