Waiting for total thyroidectomy, with some unanswered questions… does anyone have a similar experience?

[Sewsewer]

Hello,

I am seven months on from first noticing a lump on my thyroid, after several years of unexplained fatigue.

Blood tests showed that I have I have raised antibodies: Anti-Thyroidperoxidase abs 180 (range less than 34) and Anti-Thyroglubulin abs 509 (range less than 115)

The other results were normal: TSH 1.11 (range 0.27-4.20), T4 Total 98.8 (range 66-181), Free T4 17.5 (range 12-22) and Free T3 4.74 (range 3.1-6.8).

I have two suspicious lumps on my thyroid which, after an ultrasound scan and an fna, cannot be definitely declared either benign or malignant.

There was a very alarming period where they suspected a rare glandular cancer which was thankfully ultimately ruled out by a blood test. I only mention this because I was so full of relief that this dangerous cancer was ruled out, that when the consultant said that their tentative recommendation was that I have my whole thyroid removed in order to be able to fully determine whether or not the lumps are malignant, I was kind of blasé with relief and said yes of course, that sounds like a good idea. (There is a lump on each side, hence taking the whole thing out.)

However he was at pains to make clear that it is an operation with risks and with lifelong implications, and said that they estimate the risk of the lumps being malignant are 20%, which is obviously quite low.

I was also told that I could opt for ongoing monitoring to see whether a malignancy declares itself more clearly over time. However he said that the consensus at the multidisciplinary meeting had been that it would be best to operate.

I last saw him in early November. He said that I wouldn’t go on the urgent list because the cancer isn’t confirmed and that there are other cancer patients in more urgent need - he said I would go on the urgent list after three months if I hadn’t been operated on in that time, so I expect that to happen in early February. Does that (under normal circumstances, which I know these aren’t) mean that I should be operated on by early March?

I have many other questions which my GP doesn’t seem to have time to discuss. My biggest is where do the high antibodies fit in?

Is it possible that I’ve had autoimmune thyroid disease throughout the several years of unexplained fatigue, and that the nodules are now counteracting the effects of that by producing extra T3/T4, making my levels look normal?

Or am I overthinking it?

My GP is suggesting that she send me to see an Endo after I’ve had the surgery. I guess she thinks there is no point investigating the antibodies at this point if I’m not going to have a thyroid soon. So will the Endo be in charge of getting my hormone replacement work as well as possible?

Also, my mum is encouraging me to look more closely at the wisdom of having the operation at this stage. I can see where she’s coming from, although I tend to think that if there is a risk of cancer then it’s better to act than not act.

Many thanks in advance if any of you wise people have experience or thoughts about this.

[shaws Administrator]

The majority on this forum seem to find that few doctors are 'experts' regarding thyroid hormones.

We can have clinical symptoms appearing before we're diagnosed and I, eventually, had to diagnose myself and by that time the TSH was 100 but GP phoned to tell me that" your 'blood tests are fine and you have no problems.

Thankfully I found Thyroiduk set up by another who had problems getting diagnosed.

thyroiduk.org/about-thyroid...

Lyn Mynott

If there are thyroid anitbodies in our blood, that indicates the common Thyroid Disease and it is called Hashimoto's but treatment is the same as hypothyroid. Going gluten-free can help reduced the antibodies.

I had to diagnose myself and you can click on my name to read my journey to be diagnosed. I am thankful I am now well and symptom-free but it took a while and it is due to finding Thyroiduk.org.

[jgelliss in reply to shaws]

I couldn't agree with you more. Thank You Shaws.

[SlowDragon Administrator]

Previous post shows you are already hypothyroid

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

healthunlocked.com/thyroidu...

What time of day was test done

Cortisol result is very low if test was early morning

Hidden may comment….

All vitamins low as direct result of being hypothyroid

Presumably you have been working on improving these since this post

Have you had coeliac blood test done yet

Are you on strictly gluten free diet

Suggest you retest again in another month

[Hidden]

Looking at your previous post your cortisol level is low if the test was done between 8-9am, at that time of day it should be between 350-550nmol/Ls. Can you tell me what time it was done?

[Sewsewer in reply to Hidden]

Hello PaulineS, thank you for replying. My test was done at 10.30, so not very early.

[Hidden in reply to Sewsewer]

Although it was done at 10.30am at 180nmol/Ls it is still low. If you look at this chart it shows what normal cortisol levels should be. The reference range they give covers a far greater period so most doctors don't understand that cortisol is at it's highest level first thing in the morning & then drops through the day. It would be worth getting it checked again around 9am.

normal cortisol levels

[Sewsewer in reply to Hidden]

Thank you, I will do that.

[Sewsewer]

Thank you MorecombeBay for your reply. I appreciate you sharing your experience and hope that you are finding your aftercare relatively straightforward to deal with. Best wishes.