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.

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Bashley17 05/20/2014

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)

Trys 05/21/2014

You have my heartfelt sympathy and hugs. Keep your spirits up as well as you can. You're on the path of diagnosis, so that's great - as frustrating it is at the moment.

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

Bashley17 05/26/2014

Thanks soo much for your thoughts Trys. I did see an Endocrinologist, but she said she couldn't do too much until my follow up MRI and until I was off the steroids. So at the direction of my neurologist I am currently in the process of weaning off of the Prednisone so that we can test all my hormones and do a swallowing test. I am down to 5mg and am already struggling to swallow and breathing is getting difficult. I am also exhausted all the time and all my limbs feel like lead. Worst part of all of this is the feeling awful and having to wait. I don't get my next MRI until June 6, see the Neurologist again on June 17 and then Endocrinologist again on June 26. I just want my life back!

J0KEYJ 05/28/2014

This conditon can really give anyone a run for its money..even the medical profession..whats scary is how this conditon is left for many whilst they wait..the damage is being done and thats when youre more than likely to get diagnosed and then youve probably got a harder battle to undo the damage of whats happened..I cannot say by youre list if you do or dont have acromegaly as even a medication can cause side effects... one on youre list you havent added in is youre bloodpressure..

Bashley17 05/28/2014

I always used to have very low blood pressure, I believe it is now normal. So higher than it always used to be but nothing of concern I am told. I talked to my Endocrinologist yesterday and she says she is going to repeat the IGF-1 once I am off the steroids as well as do Cortisol and ACTH and a Dexamethasone Suppression Test. I hope after all of this we have some answers. It is funny how at the start you just want good news that everything is OK. I am now to the point where I want abnormal tests, because then I would at least know what is wrong with me and can get help to fix it.

J0KEYJ 05/28/2014

I know the feeling of that one..to say see I have something really wrong and also then knowing you can then take action ..because you have a diagnosis..

J0KEYJ 05/28/2014

have you had thyroid checked.?

Bashley17 06/02/2014

I have had my thyroid tested, when I was on prednisone my TSH kept dropping, going as low as 0.27mU/L. So I was sent for a full thyroid panel, which came back with TSH of 0.36mU/L, T4 Free of 16.8pmol/L, T3 Free of 4.4pmol/L. So they were pretty normal. I talked to my endocrinologist last week as I am going to come off the steroids completely. So she is sending me for a bunch of tests, after I have been off the steroids for a week, 8am Cortisol, ACTH, Prolactin, LH, FSH, Estradiol, Free T4, Calcium, Phosphate, GH and redoing the IGF-1. Then will also do a Dexamethasone suppression test, so take that at 11pm and then have the Cortisol redone the following morning. I really hope that these show something, just want answers :)

furkidmom 06/02/2014

Bashley, sounds to me like your Endo is on top of things. They are checking you for everything, and doing it all at once instead of .. check this, see what that comes back, then check that, wait for those results, then check the next thing.. etc Some of your symptoms sound like Acro (swollen hands, facial hair, back pain), but others not so much. So as someone else said, you may have more than one thing going on keep us informed

warmcommunique 06/03/2014

I'm so sorry to hear about this. It's so frustrating when you may have an answer FINALLY and yet it's only within the grasp of your fingertips until the "doctors" say they are able to give a diagnosis.

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

Bashley17 06/03/2014

Yeah, it seems most doctors think I have multiple things going on. The consensus seems to be the Myasthenia Gravis, with the pituitary lesion which may or may not be doing anything and Chronic Fatigue Syndrome. I however am not much of a believer in CFS, I think it is what doctors use when too lazy to sort out the real problem.

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

Bashley17 06/12/2014

So I got off the prednisone and had my blood tests. I have all back except the ATCH and the second IGF-1 which usually takes a week. They are below:

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.

deleted_user 06/13/2014

It is common to have a low or normal GH on blood test w/acromegaly & high IGF-1. They were exactly my readings when the dx was made.

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.

Bashley17 06/18/2014

So I got my last IGF-1, it has gone down a little to 297 ug/L with a range of 74-268 ug/L so it is still a bit high, although it was done fasting. The test previously had been The MRI also came back and the lesion hasn't grown and didn't absorb any of the contrast, so they think it is just a cyst. 381 ug/L. I have another appointment next week with the endocrinologist, so I hope she will send me for an OGTT test. I am not sure if it still high enough for them to do anything about it or if they will just say it is close enough to normal. However don't you kind of want it to be in the lower 1/3 of your range?

deleted_user 06/21/2014

Before we knew I had acromegaly, the pituitary tumor was found as an 'incidental finding.' My primary was ordering annual MRIs on it and they kept saying it was inactive and/or the same. But, when I finally did see the endocrinologist & the surgery team, they agreed that the tumor had grown during that time (though not a lot). And, certainly, my IGF-1 showed that it was active. In hindsight, though, I do think there was a period of time when it wasn't, as the symptoms had subsided for a while.

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.

Bashley17 07/08/2014

So I saw my Endocrinologist again and she felt that I didn't have Acromegaly and that high IGF-1 was just my normal. But to make us both feel better I was sent for the Oral Glucose suppression test. Here were the results:

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:

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