Many thyroid patients end up without a thyroid. there can be many reasons for this:
They may have had Graves’ disease and had RAI to kill their thyroid
They may have had Hashimoto’s and had their thyroid destroyed by that disease
They may have had nodules and doctor recommended removal
They may have had THYCA (Thyroid Cancer) (see section below)
There are even some who are born without a thyroid (although very rare)
Whatever the reason for ending up thyroidless the result is the same.
Every single cell in the body is dependent on thyroid hormones. When you no longer make any of your own then it is essential to get proper thyroid treatment.
Living without a Thyroid means you have to be on Thyroid medicines the rest of your life as you cannot ever produce any thyroid hormones. While many with low or slow functioning thyroid also are on meds for the rest of their life, knowing that you no longer have a thyroid is an additional risk and stress factor.
If your doctor is telling you that he/she wants to remove the thyroid because of nodules, it is advised to get a biopsy to see if the nodules are THYCA and if not, to try to treat first.
There have been many cases where nodules have disappeared through proper thyroid treatment and addition of Iodine. (be sure to test iodine levels first).
Thyroidectomy
Some additional information about this process:
It usually begins with a biopsy which can be very painful itself
Surgery always comes with risks and inconvenience
The recovery from the surgery can be painful
There is a risk of losing your voice (very rare)
There is a risk of losing your parathyroid (again rare)
RAI
Is your doctor recommending RAI (or Iodine 1-131) treatment to kill the thyroid?
Be aware that some people experience the following side effects:
RAI can be very hard on your adrenals.
A burning sensation or tenderness in the neck area.
Nausea and upset stomach
Swelling and tenderness of the salivary glands
Taste changes
Dry mouth
Reduction in tear production
THYCA (Thyroid Cancer)
If your results come back that you do have Thyroid Cancer (THYCA), know you are not alone. There are more than 50,000 new cases in the US alone each year. More internationally.
Your doctor may say that this is the “Easy Cancer”, they are trying to say that is it treatable (more than a 98% cure rate) but please be aware there is nothing easy about any cancer and there is nothing easy about living without a thyroid.
Some doctors mistakenly think that you cannot take NDT if you had THYCA. They are very wrong. NDT is the best treatment for any thyroid disease including THYCA.
One of the primary goals of post-THYCA treatment is to ensure complete suppression of TSH to ensure that the thyroid tissue does not re-grow and prevents THYCA reoccurrence. Doctors are wrong in thinking that T4 medicines are best. Often T4 meds keep patients’ hypo (especially for thyroidless patients) and therefore is the worst treatment for THYCA.
Here are some studies that back this up:
Additional links:
Some additional pages with information about being Thyroidless