Poor management of a goitre?: Hi Can anyone... - Thyroid UK

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Poor management of a goitre?

Chamb10 profile image
4 Replies

Hi Can anyone advise me.

30 years ago after a molar pregnancy and then a normal pregnancy I developed a large nodular goitre. Thyroid function was ‘normal’ and I was given a surgical referral. I wasn’t keen to have surgery so was started on Levo 100 mcg and told it would prevent the goitre getting any larger. After a month I was getting horrible palpitations so my GP reduced it to 50 msg daily. Over the next 5 years I had horrible panic attacks treated by Seroxat (SSRI like Prozac) which I have been on for 25 years. Fast forward.......... 6 months ago I started having palpitations again and then frequent bouts of diarrhoea, itchy skin, and hives. I am constantly tired, have achy muscles, joint pains and headaches. I have Type 2 Diabetes so when I had my bloods done I requested TFT’s the diabetic nurse told me my results were low 0.01 and I should see the GP which I did. He has ordered T4’s and antibodies for which I need to make an appointment. Over recent years my goitre seems to have got smaller although I have not had a scan for over ten years. Does anyone have any advise, should I ask for a referral qto Endo? Has anyone ever been treated with levo for a goitre with no symptoms? I am now 61 and am wondering if I have been poorly managed for over 30 years.

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Chamb10
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SlowDragon profile image
SlowDragonAdministrator

Sounds like it, along with thousands of others

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Post your most recent results and ranges if you have them

Essential to know if you have Hashimoto's diagnosed by high thyroid antibodies

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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 be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

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

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Chamb10 profile image
Chamb10 in reply to SlowDragon

Thank you for your advise

Sedum profile image
Sedum

Great you are still looking for answers. They are out there more than ever, but not from medications in my opinion.

30 years ago I too was diagnosed with a goitre at the end of my second pregnancy. My blood results were normal but a goitre has gone on growing to the point I always wear scarves to make it less noticeable. At the time they recommended removal, but a top Homeopath was a friend at the time, and I had started learning about better nutrition, cutting out toxins and holistic health. I never had that op, and now it is too late. neither did I take meds which just blocked symptoms and lead to more symptoms... I changed things gradually. The homeopath pointed out that without my thyroid and needing thyroid meds, it was very unlikely they would be able to balance me properly, and with a history of depression I could land up in a much worse place. The thyroid is so complex and just yanking it out made no sense.

I have used, and still used some excellent supplements. I feel better than I have ever felt even though I still have a swelling. More and more is being found out and recently I started taking a supplement that provides the nutrients to allow my body to make NAD. It has been obvious how much benefit that has given me in just 3 months. Enough for friends to notice. Contact me if you want me to send some info on that and other nutritional supplements I have found invaluable.

Roxzenna profile image
Roxzenna in reply to Sedum

I'm interested in that supplement. Thanks for all your info

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