When will they start treatment?

[Blueeyes57]

Hi. I have history of Lupus, diabetes and thyroiditis together with multi nodular goitre . Although my TSH has ranged between 1.8 and 3.2 previously - with hospital saying possibly sub clinical hypo but not suitable for treatment currently, however it has now gone to 4.6 and I have been very symptomatic *due back at hospital in 2 weeks. If hospital still refuse me medication should I get second opinion as I feel with all my other complex medical problems my life is running away with me, and I want to get back to my baseline and be listened to! I live in north Mchr and currently am under Salford Royal. I would be grateful for any advice. Thanks.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12

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...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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

As you have lupus another autoimmune disease it's most likely

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/tuk/about_the...

Are you on strictly gluten free diet or considered it?

Plenty of info on the net suggests, like Hashimoto's, that gluten can be underlying issue

amymyersmd.com/2018/04/3-re...

ard.bmj.com/content/63/11/1501

lupuscolorado.org/to-gluten...

livestrong.com/article/4418...

[Blueeyes57 in reply to SlowDragon]

Thanks for your reply. I will certainly read all those links. I already am being treated for B12 with 2 monthly injections which I had to fight for, Vit D supplements from gp and am on Ferritin for low iron. I will certainly ask Endo to run those tests - have to be careful how I ask they have such fragile egos! I haven't considered gluten, but as I am having such a lot of gastro issues, and the Gastroenterologist cant really come up with good reason yet tho had loads of tests, I will certainly consider doing it as a trial for my symptoms. Again thanks.

[SlowDragon Administrator in reply to Blueeyes57]

Most patients do not have coeliac, but are gluten intolerant. This can be as serious as coeliac. It's just there's no easy test. Many many of us have found that out the hard way

It does have to be absolutely strictly gluten free, as if coeliac

[Marz in reply to Blueeyes57]

What was your VitD result ? & how much are you taking ? GP's often prescribe too little to make a difference. Are you taking a GOOD B Complex to keep all the B's in balance ? Sounds as if you could have Hashimotos so I would do the Private Testing and not risk dealing with delicate egos. 😊 Taking VitC should help iron absorption. Are you being tested regularly for iron - what is your level ?

Being gluten free will help to heal your gut so you can absorb nutrients better. Gluten causes inflammation which can then spread around the body - including the brain !

Follow the advice given and you will soon feel better ...

[shaws Administrator]

This is from TUK and I think you'll be quite surprised when you read it:-

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

In other countries we are diagnosed if TSH goes above 3. In UK we used to be diagnosed upon clinical symptoms alone. Now it is on the TSH alone and it has to reach 10 before we're diagnosed, despite disabling clinical symptoms.

Many of our members self-source thyroid hormones and treat themselves as they have so many symptoms which aren't being treated by the NHS. It is a stupid rule that 10 is the 'gold standard' for diagnosis.

For that reason we also advise to get the earliest possible blood test, fasting (you can drink water) and if you were taking thyroid hormone replacements you'd allow a 24 hour gap between last dose and test and take it afterwards.

Many of our members self-source thyroid hormones, levothyroxine being the commonest prescription initially and 50mcg is a starting dose with blood test and increment of 25mcg every six weeks until TSH is 1 or lower with Free T4 and Free T3 towards the upper part of the range. The latter two tests are rarely taken.

Many members are on this forum because they remain undiagnosed or remain unwell due to the guidelines many buy their own thyroid hormones and self-treat.

Blood tests for thyroid hormones have to be at the very earliest possible, fasting, and if you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards. This helps the TSH to be at its highest as that is all the doctors take notice of and we don't get the increases we need to bring about good health.

You can get private ones from one of our two labs if you wish and I'll give a link just in case. You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. NHS wont do all of these.

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

Medichecks and Blue Horizon are the private labs and make sure you are well hydrated a couple of days before the home pin-prick tests and arms/hands are warm for blood draw.

GP should test B12, Vit D iron, ferritin and folate. Everything has to be optimal, not just somewhere 'in range' as most doctors think.

Always get a print-out of your results with the ranges. We are entitled by law and some surgeries charge a nominal sum for paper/ink.