M.E and Panhypopituitarism

M.E and Panhypopituitarism

Postby K9Trainer » Tue Oct 25, 2011 4:47 pm

Hello folks,

I would like to know if anyone has experience of M.E / CFS and ALSO has pituitary problems, and how the two have impacted on each other. I have had pan-hypopituitarism for ten years now following surgery for Cushings, and have struggled with weight and low energy levels ever since. However I have recently taken a really bad turn for the worse and found myself collapsing after attempting exercise, feeling flu like on a regular basis and barely having the energy to leave my bed. After THREE visits to the doctor, the last one finally diagnosed me with M.E following copious blood checks etc, and referred me to a specialist clinic. I have read that M.E can affect or be affected by the Endocrine system, in particular cortisol too. I would be really intersted in other experiences.

Becky. x
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Location: Norfolk

Re: M.E and Panhypopituitarism

Postby Sandy » Wed Nov 02, 2011 10:59 am

Hi Becky,
I have GH deficiency & went to both my Co Dr & a private consultant GP to try ot understand more about why I feel so rubbish - pain, fatigue, cognition etc - and both of them have wondered if I have CFS / ME.
I really don't want to be diagnosed with that, maybe because I don't understand it, but it seems quite scary to me - I don't know what the prognosis could be, it seems like a real battle to try to be anything like 'normal', and I've been struggling with this situation for so long now, I guess I can't think of it dragging on further.
Like you, I'd really appreciate any more info & experiences, especially if it's good news!
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Re: M.E and Panhypopituitarism

Postby K9Trainer » Tue Jan 03, 2012 5:25 pm

Hi Sandy,

If you have M.E the best way to deal with it is to face it, learn about it and most of all accept it because anxiety and stress is one of the things which is going to prolong and make it worse.

The good news is that people CAN and DO get better from it, but your body is telling you something in big red letters about what it needs.

There are certain ways to deal with it in order to manage life effectively and if you do have it you need some support to learn how to do it. I am using an electric chair and scooter so that I can still get out of the house, walk the dog etc. I don't see having to use them as giving up because lying in bed and not even trying would be giving up! I see them as tools to freedom and independence while my body is fighting its own battle to be well. I'm not chuffed about needing to use them, far from it, but thank goodness they are there or I would be stuck inside all the time.

ME is variable in severity too, not everyone is the same. Would your GP refer you to a special clinic? I am being referred to a clinic in Great Yarmouth on the N.Norfolk coast.
I don't know where others are but there must be some!

I'm sorry i didn't respond earlier, I thought I would get emails alerting me to replies but I haven't had any for some reason.

I hope you are alright, thanks for responding! x
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Location: Norfolk

M.E and Panhypopituitarism, C.K.D and Cancer

Postby member_6154 » Fri Nov 23, 2012 11:00 pm

Hi Everyone,

I would like to introduce myself.
My name is Tony and have been member of the Foundation for many years although I must admit I do not come to the forum very often and do not post anything.

I came to the forum tonight searching for anybody who has had a similar experience to mine which might not be so unique after reading the earlier posts.
I was initially diagnosed with Cushings disease in 1979 and had a total bilateral adrenalectomy in 1980, my age was then 25.
I also had my Pituitary treated to the max dosage to shrink a tumour which was benign but was the cause of my illness.
I was then started on replacement therapy ie; hydrocortisone and fludrocortisone along with atenolol to control blood pressure and zantac to control stomach acid.
I had never experienced good health after that and have always suffered with muscle weakness and fatigue but still managed to hold down a job by basically using the weekend to recover with lots of rest.
This lasted until I became very ill once more in 1995 when I was finally diagnosed with Nelsons syndrome, my Pituitary tumour was back with a vengance.

After my transphenoidal surgery to remove my ptuitary I then hit a new low and have never recovered my health since then, and work was now impossible.
Naturally I now had no endocrine system of my own and so went on to full replacement,
including Growth hormone, Venlafaxine, more powerful antacid drugs (Omeprazole), Simivastatin, Amitriptyline, Lisinopril and finally Zopiclone to help me sleep. I would not have thought things could get much worse until 4 years ago when I collapsed through sheer exhaustion and could not get up from the floor.
The paramedics was called and they thought I had suffered a stroke as I could not talk properly and could not stay awake it was like my body had just given up .

Anyway to cut a long story short ( you must be kidding) they could not explain what had happened and I was also experiencing other strange symptoms so I was reffered to Prof Pinching ( Immunologist ) who daignosed that I now had M.E.

Over the last 2 yrs I have also been diagnosed with Polycythaemia ( too many red blood cells ) and have venesection for this ( removing blood ) and have also now been told I have stage 3 CKD, what happened to stage 1 and 2 I asked , it seems I have been overlooked.
They recently done a Ultrasound on my kidneys and a CT scan of all my torso which revealed that both kidneys are covered in cysts and I have a 10 cm cancer tumour on my right kidney.

Now I begin to question was the diagnosis of M.E correct or has everything been to do with kidnety disease and cancer.
I have been told unofficially that this was always on the cards as I have a comprimised immune system and long term use of steroids are a kidney killer.
I am now awaiting to go to Christies in Manchester to see what they can do as the oncologist who gave me the results thinks I will go into renal failure if they remove the whole kidney.
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Location: Cornwall

Re: M.E and Panhypopituitarism

Postby TCP » Sun Feb 17, 2019 2:04 pm

I know this is an old thread but I was interested to see the posts and replies and maybe I could add something to the feedback.

I became very ill in 1984 with Glandular Fever from the Epstein Barr Virus and I never felt well again. Soon after I had surgery to remove an ovarian cyst and it was hard to get over the anaesthetic (I have now to this day had general anaesthetic 7 times) I was finding it difficult to work and struggled with pain and fatigue. Nothing in my body seemed right. I repeatedly saw the GP and nothing ever showed up on tests. Eventually, I saw an item on the local news about ME and I wrote to the address of a charity that was linked to the item. They sent me back a letter and the list of symptoms totally matched mine. I had been looking in the library health section for months for any help and obviously this was long before the internet. I knew something was very wrong but I was starting to feel like I was going mad with my pickled fuzzy brain and rotten body. I ran the idea about ME by my GP and they told me to make an appointment with a charitable trust based on the local university campus. I got to see a professor of neurology who was a very unpleasant fellow and after poking, prodding, ridiculing me etc diagnosed ME. He expected a sizable donation which I hadn't expected and I left relieved I had a diagnosis but shaken because of the experience. This had taken 8 years to get diagnosed.

The following year I became a vegan and went on the anti-candida diet and also cut out gluten to a large degree. This was 1993. Over the next few years I slowly improved and my weight which had ballooned came down slowly. By the early 2000's I was getting more energy and feeling a lot brighter and was able to do more. I felt almost back to normal by 2002-2004. About this time I started to eat sugar and gluten again (big mistake). By 2005 my nails became ridged and brittle, I was getting strange sensations in my body, which I know now were linked to the nerves. I had an operation in 2006 to sever some pelvic adhesions from previous surgery. Within a short time after surgery I started to get red and painful big toes. I also developed pain in my left knee and into my buttock area.

In 2007 I started to develop more painful neuropathic pain all over and it was dramatic and shocking. I saw the GP multiple times and I thought I was going to die as I went off my legs with dizzy spells and all manner of other symptoms. I was taken to A&E 7 times with low BP and pain issues. I was admitted twice to neurology and spent 3 weeks there in total. The doctors decided that the way I was thinking had caused the problems. A typical response to someone with ME. They noted the orthostatic issues but never did anything about it despite my having a BP of 65/32 at one stage. I went home to suffer for years as I became more disabled and in pain. I was given Gabapentin and Nortriptyline, which I still take.

Over time I researched more about my health as in 2011 my HR and BP played up even more and the blackouts and dizziness worsened. I looked into Ehlers-Danlo type 3 and Postural Orthostatic Tachycardia. I had some dislocations in childhood and the IBS issues that ran through our family seemed to tie-in and my multiple spinal problems. I was eventually diagnosed with EDS by a rheumatologist and I score 7/9 on the Beighton Score which is high for someone my age. I was diagnosed with POTS by a cardiologist/electrophysiologist after two tilt-table tests. I still see the cardio and I take a beta blocker to calm my tachycardia. I believe that the EDS, which I was born with, is the underlying condition and that the ME diagnosis was incorrect.

Along with these conditions is Small Fibre Neuropathy which is hard to get diagnosed as it requires a punch biopsy and does not show up on an EMG or nerve condition test. I am hoping to get that done this year. I also have lots of intolerances and allergies and that is Mast Cell related so I am going to see an Immunologist this year. The POTS, EDS, MCAS, SFN etc are all linked. I now clean eat, vegan, no processed, no sugar, low carbs etc. I eat low-histamine foods. I find that this helps.

The tumour situation could have been going on for years as I had had a hysterectomy and breast reduction, so had no stopped periods or breast discharge. It was migraines for months and then an apoplexy that revealed the macroprolatinoma in 2017. I take thyroxine, cabergoline and hydrocortisone. The tumour was affecting my vision so I had it removed last September. I was in pain for seven weeks and now have sinus issues and need to see an ENT specialist. I have heard of a few people with my pre-exsiting conditions getting a pituitary tumour as well. I don't know if there is a link.

One good thing that has come out of all of this is that I have helped 8 people get the proper diagnoses of EDS and/or POTS and even mast cell.
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