Worn Out

[Raf063]

November 2018 after a visit to the optician, who referred me to specialist in hospital, was diagnosed with graves eye disease, called in to doctors blood test also shows that I had hypothyroidism, autoimmune. for years feeling worn out, and doctors never spotted. 2018 mid tear gp did colesteral check, very high, they just assumed I was on bad diet and never checked. I feel very let down by my GP but glad optician spotted something was wrong. I am 100 a day , absolutely worn out but told I am fit to work, I am a joiner and finding it very hard to work. No family life at all, any guidance ?

[SlowDragon Administrator]

Sadly your story is far from rare

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.

UK GP practices are supposed to offer 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.

Assuming, as a joiner you are male?

100mcg is not a very big dose, especially if doing a physical job all day

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 Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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?

Ask GP to test vitamins and antibodies if not been done

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

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 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...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on how much Levothyroxine use to be prescribed as standard

rcpe.ac.uk/sites/default/fi...

Frequently we are left under medicated because of over reliance on TSH

Essential to always test FT3 and FT4

[Raf063 in reply to SlowDragon]

antibodies present, will get results from GP, request tomorrow, tried statins twice now but they make me feel reel bad, GP refered me to lipids endo still waiting

[SlowDragon Administrator in reply to Raf063]

High cholesterol is linked to being hypothyroid

Still having high cholesterol suggests you are still inadequately treated and still hypothyroid

Statins are NOT recommended by NHS guidelines for anyone with hypothyroidism. They are more likely to cause side effects

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

[Raf063 in reply to SlowDragon]

never been offered access to results

[SlowDragon Administrator in reply to Raf063]

Then first step is to get access, ideally online, to your results

Or if surgery is still in the dark ages and no online access, get printed copies of results and ranges

Come back here with new post

As you have Hashimoto's low vitamin levels are extremely common

Conversion of FT4 to FT3 is much worse if vitamins are low.

Getting Levo dose high enough to bring TSH down to around one and FT4 in top third of range. Getting vitamins optimal

With Hashimoto's we very often have hidden gluten intolerance

Strictly gluten free diet can significantly improve things too

But first step is get copies of tests done do far

Get futher testing on any not done, privately if necessary

[Raf063 in reply to SlowDragon]

will call GP tomorrow and get results

[SlowDragon Administrator in reply to Raf063]

Just deal with receptionist, you are legally entitled to printed copies of your blood test results and ranges

[Raf063 in reply to SlowDragon]

was given access code and details on how to login to view my details and they don't work

[SlowDragon Administrator in reply to Raf063]

That's not uncommon, you will need to try again in morning and then call or go in to the surgery

[Raf063 in reply to SlowDragon]

07 sept 2018

Serum thyroid peroxidase antibody concentration>2000.00iu/ml[<5.61]

Serum TSH level 16.42 mu/L[0.35-4.94]

Serum Free T$ level 10.9 pmol/L[9.0-19.0]

19th sept 2018

TSH 4.99 T4 16.2

06 nov 2018

TSH 5.29 T4 13.3

11 Dec 2018

TSH 6 T4 13.6

07 Feb 2018

TSH 7.58 T4 13.3

06 Mar 2018

TSH 2.04 T4 15.1

[Raf063 in reply to Raf063]

only other test done was blood count

[Raf063 in reply to Raf063]

should be 07 feb 2019 and mar 2019

[Raf063 in reply to SlowDragon]

I have had ophthalmic shingles at least 7 times, could I have miss diagnosed

[SlowDragon Administrator in reply to Raf063]

It says here that being hypothyroid makes us at more risk of getting shingles

sciencedirect.com/science/a...

That's really interesting, as I always suspected my mother was un-diagnosed Hashimoto's. She had ophthalmic shingles 3 times. Pretty certain she also had hidden gluten intolerance, just like vast majority of Hashimoto's patients

[JumpJiving in reply to SlowDragon]

Many thanks for mentioning "100mcg is not a very big dose, especially if doing a physical job all day". I feel slightly dopey as it had never occurred to me that the more physical activity somebody does, the more thyroid hormones are required. That could explain the brick wall I seem to hit mid-late afternoon. I was already planning on upping my NDT dose, although have been waiting until my next blood tests before doing so. The link with physical activity level adds reasoning to why it might be required (as mine has increased dramatically over the last 18 months), and why I feel like I am dragging my legs through treacle or quicksand come the afternoon.

[danym]

what were your symptoms for the thyroid eye disease? isn't that only if you are hyper not hypo?

[Raf063 in reply to danym]

I have both gaves (thyroid eye disease, TeDs) and hashimotos,

[danym in reply to Raf063]

how did they find the graves, what test did they do for that?

[Raf063 in reply to danym]

ophthalmologist , don't know what test, he was looking into a vision problem I had