Non-Toxic Multinodular goiter?: Hi all, In 201... - Thyroid UK

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Non-Toxic Multinodular goiter?

Hi all,

In 2016 my GP noticed a goiter and tested my TSH which was 2.2 mu/L.About a year ago I had an ultrasound on my goiter and it measured 7cm on the right and 6cm on the left side. I was advised that I have a non toxic multinodular goiter but it did not require further treatment. I queried this with my GP who ran another TSH blood test which came back as 1.79 mu/L

I have Pernicious Anaemia and don't feel like the Vitamin B12 injections I get every 6 weeks are helping with tiredness, headache, brain fog, grumpiness etc. I saw the GP this week and asked if they could run other thyroid checks just to be sure there isn't an issue but they refused as my thyroid tests were 'within range' . All other FBC tests, ferritin, folate etc have come back normal.

Does anyone feel that I need to continue to check for thyroid related issues?

Thanks

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Just testing TSH is completely inadequate

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 Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Ask GP to test vitamins and antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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 are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

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This sounds very much like what I had some years ago. Eventually my symptoms got so bad that I could hardly function and after a substantial delay I had a total thyroidectomy which gave me an immediate and dramatic improvement in health. So much so that from hardly being able to drag one foot in front of the other going into hospital, I was jumping with joy and full of energy a few days later on my way out.

BUT, BUT, BUT!!! - I had an enormous and long-lasting price to pay which the doctors at my surgery, the hospital doctors and the radiologists (when I subsequently had RAI) FAILED to tell me despite the fact that they are INSTRUCTED to do so. I was told that I just had to take a couple of tablets a day to regain the health that I would lose by having no thyroid.

WRONG, WRONG, WRONG!!!! The good feelings did not last and I slowly deteriorated on levo alone and could get no help whatsoever from any doctor or consultant. You can only save your health by taking NDT in this scenario and, the longer you leave it till you start taking NDT, the worse you will feel and the less of your health you will recover.

So, what is the answer for you?

The way you feel may bear no relationship to any blood test results whether you currently take levothyroxine or not.

The products you are now taking will probably not be needed if you have a TT.

You will not get a TT until your very life depends upon the operation as it is quite dangerous, the problem being that the longer you leave it the worse it gets which makes the operation even more dangerous. The goitre can spread everywhere, cling to existing scar tissue, work its way downwards towards your lungs and slowly constrict you windpipe making it increasingly difficult to breathe.

It may be possible to take an appropriate drug, but I know nothing about this option.

Definitely not recommended to have RAI after a TT.

You need to talk this over with your GP on a regular basis, get a referral to an appropriate hospital consultant and be sure to tell them that they are obliged to tell you all the relevant facts even if you do not ask them specific questions.

Be under no doubt that these symptoms indicate a serious and possibly life-changing scenario for which you must have regular and thorough tests by those who have the skills to help you. Having simple blood tests for any hormone and doing nothing else is not enough.

I am sorry I have to be so blunt, but I have suffered for so long now from inappropriate and negligent treatment from everybody EXCEPT the surgeons, that I feel very bitter about the current treatment on offer for thyroid ailments.

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Dear Lizzie RB12,

I will join the chorus and urge you to see an endocrinologist as soon as possible. You have a very large goiter and it needs to be attended to - I just had a TT 4 weeks ago because of Graves’ disease and a toxic multinodular goiter. Mine was the same size as yours. It had grown double to reach that size within 1 month . And I had normal blood readings (I was on Tapazole). When it was removed, it was the size of a grapefruit on one side and and an orange on the other. The scans never show the exact size - and the volume of the thyroid cannot really be seen on scans. Mine ended being significantly larger than could be seen in either nuclear scans or ultrasounds.

The thyroid was pressing on my vocal cords (which did not show up in the CAT scan they ran). It was also pressing on the nerves in my neck, which I attributed to a spinal problem and spent thousands in physical therapy to fix, which it did not, of course. The neck pain disappeared when the thyroid was removed.

I do not want to scare you - but it is not something to be ignored as your doctor suggests. I am not saying you need surgery - I am not a doctor and would not presume to provide this kind of advice to you. I am simply sharing my own experience, and you need additional medical advice.

I live in Canada and it seems that when I read the UK postings here you have difficulties getting to see endos and getting detailed blood work. I was sorry to read about Panda 321’s experience after her TT. Where I live, we get frequent blood work and physicians follow you much more closely after TT, so there is more frequent change in medication to match your symptoms.

I am still in the process of getting adjusted and there is no question that not having a thyroid is difficult, whether by surgery or RAI. In my case, I had no choice. I am taking the advice of many of the helpful people on this forum who have answered my posts.

Should you need surgery, I would say that if you have an experienced surgeon who specializes in thyroid, they should have a relatively low rate of error. Given the size of your goiter, if you should need surgery, seek out a surgeon who does mostly thyroids if you can find one. They should have done at least 1000 thyroid surgeries. Ask them what their audited error rate is. A good surgeon will volunteer this information. My own surgeon has done over 3000 with an audited error rate of .3% on that number.

I really hope you are able to get help and I am sending slow dragon and Panda 321 positive thoughts. I wish you all the best and send you good wishes in getting the help you need.

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Thank you everyone. I've managed to get a blood test from which includes TFT. Will that check everything I need to be looking for? They're also checking again. Ferritin, FBC, Glucose

It says for these tests the phlebotomist will need Fl. Oxololate, Serum SST, and EDTA

1 like
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Dear LizzieRB12,

Just to clarify, my typing skills obviously not well at work. My doctor’s error rate was 0.3% not 3%. Big difference!! Good luck with everything.

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