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Symptoms ......

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Symptoms ......

Post by Jasmine2 on Tue May 13, 2014 8:30 am

Phew! Glad that night is over! Probably the worst night I've ever had symptoms-wise since dealing with this rotten disease! Couldn't sleep anyway as normal but had horrendous gastric reflux (never had it that bad before), bone pain in my hands, feet and shins, muscle cramps galore, and the strangest sensation of a whooshing sound inside my head like I could hear the blood circulating around my brain.  I've had that before but not regularly so don't know if it's HPT related.  To top it all off I was in the middle of a 24 hour urine collection so had to mess around with that too every time I got up for a wee!  Nightmare .......! Feeling tired and worn out and I've only just started my day!  OK, rant over.....I can feel a snooze coming on .....

Jasmine x
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Re: Symptoms ......

Post by Little Audrey on Tue May 13, 2014 10:45 am

My goodness, Jasmine, what a night! So sorry to hear you had such a rough one!  Crying or Very sad  Hopefully, you're feeling a bit better now, and tonight will be a much better night for you.

Yes, that darned 24-hour urine collection is enough of a bother all on its own. You don't need more to add to that enjoyment!

Praying for a better day for you!

Audrey

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Re: Symptoms ......

Post by Lucycatnaps on Tue May 13, 2014 12:28 pm

Hi Jasmine,
Gosh , that does sound rough and although I have not slept well for the last couple of nights, I know the cause was my endo appt today, I suspect I will sleep a bit better tonight.  I felt drained by the time we got home from the hospital and am going to put the blinkers on and ignore the H word, there is always tomorrow.  Hope you managed a snooze and are feeling a little more human now.  I just need to learn how to breathe out, I get so tense at times.
Sue x
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Re: Symptoms ......

Post by Brigitte0 on Tue May 13, 2014 4:04 pm

Oh Jasmine, sorry to hear all that. Hope your day improved as it went on.

Sending you lots of virtual hugs.

Love Brigitte x
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Re: Symptoms ......

Post by Amanda Lynne on Tue May 13, 2014 10:44 pm

Hi Jasmine so sorry to hear you are having such a rough time. I've had the whooshing in my head before it's awful.
Love Amanda xxxx
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Re: Symptoms ......

Post by Tigerlily on Tue May 13, 2014 11:28 pm

Hope your day improved, Jasmine, and that you get some sleep tonight.

Love Tigerlily xx

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Re: Symptoms ......

Post by Kathi209 on Wed May 14, 2014 3:06 am

I know how you feel Jasmine just did my 24 hour urine test also. I'm hoping  for the best for you and well for all of us.

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Re: Symptoms ......

Post by Tigerlily on Wed May 14, 2014 4:41 am

Hi All

Can't sleep - so I thought I'd just join the club and say I'm doing my 24-urine test this week as well (for the second time).

It's "all go", isn't it?!!

Love Tigerlily xx

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Re: Symptoms ......

Post by Amanda Lynne on Wed May 14, 2014 7:31 pm

Hi All
24 hr wee wee done and bloods returned first thing Monday. Rang Endos secretary to tell her to give the Registrar a big nudge. I don't know how long it takes to get urine results done but I'll be ringing on Monday if I haven't heard.
Amanda xxxx
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Re: Symptoms ......

Post by Kathi209 on Thu May 15, 2014 2:08 am

Amanda
I did my blood work 2 days before I turned in the 24 hour and within 3 days had the results of that , I ask my endo to e mail me the results on urine serum calcium and pth, but the only results that came back was the urine, so I am still waiting on the rest. Maybe yours will come back as quickly as mine did.

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Re: Symptoms ......

Post by Amanda Lynne on Thu May 15, 2014 1:25 pm

Thanks Kathi 
I'm waiting for Endo registrar to check urine do calcs and decide if she thinks I may have FHH which I'm sure I don't. 
If it's anything like my last time waiting for her I'll be on the phone a few times before I get an answer.
Amanda xxxx
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Re: Symptoms ......

Post by Tigerlily on Thu May 15, 2014 1:57 pm

Hi Amanda

Yes, I notice that FHH is familial HYPOcalciuric Hypercalcemia.
So if we have excess calcium in the urine we obvs don't have this!

I've developed a few more symptoms recently that are making me look at a pituitary problem, as this can underlie other endocrine problems, including HPT, hypothyroid, etc. Do I recall correctly that you've had a bad headache for some time?

I've had one for some weeks now and it does not seem to shift. Also, I find it uncomfortable to put pressure on my head in any position in bed on the pillow, and lying flat on my back is particularly uncomfortable at the back of my head. My whole face and jaw area aches like anything and my tongue seems too large for my mouth. I thought the aching lower teeth were to do with my heavy huge tongue lying on them and pushing them apart and forward, but it appears that expansion of the space between teeth of the lower jaw can be due to acromegaly - or - a pituitary problem, possibly a space-occupying pituitary adenoma.

Unfortunately, there is also something called Hyperparathyroid-Jaw Syndrome due to jaw tumours. I haven't really wanted to go there in my research but it is a consideration. It seems to affect younger people but can also appear later. Because of the head pain and large tongue, my default facial expression is a bit "potty" looking so I'm trying to find a reason for it!!

I was just thinking of you and your headache and wondered if you have had your pituitary hormones checked? I presented all this information to my GP this week and he agreed to check mine and the ones that have come back so far would indicate compromised pituitary function (which can be sometimes hyper and sometime hypo secretion). Mine looks a bit hypo at the mo:

Growth Hormone:0.33 (normal range is 1-16)
IGF-1:                  0.8  (range 11.8 - 28.6)
ACTH - just waiting for this as it takes longer.

LabTestsOnLine states that IGF-1 is tested to detect pituitary disease and investigate decreased bone density (I have osteopenia at L. hip and various other bone issues), reduced muscle strength (I am an 11 stone weakling !!), and increased lipids (I am seen at Addenbrookes' Lipid Clinic for high cholesterol, high LDL, and triglycerides, but these do seem to fluctuate a lot). So I have a full set of these 3 indicators!

I know this all sounds a bit "me, me" but I find it really useful when other forum members post their actual results for comparison - and I had in mind your unrelenting headache when I originally started to post this. Does any of this sound familiar to you, Amanda?

And hopefully anyone with medical knowledge will also chip in here, since we are blessed with several of these as forum members.

Love from Tigerlily xx

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Re: Symptoms ......

Post by Amanda Lynne on Thu May 15, 2014 4:30 pm

Hi Tigerlily 
Yes I have a constant headache which I'm not sure if it's due to all the muscles in my neck shoulders and back either rock hard, in spasms or both !!
Also I'm having reading glasses made as my optician thinks my lenses are causing me to strain my eyes when doing close up work. So it could be a combination of both or one or the other. I've had this several times. Badly in March last yr and also in September. A combination of chiropractor and change of contacts seemed to help it go but that could be coincidence.
It is uncomfortable at times to lay down with it. The pain radiates from base of skull to around front of temples and forehead (classic tension headache but mine last for up to a month) 
My jaw does ache but I put that down to clenching jaw in night because I'm uncomfortable, could I be wrong ?
I also have a very twingey lower back could be caused by tension in rest of back and neck ?
The problem is I just don't know I dread going back to my GPs because I go in there and tell them the problem and all I get is blank looks and they try to give me Tramadol and Diazepan. I won't take either even though they say Diazepan can relax muscles, I don't want b****y Valium how ever they try to sell it to me.
Do any of these symptoms sound similar ? My headaches are definitely worse when I'm on iPad or iPhone so I'm trying to lay off them.
Thanks for all your knowledge and help I hope you too get some answers to this, I'm afraid life isn't much fun ATM.
Love Amanda xxxx
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Re: Symptoms ......

Post by Tigerlily on Thu May 15, 2014 7:09 pm

Hi Amanda
So sorry you're going through all this at the moment, but it is all sounding very familiar to me: bone, back and jaw pain, constant headache, and the connection with your reading glasses/optic nerve.

Vision problems are a classic symptom of pituitary issues because a pituitary adenoma could be pressing on the optic nerve. I have lots of other cranial nerve problems myself (intermittent facial neuralgia, trigeminal neuralgia, a jaw that seems to move of its own accord, but don't mention that to my husband! a frequent tic under my right eye and a tic in the same eye's eyelashes). Visual field defects are common with pit. disease as well as not being able to see the red numbers out of the green background when they do that test with the cards at the eye clinic. I failed that one dismally! Also, drooping eyelids, which I also have.

I don't want to worry you with all my research, Amanda, just to make a few suggestions, because your case sounds rather like mine, even though I haven't been diagnosed with HPT yet. I was wondering if your HPT problems not having been solved by the operation might be due to the fact that it is a pituitary problem first and foremost, as it is the pituitary (and further up again, the hypothalamus) that conducts the endocrine orchestra (sorry, I keep using that image, but it makes it quite clear). I think that's what happening with me: low thyroid function, hyperparathyroidism, absolutely no libido, high anxiety, abdominal fat that won't shift, and visual field defects in spades, amongst other things.

Apparently, a pituitary adenoma is just like an HPT one. It's not a brain tumour or anything like that. However, it can take up more space than it should in the pituitary fossa at the back of the head/neck, where both our headaches seem to be, and thus cause face and jaw aches and pains. My eye sockets are also very uncomfortable.

When you feel up to it, and I realise that not everyone has the energy (I must just be in a hyper- phase at the moment, and I can't sleep at night either - which is another symptom of pituitary disease ..), have a look at these documents and see if, like me, you can tick off a lot of the symptoms:

http://endocrinesurgery.ucla.edu/patient education adm pituitary tumour.html

http://bestpractice.bmi.com/best-practice/monograph/1030

http://www.patient.co.uk/doctor/cranial-nerve-lesions

I know just what you mean about the blank looks from GP's (and even worse from the receptionists - that "not you again" look!!). Basically, unless you are very lucky, there is no-one within the medical profession to take an overview of the whole symptom picture and do the joined-up-thinking until you get to specialist level, like Fausto Palazzo or (I hope) Dr Miles Levy. Luckily, my GP does listen to me, but he's the one with whom it's difficult to get an appointment. But when I do see him, he gives me time to give him "the HPT course" and now the pituitary one! The 2 endo's I've seen have not been much help at all, I have to say. And if it ever turns out that I have HPT and now a pituitary problem that they haven't noticed, despite my giving them all the prompts and evidence for, I am going to be very cross with them. Oops, got into rant mode there, sorry!

See you again on here, Amanda, when you feel like it. I see Miles Levy next Thursday so will let you know what he thinks. Take good care of yourself.

Love from Tigerlily xx

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