A place for surgery???

[DLV2016]

My experience over the past two years has shown that while you can't have simultaneous hyper and hypo symptoms you can progress from hypo to hyperthyroidism and if not recognised this can be very problematic. I had Hashimotos and multinodular goitre for twenty two years and experienced Hashimoto flare ups several times. I had to alter dosage to mitigate the symptoms of this and also trialled all the T4 - T3 - T4 +T3 and NDT options. I also adhered to the suggested thyroid lifestyle and diet. Over the past three years however, my symptoms for Hashiimotos have changed to those of Plummers disease (Toxic Multinodular Goitre). This has been confirmed in the last four blood tests done over the past two years. I am going for a thyroidectomy next week because of cardiac implications. What concerns me is that this type of progression of thyroid disease is hardly written about or fully explained. Patients spend so much time and energy trying to understand and treat their thyroid disease, especially if there is minimal symptom relief. Many are unaware that after several years, end stage thyroid disease can present very differently and that toxicity can result. Continuing to take medication in this situation can be dangerous, particularly if one keeps increasing the dosage. My specialist advised that due to the way my Hashimotos has evolved and changed, and also the nodule activity, there is now very little hope of symptom relief through medication and that surgery is the best option. Having been through three years of very erratic thyroid behaviour, I believe that I will be better off without a very unstable toxic thyroid which is effectively poisoning my body. There is a place for surgery in thyroid disease although I see very little discussion about all this. Research done by Ivar Guldvog, MD, PhD, at Telemark Hospital in Skien, Norway, showed a big improvement in QOL indicators for patients having thyroidectomies for unresolved severe Hashimotos. Healing and balancing medication can take up to a year after thyroid surgery but there are many people who have real symptom relief and lead active full lives without a thyroid. Interested to hear any thoughts or experiences of this.

[helvella Administrator Thyroid UK]

If anyone wants to offer surgery, they need first to accept that patients need whatever combination of thyroid medicines works best for them. Whether T4, T4+T3, T3 or desiccated thyroid - or any future options (such as polyzinc-T3).

It would be unethical (and immoral) to perform surgery and then cast the patient off into T4-only treatment for the rest of their lives.

[greygoose]

My experience over the past two years has shown that while you can't have simultaneous hyper and hypo symptoms

Yes you can.

For a start, it can be difficult to tell the difference, so many are the same. That's where blood tests come in, to indicate over or under medication.

you can progress from hypo to hyperthyroidism and if not recognised this can be very problematic.

Are you talking about Hashi's 'hyper' swings, here? If so, they are not permenant, and not really hyperthyroidism. When the immune system attacks the thyroid, the dying cells deposit their stores of thyroid hormone into the blood, causing the FT4/3 levels to rise sharply, and therefore the TSH drops. But, once the excess hormone is used up/excreted/recycled, the levels drop back to hypo. Sorry if you already know all that, but your post is rather confusing.

Or, are you talking about toxic nodules? In which case, surgery would probably be the best course of action. But, let's be clear about this.

I had Hashimotos and multinodular goitre for twenty two years and experienced Hashimoto flare ups several times. I had to alter dosage to mitigate the symptoms of this

They're called 'flares' not 'flare ups'. Not the same thing. Or, Hashi's 'hyper' swings. And, yes, most people stop their thyroid hormone for a while during a 'hyper' swing. It's the sensible thing to do. And usually best to do it without involving the doctor because you don't want your prescription changed, just a break from levo, or whatever.

What concerns me is that this type of progression of thyroid disease is hardly written about or fully explained.

Well, it's not exactly progression. It's swinging backwards and forwards until the thyroid is eventually destroyed. Not everybody develops a toxic nodule - I haven't, and my thyroid is now dead. We often talk about Hashi's on here, and explain how it works. We don't so often talk about toxic nodules because not that many people have them, but they are mentioned sometimes.

Many are unaware that after several years, end stage thyroid disease can present very differently and that toxicity can result. Continuing to take medication in this situation can be dangerous, particularly if one keeps increasing the dosage.

Once again, that's where blood tests come. If your results start telling you that you're over-medicated, you wouldn't keep increasing the dose, would you.

My specialist advised that due to the way my Hashimotos has evolved and changed, and also the nodule activity, there is now very little hope of symptom relief through medication and that surgery is the best option.

Not quite sure what he means by 'the way your Hashi's has evolved'. Not sure that the development of a toxic nodule is the evolution of your Hashi's.

And, as helvella says, surgery may be the best option if he knows how to treat the resulting hypothyroidism. Not many endos do. What is he a specialist of? Thyroid? He's a very rare bird, then, because there are very, very few of them around. Most are diabestes specialists who don't know that much about thyroid.

Having been through three years of very erratic thyroid behaviour, I believe that I will be better off without a very unstable toxic thyroid which is effectively poisoning my body.

Well, Hashi's is always erractic. That's what it's all about. But, I really don't think your nodule is poisoning your body, just providing it with too much thyroid hormone. Thyroid hormone isn't poison.

Research done by Ivar Guldvog, MD, PhD, at Telemark Hospital in Skien, Norway, showed a big improvement in QOL indicators for patients having thyroidectomies for unresolved severe Hashimotos.

What is 'severe' Hashi's? Hashi's is Hashi's. You don't have degrees of severity. And it eventually resolves itself by killing of the thyroid. At which point you are definitively hypo. Just like after a TT.

Healing and balancing medication can take up to a year after thyroid surgery but there are many people who have real symptom relief and lead active full lives without a thyroid.

Only if they are adequately medicated. And a hell of a lot of them aren't. No more than those that have surgery for Grave's. And, it can take a hell of a lot longer than a year to 'balance medication'. You are dependant on the level of knowledge of your endo. And many of them don't have a lot. So, if you're contemplating surgery, that is what you should be discussing now. Before it's too late. Get it in writing, if you can, what is his treatment plan post surgery - and for the rest of your life. Seems to me he's not 100% realistic about this. They often aren't. Removing your thyroid will make his life easier - he thinks - but what about yours? Be very careful what you agree to. That's what I think.