Thyroid UK
90,462 members104,835 posts

LOSING HOPE

good day. my name is matt. 2 years ago I was diagnosed with graves disease. after several months of insanity I went to have my thyroid blasted! only to learn right before surgery that my thyroid was now normal. since then my thyroid has gone the opposite way to hypo.. I have gained over 40 pounds and honestly every joint in my body feels terrible pain. is this common? my hands especially and my hips. I am 47 male. generally very active but now cannot even bend or kneel. im curious what others do. my doctor will not prescribe anything. I have bought dhea and pregnelone alone with THIROYD WHICH APPEARS AFKE TO ME....HELP

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Welcome to our forum and members will respond when they read your post.

It is good you have asked questions because the majority on this forum have found that few doctors nowadays are knowledgeable about dysfunctions of the thyroid gland. They appear to only look at the TSH level and maybe T4 but do not test for our other thyroid hormones which are Free T4 and Free T3 and thyroid antibodies. If antibodies are present, despite your blood results being in range, you should still be diagnosed and prescribed as it would then be an Autoimmune Thyroid Disease, called hashimoto's.

You must have had a flare-up initially that caused the doctors to consider removing your thyroid gland.

I will give you a link of symptoms and you can tick off the ones you have in order to give to GP when you make an appointment. However, wait until you get others' comments.

In the UK doctors have been told not to diagnose us until the TSH reaches 10, whilst in other countries we would be diagnosed if TSH goes above 3. A huge difference.

All blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and if you were taking thyroid hormones (usually levothyroxine) you'd allow a gap of 24 hours between last dose and test and take afterwards.

You can say to GP you've taken advice from the NHS Choices for help/advice about dysfunctions of the thyroid glandm Healthunlocked, Thyroiduk.org.uk and have been recommended to have a Full Thyroid Function Test. This would be:-

TSH, T4, T3, TFree T4, Free T3 and thyroid antibodies. (if Doctor or lab wont do all of these you can get a private test which will do those the doctor hasn't).

He/she should definitel y test B12, Vit D, iron, ferritin and folate as deficiencies in these important vits/minerals can also cause symptoms.

Always get a print-out of your results, with the ranges. Ranges are important as labs differ and it makes it easierfor members to comment upon them.

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

More females than males seem to get hypo or hyper but we do have men members as well.

It is very frustrating when we have clear symptoms but are told there's nothing wrong with us and they put it down to anxiety or something like that. We would be anxious if hypo and undiagnosed.

Put your results on a Post.

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Welcome to the forum, Mpw75dt.

Did the thyroid ablatement go ahead or was it cancelled?

What are your recent thyroid results and ranges?

DHEA and pregnenolone are not thyroid treatments. Why have you bought them?

Reply

First thing is, do you have any actual blood test results? if not will need to get hold of copies

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. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018 due to EU ruling)

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

Essential to test thyroid antibodies, FT3 and FT4 plus vitamins

Private tests are available. 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 and don't take Levo in the 24 hours prior to test, and T3 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).

About 90% of all hypothyroidism in Uk is due to Hashimoto's (can be mistaken for Graves)

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...

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What results do you have because after Graves most people simply cannot function on so called "normal " and need levels of T4 and T3 to be very high

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