Thyroid cancer.

[morehead]

It has been almost 4 months since my thyroid was removed and RAI treatment. My incision is not completely healed and I have pain in my jaws and neck. My neck has swollen. I feel terrible. I have been on synthroid for awhile.

[shaws Administrator]

Welcome to our forum and I am really sorry you had to have your Thyroid Gland removed.

I am not medically qualified but I feel for you to be suffering so much and I would put it down to being prescribed synthroid (Levothyroxine in UK) alone and it is also called T4 .

The fact that synthroid is T4 only - an inactive hormone and it has to convert to T3. T3 is the Active thyroid hormone and is needed in our millions of T3 receptor cells but we cannot rush doses - it always has to be slow and steady and acknowledging that our clinical symptoms are improving.

NDT is another replacement - it is the very original thyroid replacement - it contains all of the hormones a healthy gland would produce, i.e. T4, T3, T2,T1 and calcitonin. It was first prescribed in 1892 and was in use up until the 60's when Big Pharma saw a way to make healthy profits by introducing blood tests and levothyroxine. Thousands do fine on it but I have my thyroid gland and was more unwell than before on it than before being diagnosed.

You should ask if you can have a combination of T4/T3 and recommendations are a 3:1 or 4:1 combination.

Thyroid hormones should be taken on an empty stomach with one full glass of water - usually when we awake and wait an hour before eating. Or at bedtime, as long as you've an empty stomach. If deciding on a bedtime dose, you miss this if having a blood test next a.m. and take afterwards and bedtime dose as usual.

Ask for B12, Vit D,iron, ferritin and folate to be checked, everything has to be optimal.

[morehead in reply to shaws]

I go to ED in a couple days I will ask him about this... Thank you.

[shaws Administrator in reply to morehead]

I will state I'm not medically qualified but sometimes our experiences far exceed those who prescribe.

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

thyroiduk.org.uk/tuk/testin...

I hope your neck heals quickly.

[morehead in reply to shaws]

Thank you. I understand you are not medically qualified.

[MaisieGray]

Have you had your thyroid hormone levels measured since starting Synthroid, and what dose are you on? It may be that your symptoms are indicative of being undermedicated. It can take a while, testing 6 wkly, and adjusting dose accordingly, before we find our optimum level, at which point we are considered euthyroid and our symptoms have abated. Many people do very well on mono L-thyroxine replacement, but whatever form of exogenous hormone replacement we take, it's not often a quick fix. In addition to the body dealing with the effects of suddenly becoming thyroidless, some people may be slower to recover from the effects of surgery itself, and/or anaesthesia. I know of some who did marvellously well immediately after surgery, and one friend in particular was back to her normal running routine two days after, and then only later, they hit a downturn. We are each individual in or response and need to give ourselves time - as well as optimising our meds of course.