From other posts, you’ll be aware of the thyroid lesion (approx. 17 x 19mm) which I’ve been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range. On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement. One month after taking these drugs, my thyroid blood levels are now normal for the first time in 4 years (since there are records of test results – it might be longer).
My biopsy was inconclusive, with no signs of neuroendocrine cells. You can see a summary of my own thyroid issue in my article “Troublesome Thyroids”.
Please note the parathyroid glands are beyond the scope of this article which will also list the different types of Thyroid Cancer unrelated to NETs. I should also point out that benign nodules are very common in the general population, particularly if 5o and older. Check out the article just linked. They can also light up as physiological uptake on somatostatin receptor (SSTR)PET scans (e.g. Ga68, Cu64).
To put things into context, hypothyroidism is an extremely common condition, and the main treatment is the administration of thyroid hormone replacement therapy (i.e. Levothyroxine). This is in the top 5 of the most commonly prescribed medication in USA and UK. Based on sheer numbers, it follows that many people (not all) are going to have an underactive thyroid whether they have NETs or not. Consequently, I’m of the opinion that many (not all) people have thyroid problems that are incidental to their NET diagnosis. At the point of diagnosis, many cancer patients are subjected to a barrage of tests (nothing wrong with that) and suddenly find a thyroid issue that they immediately link with cancer. It’s that ‘correlation vs causation’ conundrum again.
The NET Connection?
There are known connections between NETs and the thyroid. Firstly, there is one type of cancer known as Medullary Thyroid Cancer (MTC) and it also has a familial version known as Familial MTC or FMTC (the latter is normally related to MEN2A and MEN2B).
It can often be a site for metastasis, it would be an unusual metastatic site for my small intestine case though. Other than MTC above, a primary site for NET would also be unusual. “Troublesome Thyroids” will also list the different types of Thyroid Cancer unrelated to NETs.
Thyroid Function – the Lanreotide/Octreotide connection
Before I continue talking about hypothyroidism, here’s something not very well-known: Somatostatin analogues might cause a “slight decrease in Thyroid function” (a quote from the Lanreotide patient leaflet). The Octreotide patient leaflet also states “Underactive thyroid gland (hypothyroidism)” as a side effect. Many sources indicate that thyroid function should be monitored when on long-term use of somatostatin analogues. It’s also possible and totally feasible that many NET patients will have thyroid issues unrelated to their NETs. Remember, NET patients can get regular illnesses too!
If you are over 50, or you are prescribed Lanreotide or Octreotide, I suggest you ask your team to add a thyroid panel to your routine follow-up testing – read more about routine follow-up testing for NETs here – click here.
What is Hypothyroidism?
Hypothyroidism is a condition in which your thyroid gland doesn’t produce enough thyroxine. This leads to an underactive thyroid. It seldom causes symptoms in the early stages, but over time, untreated hypothyroidism can cause several health problems, such as obesity, joint pain, infertility and heart disease. Both men and women can have an underactive thyroid, although it’s more common in women. In the UK, it affects 15 in every 1,000 women and 1 in 1,000 men. Children can also develop an underactive thyroid. Hypothyroidism is much more common than NETs and so it must be understood that even though the thyroid is an endocrine organ, any thyroid problems diagnosed before or after NET may well be unconnected with NETs.
What causes Hypothyroidism?
- Autoimmune thyroid disease is sometimes called Hashimoto’s thyroiditis
- Radioactive iodine or surgery to correct hyperthyroidism or cancer
- Over-treatment of hyperthyroidism with anti-thyroid drugs
- Some medicine
- A malfunction of the pituitary gland
What are the symptoms of Hypothyroidism?
The signs and symptoms of hypothyroidism vary, depending on the severity of hormone deficiency. But in general, any problems you have tend to develop slowly, often over several years. At first, you may barely notice the symptoms of hypothyroidism, such as fatigue and weight gain, or you may simply attribute them to getting older. But as your metabolism continues to slow, you may develop more obvious signs and symptoms. Hypothyroidism signs. Below are major symptoms associated with hypothyroidism:
- Weight gain or difficulty losing weight (despite reduced food intake)
- Coarse, dry hair and dry skin
- Hair loss
- Sensitivity to cold
- Muscle cramps and aches
- Memory loss
- Abnormal menstrual cycles
- Decreased libido
- Slowed speech (severe cases)
- Jaundice (severe cases)
- Increase in tongue size (severe cases)
Check out this excellent short video from WebMD – click here or the picture below. It’s based on the USA outlook but most of it is relevant globally.
You don’t have to encounter every one of these symptoms to be diagnosed with hypothyroidism. Every patient’s experience with the disorder is different. While you may notice that your skin and hair have become dry and rough, another patient may be plagued more by fatigue and depression.
When hypothyroidism isn’t treated, signs and symptoms can gradually become more severe. Constant stimulation of your thyroid gland to release more hormones may lead to an enlarged thyroid (goiter). In addition, you may become more forgetful, your thought processes may slow, or you may feel depressed.
Some of these symptoms look very familiar to me mainly because I see these listed many times in threads in my private Facebook group where people automatically related them to NET syndromes, and while that may be right in some cases, it really is that jigsaw thing again.
I guess it’s possible that people are borderline hypothyroidism prior to taking somatostatin analogues and the drug pushes them out of range (similar to what it’s known to do with blood glucose levels and diabetes). I’m not suggesting a direct clinical link in all cases but what I am suggesting is that perhaps some of the answers might be found in checking Thyroid hormone levels.
What are the Thyroid Hormone tests for Hypothyroidism?
A high thyroid-stimulating hormone (TSH) level with a low thyroxine (T4) level indicates hypothyroidism. Rarely, hypothyroidism can occur when both the TSH and T4 are low. A slightly raised TSH with a normal T4 is called subclinical, mild, or borderline hypothyroidism. Subclinical hypothyroidism can develop into clinical or overt hypothyroidism
Routine ‘Thyroid blood tests’ from your doctor will confirm whether or not you have a thyroid disorder. I now test for TSH (thyroid-stimulating hormone), T4 every 6 months. Mostly in range but recently TSH is spiking out of range and T4 is consistently at the lower end of the normal range.
In USA, I have noted that some patients say they also get tested for something called “Free T4”. While T4 is the main form of thyroid hormone circulating in the blood. A Total T4 measures the bound and free hormone and can change when binding proteins differ (see above). A Free T4 measures what is not bound and able to enter and affect the body tissues. Tests measuring free T4 – either a free T4 (FT4) or free T4 index (FTI) – more accurately reflect how the thyroid gland is functioning when checked with a TSH. Whether that is routine or not is not clear.
Can hypothyroidism be treated?
Yes. A synthetic version of thyroxine is taken daily as prescribed. e.g. Levothyroxine tablets
OK that’s Hypothyroidism – what is Hyperthyroidism?
Hyperthyroidism is a condition where the thyroid gland produces too many thyroid hormones for the body’s needs. It is also known as overactive thyroid or thyrotoxicosis. An overactive thyroid can affect anyone, but it’s about 10 times more common in women than men and it typically starts between 20 and 40 years of age.
- Hyper – means “over -“
- Hypo – means “under -“
- The terms “hyperthyroid” and “thyrotoxic” are interchangeable
- Graves’ disease – the most common cause
- A toxic nodular goitre (a goitre is an enlarged thyroid gland)
- A solitary toxic thyroid adenoma (an adenoma is a clump of cells)
- Thyroiditis (infection or inflammation of the thyroid gland) which is temporary
- Rarely it can be caused by Hashimoto’s disease
A speeding up of mental and physical processes of the whole body, such as
- weight loss, despite an increased appetite
- palpitations / rapid pulse
- sweating and heat intolerance
- tiredness and weak muscles
- nervousness, irritability and shakiness
- mood swings or aggressive behaviour
- looseness of the bowels
- warm, moist hands
- passing larger than usual amounts of urine
- an enlarged thyroid gland
If the cause is Graves’ disease, you may also have ‘thyroid eye disease’. Smokers are up to eight times more likely to develop thyroid eye disease than non-smokers.
- By a physical examination and blood tests
- A low thyroid stimulating hormone (TSH) level with a high thyroxine (T4) level indicates hyperthyroidism
- Antithyroid drugs
- Surgery to remove all or part of the thyroid gland
- Radioactive iodine to destroy most of the thyroid tissue
Again, with hyperthyroidism, some of these symptoms look very familiar to me mainly because I see these listed many times in threads in my private Facebook group where people automatically related them to NET syndromes, and while that may be right in some cases, it really is that jigsaw thing again.
Research sources used to compile this post:
1. Lanreotide Patient Leaflet.
2. Octreotide Patient Leaflet.
3. British Thyroid Foundation. (Particularly how to interpret Thyroid results – click here) – always check the unit of measure when comparing blood result ranges).
4. The UK NHS – Hypothyroidism (underactive) and Hyperthyroidism (overactive).
5. The American Thyroid Association leaflet on Thyroid tests. Click here.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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9 thoughts on “Don’t be underactive with your Thyroid surveillance”
Thank you for this information !
Your posts are very informative. I was diagnosed with NET cancer of the terminal ileum (low grade) it was surgically removed last October. Since then, i’ve been learning so much on a greater level through your blogs. Tomorrow i do a imaging of my thyroid as my oncologist may have seen something from my MRI. Hopeful it’s nothing but also prepared. Thank you for your well written and detailed blogs on NETs. Aloha from Hawaii~
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You really should be getting Free T3 tested as well. You may not have a conversion problem now but if you develop one and are not getting Free T3 tested youll be chasing yourself in circles trying to figure out what is going on.
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Thanks for another informative post. Just like to share something in relation to the link between NETS and thyroid activity. In December 2015 I was diagnosed with liver metastasis arising from a primary PNET (surgically removed in 2011 and later treated with stereotactic body radiotherapy). I entered a clinical trial with LENVATINIB, manufactured by IPSEN and normally used to treat thyroid cancer. I came off the treatment end of last October and am currently on SOMATULINE. I exited the trial because a) my tolerance to the drug had reached its limit and b) my response, while not total, was sufficiently positive (‘considerable’ reduction, necrosis, normal biomarkers) that my doctors reasonably felt I could come off the treatment. My scan of two weeks ago confirms my progression free survival and remission. For now. At any rate, whatt I’m saying is: ask your oncologist about LENVATINIB and SBRT. In some countries it’s called ‘radio surgery’. I’m based in Spain.
Thanks again, Ronny. I follow your posts avidly and pass many on to my oncologists.
Well written and useful. Thank you.
Tom Wilson Caregiver to my wife Lynn
Sent from my iPhone