Brilliant I see page still very much a working one.

[Walk4life]

Re my first question, I am not at all sure where I ended up on my first try. Phew

[Lora7again]

You have just started a thread by posting. I have just read your profile page and see you have hypothyroid and are in your 60s like me. What do you want help with?

[Lora7again]

You can put your question on your original post by clicking on More and then Edit. It is at the bottom of the box.

[Lora7again]

I have sent you a message to try to explain what you need to do to post your question.

[PurpleNails Administrator]

You haven’t asked a specific question but from reading your profile history, I can gather what a trying time you had.

You might like to edit you original question / post which you can do this by going to more & edit just underneath your post.

Don’t worry you will soon get to grips with how it works.

The advice I would offer is to firstly obtain your blood test results (with ranges).

You are legally entitled to view them. Request at reception for a print out.

Your doctor may not have completed a full thyroid function test. Graves causes continuous over active thyroid. AutoImmune thyroiditis / Hashimoto causes under active. Your own immune system attacks the thyroid damaging it, this is probably what was viewed on your scan. The damage is permanent so you require replacement thyroxine. It’s more unusual to start thyroxine and then no longer require it. I suspect you do still need replacement hormone but to know for certain you need to know your levels.

For full thyroid function you need TSH, FT4, FT3 antibodies TPO & TG (TSI & TRAB is tested if continuously hyper and Graves is suspected).

Folate, ferritin, B12 and Vitamin D are also often low when hypothyroid so these should be tested too.

Often GPs go by TSH alone. This Thyroid stimulating hormone is produced by the pituitary and tells the thyroid to make new hormone. Medics rely on this but It isn’t a reliable measurement. If this is in range, further testing is not completed by the lab.

The time of your test can also affect the result. Fasting and having a test first thing in morning gives higher TSH than later in the day.

[Walk4life in reply to PurpleNails]

Thank you PurpleNails for this very full reply, it is very helpful. The receptionist did offer me my results in quite a pointed way when they came through, but I felt so deflated by the negative result that I did not take her up. However I will go back now, and I think be clear that I want to be referred to the endocrine clinic. I will never know how I came to recover that first time, enough to climb and row and cycle for years.

[Lora7again in reply to Walk4life]

You are entitled to see all your results because it is the law. I would ask for a copy of your results and then post them on this site so members can advise you. Just to add I can log into Patient Access and read my results so I would ask if your surgery has the same system.

patientaccess.com/

[Walk4life in reply to Lora7again]

Brilliant thank you for this support it's more than I could have hoped for. I will do my best to post them.

[Lora7again]

Please try and put your question on here so members can help you. I actually read this site for a year before I posted anything because I felt so ill that I could not even be bothered to type anything. We are all here waiting for you if you need us.

[Lora7again]

I am just putting this on your thread so other members can see what your profile says.

I am [was] an energetic engaged and active 63 thenn 64 year old woman.

When I was 38 after two years of trying to find out what was wrong with I was finaly diagnosed with an extremely low thyroid -hypothyroidism [which happened concurrently to contracting glandular fever] and was referred to the Endocrine Unit of my local hospital, I was on Thyroxine [which moved me withing two months from almost disabled to walking in the Pyranees] for two years and then was informed I could come off as I no longer had an UA Thyroid. I went on to enjoy a very high level of good health until about 9 months ago. I have had 2 thyroid tests this year, both coming back within normal parameters. My thyroid glands are often very sore and tender. I also went for an ultrasound which showed me as normal 'for someone with hypothyroidism' which I don't quite know, and neither did the GP what to make of. I am very tired and not at all myself, it is a familiar feeling to me from before, I take one long lasting Iboprufen and on paracetemol a day, and that helps me to function quite well. I am very sporty and am not really able to cycle or row just now. My GP is not really up on any of this, although is trying. She said she would talk to the endocrine unit 7 weeks ago to 'see if they thought it would be helpful for them to spaek to me'. She has not got back to me. So in the meantime my problem is, I am a proactive person and can make dietary changes, but when I look at the different sypmtoms for under or over active thyroid conditions, I seem to fit into a few in each, so don't know where to start for safety, well apart from being as sugar free as possible, which I am going to start off with. I also hesitate because when the GP was looking at thr screen I saw for the first time ever that I had been identified all those years ago as also having Graves Disease. Wow sorry to have gone on so long, but sooo good to get this off my chest. Thank you for providing a page or two.

[Walk4life]

My goodness, you are lovely and very helpful. I will try to come to grips with the site, but as you all know, once you have done a bit of work, it feels quite tiring to be online. I see though that this is a very active community. Thank you. I will take the advice of Purple Nails...

[SlowDragon Administrator]

Welcome to the forum

Reading your very helpful profile......glandular fever is common trigger for autoimmune thyroid disease also called Hashimoto’s.

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms and can be misdiagnosed as Graves’ disease if the correct antibodies are not tested

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.

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.

Link re access

healthunlocked.com/thyroidu...

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 see 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

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 .

If/when on levothyroxine ......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)

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Graves Disease antibodies test

medichecks.com/products/tsh...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists........NHS and Private

[e-mail]

[SlowDragon Administrator]

With hypothyroidism/Hashimoto’s it’s EXTREMELY unusual to stop levothyroxine

Usually once on levothyroxine it’s for life

EBV and Hashimoto’s

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...