Advice on my results

[Bfarliegh]

Hi - I am a newbie to all this. I have been diagnosed with a macroadenoma following a couple of years of feeling dreadful- worsening over the past 6 months with exhaustion, brain fog, almost constant dizziness, low blood pressure, severe anxiety and palpatations. Last year I was diagnosed with a premature menopause after my estrogen and fsh levels were tested (I was 40),

I had an MRI as I have previously had a very large acoustic neuroma and was worried it had regrown (due to all the symptoms) which is hadn't, but they found the macroadenoma instead. I was referred to an endo privately , and have been undergoing some tests for my HPA. My endo thinks I am fine.

I have also got a goiter in the past 8 weeks which is so annoying and I constantly want to swallow

TSH 2.54 (0.35-4.0)

Free t4 23.5pmo/l (12-22)

Baseline 9am cortisol 257 (170-600) * but I am taking HRT for the low estrogen

VIT D low and I was told to take 1000mcg supplement but wasn't told the level

I haven't been given my other results -other than told they were all normal.

My problem is that I still feel terrible. I am barely able to work even.

Does anyone have any suggestions? What is the protocol for demanding I get a copy of all my results?

Many thanks

[Hidden]

I take it you are not on thyroid hormone replacement?

It's a bit strange that your TSH is borderline high (even if within the reference ranges, it should ideally be closer to 1) with slightly above-range free T4 levels...normally, when your thyroid hormone levels are elevated, your TSH is suppressed.

What do doctors suspect? I mean, why have they ordered thyroid tests?

[Bfarliegh in reply to Hidden]

many thanks for replying. They did the thyroid test as they are standard I think when you have a pituitary tumour. They automatically check tsh and free t4. However , I agree that the results are weird......... but he says its ok, even given they way I feel. I imagine that a TSH secreting tumour the free t4 level would be higher than I have?

[Hidden in reply to Bfarliegh]

I'm really sorry, I don't feel qualified to answer that but I am sure other members are.

The symptoms you describe seem to indicate both hypo- and hyperthyroidism, and some symptoms are seen in both conditions. Low blood pressure, for instance, is common in hyperthyroidism, and hypertension in hypothyroidism. Fatigue and dizziness can be seen in both conditions, so it's a bit of a mystery, at least to me...if I understand you correctly, your endo thinks there is nothing wrong with your thyroid, it's "collateral damage" more than anything and does not require treatment?

[SlowDragon Administrator]

Assuming you are in the UK, you are legally entitled to printed copies of your blood test results

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 25th 2018)

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. 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. This gives highest TSH, 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. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

[Bfarliegh]

Many thanks. My endo is private and so my gp hasn’t got these results- the endo does. I tried ringing the hospital where I had them done and they told me only the endo can give me the test results. Are they also bound by the same requirement that I am legally entitled to these results? - I am in the uk.

I am assuming also the endo thinks the TSH issue is collateral damage as you say, but it is very difficult to get any answers or action or explanation from him.... I am still waiting for a diagnosis of exactly what sort of tumour it is!

Many thanks - if anyone knows more about tsh free t4 impacted by pituitary rumours it would be great

Thanks v much for any help

[Hidden]

Ring the Endo's private secretary she should be able to get you the results. Your 9 am cortisol isn't as high as it could be, it should be higher at 9am, nearer 400-500. Is your Endo experienced with pituitary/adrenal issues? Not many Endo's are, they are more used to dealing with diabetes or thyroid issues. If you are on Facebook the go onto the Addison's info & support group to ask the question there.