My story

[Goneinthewind]

I was originally diagnosed in 2011 during routine blood work with an abnormal TSH level. Doctor put me on Levothyroxine. After some time I found a Naturopath doctor who put me on a compounded T3/T4 medication which seemed to help. After time and loosing way too much hair amongst other symptoms, my dose was elevated.

I'm still on my journey figuring all this crap out but decided to tell a bit of my story here because I recently found a book written in 2022 by Dr. Anthony Bianco, MD called Rethinking Hypothyroidism. Dr. Bianco is a physician and scientist and former head of the American Thyroid Association. I highly recommend the book and wanted to share.

My grandmother had hypothyroidism resulting in a large goiter on her neck. My heart goes out to her wondering how it was dealing with this medical condition back in the 1950's on until her death. My daughter recently underwent a thyroidectomy due to thyroid cancer. Doctors still don't understand the thyroid and many are set in the ways of prehistoric research.

Thanks for listening.

[Rapunzel]

Hi Goneinthewind

I've just bought this. Anthony Bianco appears very well reviewed by his peers. Always good to have new grist to the mill.

I hope that your daughter's surgical intervention will result in the prescription of T4 and T3 from her PCP - at least you can share your wisdom if she's left suffering on Synthroid.

Best wishes for her recovery.

[Goneinthewind in reply to Rapunzel]

Thanks for your nice response Rapunzel, My daughter goes into quarantine this week to start a radioactive iodine treatment to kill off any thyroid left. I will tell her of your best wishes. I for one thank you.

I think I heard that one in the UK one cannot get a prescription for T3 meds. I hope that is not true. I think I would have simply perished without them. Many doctors, here in the US, still do not understand and will not prescribe T3 meds, but at least it is legal and some do.

Best wishes to you also, and I love your handle, Rapunzel.

[Sparklingsunshine in reply to Goneinthewind]

We can get T3 on the NHS, but it has to be approved by an NHS Endo and cost is a big issue here. Some areas are more pro T3 than others. Its something of a postcode or zip code lottery. Its why we have members sourcing and buying their own meds or going to a private doctor to prescribe.

[Rapunzel in reply to Goneinthewind]

I love your handle, Rapunzel.

Chosen because I've lost most of my hair to hashi's and a Prince (my husband) saved me😂😅

Until recently, a succession of pharma companies price gouged T3; 28 tabs cost around $400. It's subsequently come down in price, but many GPs (PCPs) remain clueless about its efficacy and only endocrinologists can recommend it is prescribed - some GPs still refuse to prescribe, despite endos' agreement it is necessary. There are ways and means to flip this lot the bird; none of them exactly cheap and always on the point of being banned/withdrawn/proscribed. If there is anxiety in hypothyroidism, much of it concerns the constant threat of a hormone which saved my life, too, being preemptively withdrawn.😱

You could not make this up.

[Goneinthewind in reply to Rapunzel]

That is really sad to hear. I just refilled a 90 day prescription for Liothyronine tablets (pharmaceutical T3) for $15 American. Just before this, I was taking a T3/T4 Compounded all in one capsule that ran me $140 for a 90 day supply. I'm still trying to adjust to the tablets as I think a person absorbs tablets and capsules differently. But due to the cost..

It might be worth your while to take Dr. Bianco's book with you to your doctor as Dr. Bianco is a leading researcher here in the states publishing his papers on the NIH website. I'm really glad to find his book. I've seen Dr. Bianco interviewed on YouTube by another doctor, Dr. Michael Ruscio, a Functional Medicine Practitioner, which is a worthy watch.

It's been really nice meeting you Rapunzel. To your good health.