Not a pituitary tumor!

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Acromegaly, Addison's Disease, Blood test, Endocrinologist, Glucose tolerance test, IGF-1, OGTT GH, Pituitary adenoma, Pre-diabetes

I passed my Oral Glucose Tolerance Test for Growth Hormone suppression (OGTT GH)!! Yeah!! My growth hormone was “nicely suppressed” as Dr P (endocrinlogist) put it.  She said they want it below a 0.25 to a 0.4…. and it was.  I agree with her that everything looks good, but I’ll do a bit more research just to be sure – I’ve found that it is never a good idea to put all faith in doctors since they frequently mess up, and never admit it.  LOL

These are my results:

• 0 min  =  HGH  0.4 ug/L
• 30 min  =  HGH  0.1 ug/L
• 60 min  =  HGH  0.1 ug/L
• 90 min =  not recorded for some reason, or it was put into my 120 minute result instead
• 120 min  =  HGH  0.1 ug/L
• 180 min  =  HGH  8.0 ug/L  * I was not tested at 180 minutes but she did do an extra blood glucose test so I think the HGH times were messed up. 90 minutes is probably 120 minutes, and 120 minutes is probably 180 minutes result.

So it started low, got lower, and then went pretty high after 2 hours… I think that’s okay. As I said, more research needed, but at this time it looks like I don’t have acromegaly!  🙂

I wonder why my IGF-1 is a bit high? Genetics? Diet? Fluke? What?  Weird.  I am calmed about this. I had a feeling it would be good news on this front.

The bad news:

Dr P did say “prediabetes” to me. It’s official. I am prediabetic. Darn. I need to change my diet more and give up the good stuff… Not that Dr P said that – all she said was “discuss it with your family doctor”. You’d think an endocrinologist would have more to say than that, but nope.

She did mention that my hydrocortisone could be partially to blame. She said that drug is”not benign” and I agree. I’m more than a little pissed that Dr J started me on it without testing for Addison’s disease, and not I have secondary Addison’s because my adrenals are shutting off BECAUSE of the steroids. Ugh! I should have researched that more before taking those drugs…

Anyway, as for the Adrenal antibodies test for Addison’s disease, it’s not in yet. I go back in ANOTHER month to get those results. It’s not the best test for Addison’s but it will tell us more. She did mention that doctors prefer to do the ACTH stimulation test to test for Addison’s, and that she wishes that Dr J (orthomolecular doctor) had done that before “starting me on a full replacement dose of steroids in treatment of Addison’s”.  Um, yeah!

She discussed getting me off the hydrocortisone (20mg) and fludricortisone (0.1mg) in the future for more testing. She wants me to get the exact dates that I started on those meds and bring it in the next time I see her. I’m guessing that will affect how she wants to wean me off those drugs.

I am very nervous about how dependent my body is on those steroids already. I mentioned that I have been getting light headed again lately and she said that it could be neurological because I am already on a full dose of fludricortisone. Don’t know if I agree with that.

She also wondered about thyroid testing, after I mentioned how I shake all the time, and then noted I am hypo. I told her that I have been hyper once in the past when I started on too high a dose of Erfa’s Thyroid (NDT) so I don’t think my shakes are hyper. She said it might be neurological and to see my family doctor…. I need an eye rolling smiley face here. LOL

Back to the OGTT, I asked about hypoglycemia and she said a flat no, it’s not. My blood glucose levels just fell nicely to 4.9. I noted that the nurse said it was down to 4.5 and I believe her response was to shrug…. helpful. I am definitely on my own when it comes to dealing with hypoglycemia.

Anyway, this is my OGTT glucose test results:

• 0 min  =  6.1 mmol/L   (prediabetes starts at 6 and goes to 9)
• 30 min  =  9.6 mmol/L
• 60 min  =  7.0 mmol/L
• 90 min  =  6.2 mmol/L
• 120 min  =  4.9 mmol/L
• 180 min  =  4.5 mmol/L  –  Once it hit that level the nurse had me have a snack and then retested a few minutes later to make sure it wasn’t still falling – it was still a 4.5 so I left.

At 90-180 minutes I wasn’t feeling my best. I became hard to read and concentrate and I did feel a bit sleepy. Didn’t feel horrible, but I was far from my best. I guess that’s when I was falling past my “normal prediabetic” level of 6.1.

These are my other test results:

• Mitochrondrial Antibodies  =  negative
• Vitamin B12  =  867 pmol/L  (155-700) High
• Estimated GFR  =  113mL/min/1.7  (normal is >60mL/min/1.73)
• Calcium  =  2.38 mmol/L  (2.10-2.55)
• Creatinine, serum  =  55umol/L  (35-100)
• Glucose, random  =  6.1 mmol/L  (3.3-11.0)
• Albumin  =  37 g/L  (33-48)
• Sodium  =  138 mmol/L  (133-145)
• Potassium  =  4.0 mmol/L  (3.3-5.1)
• Chloride  =  104 mmol/L  (98-111)
• CO2 content  =  22 mmol/L  (21-31)

B12 is high again…. No idea why that is always high.

Creatinine is on the low end of normal and my urine creatinine was a bit high. Same with my sodium, which was higher than it normally is (urine sodium was very high last time).  CO2 is a bit lowish… Those tests would point to Addison’s, although chloride would have been lower too, and potassium may have been higher.

Not sure why she ordered the mitochondrial antibodies. Glad my liver is fine though.

Gotta make the kids lunch – more research later.

Addison’s Disease?

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Addison's Disease

The other week, the endo mentioned that she was testing me for Addison’s Disease. At the time, I dismissed it; I figure with the health issues I’ve had in the past, we would have discovered it by now but after the reading I’ve done lately… well, I’m a bit nervous.

AI diseases run in clumps and I’ve already got a few. In he past, my 24hour cortisol test was at the low end of normal, and I do have postural hypotension, and some of my other hormones are low too…Could I possibly have this too? Geez, I hope not.

The OGTT Test is Done

Tags

Acromegaly, Blood Glucose, Endocrinologist, Glucose tolerance test, OGTT GH, Pre-diabetes

I had my OGTT GH suppression test first thing this morning and the procedure went smoothly. I got there on tome, had exact change for parking, remembered to bring books, a snack and my lumbar pillow (back is acting up after a header on the sidewalk), my nurse, Brenda, was just a super sweet lady, and I got to sit and read in peace for over three hours… The only way it could have been better was if the chair was more comfortable and I had a coffee with coconut cream in it. Mmm.

As an added bonus, Brenda did my other blood labs too so I didn’t have to book a second appointment. Yeah!

I won’t know the results of the GH suppression tests until I see the endo for my next appointment but I did get the readings of my blood glucose – I think. There is always a chance I misheard so I might be incorrect, but this is what I remember:

1. 0 minutes  =  (Blood glucose)  6.1  (I think the range was 4.0-6.0 but I’m not sure of the lower limit) This was done after 13 hours of fasting – for dinner the night before I had a piece of birthday cake. After the blood was drawn I was given a very high glucose drink.
2. 30 minutes  =  9.1 (could have been 9.0?)
3. 60 minutes  =  6.0
4. 90 minutes  =  5.5
5. 120 minutes  =  4.5 (she rechecked that 10 minutes later after a short snack to make sure it wasn’t still dropping)

Soooo, my fasting glucose was dipping into pre-diabetic readings, and so was my highest glucose reading. I think my high became high faster than normal too; it seems to me, from what I have read, that the 60 minute reading is often the highest.

The oddest thing is how my blood glucose fell BELOW my fasting blood glucose levels after the initial high… That’s just strange. Why would I have lower blood glucose levels one to two hours after consuming a high glucose drink compared to my initial, fasting blood glucose levels when I hadn’t eaten anything for half a day!?  And the last thing I ate was a piece of cake for dinner – it wasn’t a huge piece either.

That drop in blood glucose seems to show reactive hypoglycemia… I think. I’ve always believed I was hypoglycemic based on my symptoms but I was never sure. I’ll bet that I’m correct about it now though!

Oh well. I’ll know more in a few weeks when I see the endo, Dr P, again.

OGTT GH Suppression Test Ordered! Woohoo!

Tags

Acromegaly, IGF-1, OGTT GH, Pituitary adenoma, Pituitary Tumour

The lab called and I get to go for my oral glucose tolerance test for growth hormone suppression test on Monday morning. Is it weird that I am excited?  LOL

I’ve been waiting for this test for a good seven months… I can’t wait to actually know what I am dealing with! Either I have acromegaly and some sort of pituitary adenoma or I need to completely revamp my diet so I can lower my IGF-1  or I naturally have high IGF-1 and this is fine… I doubt that last one. LOL I’ll either have a better diet or a lump in my brain. Hmm I guess the better diet regardless would probably help either way, wouldn’t it?

I should know sometime after Valentine’s Day.

On another exciting note, I am turning 40! My brother and his sweet wife are even hosting a party in my honour. Life is good.

First Endocrinologist Appointment

Tags

Acromegaly, Blood test, Endocrinologist, IGF-1, OGTT GH, Pre-diabetes, Thyroid-stimulating hormone

I had my endo appointment today and it went fairly well. Dr P is a nice lady and didn’t seem too know it all – refreshing.

Here’s my labs:

• Adenocorticotropic Hormone  =  1.6 pmol/L  (2.0-11.5)
• IGF-1  =  265 ug/L  (76-277)
• FSH  =  5 IU/L  (depending on cycle time it’s 1-33)
• Prolactin  =  11 ug/L  (0-25)
• LH  =  6 IU/L  (depending on cycle time it’s 1-76)
• Ferritin  =  93 ug/L  (13-375)
• Cortisol AM  =  892 nmol/L  (200-690)
• TSH  =  0.04 mIU/L  (0.20-6.00)
• Estimated Glomular Filtration Rate (GFR)  =  110 mL/min/1.7   (<60mL/min/1.73m2)
• Alkaline Phosphatase  =  38 U/L   (30-115)
• Cholesterol  =  5.35 mmol/L  (3.80-5.20)
• Triglycerides  =  0.67 mmol/L  (0.60-2.30)
• HDL  =  2.17 mmol/L  (>=0.91)
• Total : HDL Ratio  =  2.5
• LDL calculated  =  2.88 mmol/L  (2.00-3.40)
• Creatinine  =  61 umol/L   (35-100)
• Fasting Glucose  =  6.0 mmol/L  (3.3-6.0)
• Hemoglobin A1c  =  5.8%  (4.3-6.1)
• On the complete blood count, everything was normal except Eosinophils which was 0.8 (0-0.7)

So my IGF-1 was within normal limits this time but it’s still at the upper end of the range, which they have lowered from 284 to 277. Dr P agreed that it is high enough that it should be checked so she has an ordered the OGTT GH suppression test!  YEAH!  That only took seven months to get! LOL

She also checked me for acromegaly symptoms,  and then she agreed with me that I really don’t have many. Mainly it is foot growth… I went into other symptoms on my last post. I’ll know more after the OGTT GH test which will hopefully happen within the month, and then I am back to the doctor two weeks after that. I need to book a few more blood tests tomorrow.

She was not impressed by my TSH and gave me a few arguments against having it that low but none of them impressed me much. I don’t think she’ll force me back onto Synthroid. I don’t think I have to worry about low bone density as I’m above average as it is.

The cortisol AM was high, but I’m taking cortef so that would explain it. My adenocorticotropic hormone was low, but as far as I understand it, if my cortisol is high it would go low as it stimulates steroids to be released. She did stress that cortef shouldn’t be given lightly so she is looking into that more closely now. I’m happy with that; the less time I’m on it the better.

My surprising scare from this appointment was my fasting glucose which was a 6… that’s borderline pre-diabetic! Eek!! It was a 5.6 and a 5 this past year so it’s not a super high trend… yet. My HbA1c is into that pre-diabetic range too.  This isn’t good.

I need to get control of my sugar and diet and bring that down. I don’t want diabetes! I know that can be related to high GH and IGF-1 so I’m a bit scared with that. I need to do more research… Hopefully it is just too much sugar over the holidays. I don’t have the other risk factors like high cholesterol or being over 40 (close though) or being really overweight (but I am back to 175 so I need to lose a good 15).

Well more wait and see. In the meantime, I will finish off my last bag of dark chocolate chips and say good-bye to sugar.  😦

Soooo nervous – my endo appointment is tomorrow!

Tags

Acromegaly, Endocrinologist, IGF-1, OGTT GH, Pituitary Tumour, Thyroid-stimulating hormone

I am getting nothing done lately, I’m too distracted with this upcoming appointment. Tomorrow is finally the day that I get to see an endocrinologist and I’m worried that it won’t go well. It took me from May to January to finally get here so a lot of time has gone into this waiting – and essentially all I am waiting for is the oral glucose tolerance test (OGTT) for growth hormone (GH) suppression. That’s the key thing! That will tell me if I have a pituitary problem, or a diet problem, or a thyroid (T3) medication problem…. I honestly don’t know which one I’m hoping for. I suppose my two high IGF-1’s could have been a fluke but I doubt it at this point.

So, my goal tomorrow is to present my case and push for an OGTT GH test. HOPEFULLY they’ll agree with me. I am worried that the endo will get hung up on my low TSH, which is suppressed below normal, even though my free T3 and free T4 are where they should be, or at least they were 5 months ago. Doctors are advised not to give natural desiccated thyroid up here, and I have NO idea why, so I’m betting that she hasn’t see a low TSH like mine too often.

To help her understand my low TSH. I am bringing every old lab report I have that has to do with my thyroid. My ignored sub-clinical hypothyroid TSH’s, my labs as I started Synthroid and stuck with it for 9 months, and my labs from the orthomolecular doctor, Dr J, who I started seeing when I still felt hypo and my old doctor, Dr R, had declared me well. Dr J also found my high IGF-1, and dismissed it; he retested at my insistence and that is when I had my borderline normal result.

I have to remember to point out that I had just started NDT about a week before I had my IGF-1 tested the first time. When it was retested, I lowered my NDT dosage a bit as it felt like too much (hyper) and my diet had been cleaned up (almost no carbs or sugar). When I had my third test a few months later (it was high but not excessive) my diet was not as good, and I was on the same dose of NDT as the second test.

I have to remember to mention my symptoms, but I really don’t have any prominent acro features. OH! I should grab a few photos just in case the doctor wants to compare…. Got them – I really don’t look that different at all.

Symptoms include: foot widening and length, bad back and joints, headaches, snoring, voice slightly rougher, acne – more than in my 20’s,fatigue, and some weakness. It’s nothing definitive is it?

If I do have acro it either isn’t severe or I am in the early stages. Hopefully it’s not acro but something that I can fix with diet or med changes.

Eek. I’ll update in a day or so.

Colds aren’t as bad as they used to be – yeah gluten-free diet!

Tags

Celiac Disease, Gluten-free diet

I’ve caught a cold. I’ve been fighting it for a few weeks – tired, chilled and not feeling right. It finally hit after ds#2’s birthday party on the 8th. I fully expected it to too! You know how your body seems to hold it off until the stresses pass and you have time to get sick? Bingo! That night I had a mild fever and chills and my head plugged up.

Funny thing is that I don’t seem to get as sick as I used to (knock on wood). In the past, when I got sick I had a fever for days, I would be walking into walls, shivering and aching, and if it was just a cold my head would get so plugged up and runny that I would go through a box of kleenex a day. I’m talking Rudolf here.

Now? Not so much. I get tired and run down with some ups and downs but my downs are not nearly as low. I can still mostly breathe through my nose. I’m not coughing until I retch. No major fever or headaches that are brain splitters… Yeah gluten-free diet!!

I am pretty sure it’s all because I have GF for a year and a half. My body is starting to recover from celiac disease. Yes, I still got sick but it is so much less than it used to be… I haven’t even got a sinus or chest infection from this… Shoot. I probably jinxed it right there!

Yep, I’m coughing again.  LOL

Anyway, for a sicko I feel not too bad. It brought my morning headaches back (they were gone for a few weeks) but it’s not horrible… which is good because I still have a million things to do before Xmas!

Got my appointment with Endocrinology!

Tags

Endocrinology, Pituitary Tumour

I received a letter that my endocrinology appointment is scheduled for January 22, 2014. That was faster than I expected! I am very very glad that I didn’t have to wait half a year or longer. That would have been difficult.

I actually got in faster than the “routine” waiting period but not as fast as semi-urgent. I guess that’s good. A bit worrisome but good.

 

Expecting a three month wait to see an endocrinologist.

Tags

Endocrinologist, Pituitary Tumour

Still waiting to hear from an endo. It’s been over three weeks now. To me, that means I’m not an urgent case.

I looked up the endocrinology triage times for Alberta at this site. On pages 131-132 I found “Pituitary tumour” in the Routine category where it stated that I can expect to wait 12-26 weeks to see an endocrinologist.  That means the earliest I can expect to see an endo is in early February. Bummer.

Oh well, it’s probably for the best. Hubby just got laid off and I don’t think the house needs more stress… although I find waiting is the most stressful!  LOL I would like to know though…

Headaches

Tags

Acromegaly, Celiac Disease, Headache, Pituitary Tumour

I get headaches a lot. A lot. Most mornings I wake up with one behind my eye socket, usually the right eye. If I am run down I get a headache. If I’m sick I get a headache. Back before I knew I was a celiac, if I ate gluten I got a headache – that improved for a while after going gluten-free but it didn’t last.  So a lot of headaches…

When is a headache just a headache and not something to worry about? I’ve become pretty used to having a headache. I had more and more over time and it became the norm. My headaches used to be migraines (more often than now) before I knew how evil gluten is, and I noticed it when they were (mostly) gone but now I have headaches most of the time again… what’s up with that?

Is it another food sensitivity? Is it my glasses or eyes? Is it from snoring causing me to wake up with a sore eye socket? Is it a tumour?

I just don’t know what’s normal anymore.

This is what I experience:

• Most mornings involve a fairly mild-moderate headache behind or around the edge of my eye sockets. Usually behind my right eyebrow. It is a fairly steady pain but it often pulses too. I’ve had one of these about 5 or 6 of the last 7 days.
• Migraine headaches behind or above my eyes. These usually pulse and hurt more. Getting up and changing positions hurt a lot, as does turning my head fast. I sometimes feel off with these and maybe extra tired or cranky. My eyes have a harder time focusing and reading. Noises really bug me. On occasion I’ll have visual disturbances where it’s just hard to focus or there is a zig zag in my view.
• I get pressure headaches where it seems like a band is wrapped around my head, at the back, and it’s hard to pin point where it hurts; lately it almost feels like an ear infection. I’ve been getting this more often lately but I also feel like I’m fighting off a flu (more fatigued and not right).
• Ringing ears – I get that with most headaches.
• Teary or squinty – Hubby can often tell when I have a headache just by how I move and look… Weird.
• Just below my sinuses I’ll get a headache. It’s almost in my teeth – just above my upper teeth and into my cheeks. I don’t know if that really a headache or not. I suspect it is as it seems to join up with my eye socket pain.

I honestly think my head hurts a third to half of the time. It’s not always crazy bad though. I can be distracted out of them. Fo instance, today was my oldest son’s birthday party. I awoke with the headache behind the eyes which stayed for about 4 hours. I became busy with cleaning and then the party. I barely noticed the headache then, I was distracted out of it, but I was still a bit moody and the noise of the balloons popping and kids playing was wearing. Once people left I noticed the headache a bit again – it was mild. I’ve been playing on the computer for a few hours now and my eye socket hurts mildly, the lower sinus discomfort is there and my ears are noticeably ringing… How abnormal is that? Should I worry?

I’ve never discussed headaches with a doctor. They just crept up on me over decades…

Dr Google isn’t much help with this either. The Mayo symptoms checker says it’s migraine or brain tumour or meningitis… in that order. Not re-assuring.  LOL

Bah. I’m off to bed.  Luckily I can sleep through almost any pain.  ;o)

Oh, still no word from endocrinology.