Hi, I hope you are all well.
Any advice on anyone having PHEACROMOCYTOMAS?
I am having tests done for Adreanal problems and this has been mentioned.
I feel so unwell with hugh BP, strange sensations in the head, stomach pains, face flushing and tingling in arms and legs, plus weight loss and urinating much more than usual.
Thank you and take care
Bubba🍁🍁
If they are going to mention things, the very least they should do is give you some information to find out more. It is called Phaeochromocytoma (Sometimes, especially outside the UK, it doesn't have the "a" at the start! It is the same thing however it is spelled.)
The NHS introductory page is here:
Phaeochromocytoma
nhs.uk/conditions/phaeochro...
They cause a lot of confusion and worry because they point you at Cancer Research UK - despite the majority are NOT cancerous.
Phaeochromocytoma
cancerresearchuk.org/about-...
I'm afraid I really don't know much about them but it is so crummy to leave you being FORCED to ask, I think you deserve an answer as quickly as possible - even if it is not the world's best or most knowledgeable.
There is a specialised patient support group. I have no knowledge of them but I think it might be a good idea to contact them.
Phaeo Para Support UK
Information about phaeochromocytomas
My understanding from experienced physicians is these things are rarer than blubbery lips on chickens, but specialists get excited at the prospect of being able to say they have diagnosed one. I had a neurologist practically swoon at the hope I had it. Exotic lab test came back negative and he was highly dispirited.
I hope it’s a wild goose chase in your case.
Mine was due to a traumatic brain injury. The brain is the most energy-hungry organ in the body. I went down rabbit holes around adrenals for months.
Best wishes for a successful outcome.
Thank you RockyPath, I have had brain MRI and CT scan and all was clear.
I am having awful symptoms and the A&E Doc said my symptoms are of someone with Phaechromotoma. I have an appointment to see my Endocrinologist but not til December 23.
Please may I ask what symptoms you had.
Thank you
kind regards
Bubba🍁🍁
Take care
Yes, I had a brain MRI and CT and everything looked fine because neither of those imaging systems can perceive injuries to brain matter. They are designed to find blood clots and roofing nails inadvertently fired into the cranium.
I had crushing fatigue, piercing pulsatile ice pick headaches, inability to maintain sleep at night. Daytime sleepiness (and going to sleep while operating a motor vehicle), immunity to every kind of wakefulness-promoting drug, immunity to sleep drugs, weight loss, ability to consume vast quantities of high-calorie foods and not gain an ounce, balance disorder, fly-off-the-handle rages at my wife (whereas I’m as mild mannered and emotionally stable as a saint), irritability, suicidal ideation, visual processing disorder. I’ve probably forgotten something. Oh, slowed thinking, word finding and memory malfunctions.
All I’m saying is so little is known about the brain that doctors will look for little green aliens who landed in your garden and infiltrated your body through the ear canal while you were sleeping, before they will consider something rather common that’s suggested by physical symptoms. Sort of the way they refuse to use eyes, ears, hands, brain to recognize physical symptoms of hypothyroidism, something that afflicts millions of people (though these people are more commonly female, and doctors are more commonly “of the more rational gender 🙄”)
I hope the search for help leads you to someone with eyes.
Hi bubbatetley, I imagine you are feeling very worried, as Pheocromocytomas are very rare and not many medics have come across them. The main thing is that you are being tested for them, and the symptoms have not been missed. If you have one it can be treated.
I have a genetic condition called MEN2a, ( Multiple Endocrine Neoplasia) and although I have not developed a Pheo (yet) many people with this condition do, and it can be the first thing they present with. If you go to the AMEND website you will find lots of information, patient stories, and a phone number you can call to speak to a counsellor or to someone who has experienced this. There is also a private Facebook page.
Good luck. Let us know how you get on.
Thank you for the advice Shellian. I shall ring the Helpline for a chat to see if they can helo me in any way.
Keep ya posted
Take care
Bubba🐧🐧
That is probably the best thing to do as if you do have a Pheo, it must be treated before anything else, even adding supplements etc. Good luck.
I hope your mind will put to rest soon re phare but having read through some of your recent posts I would venture an opinion that your symptoms match an untreated B12 deficiency together with iron deficiency.
Hi, Thank you for reply. I have very low iron and on supplements. B12 defiency is low too but GP is saying in range as they often do. All they think aboyt is the NHS guidelines and not the patients symptoms, regardless on how ill I feel and not functioning .
I have an appointment to go to see my Endocrinologist December 9th to test for Adreanals. I am having to do a 24hour urine collection today and return it to the Hospital tomorrow.
Keep ya posted
Take care
Bubba🍁🍁
Have you thought about self treating your B12D? IF you are on Facebook I would recommend joining the Pernicious Anaemia/B12 Deficiency Support Group which has a wealth of information on both iron and B12 and can recommend practicioners who are more knwoledgable about both conditions.
Having a short Synachten test is good but urine collection may not reveal much. It would be better to do the 4 point saliva cortisol text which obviously endocrinologists don't believe in although it's used by NASA and military. You could test this privately.
Hi there from Sydney, Australia. I do hope you don't have a Pheo however at least your endocrinologist is looking further into your symptoms as many don't.
Some of your symptoms sound like symptoms I had for parathyroid issues. It took two years of migraines, feeling utterly exhausted, joint pains, depression, and excessive urination to finally have a parathyroidectomy which resolved all my issues.
I had two glands removed, they were enlarged, albeit that the Sestamibi scan came back negative but my PTH levels kept bouncing up and down, and I had had several small kidney stones over the years, and my calcium levels were normal, so not much to go on.
In the past these symptoms used to alert drs to parathyroid issues:
"Bones, moans, groans and psychological overtones" which described my symptoms perfectly.
Good luck, I hope you get to the bottom of your issues so that you soon feel well again.
Hi there from freezing cold Yorkshire.. Thankyou for the reply. I hope you are feeling better now? I had issues with my Parathyroid glands 2 years ago, Endo said to watch and wait to see how I go.
These last 4 months I've felt so ill with awful symptoms. Fatigue, weight loss , stomach pains,
weird sensations in the head with tingling all day which I've had for 2 years now. Legs are both tingling from kness down to my feet. Extreme sweating at night, but during the day extreme flushing of the face.. BP is now Hypertensive so Meds have been increased. HELP!!!!!
Iron Anemia which I'm taking supplements for.
Did you ever have Tingling in the head?
I just want to be me again, instead of always being so poorly!
Have a good weekend and take care
Kind regards
Bubba 🍁🍁
PS I took my 24Hour urine back to the Hospital today.. Here I go again wait, wait ,wait!!!!!
Hernia and Underactive Thyroid
Can I demand a referral to endocrinologist
Do many of you take T3 only??
