Endocrine Archives

01 Dec 2024

23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy131I-Metaiodobenzylguanidine (mIBG), 5-HIAA, 5-HT, 5-HTP, 5-Hydrotryptophan (5-HTP), 5-Hydroxyindoleacetic Acid (5-HIAA), 5-Hydroxytryptamine (5-HT), Adrenocorticotropic Hormone (ACTH), Biopsy, C-peptide, Calcitonin, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Catecholamines, Chromaffin cells, Chromogranin, Chromogranin A (CgA), Chromogranin B (CgB), Chromogranin C (CgC), Cortisol, Electrolytes, Endocrine, Fasting Gut Endocrine Profile, Flushing, Gastric NET, Gastrin, Gastrin pH, Gastrinoma, Gastroesophageal reflux disease (GERD), Genetic testing, Glucagon, Glucagonoma, Hedinger syndrome, Histamine, Hormones, Hypertension, Insulin, Insulinoma, MEN1 syndrome, Metanephrines, Molecular markers, NETest, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Neurokinin A (NKA), NKA, NT-proBNP, Pancreastatin, Pancreatic cancer, Pancreatic NET (PanNET), Pancreatic polypeptide (PP), Pheochromocytoma, Plasma 5HIAA, PPoma, Proinsulin, Proton pump inhibitors (PPI), Red blood count (RBC), Renal insufficiency, Serotonin, Serum serotonin, Somatostatin, Somatostatinoma, Substance K, Substance P, Tachycardia, Tachykinin, VIPoma, Wheezing, Zollinger-Ellison Syndrome

Originally published 2016, updated October 2025 Background Some people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done…

21 Nov 2024

By Ronny Allan

6 Comments

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine CancerCDKN1B, Endocrine, Familial medullary thyroid cancer (FMTC), Genetics, Hereditary cancer syndrome, MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, MEN4 syndrome, MEN5 syndrome, MENX, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Paraganglioma, Parathyroid gland, Pheochromocytoma, Pituitary gland

First published 2015, updated for 2025. Overview We all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN). I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects. MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues). Neoplasia is…

29 Aug 2024

By Ronny Allan

20 Comments

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series5-HIAA, 5-HT, 5-HTP, 5-Hydrotryptophan (5-HTP), 5-Hydroxyindoleacetic Acid (5-HIAA), 5-Hydroxytryptamine (5-HT), Antidepressant, Anxiety, Blood brain barrier (BBB), Bradykinin, Brain serotonin, Cancer anger, Carcinoid heart disease, Carcinoid rage, Carcinoid syndrome, Depression, Desmoplasia, Diarrhea, Dopamine, Endocrine, Flushing, Foregut, Hindgut, Histamine, Hormones, Monoamine oxidase inhibitors (MAOIs), NET syndromes, Neuroendocrine, Neurotransmitter, Norepinephrine, Nutrition, Oxitriptan, Prostaglandin, Selective Serotonin Reuptake Inhibitor (SSRI), Serotonin, Serotonin and norepinephrine reuptake inhibitor (SNRI), Serotonin syndrome, Serum serotonin, St. John's wort, Thorson-Bioerck syndrome, TPH1, TPH2, Tricyclic antidepressant, Tryptophan, Tryptophan hydroxylase (TPH)

Background I'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Tumour (NET) patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't…

23 May 2024

By Ronny Allan

20 Comments

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, TreatmentB12, Bile acid diarrhea, Bile acid malabsorption, Bile acid sequestrant, Bile acids, Bile salt, Carcinoid syndrome, Digestive enzymes, Endocrine, Fat malabsorption, Fat soluble vitamins, Gallbladder, Gut Flora, Hormones, Iron Deficiency Anaemia, Lanreotide, Liver, Malabsorption, Neuroendocrine, Neuroendocrine cancer, Nutrition, Octreotide, Pancreatic cancer, Pancreatic NET (PanNET), Pernicious anaemia, Probiotic, Quality of LIfe (QoL), Side effect, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Somatostatin analogues, Steatorrhea, Surgery, Vitamin ADEK, Vitamin B12, Water soluble vitamins

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…

13 May 2024

By Ronny Allan

8 Comments

Neuroendocrine Cancer – a difficult jigsaw

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAcid reflux, Carcinoid syndrome, Diabetes, Early Diagnosis, Endocrine, Hormones, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery, Symptom

A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs.Although I chuckled and raised an eyebrow at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities/secondary illnesses. After…

22 Mar 2024

By Ronny Allan

15 Comments

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy24-hour urinary catacholamines and metanephrines, 5-HIAA, 5-Hydrotryptophan (5-HTP), Addison's disease, Adrenal insufficiency, Adrenaline, Adrenocorticotropic Hormone (ACTH), Aldosterone, Anaphylactic shock, Androgrens, Antihistamines, Appendiceal NET, Bradykinin, Calcitonin, Calcitonin gene-related peptide (CGRP), Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Catecholamines, Chromogranin A (CgA), Corticotrophin releasing hormone (CRH), Cushing's disease, Cushing's syndrome, Diarrhea, Endocrine, Enterochromaffin cells, Epinephrine, Estrogen, Fight or flight, Flushing, Ga68 PET/CT, Gastric NET, Gastrin, Glucagon, Histamine, Hormones, HPA axis, Hyperparathyroidism, Hypocortisolism, Hypotension, Hypothalamus, Insulin, Intraoperative hypertensive crisis, Islet cell, Islet of Langerhams, Kallikrein, Lanreotide, Lung NETs, Malabsorption, Mast cell, Medullary thyroid cancer (MTC), Metanephrines, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine neoplasm (NEN), Neurokinin A (NKA), Neuropeptide K, Neurotensin, Neurotransmitter, Norepinephrine, Nutrition, Octreotide, Octreotide scan, Ovarian NEN, Pancreastatin, Pancreatic NET (PanNET), Pancreatic polypeptide (PP), Paraganglioma, Pellagra, Peptide, Pheochromocytoma, PPoma, Prostaglandin, Pruritus, Serotonin, Somatostatin, Somatostatinoma, Substance P, Tachycardia, Tachykinin, Telotristat ethyl (Xermelo), Testosterone, The 5 E's, Tryptophan, Vasoactive intestinal peptide (VIP), Vasodilation, VIPoma, Xermelo (Telotristat ethyl)

Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you…

27 Feb 2017

By Ronny Allan

4 Comments

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid tumour, Distant metastatis, Endocrine, Ki-67, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my…

15 Jun 2016

By Ronny Allan

4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine CancerCushing's disease, Cushing's syndrome, Endocrine, MEN1 syndrome, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Parathyroid gland, Thymic NEN

In a previous life, I used the term 'smoke and mirrors' quite a bit. I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail. Sometimes there was an element of 'covertness' or a 'hidden agenda'. It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late. Some of you will already be seeing where I'm going with this line of thinking -…

Tag: Endocrine