Rare bone disease, adrenal insufficiency, pituitary tumour, still not menopausal despite having both ovaries removed, massive weight gain…finally and endocrinologist who will listen

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I have been trying to make an appointment with a new endocrinologist for two weeks now.  Due to the pandemic, the clinic is running on a skeleton staff, and they’re just not returning some calls.  Including mine. Finally, I got a text telling me to email my referral through.  While I was doing that another receptionist returned my call.  She told me there was an available appointment that afternoon, at 2:45pm. Sometimes I DO get lucky!

I took it, gratefully.

My current endocrinologist is a surly, rude supremely disinterested doctor.  She doesn’t like complex cases.  She does what bad doctors do – blames the patient for their weird and wonderful symptoms, and the fact that they are sitting in their office, looking for help. Help that they have no idea how to give, so they resort to disbelieving, belittling and setting impossible goals.

I have quite a few endocrinological issues, and several of them are rare conditions.  They require research.  Work.

My problems are as listed below:

Extremely high bone density / osteopetrosis

I have extremely high bone density.  It is seven standard deviations higher than average for someone of my age.  Anything higher than two standard deviations is considered a disease process.  I have bone pain, hearing loss, tinnitus, and some minor hematological abnormalities.  I don’t know if my bones are extremely dense, and extremely hard, or extremely dense and extremely brittle and fragile. The fact that I have never had a fracture implies that my bones are incredibly hard.  My neurosurgeon was afraid he was going to break his instruments when he was performing my multi-level spinal fusion, which in twenty years of performing this surgery, he has NEVER seen before.  So that’s pretty good evidence that my bones are extremely hard.  That’s good.  But I have bone pain, hearing loss and tinnitus that are probably caused by my bone disease, and other lab abnormalities that need looking at.  My previous endocrinologist just said “You have a version of osteopetrosis, its not causing you any problems, why don’t you just forget about it and come back when it IS giving you problems?  It’s not relevant.”  Hmmm.  Well, actually it IS giving me problems, and I am here looking for help.  She dismissed my concerns.  My breaking point was when, after my spinal fusion surgery, she called me STUPID for not advising her before-hand, so she could request a sample of my bone. Given her dismissive attitude, how could I possibly know she wanted a bone sample?  While I remained polite, I will not accept a doctor calling me stupid.  Time for a new endocrinologist.

I had a hysterectomy and bilateral oophorectomy almost three years ago. Two issues with that:

Massive Weight gain

I gained an incredible amount of weight after that surgery.  I was a nice, lean 78kgs the day of the surgery.  Three months later I was 92kgs.  A year later I was over 100kgs.  This was despite a very low calorie diet and regular spin classes and some light weight work.  Her response?  STOP EATING!  Great advice, right? 

I explained to her that I have eosinophilic esophagitis, I am on an extremely restrictive diet, I survive on mostly vegetable purees and lean protein. I have had eating disorders since I was a child, and I have NEVER been overweight, I won’t allow it.  Now I am obese and its causing me a lot of mental distress.  I physically can’t eat enough calories to maintain this weight, yet the weight continues to climb.  The weight started after the hysterectomy, I eat like a bird, so (to me) it is clearly a hormonal problem. She rolled her eyes and told me to see a dietitian.  And to STOP EATING. 

Still having normal oestrogen levels despite having had my ovaries removed

I had both ovaries removed, yet I am not menopausal.  I still have normal, premenopausal levels of oestrogen. And the levels cycle, just as a normal premenopausal woman’s would.  I have had a CT to look for ovarian remnants and none were identified. 

This is a medical impossibility.  You can’t make estrogen without ovaries, yet I do. What did my endocrinologist say?

“So what?  Why do you care? Having estrogen is actually heart-protective so you are actually very lucky”.

 I reminded her that I have gained a lot of weight, I now have no idea what my menopause status is, and no idea what my risk for ovarian cancer is. In fact, if I were to get ovarian cancer, no one would ever consider it a possibility in someone who’d had their ovaries removed, would they? 

She said that was very unlikely.  Unfortunately, she is not correct.  Ovarian remnant syndrome can result in ovarian cancer.  Given that I had the oophorectomy due to cancer concerns in the first place, this is hardly a satisfactory state of affairs.  

The treatment is surgery to find and remove the remnants. There are risks, especially given how well surgery always works out for me.  The thing is, she won’t discuss treatment.  She dismisses me every time I bring it up.

Adrenal Insufficiency

I have confirmed adrenal insufficiency, I had the short synacthen test at least four years ago, but because my old endocrinologist didn’t do the test herself, she isn’t convinced. She did treat me for it (prescribed emergency injectable hydrocortisone, advised sick day dosing and changed me from prednisone to hydrocortisone) but she continues to try and get me to taper lower than I can manage.

I am in an endless loop of trying to taper below 32mg of hydrocortisone (8mg prednisone equivalent). Every time I try to get lower, even to 30mg of hydrocortisone, the fatigue becomes unbearable, I become bedridden. When I stand up I get dizzy and I have to lie back down again.  I have gastrointestinal symptoms, and back pain.  My life becomes lying on the couch and watching the world spin. 

My endocrinologist says this is impossible, it’s not adrenal insufficiency because the corticosteroid dose is too high. Fine, that may well be true, but there IS a reason for this.  She does NOT look for that reason and insists I keep tapering.   Infact she told me to go away and come back when I am on 20mg of hydrocortisone.  That dose is impossible for me.  She ignores this.  She has ignored this for over a year.  To be fair, my GP and immunologist do exactly the same thing, but that doesn’t make it right.  Its lazy doctoring. There is a medical reason why I need more corticosteroid steroid than I should.  It is NOT psychological and I am not a lazy sook.  I am very motivated to be active, due the massive weight gain.

Pituitary tumour

My endocrinologist sent me for a pituitary MRI to exclude pituitary pathology. Unfortunately for her, it came back with a tumour.  The radiologist wrote it up as a tumour, my GP looked at it and called it a tumour.  My endocrinologist called it a ‘normal variation’ and didn’t investigate further. She was  sure it would come back normal and then she could send me away. But it didn’t come back normal, so she has to pretend it did.  After much pushing from me she ran some pituitary hormones, which were only slightly out of range.  She ignored this and gave me an imaging slip to have another MRI in a year.

Hashimotos Thyroiditis

I have hypothyroidism, which I treat with dessicated thyroid extract (armour thyroid in the US).  She doesn’t believe in the medication and told me either I switch to levothyroixine or she won’t treat me anymore. She said she’s “sick of dealing with me” and I should switch to evidence-based treatments.

She’s ignorant. The evidence shows that some patients need T3 supplementation as well as the usual T4.  I spent ten years dealing with hypothyroidism because, while my blood work was in range, my body wasn’t able to use the T4 appropriately.  My symptoms remained. Then too I was massively overweight, always cold, always exhausted, deaing with low mood and low motivation,  I exercised my butt off in the gym, ran 5kms most days, and ate barely anything to try and be lean.  When I finally found a doctor who would prescribe the T3 and T4 formulation it took about a month to feel any different. And over the next two months I lose 20kg.  The weight just fell off me, and I was back to the weight I was when I was 18.  I could fit into  my old jeans and my formal dress again. 

I am NOT going back to T4 only medication, that would be a major backwards step and make my health problems worse. 

She has no interest in helping me.  She thinks I’m a fat, lazy, middle aged woman looking for issues, and making excuses. 

She thinks I’m a hypochondriac and a liar. 

So I asked my GP for a new endocrinologist.

And yesterday when I walked in and sat down, he said in a very brusque tone

“I see you’ve been seeing my colleague Dr Bitchface.  Why are you coming to see me?”

My heart sank.   He continued in a sharp tone:

“I’ve reviewed all your notes, I’m not really sure why you’re here?  Why do you want to see me?”

I felt like I was being accused, though I know not what of.  I stammered and my brain screamed “because my current endocrinologist is a bitch and doesn’t give a toss” but obviously I couldn’t say that.  I struggled and mumbled and finally said “She isn’t really interested in being my doctor anymore.”

Lame.

The look on his face was disapproving.  He started probing some more “why wouldn’t she want to see you?”

I died a little more inside and wished to the gods that I’d never come. Another $250 wasted on a consult with a doctor who doesn’t give a toss.   They all stick together.  Back eachother up. “My colleague”.  They were probably best friends.  Why did I bother? 

I started beating myself up, and could feel myself getting smaller.  I actually felt like crying.  I stammered some more, and then suddenly his demeanour changed completely.  His tone softened, and he said:

“Nevermind, let’s start at the beginning.”

And then I told him everything.  Well, everything endocrinological.  I mentioned my other diagnosis – rheumatoid arthritis, eosinophilic esophagitis, urticaria and angioedema.  I forgot to mention my hearing loss, and a few surgeries. I told him about the hysterectomy and he understood that most of my worst problems began after that surgery.

He was intrigued by my not being menopausal, despite having no ovaries and he was openly skeptical but not in an obnoxious way. He agreed that needed investigating, because if I truly have no ovarian remnant tissue, I am a medical miracle.

He was intrigued by my bone density, he’s never heard of a level THAT high.  He agreed there is a disease process there, but whether it was ‘malignant or benign’ remained to be seen.

He agreed that I have a pituitary tumour, but it may be non-functioning and an incidental finding. When I told him that I thought it might be important in regards to my weight gain, he understood and said it was possible.

He doesn’t like dessicated thyroid extract but he didn’t recommend I return to T4 only levothyroxine. He said we would look into synthetic T3 and T4 medications, so that we could standardise my dose and get a better handle on my thyroid issues. 

He sympathised with the hydrocortisone taper, I told him about the endless taper and he agreed, we would need to look into why I couldn’t get lower.  He said that corticosteroid replacement was also weight dependent, and given that I am much heavier than I used to be, it makes sense that I need more hydrocortisone.  He said he would investigate further.

He asked lots of questions, I answered.  He warmed up and made jokes, and worked on making me comfortable, as I clearly wasn’t in the beginning.  Which showed he did in fact, give a toss.

As I got more comfortable I talked more. I told him about my IGF-1 and GH, my ACTH and CTX and P1NP.  This is always dangerous with a doctor. Most get extremely pissed off if you use THEIR terminology. You’re a mere PATIENT you couldn’t possibly understand what the magical lab values mean.

And that’s true. I can’t understand them and interpret them all and come to a diagnosis. But I do have a basic idea of what they might mean.  I do a lot of reading. I research.  I don’t for a moment think that I know as much as a doctor, of course I don’t.  But I DO know an awful lot about my own body.  And to be blunt I feel like shit, all the time. Therefore, I am very motivated. I want to feel better. I want a life.  So I read and research and look for reasons for my symptoms.

He wasn’t disturbed, he said “Oh, so you understand what all those things mean,” in a completely non-condescending way.  I told him I understood Dr Bitchface has undertaken some initial testing, and it was mostly normal, and so she’d stopped looking. 

And then he asked me what I felt my biggest problems were.  What was it that bothered me the most?

I said my weight.  I am absolutely miserable at this weight. I have always worked hard to stay lean and fit.  I had anorexia and bulimia as a teen and young adult.  I have body dysmorphic disorder, so I see myself as even larger than I really am. I stay home and isolate myself because I don’t want anyone to see me.  I rushed to add that I don’t judge other people’s weight, only my own. 

And he said “right, then let’s get your losing weight”.

How? I asked.

He told me about a new medication, not PBS subsidised, but very effective for promoting weight loss. He would trial me on it, if I liked. 

Gobsmacked.

I agreed.  It’s basically an appetite suppressant, which may not work for me. I don’t overeat. In fact, I under eat.  But it may have other effects. It mimics a naturally occurring hormone in the gut that helps signify to the brain that you are full and have eaten enough.  If nothing else, it will make it easier for me to maintain my very low-calorie diet.

I then said the next biggest problem was fatigue.  That I used corticosteroid bursts to give me some energy sometimes. That I’d had fatigue from rheumatoid arthritis and this was way worse. I literally want to lie down all day. Trying to exercise is misery – firstly getting the motivation to do so, but once I’m working out, I don’t have any energy. I can’t build muscle strength. I can’t tone my muscles.  I need to find out why I am so exhausted all the time. 

He said we’d do that next. First, we’d try and get me to lose some weight, and see if that helped the way I’m feeling.  He said he would run some pituitary tests, to ensure there were no pituitary abnormalities, and he would check my thyroid and sex hormones. I told him these had recently been done.

He gave me his mobile number, and his email. He told me to send them to him, and he’d let me know if he still wanted to run his own tests, depending on how old the tests were. 

I was dumbfounded.  He gave me his mobile number and his email.  Holy shit. He told me he would be working all weekend, and if I emailed over the weekend, he’d send me information on the weight loss medication, along with some studies I might like to read.

Um.  Ok.  Then he stood, shook my hand, told me it had  been a pleasure to meet me, and that we’d get to the bottom of everything, in time.

I thanked him profusely, and left.

And then when I went to pay, he bulk billed me.  The appointment was free.

OMFG.

I have found that very rare beast, a caring, interested doctor.  One who considers the whole person, and considers my income (or lack of it).  And who still wants to help, despite him not making much money off me.

By the time I got home, I calmed myself down.  I’ve been here before. Meet new doctor. Doctor is interested and intrigued by my history and list of rare diseases. Promises they will succeed where all others have failed. Orders a tonne of tests.  They all come back normal or inconclusive.  Doctor loses interest because it turns out its not as easy as all that.  Doctor starts treating me poorly, blaming me, diagnoses depression and refers me either to another specialty, or to a psychologist.

And then there’s the crushing disappointment and the waste of 9 months to a year of my life spent in consults, scanners and getting blood draws.  Not to mention the expense.

So I have to not get too hopeful.  The CRASH when you think you’ve found someone who will finally help, and they dump you flat is devastating.  I need to be careful.  Don’t get too excited.  This will be a slow process.  It will take months to work through it all.

But I am gathering my labs and I will email them to him this afternoon.  And I’ll add a little more information that I forgot at the consult.  And I’ll get the new bloodwork done on Tuesday morning, and call him next Friday for the results, as he directed me to do.  He said he would fit me in for another appointment to show me how to use the weight loss injection.  And then we’d wait and see.

But I can’t help it, I have hope.

POSTBLOG:

I sent him my bloodwork, and he agreed that there I must have ovarian tissue remaining.  There is absolutely no way that the oestrogen level could be from my adrenals, I am fully in the middle of the normal range of estrogen values.  No where near menopausal.

Which means that not only did my ob/gyn surgeon ruin my life by letting me almost bleed to death post operatively, she also screwed up the surgery and left ovarian tissue behind. 

I can’t even sue my surgeon, because my sister refuses to write a statement of the facts.  I can’t win without her.  So my surgeon gets away with almost killing me, and providing no post op care. I live with the consequences of that surgery every day – the pain, the weight gain, the PTSD.

And I can do nothing. I just have to accept it.

3 COMMENTS

  1. I’m so glad you’ve found someone that not only listens but also cares. Fingers crossed he’ll be the one to get to the bottom of all this. I still hope that there will be some way of making your sister see sense and holding the OB accountable for all shes’ done. I’m now guessing that if there’s tissue she left behind, a, there’s proof she messed up the surgery, and b, that’s going to mean another surgery to remove it?

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