Can I please ask some advice?

[hantastic]

Hello all,

I wonder if I could please ask some advice. I'll try and summarize what's been going on.

For a few years I've had worsening symptoms and swing between hypo / hyper symptoms. Earlier this year I had my cortisol tested and it came back as 170 nmol/L [166.0 - 507.0] so a short synacthen test was ordered. As my cortisol rose to 540 nmol/L [166.0 - 507.0] they said there was no issue with my adrenal glands.

I since went to see a private endocrinologist for a second opinion. He asked my GP to arrange TSH, Free T4 and Thyroid Peroxidase Antibodies. Along with an ultrasound as I have a visible goitre.

My blood came back as follows:

Serum TSH level 1.02 mIU/L [0.35 - 4.5]

Serum free T4 level 17.6 pmol/L [11.0 - 24.0]

Serum thyroid peroxidase antibody concentration: Negative

At the ultrasound they explained that I had a diffusely enlarged goitre with a coarse echotexture, and that there were a couple of very small nodules. She said that it was very enlarged and that the coarse texture looked like it was caused by thyroiditis. At this point they hadn't had the antibodies result.

Does anybody have a similar experience? I am very symptomatic and it's been far from a pleasant journey.

Any advice would be very gratefully received.

[SlowDragon Administrator]

There are two sorts of thyroid antibodies- TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) BOTH need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

As you have discovered NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this, and they have struggled to get diagnosed.

Also....If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHSu) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.,

[hantastic in reply to SlowDragon]

I can't thank you enough for such a brilliant response to my post. I should have said above that I've ordered the Thyroid plus ten and a nurse is coming on Wednesday morning to take my blood at home.

I think that the only reason I've not been completely turned away is because of this goitre. Otherwise they would just keep telling me I am anxious or depressed or both. This is what I've been told for many years, I'm sure like many of you!

I have a copy of all of those vitamin tests I think so I'll dig out the ranges and share below. Thanks again a million. It's good to know you aren't alone.

[hantastic in reply to SlowDragon]

Here are the results of the tests you mentioned...

Serum vitamin B12 level 1020 ng/L [180.0 - 2000.0]

Serum folate level 9.78 ug/L [4.6 - 18.7]

Serum ferritin level 111 ug/L [13.0 - 150.0]

I know that my vitamin D has been low in the past but I supplement for this.

[hantastic in reply to SlowDragon]

You can see that on paper I'm as fit as a fiddle

[Angel_of_the_North]

I though that a massive rise in short synacthen test indicated that there was a pituitary problem, but I could be wrong. Adrenals are fine, but nothing is asking them to perform.

[hantastic in reply to Angel_of_the_North]

I mentioned that too but they said it was all ok because my TSH was normal and I have regular periods.

[Angel_of_the_North in reply to hantastic]

I have a pituitary problem and my TSH is normal (between 0.5 and 1). If I didn't have a pituitary problem my TSH would probably be high as I am hypo. What rubbish, you'd expect to be referred for an Insulin Stress test (really nasty), and CT or MRI scan.

[hantastic in reply to Angel_of_the_North]

They are now saying that I don't need to go back for another year for my next blood test. Not sure I can stand another year like this last one. Did you just get lucky with a good endo or did something come up on your blood tests?

[Angel_of_the_North in reply to hantastic]

No. After being told there was a problem but it wasn't bad enough to treat, I gave up and started self-medicating for thyroid and adrenals. Sex hormones I get privately.

[hantastic in reply to Angel_of_the_North]

What a world we live in eh! And they wonder why we are stressed/depressed/frustrated.