What Can I Expect With An Endocrinologist??

[Hoosierfan]

Folks, haven't posted here in awhile....it's been a rough six weeks or so. Florinef tapering did not go well (lots of lightheadedness, dizziness, feeling really weak, tired, and these zappy jitters I can't explain). This just from a .075 to .05 reduce....arghhh!!

Anyway, the whole thing was so disconcerting to me (after 16 months of battling not feeling well and trying to find the right mix of meds), that I found myself in a major depressive episode. Been here before and it is not fun, and compounds everything else. Anyway, it is where I find myself. My pDoc is upping my Effexor dose to try and kick the depression as well as take over for the florinef. She also added some Ativan 4 x a day but it makes me dizzy and want to sleep.

My docs are working on getting me in to see an endocrinologist, because they are truly stumped as to why my bp dips so badly before my period, and why I am having such trouble getting the florinef dose right. Hoping to get in within the month.

I've never been to an endo, so what can I expect, what questions should I ask and what tests should I insist on? Of note, I know there is a thyroid history in my family. I know some on here treat for "borderline thyroid" -- what's the current range and thinking there? Any advice you can provide would be greatly appreciated since this will be my first foray with a doctor like this and I want to get out of it everything I can.

[issie]

I was just thinking about you and your taper off florinef. I was wondering if you were being sucessful with that or not. I have heard of people having to stay on florinef because their adrenals wouldn't pick back up and start producing aldosterone on it's own after having been supplementing it. I bet they want you to have your adrenals checked to see if they are working properly after your florinef taper. It's possible for your adrenals to slow down production when the aldosterone is being supplied to them. Since aldosterone regulates our salt and fluid levels this can have an effect on your POTS symptoms. Florinef has been known to lower your potassium levels too - so making sure those are up will be very important. Low adrenal function can cause the symptoms you are describing of being tired and depression. The adrenals are such a major part of how we function and anything off with them can give us symptoms. We are so sensitive to the hormones produced by them. Hopefully, they will have started to pick back up the function on their own. They will probably check your levels and see what's up with them. They will probably check your cortisol and aldosterone levels and maybe some other things with your adrenal function. Aldosterone also plays a part in kidney function. So, maybe taking a look at that function could be beneficial. The renin/aldosterone ratio. (You can look up info on that. Or do a search on this forum - lots of info there.)

Also, yes, they do deal with thyroid issues too. Seems like many of us have some sort of issue with that too. There's different ideas about treating borderline low thyroid - some do find a great benefit from it. There could also be a problem with T3 conversion. Some are using Armour thyroid as it has both T3 and T4 properties. Many docs don't like to give that though - because they say they don't know how much of each thing is in it. But, for some (I have a friend that uses it) that is the only one they tolerate. Issues with thyroid can also cause tiredness and it being the master hormone regulater - some of your hormone levels could be off.

Sorry you are in a low. It's not at all fun. I got in one in the last year and thought I'd never pull out. It was horrible. I know my friends all hated to see me that way - cause I'm usually up and positive. My husband really got concerned cause I just wasn't being able to pull out. But, I'm much better now ---time does help things. I hope that maybe figuring out some of your dysfunctions will pull you up and out of the deep hole of depression that you're in. I wish I had something to say or something to tell you to do that would lift the cloud for you. I have found being outside and trying to pay attention to the little things around me seems to help. I will sit in my swing and swing - that has a soothing, calming effect for me. I love watching the birds and listening to the sounds around me. I like to take photos too and that makes you tune into nature.

Keep us posted on how your visit goes and how you're doing.

Issie

[Hoosierfan]

Thanks, Issie for the advice and kind words. My pcp was like "there is no way your adrenals won't pick up if we taper," but now I hear you say otherwise, so I'm glad at least I'm getting into an endo to get it checked -- still waiting on the appointment. I've been on the florinef since Jan. 2011, but never had my aldosterone levels tested.

In the meantime, I scored an appointment with a holistic / integrative medicine doctor in 2 weeks -- he may be able to look at some of the things the endo will look at, but in any event I'm really excited to have someone look me from top to bottom and figure out how all the systems are relating. No question, for example, that my GI issues are related to the depression. (oh, and I don't have POTS, just regular old NMH!!).

Good news is that the higher dose of effexor seems to have bumped my pressures up a little bit; Aunt Flo due this weekend so the real test will be the next couple of days.....

[issie]

I dont know if they have ever done any studies on people who use florinef for dysautonomia to see if it causes the adrenals to not pick up - but, have talked to a few over the years that seem to think this (so, no concrete study on it. At least not that I'm aware of.) That's why the wording of possibly. So hoping that's not the case and will be interested to learn what your outcome is.

Yay on the natural doc and also that the med is helping the depression. Let's hope Aunt Flo ( ) comes and goes without a hitch.

Issie

[Hoosierfan]

Thanks, Issie. You know the "black dog" -- some days it is worse and other days it is better. I've had two episodes before, which lasted several months but responded nicely to medication and CBT. Of course, "it" tells me that it won't go away this time. Grrrr. I'm the same as you, normally up beat, tons of energy, life of the party, Martha Stewart -- so I really hate being in this place.

On the aldosterone, what levels are they looking for or what are considered normal? Will they make me stop the florinef or the SSRI prior to testing (eeek...really don't think I could do that!)?

[issie]

You will need to check with your doctor on that question. What I do know is it won't be accurate on meds. But, you need to do what your doctor tells you to do. I bumped up some really old threads on aldosterone and renin today - so you have plenty to read on it.

Yeah, wish that cloud would leave us both.

Issie

[firewatcher]

My Endocrinologist was very good; he did orthostatic vitals on me during my first appointment and got me on the path to diagnosis. Generally, an Endo will want fasting bloodwork to start to check for blood sugar and other wonkiness that would be obvious. I was scheduled for several other tests within two weeks and given detailed instructions on how to prepare: cortisol, Lh/Fsh, estradiol, catecholamines, TSH, T4, thyroid antibodies, etc. Your symptoms will give him more of an idea what to look for. Be prepared to give a LOT of blood! I gave 17 vials in one day...I looked like I'd been attacked by a stapler wielding vampire! Have someone go with you for your fasting labs and testing, believe me, you don't want to drive after these.

Good luck!

[firewatcher]

BTW- my endo did an aldosterone/renin test, but did not follow proper protocols, so the test was not accurate. IF you know what tests you are having, research them yourself so that you know how to give the best samples!

[CharmedLinz]

Firewatcher is right........research tests.

My first inclination to answering your question.... "what to expect at an Endo" was to be flat out Honest and say "Don't expect much"

I've seen 6 and not 1 had the same opinion as another. I hope you have better luck.

It took my Cortisol dropping to 1 after surgery for any of them to go from "you might be adrenally insufficient" "your tests are in the gray zone" to..... Oh yup you definitely have adrenal problems, but it's coming from your Pituitary.

My PCP found my PolyEndocrine Failure possible DX.

Finally saw a Thyroid surgeon last week, my 2nd one, that was appalled and shocked by my labs and what has just been shoved aside and ignored.

SO I think it's like the rest of Doctors........... There are good ones out there, you just have to find the ones that really want to help and don't mind looking for Zebras instead of staying in their nice comfy box and only looking for ordinary horses.

One thing I can tell you for sure.............

You can NOT have an accurate Aldosterone test while on any amount of Florinef as it replaces the effects of Aldosterone in the body.

And the only way to get an accurate Cortisol reading is to have your fasting blood drawn between 7 & 8 AM.

Like Issie said about Florinef and adrenals. The theory is that your adrenals should be able to pick back up if you are off but not if your Adrenals aren't healthy.

My aldosterone and renin levels via 2 accurate tests before starting Florinef were way under level, so if I went off Florinef my adrenals would not pick back up.

I have missed a dose a couple different days for tests and started spiraling down by noon that same day, my body can't deal without it. I believe this is why it doesn't help my BP much either, because my body is using it for other things.

I really wish you luck, do your research, don't blindly trust what any Doctor says.

Sorry to sound negative, but I've found if I go in hoping for too much, I come out being more disappointed.

[issie]

Like Issie said about Florinef and adrenals. The theory is that your adrenals should be able to pick back up if you are off but not if your Adrenals aren't healthy.

My aldosterone and renin levels via 2 accurate tests before starting Florinef were way under level, so if I went off Florinef my adrenals would not pick back up.

I have missed a dose a couple different days for tests and started spiraling down by noon that same day, my body can't deal without it. I believe this is why it doesn't help my BP much either, because my body is using it for other things.

I've found endocrinologist to be the most difficult doctors I've ever tried to see also. I hope the one you will see will be a pleasant surprise.

Your above statement about having low aldosterone and renin levels before being on florinef and you knowing your adrenals wouldn't pick back up - is the very reason I'm worried about the way most POTS patients are treated. If you have a known adrenal dysfunction I can see being on florinef - because there isn't any known way to get them to restart on their own - usually you would have to replace aldosterone and cortisol. But, for people who have no adrenal dysfunction to be put on florinef and it lower their function - not knowing what the long term effects will be ------to me is very scary.

I have low aldosterone levels and low renin and with every surgery I have I have to have cortisol or I tank. I've had to do cortisol a couple of times in my life. To look at me you'd think I'd have high cortisol levels - but mine are low. I know I have adrenal dysfunction - but, no one addresses it. I couldn't do the forinef because it gave me horrible miagraines - tried it for over 4 weeks. And it made me have muscle tightness and cramping. The Mayo docs don't seem concerned about even addressing this. But, I think there is some sort of connection. I also have high bp and crazy surges and high hr. So, taking something that may increase my bp isn't even an option. Doctor doesn't even want to go there. Sooooooo, life does get complicated and it's hard to know what to do.

Like you, I learned the hard way - to question everything and research things on my own. I've been messed up by doctors too many times to blindly submit and do what they tell me. We are ultimately responsible for our own health and we have to look at it that way and do our research.

[Birdlady]

Honestly...most endos aren't that good. Most of them specialize only in diabetes. It can be hard to find one that will take you seriously when it comes to hormone testing. Many of them don't have a clue how to interpret the results of the tests any way....

[songcanary]

I agree with the other posters. If it were me, I'd be more excited about the integrative doctor. I saw one a few times and she was the first doctor to do extensive (out of the box) bloodwork and found my low free T3 level. If I hadn't had that done, I wouldn't be on Armour today. I cringe to think of that, it has been a miracle for me.

Anyhoo, I hope you feel better soon. Best wishes!

[bkweavers]

My daughter was born without a thyroid gland so she's been on synthroid since birth. I would make sure that the endo you go to doesn't just test your TSH. Make sure that they also do Free T4, Free T3 and two antibody tests as well, TPOab and TgAb. They can't get an accurate picture of what's going on if they just test your TSH, which is what many doctors will do! I've been researching natural thyroid medication as well as just treatment in general. From talking to others online, it seems that there are so many people who are borderline like you, who are being told they don't need medication. When they finally push for it or find a doctor to take them seriously, they feel so much better. Too many doctors out there are only looking at the test results and not looking at the overall picture and symptoms.

I'm taking my daughter to a new endo in the hopes of finding someone who also treats to the symptoms. Can't say I'm that optimistic since we've been to plenty of doctors who don't listen!

To me, having a thyroid problem along with autonomic is very confusing since many of the symptoms overlap. Do you have other hypothryoid symptoms besides fatigue?

Brenda

[sue1234]

Most endos these days look mostly at diabetes, and secondly at thyroid function. And, just the bare necessities of looking at thyroid unless they feel nodules. Then they seem to delve a little more. It can get discouraging, but there are some good ones out there that look at the whole picture.