Thyroidectomy for multinodular goiter

[Lily1970]

I underwent a full thyroidectomy due to several big nodules. I have never been told whether it was due to Hashimoto or Graves… Is there any way to know at all?

[SlowDragon Administrator]

What are your most recent thyroid and vitamin results

Important to test correctly, early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

how much levothyroxine are you taking

Always same brand?

What vitamin supplements

Essential to test vitamin D, folate, B12 and ferritin at least annually

You should also have access to historical blood test results from pre thyroidectomy

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results going back to before thyroidectomy

Allow couple of days and then go and pick up.

[PurpleNails Administrator]

Sometimes nodules occur with neither hashi or Graves autoimmune.

I have a large hyper nodule & no autoimmune & over the years I had them all tested. TPO, TG, TSI & TRab. All negative.

Testing antibodies before surgery is one way to check for it. Once you had had surgery antibodies can increase immediately after for weeks / months then if present tend to reduce.

Nodules can affect thyroid function both can cause hypothyroid or hyper. Not all nodules function & the thyroid usually compensates.

Was the removal due to the size rather than affecting function?

Now you have had a full thyroidectomy you will be hypothyroid & require replacement.

[Lily1970 in reply to PurpleNails]

sorry for very late reply. I had the full thyroidectomy because this goiter had big nodules of 4 cm and this was causing dyspnea and had fits of cough often. Nobody told me about the cause as they did not bother to investigate further other than proceed to surgery. I thought this would sort out my well-being, however I had so many misbalance and had to tetrate often . I am currently exhausted with mast cell activation issues and I suspect Hashi maybe contributing to this…😶‍🌫️

I had my tpos only done 10 years after the op! I found out i had antibodies: 28 (max. 60)

I am really worried. The gp said it was in range… feeling really lost! Any advice please?

[PurpleNails Administrator in reply to Lily1970]

After so long since surgery you wouldn’t expect positive antibodies. Antibodies are the immune system clearing up substances from thyroid that wouldn’t normally be circulating. As there’s no thyroid there shouldn’t be any thyroid substances or antibodies.

There no way to know if your thyroid nodules were connected to autoimmune & looking forward it’s not going to affect treatment of hypothyroidism in future.

You have no thyroid you are therefore Hypothyroid and need adequate replacement.

In your previous post you were not optimally replaced, have things improved? You may find symptoms are interrelated. Optimal thyroid & nutrients may improve all symptoms.

[Lily1970 in reply to PurpleNails]

Thanks very much.

My TSH is 0.61 (February)The other results will be sent to me shortly. I have had detailed thyroid blood tests ordered by my cardiologist so will find out what are my T3, etc…My B12, folate and Vitamin D are within range but I keep taking a supplement to get those optimal

[pennyannie]

Hello Lily :

As I understand things with Hashimoto's this Auto Immune disease tends to attack the thyroid and possibly the eyes and ' dies ' with the thyroid - and your TPO antibody reading is low and under the range and a negative for Hashimoto's.

With Graves this AI disease tends to only get diagnosed when the immune system attacks the thyroid and/or eyes - and said to be ' life threatening ' if not medicated so the medication is with an Anti Thyroid drug while we wait for the immune system to calm down again and the thyroid reset itself without drugs.

If your Graves can't be controlled by an AT drug, a thyroidectomy or RAI abalation is suggested to remove the target of the attack - the thyroid - as there is no cure for this poorly understood AI disease - with common triggers tending to be stress and anxiety.

Once hypothyroid Graves can wax and wane and you may possibly be seen as with a chronic long term AI health issue as well as being primary hypothyroid - or as many seem to believe - all better and just with hypothyroidism, which is easily treated !!!

Obviously in your situation you were physically compromised and guessing there was no option but to have surgery and whatever the cause - once hypothyroid the treatment is the same irrespective of diagnosis.

The thyroid is a major gland and responsible for full body synchronisation from your physical ability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism and for many living without a thyroid is no walk in the park.

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings / ranges and not a TSH - as ' without a thyroid ' and especially with Graves - we can have antibodies still circulating and ' sitting on ' TSH receptor sites and ' looking like we are over medicated ' and giving false low TSH readings - but since we haven't a thyroid there can't be over production of any thyroid hormones - but we can be wrongly medicated by TSH and why we must reading T3 and T4 readings.

We generally feel best when on T4 only when the T4 is up in the top quadrant of its range with the T3 tracking slightly behind at around 60/70% through its range.

T4 - Levothyroxine is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs all your bodily functions and no thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal levels - so you also need to be running ferritin, folate, B12 and vitamin D and we can advise where optimal is as some NHS ranges are too wide to even be sensible.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.

Some people can get by on T4 monotherapy :

Others find T4 doesn't seem to work as well as it once did and that by adding in a little T3 - likely at a similar dose to that which their thyroid once supported them with , they are able restore T3/T4 hormonal balance and they feel better.

Some can't tolerate T4 at all and need to take T3 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the human gland and derived from pig thyroids, dried and ground down into tablets, referred to as grains.

Hope that helps a bit with your understanding of where you are in all this - and the first step back to better health is to arrange a full thyroid panel to include your TSH, Free T3 , Free T4, inflammation, antibodies and ferritin, folate, B12 and vitamin D and then post the results and ranges back up in a new post and you will receive considered opinion and your next best steps back to better thyroid health.

Thyroid UK the charity who supports this website - thyroiduk.org - have a list of Private companies who can run the blood tests for you if your doctor is not able to - and there are special instructions as to how you should take and arrange blood tests if interested.

The most well rounded of all I read for Graves Disease is that of Elaine Moore's books and now her website - elaine-moore.com

[Lily1970 in reply to pennyannie]

Thanks ever so much for this very detailed and extremely informative answer. Kindly appreciated!