Consistent TSH results

[MrsB1977]

I have previously posted here about my goitre and my symptoms which remain undiagnosed. I had the most awful week last week - out of nowhere and having had a really positive week - I became shaky, heart kept racing, tired, was waking up at 3am which severe stomach cramps and diarrhoea, had the most awful metallic taste in my mouth and finally my goitre swelled up again. Out of desperation I rang Docs who suggested blood test.Yesterday, I saw Doc who again insisted my results are normal. Over the 8 years I have had this goitre, my TSH consistently comes back as 0.5 (it’s been tested 3 times) She refused to test T4 and T4 as TSH normal. I have succumbed and left with a prescription of anti anxiety meds and she told me to stay off Google! Now before I accept that this is indeed all in my head and start popping pills - is there anybody out there who has experienced similar? My goitre does seem to swell up and down - some days it is very large and swollen looking and on others it just looks a bit lumpy - Doc seemed to think that this wasn’t possible but my family can see the visible changes and I can certainly feel them and can a consistent TSH of 0.5 be hiding something or am I barking up the wrong tree ? I’m about to order a private thyroid test but so worried that I’m wasting everybody’s time and to be honest I’m just exhausted by it all. If there is someone out there who has experienced similar, it would give me the motivation to start digging.

[PurpleNails Administrator]

Your last post said you were waiting for a scan, was that scan done?

[MrsB1977 in reply to PurpleNails]

Yes - all they said was nodules have not significantly grown and I was sent on my merry way with the endo adding a lovely kick in the teeth with her sign off letter saying “ I hope you continue to feel well!”

[socratesanne in reply to MrsB1977]

This must be frustrating and worrisome for you. I know you are having symptoms. Has the doctor ever given you an explanation for the goiter and the other symptoms. Maybe I am naive but have been doing massive amounts of research on the thyroid and parathyroid. Still have questions. It seems extremely synchronistic that I keep meeting many folks in my area who have these issues. It seems beyond coincidental. Just hoping for answers as I note is a constant on this site. For that I am so grateful.

[PurpleNails Administrator in reply to MrsB1977]

I’d agree with others, you need a full thyroid function, I’m sorry you are forced to organise this privately.

Did you get a copy of the scan report? It should give details of specialist findings including the health and size of your thyroid and the appearance of any significant nodules.

I think you need to persist with the doctor and stress that you feel this is compressing your neck also mention if it’s affecting your breathing, swallowing or voice.

I have a left sided swelling from a 5cm solitary nodule. I’d had a previous ultrasound and fine need aspiration but doctor didn’t pick up I had hyper levels.

As swallowing issues began I had an ENT referral, during the appointment I had a naso endoscope. I was told “it’s not too squashed in there”. So although you have had a scan I think there’s a strong argument for the need for an ENT check.

[SlowDragon Administrator]

As per previous post

healthunlocked.com/thyroidu...

You need FULL thyroid and vitamin testing

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

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 .

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...

Come back with new post once you get results

[helvella Administrator Thyroid UK]

Here are a couple of links to extensive articles on goitres/nodules.

I am not impressed by everything they say - especially the concentration on using radio-active iodine as treatment. But they are pretty comprehensive.

As always, it can be a tough read, emotionally as well as in every other way.

Thyroid Nodules

Furio Pacini, MD

Professor of Medicine, University of Siena, Siena, Italy

Leslie J. De Groot, MD

Research Professor, University of Rhode Island, Providence, RI

Updated: July 1, 2016

ncbi.nlm.nih.gov/books/NBK2...

endotext.org/chapter/thyroi...

Multinodular Goiter

Geraldo Medeiros-Neto, MD

Senior Professor of Endocrinology, University of São Paulo Medical School, Brazil

Updated: September 26, 2016

ncbi.nlm.nih.gov/books/NBK2...

endotext.org/chapter/multin...

[JAmanda]

The tsh tests simply doesn't give the full picture. Please get a full set of tests, as suggested, then post the results herewithranges. Get tsh, t4,T3 and thyroid antibodies. Your doctor is neglecting you.

[Oatcake]

Hi, I had a similar experience in the late nineties. I was told bloods were ok but the two results I did get showed in range but low TSH and low FT4. I saw endo annually who observed it grow on one side for 7 years until it gave me problems with swallowing and breathing in bed at night. I was then referred to surgeon for a thyroidectomy. It was only post op that they told me the other side had grown in the way and that was giving the problems. No scans in those days! I am fortunate that on the whole I have had no post op problems and have been well on thyroxine.

I presume they have checked for cancer? I wasn't checked until just before the op, but fortunately it was negative.

I don't have any advice, just sympathy having been there.

PS just read your previous post. If it is pressing on your windpipe, I would really emphasise this - that's what triggered further investigation for me. Can you ask for referral to a different endo?

[MrsB1977]

Thanks everyone. Just ordered full thyroid test from Thriva (discount code didn’t work though!). Once I have results, i will post again. I have never done a finger prick test and I’m a bit of a big baby when it comes to blood and needles - so worried I’m going to mess it up - is it pretty straightforward?

[PurpleNails Administrator in reply to MrsB1977]

healthunlocked.com/thyroidu...

Here’s a helpful post with tips & a video on how to get the best out of a finger prick sample.

[Mazzer]

I had a goitre which would swell when I felt particularly unwell. You are not mad. I knew I was unwell but was dismissed as my blood results were “in normal range” don’t ignore your instincts. Get your bloods done privately and press for help. I was not taken seriously until my goitre began to descend into my chest cavity. It had to be removed at this point and earlier intervention may have avoided this outcome.

[thyroidthicci]

thyroidthicci to the rescue!!!!