Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Hey Guys,
I am new here, but I have been struggling with a host of issues since November. It started out that I was losing all muscle strength in my hands, this progressed to my arms and legs and eventually swallowing. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They suspect I have myasthenia gravis but we have no evidence of it. So I was sent for an MRI, where they found a lesion in my pituitary. My neurologist then sent me to a neuro-ohpthamologist (for droopy eyelid) and to an internist. The internist then sent me to an endocrinologist due to the lesion in my pituitary. They haven't been able to fully test all of my hormones as I am on prednisone due to the suspected Myasthenia.
I was however sent for the IGF-1 test which came back at 381ug/L with a reference range of 74-268. This seems pretty high to me, I am on prednisone, not sure that effects the test.
So I am wondering if that is high enough to diagnose me with Acromegaly. I am currently waiting for a followup MRI with contrast to get more information about the lesion. Any thoughts would be greatly appreciated!!!
Here are all of my current symptoms:
- Muscle Weakness (To the point I need help up stairs, etc)
- Muscle Fatigue
- Eyelid Droop w/ Cogan eyelid twitch
- Hands are shaky
- Fingers feel swollen, as if in hot weather
- Numb fingertips (Also with pain, feels like rug burn)
- Can't swallow properly, choking on food
- Constipation (must take PEG everyday)
- Muscle ache with the slightest exercise
- Thinning hair on head, extra hair on face
- Vertigo
- Sensitivity to sound, particularly in the mornings
- Breast size changes randomly (+- 1.5 cup sizes, unrelated to cycle)(Prolactin is normal)
- Sore wrists
- Zero sex drive
- Lower back pain
- Sharp abdominal pains (come and go)
- Brain fog/terrible memory
- Nipple sensitivity
- Constant headache (pressure and paid behind my nose and eyes and then squishing feeling behind my ears)
- Heart palpitations (Feels like my heart races and pounds at the slightest activity)
I am new here, but I have been struggling with a host of issues since November. It started out that I was losing all muscle strength in my hands, this progressed to my arms and legs and eventually swallowing. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They suspect I have myasthenia gravis but we have no evidence of it. So I was sent for an MRI, where they found a lesion in my pituitary. My neurologist then sent me to a neuro-ohpthamologist (for droopy eyelid) and to an internist. The internist then sent me to an endocrinologist due to the lesion in my pituitary. They haven't been able to fully test all of my hormones as I am on prednisone due to the suspected Myasthenia.
I was however sent for the IGF-1 test which came back at 381ug/L with a reference range of 74-268. This seems pretty high to me, I am on prednisone, not sure that effects the test.
So I am wondering if that is high enough to diagnose me with Acromegaly. I am currently waiting for a followup MRI with contrast to get more information about the lesion. Any thoughts would be greatly appreciated!!!
Here are all of my current symptoms:
- Muscle Weakness (To the point I need help up stairs, etc)
- Muscle Fatigue
- Eyelid Droop w/ Cogan eyelid twitch
- Hands are shaky
- Fingers feel swollen, as if in hot weather
- Numb fingertips (Also with pain, feels like rug burn)
- Can't swallow properly, choking on food
- Constipation (must take PEG everyday)
- Muscle ache with the slightest exercise
- Thinning hair on head, extra hair on face
- Vertigo
- Sensitivity to sound, particularly in the mornings
- Breast size changes randomly (+- 1.5 cup sizes, unrelated to cycle)(Prolactin is normal)
- Sore wrists
- Zero sex drive
- Lower back pain
- Sharp abdominal pains (come and go)
- Brain fog/terrible memory
- Nipple sensitivity
- Constant headache (pressure and paid behind my nose and eyes and then squishing feeling behind my ears)
- Heart palpitations (Feels like my heart races and pounds at the slightest activity)
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Cortisones (Predisone) do affect the behaviour of the pituitary function, and can suppress GH production in people with Acromegaly - so you may need to keep this in mind - but if you have another condition perhaps it could influence your pituitary differently.
It may well be worth you having a consultation with an Endocrinologist. There may be multiple endocrine conditions interacting, and they would be best placed to do the detective work if it is suspected to be a an endocrine condition.
You sound like you've researched various things for yourself too. That's a brilliant thing - I found that the more I researched my condition the better control I had over it. Understanding it really helped me conquer the concerns, and then made me really interested.
The strange thing about endocrine conditions (if it is in your case), is that there are so many interactions. One hormone will go high, driving others down, but there are other intermediate (in-between) interactions that then have an effect too.
I looked at the Gastro-Intestinal effects resulting from something as simple as excess growth hormone, and it very much resulted in a lot of interactions. Pretty complex stuff - but an endocrinologist is best place to look at these effects.
All the best in your diagnosis - and your treatment. Keep praying.
Trys
www.acromegaly.wordpres.com
Are they at all able to give you an OGTT test? This is the defining test for Acromegaly when other tests are inconclusive or uncertain for other reasons.
I had a high "normal" IGF-1 recently but all the symptoms again. They gave me the OGTT test and it was positive, so they said the disease is active and have just started medication for it.
You know, in my experience, as isolating and confusing my physical ailments have been, I have become so much more self aware so that I can be more on top of the roots of any issues that arise. My endo says she wishes all her patients knew their bodies so well :P Alternatively, I've learned that when things are confusing and I feel fear because of bizarre but concerning symptoms, I turn to God and take the focus off myself. Then I am able to be able to acknowledge my symptoms when necessary to the right people, without them blocking me from joy :)
We are all here for you! Hang in there, and know you are loved by many you don't even know.
Lauren
Lauren, I am assuming that the OGTT test will come if the second IGF-1 and GH test come back high. I had assumed that prednisone would not affect the IGF-1 test and that is why I had been sent for it, but now I am not soo sure. What can affect that test? I must say all of this medical stuff is a bit isolating. I am soo tired all of the time I am in bed by like 7pm. I am also too weak to drive at times, so I don't have much of a social life. I am just soo thankful I have a very supportive boyfriend who has made all if it not nearly as horrible as it could be.
I still have a fear that all of the tests will come back normal and I will once again be back to scratch.
Thanks soo much for all of the love guys, helps to not feel all alone in this. I shall keep you all updated as I learn more.
-Ashley
AM Cortisol after Dexamethasone 6 nmol/L
Calcium 2.35 mmol/L
Phosphorus 1.24 mmol/L
T4 Free 15.3 pmol/L
FSH 2.2 IU/L
LH 1.7 IU/L
Prolactin 17.2 ug/L
AM Cortisol 284 nmol/L
Estradiol 342 pmol/L
GH 1.7 ug/L
Apparently all of them are normal including this low of a GH? I am very confused as to my IGF-1 being high last time. I guess I wonder if it is true that is possible to have a IGF-1 and a Normal GH? I am worried that if my next IGF-1 comes back normal that they will rule out that this lesion in my pituitary is causing any problems.
Had surgery in 2012 but IGF-1 climbed again & I am on somatuline depot. Igf1 still climbing, now high normal & symptoms back.
Anyway.....had OGTT in sprig & range was completely normal. Am having thyroid issues & in process of diagnosing that. Anyway, I read that there is a segment of people who have high IGF-1 but OGTT stays normal. This is b/c of when growth hormone is secreted in different individuals. The only truly accurate way to measure GH by OGTT would be to monitor someone every 15 min for 24 hours....clinically not feasible.
Bottom line, my research disclosed that IGF-1 is the gold standard for acromegaly. And, in fact, mt tumor was removed having never had an OGTT. My first one was this spring.
My point is, it all depends on who is looking at your records/studies. My current IGF-1 has climbed up from post-op, but is not quite out of the normal range. My symptoms, though, are significant. I'd get those records in my possession & peddle them to every qualified endo (pituitary is a sub-specialty) until someone took a close look at the whole picture.
This, too, is easier said than done, I know.
Baseline: 1.04 ug/L
0.5h: 0.13 ug/L
1.0h: 0.1 ug/L
1.5h: 1.15 ug/L
2.0h: