Best Endocrinologist Ever.

Every time I have an appointment with my endocrinologist, I hem and haw about whether I should cancel it. It’s on the other side of town, $50 round-trip in an Uber, it only ever lasts about 20 minutes and couldn’t she just look at my thyroid lab results and email me about whether to stick with my current hormone dosages? Well, each time I go, I am so grateful for this doctor (last week I told her nurse I would walk on hot coals for Dr. B) and I vow to come straight home and write an update so I can remember everything she said. I never have managed to do this and the visit summaries hardly mention anything at all, so today I’m going to write a general update of her treatment.

I’ve seen a lot of endocrinologists in the last six years and they have all, without exception, been kind of odd, stoic and monosyllabic. Until Dr. B. She’s vibrant and engaged (after seeing her, I always mourn my lack of brain energy a little more), listens closely, talks about her ideas out loud, thinks outside of the box and is interested in conditions not typically related to the endocrine system. Imagine that: a big hospital allopathic endocrinologist taking the whole body into account!

The first time I saw her a year ago, I told her my basic story (anaphylaxis 2001-2002, vasovagal collapse 2005-2011, thyroid goiters 2009, radioiodine ablation 2010, SICK 2011), assuming she’d check my thyroid and update my prescription as per usual — and she did, but she also ordered pituitary blood tests, a Cortrosyn stimulation test (CST) (otherwise known as an ACTH stimulation test — it measures how well the adrenal glands respond to ACTH), referred me to two neurologists — one that specialises in headaches and one that specialises in dysautonomia — and said we would consider placing a continuous glucose monitoring device to assess the drops in my blood sugar (good news is, my blood sugar crashes got much better, possibly because I am eating all foods again and have put on weight). No other endocrinologist had ever suggested any of these things.

I was dreading the CST because of my reactivity and intravenous injections of anything don’t allow me to start low and slow, but it was fine. I did my research beforehand (yes, they were they only using 1mcg of Cortrosyn; no, I didn’t need to fast; no, it didn’t need to be timed according to the follicular phase of my menstrual cycle; no, I didn’t need to be off bioidentical hormones; and, yes, my husband could be with me), so I felt comfortable about the procedure and the results were normal.

The pituitary testing showed low LH (luteinizing hormone), DHEA and IGF-1. Because of the latter, at our next appointment Dr. B ordered a pituitary MRI to “leave no stone unturned” (LOVE her). The MRI was normal, but she emphasised that it was less reliable because of my unwillingness to use contrast (I didn’t think the risks of a reaction outweighed the benefits of a better MRI — and she was ok with that). She also gave me a prescription for Florinef to see if it would help with my hypotension (blood pressure was 80/60 at this appointment). I trialed it for a month (starting at 0.0125mg (!!), working up to 0.1mg) and thought it might be increasing my headaches (but not my blood pressure, of course), so I stopped, but it’s still on my list to retry.

My thyroid levels have consistently been tanked for the last 6 years and at every appointment Dr. B would tweak my meds. I’ve gone from 50mcg/day of levothyroxine to 100 to 125 and from 5mcg/liothyronine to 10 and — this is exciting — when I told her my naturopath suggested much higher T3 and lower T4, Dr. B said, “I’m totally open to that, let’s try it.” 😮 Typically allopathic endocrinologists and NDs do not see eye to eye on treatment and optimal thyroid levels and often one doctor will be resistant to another doctor’s suggestions, especially when the suggestion comes from someone who isn’t a specialist. Dr. B has no ego getting in the way. So, we increased my T3 to 15mcg twice/day and lowered T4 to 100mcg. I really don’t know if it has helped, but she seems more satisfied with my thyroid levels. She told me to watch out for tremors, heart palpitations and insomnia, but they are all within my normal constellation of symptoms, so who knows (although, as I’m typing this, I realise that my quite-vicious nightly palpitations haven’t happened in a while– maybe weeks). She diagnosed me with “euthyroid sick syndrome” which essentially means your thyroid will stay sick until the underlying chronic illness gets better.

I saw a headache neurologist and a dysautonomia specialist (more on both of those in separate posts), but neither of them were the ones to which Dr. B referred me. And — another reason to love her — she had no problem with that and was still interested in what they had to say. Even better, when I told her the dysautonomia specialist didn’t have much to offer and essentially told me just to make sure I don’t decondition any further, Dr. B raised her eyebrows in surprise and kind of dismissed this, still interested in helping me fix this piece of the puzzle (those of you that haven’t done the doctor rounds might not realise that almost all of them tell you to simply exercise more (or gain/lose weight) (or take antidepressants), so I expected Dr. B to take the specialist’s assessment as bible and agree that I was just deconditioned). She suggested I do a growth hormone challenge (it involves a 17-hour fast, an 8am check-in and a 5-hour test where they give intravenous glucagon and then measure human growth hormone (HGH) response through blood draws) and said the worst side effect she’d seen was vomiting. I wanted to vomit at the thought of getting to a hospital at 8 in the morning. I went home to do some research; that was in July of last year.

When I saw her again at the end of September, I hadn’t done the HGH challenge and she didn’t give me a hard time at all. Three months after that appointment I still hadn’t found the nerve, so I emailed her a long message about my glucagon fears (those of you with mast cell/anaphylaxis/medication sensitivity issues can read my email* below for the reasons it gave me pause) which any other specialist would either not answer or reply that I should come in for an appointment to discuss. Instead, she sent me a very thoughtful, validating reply (not “For fuck sake, stop being such a scaredy-cat and do the bloody test since I’m the one doctor who is investigating all these things!”) and offered an alternative to glucagon — an insulin challenge test — which I agreed to … and then never did. They give you intravenous insulin, drop your blood sugar to 40 and then test HGH. I told her I was more comfortable with the devil I knew (hypoglycemia) then the one I didn’t. But, it turns out I’m not really comfortable with voluntarily meeting any devil. I’ve had my blood sugar drop into the 40s. It was absolutely horrific — one of the worst feelings I’ve ever felt. And, although they give you intravenous glucose right afterwards, I still couldn’t bring myself to do this test and subject myself to the crash when I thought they probably wouldn’t find anything.

So, I waited until my appointment this month — 8 months after she first wanted to investigate this avenue — and told her of my fears about the insulin challenge test as well. I expected her to just give up, to say there’s probably nothing wrong there, anyway, but she didn’t. She said there was an additional reason to do the insulin challenge (other than for HGH output) and that was that it can pick up a hypothalamus issue that the glucagon stimulation test can’t. Ok, I can get on board since it’s a two-fer. However, in another display of out-of-the-box-ness and medical generosity, she suggested I just try HGH injections without doing the challenge test. She said she had two other patients with the dyautonomia-mast cell-EDS trifecta (more on my EDS diagnosis at another time) and, even though neither one flunked the stimulation test, they tried HGH and had really good results. A friend of my sister-in-law’s had a lot of success with HGH and it has always been in the back of my head as something to try when I win the lotto. I read it cost thousands of dollars, but Dr. B’s prescription is “only” $138/month, so I’m on board. If/when I get the nerve, I can stop the HGH for a week and do the challenge test and, if I fail, insurance will pay for my prescription. An added bonus is my nurse who comes to my home every week (to give me intravenous fluids with my immunoglobulin infusions) can show me how to subcutaneously inject the HGH and I don’t need to go across town for a tutorial appointment.

Gratitude for good doctors! Wish me luck with the HGH.

Buffers can help, but sometimes not enough…

My brain MRI was fine. No evidence of MS, no sign of something causing my headaches. My c-spine MRI showed that I have mild intervertebral disk space narrowing and mild central disc osteophyte complex, centered at C4. I won’t go into the history of my neck problems, but if this is “mild” I feel very, very sorry for anyone with moderate or severe problems. When my neck has “gone out”, the pain is 10 out of 10. It is like nothing I’ve felt before. Can’t lie down, sit down, move arms, head, back… I’ve showed up at the doctor’s office twice at 7:30am, without an appointment, crying and begging for help. Both times they gave me injections in my butt that knocked me out for almost two days. I guess, if the bone problem is mild, the muscle problem can still be severe. My physical therapist said I had the worst case of hypermobility in my neck that she had ever encountered. It must have been from all my head banging, rock ‘n’ roll days and all the extreme sports I played. That’s sarcasm. I didn’t do anything!

My neck first went out a week after a particularly bone-rattling roller coaster called The Iron Wolf. It was a stand-up roller coaster and they had head buffers on both sides to minimize injury as you were being tossed around. I was too short for them to buff properly, though, and my head and neck took a battering. My brain felt blended. One week later, I tried to get out of bed and couldn’t. The neck pain was excruciating, radiating down my limbs. I was so unfamiliar with bone/muscle pain, that I thought I was going to be paralyzed. I thought my spine was fractured or something. I lay there for hours with tears running into my ears, waiting for my husband to get home. That one healed on its own since I had no health insurance at the time, but I’ve had problems ever since. I guess I did go into the history of my neck problems, after all!

Anyway, back to the present: I added back in rice to my diet with no adverse effects. Unless this exhaustion and pain are caused by the rice?? Haha. Just kidding. I’ve added flax to my smoothies and started taking the zinc and ferrous gluconate supplements. The latter is meant to be taken 1 hour after food and 2 hours before food and, let me tell you, it is VERY HARD for me not to eat for 3 hours, so I’m cheating a bit on that one.

I stopped taking the birth control pill yesterday. My headache is all day, every day and is crippling me. I’ve spent a lot of time lying down in dark rooms in the last 3 weeks, my face is permanently pinched, I can’t deal with too much light or noise. I am constantly alternating epsom salt baths, ice packs, arnica, IcyHot spray, TENS unit, meditation, breathing exercises, anything I can think of to ease up my neck and back muscles and hopefully help the headache. After much research on my headache support group forum, I’ve convinced myself that it is caused by the pill, so I am going go stop taking it for a month and see what happens. I also want to quit the pill because I’m extremely sedentary and that contributes to the risk of blood clots (and being over 35 years of age). I actually think I would prefer any other pain to this headache (except for maybe the aforementioned 10-out-of-10 neck pain… and, when my period hits, I’m sure I’ll amend that statement).

I woke up full of gratitude this morning. There are people out there dealing with this and other illnesses with little to no support, starting their journey with so much less than I have. My heart breaks for them. Without my income, I am terrified of losing our house, our savings, our health insurance, but I could have started this illness with no house, no savings and no health insurance. What do people do? I am blessed and grateful to have a slight buffer. Like The Iron Wolf’s buffers, it may not be enough to save me down the road, but, for now, I can ride the roller coaster.

Getting an MRI (brain and cervical spine).

If you read no further, take this to heart: MRIs are nothing to worry about, even if you are a panicky person. Feel free to jump to the MRI tips below (in blue) if you are interested in my feedback. Now, to the details of my visit:

I’ve had an MRI before ~ a few years ago for my neck before I was sick. It never occurred to me at the time to research what the scan was like or prepare in any way. They asked me if I was claustrophobic and I said no, but, when they put me in that tube, I opened my eyes, saw how close it was and freaked out. I didn’t freak out outwardly, I just started to get that hammering heart and flush of fear and thought, Oh, maybe I am claustrophobic. It was so close to my face that my breath ricocheted back at me and made it feel like I was in a coffin, buried alive. The test didn’t take long and I talked myself down the same way I do when I get on a plane: Are you going to get off the plane now that they’ve closed the doors? No? Well, then there is absolutely no point in being scared. It’s out of your hands. That’s exactly what I did: Are you going to NOT have the MRI? No? Then deal with the closeness of the tube.

This time around, however, I’ve been sick for a year and I’m a much more anxious person than I used to be, so I thought it would be a more horrible experience. It turns out the machines at the hospital versus the clinic I went to the first time are roomy. And I’d learned my lesson and brought an eye mask.

So, my husband drove me to the hospital and, for the first time in my life, I had to be pushed in a wheelchair to the radiology clinic, which was 100 miles from the parking garage. “Park your pride at home”, says Dr. Bested, so I did. Wheelchairs are good for me. Our MRI tech, Kevin, was amazing. All techs are not created equal. He answered my questions about the contrast (which I opted not to get because, as my husband said, if it can go wrong, it will go wrong with me), he offered me the old scanner with music or the new scanner without music, but with the tube much further from your face (I chose the latter after looking at it ~ it was bright and spacious). Kevin assured me that people make the techs stop the scan all the time, so not to be embarrassed if that happened. He put a blanket over my feet, a towel under my neck, offered to loosen my headphones (which I SHOULD have taken him up on ~ do whatever you can to be comfortable). He talked to me in between every scan and allowed me to move and adjust. The scan itself was no problem. The worst part was how hot it got under my back and, because I have fever episodes as part of my illness, it started to freak me out that I was having a reaction or a meltdown or a fever or whatever. Kevin said, “Pretend it is a heating pad on a massage table and you are getting a wonderful massage.” Perfect. But turn that heating pad down, for god’s sake!

Turns out the new fancy machine was having some problems, giving “error” messages (my husband said to Kevin, I told you: if it can go wrong, it will with her! I said to Kevin, That magnet just couldn’t handle my big brain ~ the activity threw it off its game :-)), so I had to be moved to the old machine after all. I had to wait another hour in between scans and Kevin gave me a juice and a blanket. Angel! The second round was rough. Kevin was gone and the new tech didn’t communicate clearly at all. I like to know when there is a pause between the scans and how long the next one is going to be and be warned when a particularly loud part is coming. None of those things happened with the new tech. It also turns out cervical spine scans are worse than brain scans. They put you in a different head cradle which isn’t wide enough for the thick, noise-cancelling headphones (or my head isn’t big enough to clear the top of it), so I was given flimsy airplane-ish headphones instead. These didn’t let me hear the music, didn’t block out the sirens and hammering and, to make matters worse, one of my ear plugs was falling out. The noise was BY FAR the worst aspect of this scan. It was like the day I tried to go to the cinema and had to leave because the sound system caused my brain to melt and I burst into tears. So I meditated on blocking my ear canals and taking myself out of the situation. I actually fell asleep, believe it or not. Just for a moment or two. Enough to jerk myself awake and probably mess up the picture quality a little.

4.5 hours later, I was able to leave and went home to bed. I’m happy it’s done because I am not doing well the last few days. I’m in a whole lot of pain. If I could get rid of my headache and neck/back pain, I would be a different person. My eyes are sunken from not sleeping and my mouth is pinched from grimacing. I look so much older. I look like an older, tortured version of myself.

Once again, family, I am so sorry to those of you that I am not emailing back because I’m writing the blog instead, but this keeps everyone up to date and I can only manage one computer task a day. The phone is a mountain I try to avoid climbing for the most part, so I apologise to those of you I haven’t called back, also. Tomorrow, I’m back to the hospital for my sleep study results. Joy.

So, here are my tips/warnings to make an MRI easy:

1. Wear clothes with no metal! Otherwise you have to take off everything and wear a hospital gown and freeze for the majority of the time.

2. If you are cold/heat sensitive, dress appropriately. It is cold in the hospital, but can get hot in the tube.

3. Don’t be hungry or thirsty going in to the appointment because my 2 hour visit turned into 4.5 hours.

4. Suck on a lozenge before you go in to the MRI so you don’t have any sort of tickle in your throat that will cause you to cough or move.

5. Make sure the ear plugs are in properly. One of mine was falling out when they started my cervical spine scan and I think I have hearing damage on that side, swear to god.

6. Make sure the headphones are on your ears properly for the same reason as the ear plugs. Nevermind the music, that’s not the concern~ they are very important for protection from the noise.

7. If you have a painful back/neck or fibromyalgia, make sure the blankets underneath you don’t have ridges and bumps. You have to lie still on those for a long time and they can start to feel like torture. Also, make sure your neck, back and head are in the best position possible to not cause pain and seizing up before the scan starts. Some techs don’t give you a chance to adjust in between pictures.

8. Put the eye mask on before they put the coil helmet thing over your face. Put the eye mask on and, after that, DO NOT move your head or open your eyes. This isn’t like peaking through your fingers at a scary movie where you’re not looking but you actually are ~ do not look, it’s as simple as that. You do not want to know how close the face mask is to your face, it will only cause anxiety and claustrophobia. Close your eyes: You are meditating in some nice place with your eye shade on, that’s all you know. If you open your eyes, it breaks the spell and, if you adjust your head or arch your neck, your nose will touch the thing over your face and you’ll realise how close it is and it will break the spell!

9. Meditate in your head, drown out the noise. I found that if I pretended that the noise was the machine curing my disease, I started to love the MRI. I pretended I was in the futuristic pod from Aliens/Hunger Games/Prometheus ~ one of those movies ~ and the robotic arms were fixing me, which made me be happy for the noise. Fix me, tube!

10. Don’t fall asleep if you’re a twitcher or a gasper-of-breath because it causes you to move and might affect the pictures.

11. If the tube under you gets very hot (and it does ~ it can make you freak out a little), pretend it is a warm pad on a massage table and you are relaxed and safe.

12. Know that if you panic and have to make them stop, it is okay ~ it happens ALL THE TIME.

13. If you are cold, ask for a blanket.

14. If you are in pain and can take a pain killer to make lying on a hard surface easier, do it. If you are able to take a Xanax or something, do it.

15. If you are noise-sensitive, don’t get an MRI if you have the choice.

16. Remind yourself that people have MRIs done constantly. No big deal.

I am grateful for my brain. I am actually hoping that they find something wrong in the brain MRI ~ I would be happy to have any other diagnosis but the one I have ~ but, if they don’t (and they won’t), I am grateful for my healthy, over-active, analytic, curious, obsessive, controlling, detail-oriented, micro-managing brain. Even if all your neurotransmitters are fucked up and you NEVER STOP HURTING, I still love you, Brain. Thank you for keeping me alive.