Endocrinologist appointment tomorrow -- I'm admittedly nervous.

[alicatjoy]

I haven't been posting very frequently. In fact, I think I've really been isolating myself since mid-Spring. But, I'm trying to be more visible (I lurk and follow how everyone is and what everyone is doing). And, tomorrow, I have an endocrinologist appointment. I've only seen endocrinologists while admitted in the hospital and they were not much help due to the circumstances (they were just consults -- not invested in my care). So, admittedly, I am quite nervous about my appointment tomorrow morning.

As some of you know, I was diagnosed with Type II Diabetes in April of this year. Since the initial diagnosis, I have had 3 hospitalizations for severe complications (which threatened my life on two instances) and I am now insulin dependent. In all of those cases, I was taken to the emergency room for blood sugar reaching into the 500-600+ range. I was severely dehydrated due to the high blood sugar, my kidneys were being affected, and I had issues with my electrolytes being unbalanced. At the same time as this was going on, I was diagnosed as being hypothyroid. The testing done was inconclusive as to why my thyroid is not working, but it's function was very low and I was put on medication to help in that area. Through everything, I've really struggled. I have come across many people who are inconsiderate and judgemental. I have been accused of not taking my medications and insulin and I have also been told that I deserve this and that the reason I've been struggling is due to poor diet (which could be true to a point, but I actually suffer from an eating disorder (anorexia/bulimia) and obesity or poor food choices is not the cause of my diabetes -- it is genetic). My doctor's office has been difficult (though my doctor is wonderful), but, overall, they have been helpful. But, I've been waiting since April to see this endocrinologist and I am really fearful of what will be said or done tomorrow.

Blood sugar-wise, I've never reached a normal reading. And, through everything, I have started to restrict my food intake to compensate for the high blood glucose. So, even after eating one very small meal today, my blood sugar was 167 at my last reading (nearly 7 hours after eating and after taking my insulin). That is a fasting blood sugar and, had I eaten a regular amount today, there is no doubt my sugar would have rested in the 300 range. I've also become very lethargic. I am always exhausted -- often sleeping 12-14 hours daily. I am still working, but that too is difficult and I bottom out frequently due to pushing myself to such extremes. So, this appointment tomorrow is crucial on so many levels. I just don't know what to expect. I know we'll do bloodwork and labs, but I also know my last hemoglobin A1C was through the roof. And, I worry that my electrolytes could be way off. And, I've not even started to think about my thyroid function. I guess I just feel as though I have no control over my body anymore. And, it scares me. The fact that I'm struggling with my eating disorder does not help the issue, but without restricting my food, I would be having blood sugar spikes into the 500's. I can't afford to be hospitalized again for my diabetes. But, then again, if things don't improve, what good will I be at work or at home? I digress...

In the end, if you can spare some prayers or vibes, I would greatly appreciate them. I hope I don't come off as whining or resentful in my post -- I'm anything but. I don't want to have diabetes, but I am so grateful for the wonderful things and the amazing people I have in my life. And, diabetes, whether I like it or not, is a part of that. It's difficult, yes, but it has also helped me grow as an individual. I'm blessed and I know that, but, even blessed people could use a hug or two sometimes

.

 

[tara g]

Sending and

your way.

 

[ldg]

Alison, it's been a really tough year for you.

I see you posted in the wee hours of the morning, so I suspect "tomorrow" is, in fact, today now. I really hope you like this Doc, because an endocrinologist sounds like just what you need. With the problems with the hypothyroid and the diabetes and the complications with which you've had to struggle, I really hope you like this doc.

I'm also so very sorry you've had to deal with judgmental and inconsiderate people and caregivers.

On top of everything else, that's the last thing you need. I truly hope that in this specialist, you find an understanding advocate.

With those blood sugar levels and the hypothyroidism, no wonder you're exhausted and depressed.

There are so many different types of insulin now, I really hope that without too much trouble you're able to find one that WORKS for you.

 

[kittkatt]

I hope all goes well for you.

I will keep you in my thoughts & prayers.

 

[darkmavis]

Oh Alison, I'm so sorry to hear you're still struggling to get your insides back to normal. And by normal, I mean whatever you need to do to be healthy, with meds or food or whatever. I wish you didn't have people being unsupportive and accusatory, that's the last thing you need right now. So, while I'm not there to give you any real hugs, I'm sending lots of virtual hugs from me and headbutts from Genever and Dorothy.

I hope your doctor appointment goes well and you can get some answers!!!

 

[-_aj_-]

Lots of for your appointment

 

[nurseangel]

You will be in my prayers. Please keep us posted.

 

[my4llma]

Good luck at the doctors

 

[calico2222]

Many and

.

One thing I can say is once you get your thyroid straightened out a lot of things should improve, including your fatigue. I spent 2-3 years being constantly tired, unmotivated, confused and generally not feeling like a human being. Then my MIL insisted on my seeing her endo (in fact the endo booked an appointment for me at her request...she had a waiting list of about 6 months at the time). It turns out I'm not hypo per say, it's more my body doesn't hold iodine which the thyroid needs to function. She put me on OTC kelp pills and it's made a world of difference! I've dropped over 30 lbs, I have energy and feel like "me" again. I will bet even your diabetes will improve once you get that figured out.

I really pray you like this doctor (I love mine!) and that she can help you. Is she going to be handling both your diabetes and your thyroid issues?

 

[februa]

I hope the appointment went well - its GREAT to get into an endocrinologist to get their expertise on the situation. Sounds like your insulin is not working - maybe you need a different type/dose or an insulin pump and the endo should be able to figure out that too. Stabilizing your blood sugar will do a lot for your exhaustion and could help stimulate your thyroid gland too.
Do you have a diabetes educator you can contact? Limiting your food across the board isnt a good idea, and someone like that could help you select foods with better glycemic index values to help stabilize your glucose levels as well.

If the endo says anything confusing or if you want to ask me any questions, feel free to pm or email me. I am a PhD candidate studying obesity and metabolic function from a central perspective, and have secured funding related to diabetes research from the Canadian Diabetes Association, and attended their conferences, etc etc for the last 5 years and know and can translate almost all of the recent advances in research and medication for Type II Diabetes. Big vibes everything went well today!

 

[nurseangel]

Originally Posted by Februa

I hope the appointment went well - its GREAT to get into an endocrinologist to get their expertise on the situation. Sounds like your insulin is not working - maybe you need a different type/dose or an insulin pump and the endo should be able to figure out that too. Stabilizing your blood sugar will do a lot for your exhaustion and could help stimulate your thyroid gland too.
Do you have a diabetes educator you can contact? Limiting your food across the board isnt a good idea, and someone like that could help you select foods with better glycemic index values to help stabilize your glucose levels as well.

If the endo says anything confusing or if you want to ask me any questions, feel free to pm or email me. I am a PhD candidate studying obesity and metabolic function from a central perspective, and have secured funding related to diabetes research from the Canadian Diabetes Association, and attended their conferences, etc etc for the last 5 years and know and can translate almost all of the recent advances in research and medication for Type II Diabetes. Big vibes everything went well today!

My nurse supervisor's son has had much success with the insulin pump. He was diagnosed very young and his blood sugar was difficult to stabilize with the shots. A good endocrinologist can do wonders, too, so please don't get discouraged. You have been through so much and my heart goes out to you. I will continue to keep you in my prayers.

 

[carolina]

Much love, many vibes, hugs, good energy going your way hun.... Hoping your appointment went well....

:vi bes:

 

[alicatjoy]

I really appreciate all of your kindness and support.

I did have my appointment with the endocrinologist yesterday. I had wanted to come back and update everyone on how things went, but I wound up having a long day and fell asleep on the sofa early in the evening. And, by the time I woke up, it was much too late and I was much too groggy (and disillusioned). But, I have a few minutes here tonight before heading to bed and so I thought it was time to give, at the very least, a brief overview of how things went.

The endocrinologist was nice. He spent a lot of time talking to me and I had the opportunity to meet with a gynecologic resident who was working with him. So, as far as how well they took my history, I was impressed. But, by the same token, it didn't seem that they listened to my history as much as they took the time to write it down. My insulin was increased...a lot. And, I am supposed to begin a new medication. The thing is, the endo is not even planning on seeing me back for at least 4 months. And, while he sent me for labs yesterday, I was told that he wouldn't even be able to read the results or get back to me for two weeks. Despite him being kind and seemingly knowledgeable, I felt as though he was treating me as a number and not an individual. He made a lot of assumptions and disregarded a lot of what I talked about -- my eating disorder, my thyroid, and some prior medical history. All in all, I'm not sure how I feel about the endocrinologist or my visit.

What I can say is that I have a lot of feelings. I'm afraid of trying new medications and not being strictly monitored. I am disillusioned by the fact that my endo didn't want to see my glucose meter or numbers. I am frustrated that the computer spits out information to my doctors that is incorrect (they make changes or take liberty on what I share and it then gets passed to my PCP or the hospital and it influences my care). I am just so overwhelmed. I have doctors, friends, and family -- why do I feel so alone?

There is more to share, but I need to get to sleep. I had a long day at work today and I think my mind is being run by emotions and not necessarily fact. I have an appointment on October 3rd with my primary care physician and, hopefully, I can move forward a bit with some other health issues. In the meantime, I am kind of in limbo -- not moving forward, but stable nonetheless. I hope I don't come off as whiny or ungrateful because I am so thankful for the fact that I have medical care. There is just a lot going on and, frankly, I don't know where or how everything (me, my health, my life, my medical care, my treatment...everything, basically) fits together. Time will tell, but, for now, I need to live in the moment, trust the process, and take care of myself.

Thanks again to all of you. I feel so much better knowing that I am not alone.

 

[alicatjoy]

Well, I'm still awake. Things are weighing heavily on my mind. And, at 2:30am, there isn't much I can do but write...

Is it wrong to not feel comfortable or confident with a doctor who, by all accounts, is renowned for what he specializes in? The more I think about the endo, the less comfortable I am. And, to make matters worse, as I was looking up information on the drug he prescribed, I found out that it is contraindicated in those who have an allergy to sulfa drugs. My allergy is severe enough that it can potentially cause anaphylactic shock. I even went over my long list of allergies with the nurse yesterday. I called the pharmacy to see if it really is an issue for those who have sulfa allergies and they told me not to take it (I have not even filled the prescription yet and I do my research beforehand). Also, the fact that I am not being more closely monitored is distressing. I can be judgemental of the medical profession and am jaded, but am I wrong to want a doctor who will work with me and not just tell me what to do? Am I asking too much? Are my standards or expectations too high? I felt let down after my appointment. Sure, he is a very educated man and does have a good bedside manner. He is knowledgeable. He is kind, funny, and showed interest in me and my care. But, it is disturbing not to have test results for 2 weeks. And, it is discomforting to know that I won't be able to get in touch with him or his office for weeks at a time -- and, I have no follow up scheduled (he wants me to repeat labs in 4 months and wrote a standing order, but that is it). I want more. Is that wrong? Am I selfish?

I'm beating myself up. I'm grateful for the care I receive. I am thankful for I know so many do not have access to good medical care. I am seeing someone from one of the best hospitals in the country! But, just because someone is a good doctor (and I believe he is a good, if not excellent doctor), does that mean they are the right doctor for me? I wish I knew these answers. I wish my friends didn't judge me and tell me that I am asking too much, complaining too much, am just being too judgemental and jaded. Diabetes is scary. My hypothyroidism is scary. I have other medical issues at play and I have a lot of allergies and sensitivities. Maybe I am the problem? But, what if I'm not?

I don't really expect answers. I just needed to get this out. My eyes can barely stay open yet I am obsessing and worrying. I'm feeling scared and alone. Tomorrow will be a new day, a better day. I know my emotions are running high. I know I need to go to bed. But, I thank you for giving me the time and space to post tonight. I'm feeling some better already...

 

[3catsn1dog]

You are well within your rights to feel uncomfortable or upset with a dr. This is your life they are taking into their hands of course you can feel worried about what they are doing.
IMO I would be livid if a dr was putting me on all kinds of meds and NOT monitering me. Thats messed up IMO. I know DFs gram was having issues with meds and was border line diabetic..she needed to moniter her blood sugar levels but didnt need insulin. She was seeing her dr every week for blood work to see if her meds were helping or needed adjusted. For about 6 mths she was going thru all this blood work monthly changes in meds and now finally has everything leveled out...and this is at one of the junkiest hospitals in the area...seriously...I cant think of anyone who likes this hospital and they treat her like the golden goose and with the utmost respect for her health.

 

[Winchester]

I'm sorry you're having so many issues with your doctor and your treatment. And I'm glad that you did the research on the prescription he made out for you....it's disheartening to know that he prescribed it even though you made sure they knew about your allergies.

I wish I knew what to say to you to help you feel better, but I just don't. Telling you to "hang in there" or "I wish you well" seems so trite in light of what you're going through. I just don't know what to say and I'm very sorry.

 

[tara g]

I'm sorry you're having these issues. When you have so much going on, you should be able to feel comfortable and content with your doctor and the care you're receiving. To feel like an individual, not like just another patient number passing through - no matter how it may seem to other people! I'd want to feel 100% about the care I was getting and not feel uncomfortable about the medications prescribed.

I had a blood draw done for a wellness event at work and got results today saying I have high levels of TSH ( its at 7.2, normal was 4.5 on the sheet) and am now upset, worried, and angry at my [gyn] doctor (3 years ago she had me get tested for hypothyroidism/had a full thyroid panel done and they never called me about results. I asked at my next appointment and they said "oh, no news must have been good news in this case.") I now wonder too if there are things that are just getting looked past or ignored...

Four months seems like an incredibly long time to go on medication and not be monitored.... I was reading things today that said two months is too long! That is scary you were prescribed medication that could affect you so negatively if you hadn't researched it, after telling them about your allergies.

and

for you.

 

[alicatjoy]

I'm feeling better this afternoon, but I am still overwhelmed and confused. I am tired of second-guessing myself. But, I am feeling more confident in myself -- even if I am not 100% confident with my doctor or with my treatment, I know I am my biggest advocate and I am proud of my ability to handle myself and my care well.

I slept in this morning and then had a bit of an emergency (not medical in nature) and so I just now had time to take care of some other things. I just put a call into my endo's office. Apparently, the office I saw him at on Monday is not his primary office and they were able to forward me to his main office so I could speak with his secretary. I do feel better knowing that he does have a primary office and location with staff as I had been told that the office I saw him at would not take messages or handle patient calls. So, in some respects, I feel more comfortable now. I informed his secretary that the medication he prescribed contains sulfa, which I am severely allergic to. She said she would forward a message to him and have him call me back. I suppose we'll see how he responds to a situation such as this one. I'm hoping to get a call back today and that would certainly raise my confidence with him as a doctor, but I also know that that may not happen. And, I'm prepared for that as well. I'm not sure that I am going to continue on with him as my endocrinologist and partner in my care. But, until I make a final decision and until I have someone else available to me, I am going to work with him. Thankfully, I have an amazing primary care physician who can help pick up the slack if need be, but, I am still feeling as though I need more. I need a team on my side -- not just doctors. A team. And, while I've been hard on myself for wanting or needing more (and feeling guilty for having those needs), I am going to move forward and take care of myself. Many people go for second, third, fourth, and fifth opinions. Individuals try doctors and then move on to others. I should be no different. Taking care of myself is my main concern and it is okay for me to want the best for myself. I'm underlining and highlighting that since I need to remember that (and remind me if you see my faltering).

So, for today, I am doing alright. It's a process. I didn't choose to have diabetes, but now that I do, I need to be present and active in my own care. I don't need to accept care if I don't feel it's appropriate based on my need. And, I am an advocate for myself. For now, that brings me some peace. Whatever comes next will be dealt with then -- until then, I am okay. Everything is okay.

 

[pami]

I would be really upset that a Dr prescribed me medicine that I was highly allergic to. I would also be concerned with you not being monitored on the change of medication, especially when the main reason you are going to the Endo is because you cannot find the solution to the issues you are having with Diabetes. Diabetes is serious and its very important for you to find the right dosage and medication to get your numbers to a safe a level. Putting you on a new medicine and not seeing you for 4 months is irresponsible, IMO.

I would address my concerns with Endo when he calls you back. If there is no change in concern, especially with you having a special case, I would find a new Endo, who will monitor you effectively. The new Endo could have your records sent from the old one to his/her office so they will not have to retest you on things.

It is up to you to find a Dr. who will care for you appropriately, unfortuantely. Since you have not been able to get your numbers into a healthy range, I think it's vital that you have a Dr. that will closely monitor you until you can get everything in normal ranges. You are not going to feel better until they can get you into a normal range, unfortunately, that's what diabetes can do, but can also cause other health issues, which is why its so important to find a Dr to stand by you 100% until you are well.

I am so sorry you are dealing with this.

 

[ldg]

Alison, forget the naysayers (I know, easier said than done). Doctors and specialists get away with their practices exactly because people are intimidated, don't speak up more, and don't demand - or even expect - more.

And you're right. You do need a team. Doctors that will work together. Even though Gary's team wasn't able to solve his problem, it was still an incredible thing to feel that all that effort doctor-hopping was worth it, because IF there was going to be a resolution to his problem, it was three different specialists working together that was going to find it.

And, quite frankly, if his neuro-specialist hadn't involved the cardiac specialist, Gary would probably be dead. He was trying various medications at off-label doses, and required weekly monitoring of his heart. Good thing, because several of them did have a very adverse impact on his blood pressure.

So IF the endo calls you back and turns out to be someone willing to work at it, perhaps the more frequent monitoring could be done by your GP?

In the end, Gary's GP is pretty much out of the loop. Funny enough, his pain doc took point on coordinating his care. But that's all it really takes - one doctor to take that interest and be willing to invest that time, and coordinate the information from you, your body, and the other doctors/specialists involved in your care.

I don't know where you're located, but I do know there is a shortage of endos in the country, so time pressures for any of them might be a real challenge.

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