tamoxifen question: Hi everyone, I wonder if... - Thyroid UK

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tamoxifen question

Misstee2 profile image
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Hi everyone, I wonder if someone can help with my question.

when I was first received my under active thyroid diagnosis, I was given Levothyroxine. I did not do well on it. I put on a lot of weight and developed a lot of symptoms I never had before, I felt really ill. Due to the advice of you lovely people in this group, I learned a lot and did a lot of research too. I am now, with the complete approval of my endocrinologist, and the reluctant acceptance of my Dr, I self medicate with liothyronine. I feel a million times better and have lost weight.

Due to our family history, I have been prescribed preventative Tamoxifen which will put me into chemical menopause. Does anyone know if I should be altering my T3 dose now that I am taking the Tamoxifen? I have only been taking it since the weekend but my stomach is already feeling and looking bloated.

Any help is appreciated. 🙂

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Misstee2 profile image
Misstee2

Please ignore grammar mistakes. I have a new phone which seems a lot more touch sensitive so is adding extra bits I have not typed 😂

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helvellaAdministrator in reply toMisstee2

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Jaydee1507 profile image
Jaydee1507Administrator in reply toMisstee2

Can you post your latest thyroid blood results and also say when and how much T3 you last took before the test?

Are you also supplementing key vitamins and what with?

What are your latest vitamin test results?

I don't have any experience of taking tamoxifen.

Misstee2 profile image
Misstee2 in reply toJaydee1507

Thank you for your response.

I don’t actually have any results to post. I have never asked my Dr to see my results. I’ve always preferred to go by how I feel. I know everyone is different and will be optimal at different points within ranges, so I’ve never wanted to concern myself with Dr’s ranges. If they say they are fine and I actually feel fine, I’ll take that. I do often have to explain to the Dr that my suppressed TSH is down to taking T3, my endocrinologist says I know what I’m talking about (thanks to everyone here) and that I know what I’m doing so to just crack on.

Lottyplum profile image
Lottyplum in reply toMisstee2

What a fabulous Endo!!

Salcombe profile image
Salcombe in reply toMisstee2

I have been on Levothyroxine for 20 years and tamoxifen for 2 years, but just like thyroid patients, those on tamoxifen vary in their response to the different fillers and lactose used in the various makes. For 18 months I had very little side effects, then the pharmacy could not obtain my preferred manufacturer and I felt really ill. It is another situation where you have to monitor your own reactions, and if you do find a particular formula that suits you, persuade your GP to put the name on the prescription. Good Luck

Misstee2 profile image
Misstee2 in reply toSalcombe

Thank you for your reply. I wish you well and hope the tamoxifen works for you. Good advice, thank you. I’m lucky so far that I’ve found a T3 source and it agrees with me.

CatsofCatford profile image
CatsofCatford

I’m afraid feeling bloated and uncomfortable in my body was very much my experience of taking Tamoxifen, this was long before I was diagnosed with under active thyroid.

Misstee2 profile image
Misstee2 in reply toCatsofCatford

Thank you for your reply, I shall keep my eye on the bloating. It’s not too bad at the moment, I hope it doesn’t get worse.

CatsofCatford profile image
CatsofCatford in reply toMisstee2

I had it really bad the whole time I but several friends found that it settled down in time, so there’s hope ☺️. Main thing is, it’s probably the Tamoxifen and not any interaction with the Levo.

Misstee2 profile image
Misstee2 in reply toCatsofCatford

Thanks CatsofCatford, that’s hopeful. 🙂

mistydog profile image
mistydog

Tamoxifen is a horrible drug. I took it for 2 years following breast cancer but I decided quality of life was better than quantity. I'm cancer free 13 years on. I've never heard of it as a preventative although I'm way out of date on these things.

Misstee2 profile image
Misstee2 in reply tomistydog

Thank you for your reply. That’s so good to hear you are cancer free. Myself and my sister have yearly mammograms which started at 40 due to higher rates of cancer within our family. These instances have increased and sadly I lost my mum in March. We have been prescribed preventative Tamoxifen as they have found that it halves your chances of getting it. I’ll have it for 5 years and it will put me into chemical menopause as it affects hormones, therefore I was wondering if it will affect my T3 medication requirements. I currently take 75mgs, when my Dr suggests I cut this back, I try just so I can say I’ve tried but I refuse now as it always leads to me developing cellulitis under my eyes which look like huge blisters. If it’s not my eyes swelling, it’s my feet and ankles. Some part of me swells badly if I take any less so I’m just listening to my body.

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