Don’t be underactive with your Thyroid surveillance


thyroid

From other posts, you’ll be aware of the thyroid lesion (now 17x19mm) which I’ve been tracking since 2013. The surveillance has included routine thyroid blood tests, mainly TSH, T3 and 4. Due to trends in TSH and T4, it’s been suggested I’m borderline hypothyroidism. I’m out of range in TSH (elevated) but the T4 is currently 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. Levothyroxine is essentially 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).

The NET Connection?

To put things into context, hypothyroidism is an extremely common condition and the main treatment is administration of thyroid hormone  replacement therapy (i.e. Lewvothyroxine).  This is in the top 5 of the most commonly prescribed medication in USA and UK.

However, there are connections with NETs.  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.

There are also connections between regular Neuroendocrine Tumours (NETs) and the  thyroid.  It can often be a site for metastasis, something I have not yet written off given it lights up on nuclear scanning – although my biopsy was inconclusive.   You can see a summary of the connections and my own thyroid issue in more detail in my article “Troublesome Thyroids”. Please note the parathyroid glands are beyond the scope of this article.

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 totally unrelated to their NETs. Remember, NET patients can get regular illnesses too!

What is Hypothyroidism?

Hypothyroidism is a condition in which your thyroid gland doesn’t produce enough of thyroxine. This leads to an underactive thyroid. It seldom causes symptoms in the early stages, but over time, untreated hypothyroidism can cause a number of 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.

What causes Hypothyroidism?

  • Autoimmune thyroid disease sometimes called Hashimoto’s thyroiditis
  • Radioactive iodine or surgery to correct hyperthyroidism or cancer
  • Over-treatment of hyperthyroidism with anti-thyroid drugs
  • Some medicines
  • A malfunction of the pituitary gland

What are the symptoms of Hypothyroidism?

The signs and symptoms of hypothyroidism vary, depending on the severity of the hormone deficiency. But in general, any problems you have tend to develop slowly, often over a number of 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:

    • Fatigue
    • Weakness
    • 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
    • Constipation
    • Depression
    • Irritability
    • 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 USA but most of it is relevant globally.

thyroid video webmd

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.

Now ….. some of these symptoms look very familiar to me and they also look very familiar to some of the comments I see on patient forums related to somatostatin analogues and some of the NET syndromes – 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 normal range.

Can hypothyroidism be treated?

Yes. A synthetic version of thyroxine 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 much thyroid hormone for the body’s needs. It is also known as an 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

Causes

      • 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

Common Symptoms

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
      • thirst
      • passing larger than usual amounts of urine
      • itchiness
      • 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.

Diagnosis

      • By a physical examination and blood tests
      • A low thyroid stimulating hormone (TSH) level with a high thyroxine (T4) level indicate hyperthyroidism

Treatment Options

      • Antithyroid drugs
      • Surgery to remove all or part of the thyroid gland
      • Radioactive iodine to destroy most of the thyroid tissue

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 (under active) and Hyperthyroidism (over active)

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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Neuroendocrine Cancer: Troublesome Thyroids


thyroid

In 2013, just when I thought everything seemed to be under control, I was told I had a ‘lesion’ on the left upper lobe of my thyroid.  At the time, it was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease.  The thyroid gland does in fact get mentioned frequently in NET patient discussions but many of the conversations I monitored didn’t seem to fit my scenario – cue relentless study! I’ve been meaning to write this blog for some time but here is a synopsis of my research translated into ‘patient speak’.  This is intentionally brief, it’s a big subject.  I’ll finish off with an update on where I am with my thyroid issue.

Where is the thyroid and what does it do?

Before I found out about my thyroid problem, I had absolutely no idea what its function was.  I can tell you know, it’s a small organ but it has a massive job! 

It lies in the front of your neck in a position just below your ‘Adam’s apple’. It is made up of two lobes – the right lobe and the left lobe, each about the size of a plum cut in half – and these two lobes are joined by a small bridge of thyroid tissue called the isthmus. It is sometimes described as butterfly shape.  The two lobes lie on either side of your wind-pipe. The fact that it comes up a lot in NET patient discussions is hardly surprising as it’s an endocrine organ responsible for making two hormones that are secreted into the blood: Thyroxine (T4) and Triiodothyronine (T3). These hormones are necessary for all the cells in your body to work normally.

Do I have Thyroid Cancer?

I’ve had a number of biopsies on the thyroid lesion, several fine needle aspiration (FNA) and one ‘core’.  The FNAs were generally inconclusive and the core confirmed fibrous tissue only.  However, the general diagnosis is inconclusive and I have been labelled “THY3F”. Curiously this decodes to “an abnormality is present but it could either be a benign (non cancerous) growth or a malignant cancerous growth of the follicular cells.     A quick primer on Thyroid Cancer is below if you’re interested.

HOWEVER ………

It’s easy to worry about irregularities showing up on scans if you have NETs. Take the thyroid for example, the Ga68 PET has a habit of ‘lighting up’ thyroids – this is a worry because it’s an endocrine organ; and there is a type of thyroid NET (not forgetting the parathyroid), and NETs have a habit of metastasizing to strange places. Sure, you should get it checked out when this happens, but while you will only hear about the outliers on social media, statistically, the vast majority of thyroid nodules are benign. We know about ours because we get so many scans but many people will probably never know and will probably never be bothered by them either. When you look at the figures below, it becomes clear that many NET patients are going to have a thyroid nodule regardless of their diagnosis.

The following is a list of facts regarding thyroid nodules:

  •  Thyroid nodules are three times more common in women than in men
  •  30% of 30-year-old women will have a thyroid nodule.
  •  One in 40 young men has a thyroid nodule.
  •  More than 95% of all thyroid nodules are benign (non-cancerous growths).
  • Some thyroid nodules are actually cysts, which are filled with fluid rather than thyroid tissue.
  • Purely cystic thyroid nodules (thyroid cysts) are almost always benign.
  • Most women will develop a thyroid nodule by the time they are 50 years old.
  • The incidence of thyroid nodules increases with age.
  •  50% of 50-year-old women will have at least one thyroid nodule.
  •  60% of 60-year-old women will have at least one thyroid nodule.
  • 70% of 70-year-old women will have at least one thyroid nodule.

Fear of spread

It’s easy to be concerned about irregularities showing up on scans if you have NETs. However, the Ga68 PET has a habit of ‘lighting up’ thyroids and this is a double worry because it’s an endocrine organ, and there is a type of thyroid NET (not forgetting the parathyroid). But it eventually became clear through research that most are unconnected. Sure, you should get it checked out, but while you will only hear about the outliers on social media, the vast majority of cases are benign.  If you constantly fear cancer spread with every single issue you undergo as a human being, you probably need some help.  You may therefore find my ‘fear’ articles a useful read plus there are two videos presented by professionals who help caner patients cope with these issues:

Article 1: Warrior or Worrier?

Artilce 2:  8 tips for conquering fear.

Thyroid overdiagnosis and overtreatment. You can find many medical papers confirming that incidence of thyroid tumour diagnosis has increased dramatically in many countries in the developed world over the past three decades. Papillary thyroid cancer, which has been responsible for virtually the entire increase, is rarely lethal. The 20 year survival rate is greater than 90%, and approaches 100% for the smallest cancers. The increasing incidence is most likely due to overdiagnosis—the detection of subclinical cancers never destined to cause harm. This conclusion has been reached because the incidence has been primarily due to the detection of small papillary cancers, mortality due to thyroid cancer has not changed significantly, and small foci of papillary thyroid cancer are commonly found at autopsy in people who died of other causes. Overdiagnosis is a problem because it exposes people to the potential side effects of treatment, but without an equal expectation of benefit, because the cancer is unlikely to advance. We know about ours because we get so many scans.

Issues above the diaphragm

There can be other issues with Thyroids including cancer and clearly this was my concern when the word ‘lesion’ was mentioned.  At this point, it’s worth mentioning something from my cancer history which I initially assumed was related but it would appear to be a coincidence (for the time being …..).  When I say “above the diagphragm”, I mean above the abdoment in the general neck and chest area. I also have a hotspot in my left supraclavicularfossa (SCF) lymph nodes (near the clavicle), geographically close to the thyroid (and my lesion is left-sided).  5 nodes were removed from this area in Feb 2012 for an exploratory biopsy which subsequently tested negative and CT and Ultrasound both show nothing vascular or pathologically enlarged. BUT …. there is still a hotspot showing on a subsequent Octreoscan and Ga68 PET since the nodes were removed in 2012.   For the record, I also had positively tested nodes removed from my left axillary (armpit) during the same procedure (my distant disease has always been left-sided).

The surgeon who operated on my left axillary and SCF nodes also specialises in Thyroids and so it was an easy decision to ask to be referred to him. He explained that whilst he could just take the left lobe or the whole thyroid, it would mean lifelong treatment to add to my current burden and perhaps for something which will never trouble me. As nothing is palpable and I have no symptoms, I agreed to a ‘watch and wait’ approach. I now have regular tests and I saw him Endocrine MDT annually for a blood test review and ultrasound check (but see update below).

See EndocrineWeb for more detail about thyroid issues unrelated to NET.

Latest update as at 15 Jan 2019

After monitoring for the first two years, my specialist was not happy with TSH/T4 blood results (elevated for the second time and also on a retest). On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the thyroid panel results indicating mild hypothyroidism. Levothyroxine is a thyroid hormone replacement.  My subsequent two x thyroid panel results are back in the middle of the range so all is good.   Am detecting a slight increase in available energy.

The results of my first Ga68 PET scan in June 2018 indicated some “uptake” but the report inferred it was physiological uptake (false positive).  In fact, at my 2019 appointment, the thyroid lesion is slightly smaller on the latest ultrasound. I’m personally fairly certain this is not connected to NETs and my Endocrine MDT have now referred me back to be survellanced by the NET MDT, they remain on call for any issues.

What else can go wrong with a thyroid?  

Apart from cancer, the main issues appear to be an underactive Thyroid or an overactive Thyroid – known respectively as Hypothyroidism (not enough thyroxine is produced for the body’s needs) and Hyperthyroidism (too much thyroxine is produced for the body’s needs). Of course, these issues can be caused or made worse by cancer.

Hypothyroidism – If too little of the thyroid hormones are produced, the cells and organs of your body slow down. If you become hypothyroid, your heart rate, for example, may be slower than normal and your intestines work sluggishly, so you become constipated.  Key symptoms: tiredness, feeling cold, weight gain, poor concentration, depression. Some of these symptoms look familiar?  The word ‘hashimoto’s’ also comes up on patient forums frequently – this is related to hypothyroidism (underactive).

Hyperthyroidism – If too much of the thyroid hormones are secreted, the body cells work faster than normal, and you have Hyperthyroidism. If you become hyperthyroid because of too much secretion of the hormones from the thyroid gland, the increased activity of your body cells or body organs may lead, for example, to a quickening of your heart rate or increased activity of your intestine so that you have frequent bowel motions or even diarrhoea.  Key symptoms – weight loss, heat intolerance, anxiety, and, sometimes, sore and gritty eyes.  Hmm, again, some of these look familiar?

Check out this excellent short video fromWebMD – click here.  It’s based on USA but most of it is relevant globally.

It’s also worth noting thatsomatostatin analoguesmight cause a “slight decrease in Thyroid function” (it actually states words to this effect in the Lanreotide and Octreotide patient leaflets).  Thus why I advise you not to be underactive with your Thyroid surveillance – read more click here

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), T3 and T4 every 6 months. My levels are back to normal ranges since being prescribed thyroid hormone replacement therapy.

Remember:  Hypo is ‘underactive’, Hyper is ‘overactive’.  Sometimes there are very few symptoms.

Also worth mentioning something called the ‘Parathyroid’ as these glands can frequently be related to NET Cancer (see my blog on Multiple Endocrine Neoplasia (MEN)). It’s another subject in its own right but I just wanted to emphasise that this is a totally different organ with a totally different function (it regulates Calcium).  They are located adjacent to the Thyroid, thus the term ‘para’.

Quick primer on Thyroid Cancer

 There are a number of different types of Thyroid Cancer

Papillary thyroid cancer is the most common type of thyroid cancer, accounting for about 80% of thyroid cancers. While papillary thyroid cancer typically occurs in only one lobe of the thyroid gland, it may arise in both lobes in up to 10% to 20% of cases. Papillary thyroid cancer is most common in women of childbearing age. It sometimes is caused by exposure to radiation. Even though papillary thyroid cancer is usually not an aggressive type of cancer, it often metastasizes (spreads) to the lymph nodes in the neck. Papillary thyroid cancer treatment usually is successful.

Follicular thyroid cancer accounts for about 10% of thyroid cancers. Like papillary thyroid cancer, follicular thyroid cancer usually grows slowly. Its outlook is similar to papillary cancer, and its treatment is the same. Follicular thyroid cancer usually stays in the thyroid gland but sometimes spreads to other parts of the body, such as the lungs or bone. However, it usually does not spread to lymph nodes. It is more common in countries where diets do not contain enough iodine.

There is a type of thyroid tumour which has recently been removed as a type of cancer.  “Encapsulated follicular variant of papillary thyroid carcinoma” is now known as “noninvasive follicular thyroid neoplasm with papillary thyroid-like nuclear features” or NIFTP.  The word ‘carcinoma’ has gone.  Read about this here.

Hurthle cell carcinoma, also called oxyphil cell carcinoma, is a type of follicular thyroid cancer. Most patients diagnosed with Hurthle cell cancer do well, but the outlook may change based on the extent of disease at the time of diagnosis.

Medullary thyroid cancer (MTC) is the only type of thyroid cancer that develops in the parafollicular cells of the thyroid gland. It accounts for 3% to 10% of thyroid cancers. Medullary cancer cells usually make and release into the blood proteins called calcitonin and/or carcinoembryonic antigen, which can be measured and used to follow the response to treatment for the disease. Sometimes medullary cancer spreads to the lymph nodes, lungs or liver before a nodule is found or the patient has symptoms. MTC can be treated more successfully if it is diagnosed before it has spread. There are two types of MTC:

  • Sporadic MTC is more common, accounting for 85% of medullary thyroid cancers. It is found mostly in older adults and is not inherited.
  • Familial MTC is inherited, and it often develops in childhood or early adulthood. If familial MTC occurs with tumours of certain other endocrine organs (parathyroid and adrenal glands), it is called multiple endocrine neoplasia type 2 (see my blog on MEN 2).

Anaplastic thyroid cancer is the most dangerous form of thyroid cancer. It is makes up only 1% of thyroid cancers. It is believed that anaplastic thyroid cancer grows from a papillary or follicular tumour that mutates further to this aggressive form. Anaplastic thyroid cancer spreads rapidly into areas such as the trachea, often causing breathing difficulties.  Anaplastic thyroid cancer sometimes is called undifferentiated thyroid cancer because the cells are so different from normal thyroid tissue.

Thyroid cancer is not very common but diagnoses are ‘skyrocketing’ most likely due to advanced detection techniques.  Most are very slow-growing with 5 year survival of 97% according to MD Anderson. There is a very interesting article about the overdiagnosis of Thyroid cancer which I found useful given my situation. You can read it here.

Thyroid ‘nodules’ would appear to be very common with 50-70% of all 50-70 year olds having at least one nodule present and statistically, 95% of these are benign (see EndocrineWeb)

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life