Help and Advice

Help and Advice

Postby member_43450 » Wed Apr 19, 2017 7:26 am

I have been dealing with undiagnosed illness for 10 years which started with some head rush type symptoms, pain behind my right eye and dizziness and feeling very unwell. I have episodes of being very unwell followed by periods of feeling much better but have noticed changes to my appetite and ability to put on weight. Every test I have comes back as normal or clear yet it continues and I am losing more and more weight in an episode of being unwell. In Jan this year I had another episode of illness that includes weight loss,overactive thyroid, adrenaline rushes,
headaches, dizziness, blurred vision, body temperate changes, appetite changes, dehydration so I asked my GP to refer me to an endocrinologist as I think it may be a pituitary problem. I am told my tests are normal with the exception of estrogen levels which suggests I'm post menopause now. This has been the worst episode to date and I continue to feel unwell and very frightened by some of the things that happened.

Can you still have normal test results but still have a pituitary or hypothalamus problem? Is it possible that the glands can malfunction and are there tests that can be done to check this.

Any advice or help would be appreciated.

Thanks
GIll
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Re: Help and Advice

Postby MikeDCross » Wed Apr 19, 2017 3:53 pm

Gill,

Doctors always quote the normal range; this does not take into account what is "normal" for your body. I would suggest having blood tests when you are ill and well, and see if there is a difference.

Mike
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Re: Help and Advice

Postby Carl » Thu Apr 20, 2017 9:12 pm

Hi Gill

It is so difficult when you have such a mix of symptoms that could be related to Pituitary and general Endocrine disorders, but equally could be all sorts of other things. You mention body temperature which could be linked with Thyroid and dizziness/headaches/blurred vision which could be pituitary related. Have you had a test on your Cortisol or ACTH levels or an MRI scan to check for a pituitary issue?

When I was diagnosed with my pituitary tumour (now removed) my blood tests showed very low Cortisol and non-existent Testosterone levels, as well as several other hormones out of whack. I certainly had the dizzyness and blurred vision, but not the headaches....I also had a lot of body hair loss.

But it is a complicated area, might be worth ringing the foundations endocrine nurse helpline, she could perhaps give you some guidance to speak to your doctor and what tests you would need to definitely rule in or rule out a pituitary issue.

whatever it is, hope you get to the bottom of it soon.

Cheers, Carl
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Re: Help and Advice

Postby Mgh » Sat Apr 22, 2017 8:21 pm

Hi Gill
Your story sounds familiar. I had repeated blood tests over many years that did not identify any definite line for inquiry. There can be so many different reasons for the range of symptoms.
I was diagnosed when my vision problems showed up in a visual fields tests. I had my eyes tested on two previous occasions but nothing was picked up even though I explained my visual symptoms on each occasion. My field of vision was at the stage to prevent me from driving when it was eventually picked up. An MRI scan followed which showed a macroadenoma. Blood tests also eventually showed raised prolactin levels. I had transphenoidal surgery within six weeks. The main concern at that stage was to prevent further deterioration of vision. Post surgery my vision recovered to the point where my visual fields improved enough to enable me to drive.
Have you had a visual fields test or an MRI scan? If not, perhaps it might be worth investigating. Are you keeping a diary of what is happening, your level of activity and your varying symptoms? Perhaps you may be able to notice a pattern.
I hope you find some of these ideas helpful and that you are able to find the reason for your various symptoms.
Maria
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Re: Help and Advice

Postby member_43450 » Sun Apr 23, 2017 12:27 pm

HI Maria
Thanks for the reply. Over the past years I kept diaries but when seen by various consultants they would not entertain them or even look at them. I have started again this year because I have been so poorly and I am just fighting to get doctors to take me seriously but how can I when the medical evidence says there is nothing wrong. 9 years ago I had an MRI but nothing showed up at that point. I recently went for an eye test and the optician said that my periphial vision was ok but the nerve endings at the back of my eye were not right and should be checked so I am waiting for a referral to see if that shows anything up. Does the level of activity you mention help to determine anything? I feel so unwell some days at the minute that I am struggling to go about my daily life and after 4months of feeling so unwell my emotional and mental health is now compromised. Whilst I am not depressed I think I may end up off work with stress or going on antidepressants.

I started th HRT that was prescribed and within 3 days I felt worse than ever.

Appreciate any further help you can offer.

MAny thanks
Gill
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Re: Help and Advice

Postby member_43450 » Sun Apr 23, 2017 12:35 pm

HI Carl

Thanks for the reply, I have asked to get a copy of the recent tests that I had done so that I can see what I have been tested for and understand the results.

DO you know if there are tests to check how the gland is functioning? Some days I feel well and therefor if I am tested on one of these days expect the hormone levels may be ok but when I am bad I can't just walk in to a hospital or doctors surgery and get the tests.

Recent weeks I have had numbness and a dead arm so I do think I should be given an MRI scan but the endocrinologist did not mention this as the blood tests were normal.

I feel I am fighting to save myself at the minute with very little support or understanding from my GP who thinks this is all in my head. I am a very level headed and sensible person with a good job and wouldn't wish how I feel on anyone.

Thanks
GIll
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Re: Help and Advice

Postby Mgh » Sun Apr 23, 2017 8:59 pm

Gill, I think you would find it helpful to have a phone conversation with Alison, the Pituitary Foundation nurse. The contact number and times are on the website. Sometimes the lines are very busy but it is worth being patient! She is very experienced, knowledgable, supportive and easy to talk to. If anyone can point you in the right direction, she can. Meanwhile look after yourself day to day, lessen the demands on yourself while you try to get to the bottom of what is going on.
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