My Adrenal Insufficiency Saga Continues.

Well, I have a few new things to post here tonight regarding my ongoing struggles.    

I did call my nephro after I had complained a couple of weeks ago of my new diuretic (Edecrin) not working.  My nephro was not in that day.  The doctor on call great increased the dosage to jump start the water loss.   Instead of taking 25 mg daily.   He wanted me to take75 mg that first day and then 50 mg every day thereafter.   It worked great that first day, and fairly well the second day, but it has seemed to lose its effect.   I lost 4 pounds of water over night that first night, and I lost 2 more pounds the next day.  Since then the scale has gone up 3 pounds!   I am still VERY full of water!   Still pitting all over my body.   Since so many people on Florinef (the adrenal medication) gain large amounts of weight, I can't be sure if the scale if moving upward from water or from fat!   I guess I am hoping it's water, because I will probably be on the Florinef for a very long time; maybe forever!   But, then again, if it's water, that is not normal, and we need to get rid of that too!     I will be seeing the nephro tomorrow.   It's been a month since I've seen him last.    I have a LOT to discuss with him.   This is on my list.

The Florinef I started taking 4 weeks ago seems to be helping some.   My blood pressure is staying more normal now.  It stays mainly between 100-118/50-70.   The systolic pressure stays in a pretty narrow range, but the diastolic pressure varies greatly, still dips into the 50s, and every great once in a while, into the 40s.    It is definitely improving though!

I am not as weak as I was before I started the Florinef either, and this is very nice!    I'm still not 100%, but quite a bit better in that respect.

I am no longer nauseous, and that is also VERY nice!  

That terrible dryness and soreness in my mouth, on my gums, and on my tongue, which started a little over a month ago, started to improve 3 days after I started the Florinef.    Since low aldosterone suppresses the immune system and causes a person's allergies to be worse (and I had questioned a possible sulfa allergy from the HCTZ), I am unsure if it was the Florinef raising the aldosterone level or me stopping the HCTZ (which contained sulfa), or maybe BOTH, that helped to heal the inside of my mouth, gums, and tongue.   To be honest, I don't really care.   I'm just happy it doesn't hurt in there anymore!  

My latest lab results are in, and they are a little disappointing.   I was hoping my aldosterone and renin would both be much higher than they are.   The first time my renin (a kidney enzyme) was tested in July, it was found to be 0.28.  Normal is 0.25 - 5.82.    When I learned that HCTZ can raise renin and aldosterone levels, I stopped taking the diuretic for a week and retested these levels.   This time the renin was 0.18.  Too low.   After being on the Florinef for 3 weeks, I had blood drawn again.  This time I had been taking the new diuretic, Edecrin.   I did some research, and I could not find anything mentioning that it affects renin and aldosterone, so I did not stop taking it before my blood was drawn.   This time the renin was 0.09!!

My aldosterone was just a bit more encouraging this time.   When it was tested the first time in July, it was found to be 4.  Normal levels in a sitting position is 4-30.    After staying off of the HCTZ for a week and retesting, it came back at <1.    The next time it was tested, I had only been of of the HCTZ for 4 days before the blood was drawn.  That time the result was 2.     It was then that I was started on the Florinef for the adrenal issue.    This time, as mentioned above, I stayed on the diuretic (Edecrin) right up until and beyond the blood draw.   This time it was revealed to be 4 again.   My nephro wants this level to be at least 8.    I am very afraid he is going to want to raise the Florinef dosage.   I am afraid because of the side effects.  

Florinef raises glucose levels.   My glucose has been between 89 and 94 for years.   When tested last week, it was 101!   I cannot afford to have it go any higher.   There is a lot of diabetes in my family to begin with.   This is not good!   I have spoken to a few different people in support groups who now have steroid-induced diabetes.   I REALLY do not want to deal with this too!

Florinef also causes weight gain.    I have had to watch my weight my entire life, and I have watched it!   My family thinks I'm crazy, because at the age of 61, I STILL refuse to eat things they do, for fear of gaining weight.    And I am NOT thin!     They all wonder why I still care so much about my weight.   Diabetes is one reason.   Of course, I do not want to look any worse, but health is also a big worry for me.

My calculated osmolality is very low, which indicates overhydration.   No big surprise there.   It is, however, up to 276 from 274.  I guess that's some improvement.    

My urine specific gravity is also low.  Also expected with severe edema.  

Sodium had come up slightly.  That is good.

Potassium has me a bit concerned.    Low aldosterone causes high potassium.  Mine had become high/normal, but never rose above the normal range.  For many years while I was taking the triamterene/HCTZ, I had to take potassium supplements, because HCTZ lowers potassium.   When my nephro prescribed a new diuretic recently, he intentionally prescribed one which was NOT potassium sparing, because he was afraid my potassium would rise too high.    Well, my potassium dropped from 4.2 to 3.6.   Normal is 3.5-5.1.    I am going to ask tomorrow if maybe we should start supplementing the potassium once again.

I noticed my magnesium is now very low/normal also.   It looks like it has been falling steadily for a couple of years.    It was 1.7.  Normal is 1.5-2.9.   I have been taking magnesium supplements for years, and it is still that low!    I have increased it a little now.   Many of my symptoms can be caused from low magnesium and low potassium.    I am hoping these symptoms will improve after increasing both.

So I did more research, made more lists, talked to more people, and printed more material to take along with me to my appointment tomorrow.    I am happy I'll get another chance to see my favorite doctor, but I'm a bit scared because once again, my body is not doing what is supposed to, and I don't know if even this doctor will be able to figure this all out!    

Onward!

Audrey

As usual, Dr Aud, you're keeping in touch with what's going on with your body and since you know the positives and negatives that are or could be happening, it should make for an interesting meeting with Dr Nephro. Please let us know what he recommends this time and all the best for your appointment. 

I'm pleased that some things are better than they were but I can't wait for the day that you're cured, Audrey! You've been through such a lot, we need your body to throughly behave and get well now. At least if some things can't behave, it would be great if they could get themselves under control! I'll be thinking about you today and waiting to see how your appointment goes. 

Love and very many hugs 

Brigitte xxxx

Audrey you really have been through so much, I sincerely hope that your appointment goes well, keep us posted.

Mel x

Hi Audrey, I hope all goes well on your appointment. I just did a bunch of blood work today. I notice he included Magnesium this time. I looked through all my labs  and it is funny that mag was never been tested. The last time my potassium  was check it was on the high end of normal. I hope you get straightened  out once a for all. Kathi

Brigitte, I do hope you're feeling better dealing with the recovery process. It is so sad that we all must suffer so.

I hope you are ALL feeling better. If not, I hope you will very soon!

My appointment went very well on Tuesday! I left a little confused but feeling optimistic once again.

My little nutty nephro was speaking with a VERY thick, Greek accent, which made it very difficult to understand a lot of what he was saying. I had to ask even more questions than usual.

He was a bit upset that I had gained 3 pounds since my last appointment a month ago. I told him there is nothing I can do about that. I am not overeating, and I work out every day regardless of my pain. He took a look at my feet and ankles, and he understood. It was obviously from all of the water.

After looking at my latest labs, he has now decided I have Liddle syndrome. I had never heard of this until he mentioned it. It is a genetic disorder which causes the sodium channels of the epithelial cells in the kidneys to stay open, causing the kidneys to reabsorb too much sodium. This causes edema, which originally causes high blood pressure, but if left untreated too long, will eventually cause the kidneys to stop producing renin, which slows the production and secretion of aldosterone from the adrenal glands, and will cause very low blood pressure. He told me most times this is caught when a person is in their 20s or 30s. I told him I have been having trouble with edema since I was 28. I have mentioned before on the forum that I had a terrible allergic reaction to a wood stain I had been using when I was 28 years old. I broke out in hives from head to toe, then all of my joints swelled up terribly, and was so painful I was practically crippled for many years. I told him I started having trouble with edema at that time. It would be bad for months and then improve. It has been doing this for 33-1/2 years. I asked him if it was possible that the toxins from the wood stain damaged my kidneys in some way, causing this to happen. He said he couldn't be sure about that, but that Liddle's is genetic, so I would have, of course, been born with the defective gene.

It all made perfect sense when he first suggested Liddle's, but after I thought about it for a while, I started to think differently about it all. I wondered if Liddle's causes the kidneys to reabsorb and retain too much sodium, why was I losing so much sodium in my urine, and why has my serum sodium never been elevated? Hmmmm............ I hit the internet.

I learned that with Liddle's the serum sodium should be high, and the urine calcium should be low. That only makes sense. My levels are just the opposite. ???? So, as much as I'd like to believe my favorite doctor has solved this mystery, I am still a bit skeptical.

I asked the doctor if he felt the kidneys would start producing renin again if we eliminated the excess water. He said he thinks they should. If they do, that would help to increase the aldosterone level also.

I asked if there was a chance I might be able to stop taking the Florinef (adrenal medication) in the future, if this all goes as we plan. He said it is quite likely I will be able to. That was nice to hear, since side effects of the Florinef include edema and elevated glucose levels.

Speaking of glucose levels, mine has risen to 101 from 94 last month. I asked the doctor if we should be concerned about this. Normal here in the US is 69-99. The range used to go as high as 110, but they have changed it to 99. He told me there is no concern at all. He said that level of 101 is just fine. I hope he's right.

I told him I noticed my urine specific gravity and my osmolality levels were both low. I asked him if this was from all of the edema. I suspected this because I had already been on the internet, and I had a hunch this was the case. He said it was.

Something else that had me confused at this appointment was, when I asked the doctor if we still needed to get my aldosterone level up higher since it was only 4, and he had stated at my last appointment that he wanted it up to around 8 or so. He looked at my lab results again and told me it was now between 8 and 12. ??? I had a copy of the results, and it clearly stated 4! I questioned this. It was my understanding that Florinef raised aldosterone levels, and since mine is now 4 instead of the previous <1, I thought that's what it was doing, but I figured if we needed it to be up to at least 8, we would need to increase the dosage. He told me that there is no way to test for Florinef in the blood. I was unsure why he thought I was suggesting we test the Florinef level. He seemed to be getting irritated that I could not understand why he was telling me my aldosterone level was between 8 and 12, when the lab results clearly stated it was 4! After he further tried to explain this, I THINK I understood. I think the Florinef does raise the aldosterone some, but I think it also helps the body to "think" there is more aldosterone in the blood than really is. Does this make any sense? I think the Florinef helps our bodies to function as if the aldosterone was higher. At least, that's what I got from his explanation. As I started earlier, he was speaking with a VERY thick accent yesterday, so I am not totally sure what he was saying!

I think one of the reasons he was leaning toward Liddle syndrome as the cause of my remaining issues, is because of my potassium levels. Low aldosterone causes low serum sodium and HIGH potassium. This is why he wanted me to be on a diuretic which was NOT potassium sparing. He didn't want my potassium to rise even higher. It would appear I need a diuretic which IS potassium sparing, because my potassium is now a bit too low. Liddle syndrome causes higher serum sodium and lower potassium. I think this is why he is leaning toward Liddle's, and why he has switched my diuretic to a potassium-sparing drug.

I think I must have held him up a bit at this appointment. I am not one to walk into a doctor's office, let him speak, and then leave. I need to understand what is going on with my body! At my last appointment there were 3 of us there who were scheduled for the exact same time!!! This angers me!!! On Tuesday when I arrived, there was only one other person in the waiting area. I was surprised, but thinking how nice. When I left, there were 8 people sitting there waiting to see the doctor! I don't think he is used to having people ask questions and make suggestions during their appointments. He wants them out in 5 minutes. He never seems to really rush me, but I think he would like to. Maybe he will learn to give me a bigger time slot! : )

He was not happy with the diuretic the doctor on call prescribed for me a couple of weeks ago when I contacted them saying I wanted a diuretic which did not contain sulfa. He said they very rarely use this particular drug, and that he wanted me to use a different one. So he prescribed amiloride. He wants me to continue taking half of the dose of the first diuretic and start taking this one also. Eventually, he wants me to wean off of the first drug.

Since I started the new diuretic, there is a noticeable improvement with my edema! My feet are starting to resemble feet again, and my ankles don't look like soccer balls! Well, that's a bit of an exaggeration. I guess they looked more like grapefruits. Still way too large! The scale, which would not budge, is down 3 pounds in 2 days. That is a lot for me.

I am still having a LOT of neck pain and pain with my tendons in my upper arms, inner thighs, and backs of my knees. I know that low aldosterone and Liddle syndrome can cause muscle and tendon pain. I sure hope this stops soon! My neck has now been terribly stiff and painful for 4 straight years!

Yesterday I did have a lot of energy in the afternoon. That was very unusual. My arms have been a little shakier than they had been for a while. Not sure what is going on with that. My arms still jerk also. And I'm still twitching in my eyelids, lips, cheeks, lower legs, and thighs. These are not as intense or as frequent as they were for many months. I'm hoping this will all improve as time goes by, and I get my hormones and enzymes in check! I'm sure it's all related to the wacky hormones and all of the edema. The constant nausea is still gone, and I am not nearly as weak as I as for months! And my blood pressure is looking much more normal now!

I will be seeing my new neurologist later on this month. Maybe he'll have some input regarding the twitching. It has so greatly improved, it is not at the top of my list of concerns, but it would still be nice to know what's going on.

My next appointment will be with my endo next Tuesday. I was going to fire her when she didn't know how to diagnose the adrenal insufficiency, since she previously would not raise my thyroid meds, and also was not able to diagnose the hyperparathyroidism, but I thought I'd give her one more chance. Looks like she just may have been right about the adrenal issue after all. She said it looked like a kidney issue. Looks like it just might be now.

Well, I think I have covered everything with yet another book here! Sorry it's so long, but, again, I like to include as much as I can in hopes of helping someone else with an issue or 2 if they should read it.

Audrey

Sorry I never replied here, Dr Aud. I always read your posts though. I expect it will take some time to sort you out and make your body behave itself. I hope you're still optimistic and less confused now some time has gone by. Are you feeling better? And did you see your Endo and is she still in your life or did you give her her marching orders>

Love and hugs

Brigitte xxxx

Thank you for caring, Brigitte.   I do appreciate your concern.   As mentioned in my previous post on a different thread, I am so very sorry you are still having so much trouble yourself.  Sure wish I had a magic wand so I could take all of this away from everyone!

Yes, I guess I'll still be seeing my endo.   She did say a few very irritating things to me at my appointment on Tuesday, but then she would say something that made me think she is still human, so I guess I'll continue seeing her a bit longer.

The endo started the appointment showing her anger because my nephro increased my thyroid meds without consulting HER.   She is very unhappy that my TSH is now so low at 0.06.   My free T3 and free T4 are now both mid-range.    When my TSH was higher, the free T4 was low.     She threw up her arms and said, Well, we might as well just let HIM take care of your thyroid!"      I told her that that terribly intense itching and peeling inside of my ear canals, which was going on nonstop for 4 straight years, stopped completely a few days after we increased the thyroid medication.    She laughed and said, "Well, I never heard of itchy ear canals as a symptom of hypothyroidism."     I told her I have heard of several other people complaining of this before they're levels were optimal.   She said, "Well, those people aren't doctors!"     I told her when a person goes through an illness, I think they might know what they are talking about when they discuss it.   She didn't say anything.   When she made that comment about her never hearing of itchy ear canals being a symptom of HPT, I came very close to reminding her that she also did not think bone pain was a symptom of hyperparathyroidism, and she was wrong about that!!    But I didn't say anything.

I asked her if she would be willing to order testing for adrenoleukodystrophy.   I came upon this disease while researching for causes of severely stiff muscles.    This disease causes adrenal insufficiency, muscular issues, and neurological issues.    If you recall, I have been twitching all over my body for many months; my muscles have been VERY stiff and painful in my neck, upper arms, thighs, and fingers of my left hand; and my muscles have been jerking often in my arms, hands, and now my right leg.    I think this would warrant testing for adrenoleukodystrophy.    She refused to order the test.   I even told her which test we needed to run.  She told me she can't just order tests without having any sort of diagnosis to base the testing on.   ????????    First of all, I think we have reason to run this test, and secondly, do we not run tests to MAKE a diagnosis?!      

She was upset because she did not get a copy of my latest labs.  I told her I requested she receive a copy when I was at the hospital getting the blood drawn.   She said, "Well, that doesn't mean they sent them!"    I had a copy with me, so I showed them to her, and she made a copy.    I think she was impressed that I was so organized and had all of my test results, BP levels, typed notes, typed medication list, etc. with me, but she was still upset about a lot of things.

I asked her if I should be taking potassium supplements since my potassium is at 3.6 and normal is 3.5-5.1.   I have read on a few websites that anything below 1.7 should be considered low.   I told her I am having so many issues with my muscles, I am wondering if I might need more potassium.  She said since Florinef lowers potassium, and I am now taking Florinef (prescribed by the nephro), I would need to talk to HIM about potassium supplements.  

I asked her if I should be taking more magnesium.  My level is now at 1.7.  Normal is 1.5-2.9.    She said my magnesium is just fine.    I have been taking 750 mg of magnesium for months now.    I will continue that dosage.

I forgot to mention, I did butter up the endo a bit at the beginning of my appointment.  I told her she was right on the money suggesting my adrenal issue was actually a kidney issue.  At least, I think she was right.  : )      I figured I'd better get on her good side in preparation for requesting some new tests.  

I asked the endo if we could recheck my electrolytes soon, due to the very low/normal potassium and magnesium levels, and I am also concerned about my sodium, because I have been feeling VERY weak again, and my blood pressure yesterday was not good.   It was down to 80/50.     It's been worse in the past, but this is still too low.     I really think we need to increase the Florinef.     I will probably have a problem convincing the doctors of this since my pressure is usually high at my appointments!     Even though I show them my list of pressure taken here at home, which are all low, they will not budge.  I think they think there is something wrong with my machine.    I keep telling them I took this machine to my PA's office last year, and we checked it against hers.   Mine actually read higher than hers!     Just one more battle for me, I guess.

I mentioned to her that my hair has been falling out a lot again for a few months.   I knew exactly what she would say about this if I mentioned it.   I knew she was going to immediately tell me it was because we raised my thyroid medication.   As soon as I told her of this, she lifted her head, sort of swayed her head, and looked like she was about to speak.   Before she did, I said, "And it's not from the increased thyroid meds, because it started at least a month before we raised the meds."   She didn't say anything.

I also asked her if she would check my vasopressin level for me. Vasopressin is the antidiuretic hormone. If this level is too high, it could be why I am so full of water. I just need to rule things out to get to the bottom of all of this. She agreed to order this test for me. I thanked her.

Please know that I am not a total b**** at my appointments.   I just refuse to sit there and be quiet when I know what I'm talking about and when the doctors continue to make false statements.

At one point, I apologized to the endo for being such a challenge.    I told her I'm sure my doctors would like to run the other way when they see me coming, but I am very sick, and I will do whatever I have to do to be well again.    And I told her I will continue telling of my own experiences, whether they makes sense or not.    If she chooses not to believe intensely itchy, peeling ear canals is not a symptom of hypothyroidism, that is her choice, but I hope if someone else comes into her office complaining of itchy ear canals, she will at least give this some thought!

When I left her office, I thanked her for all of her help. I wish she would have helped a bit more, but I am thankful for all of the help I can get!

I have an appointment now with my new neurologist next Friday.   I am hoping I can convince him to run that test for adrenoleukodystrophy.     It is, after all, also a neurological problem.

Sorry again for the long post.   If you all don't wish to comment on it, that's ok.    I just type it all in case someone happens upon this forum looking for answers, and just possibly they will find something here that might help them.

Audrey

Hi Audrey

I can't comment on some of your problems as they are things i have no clue about, however i do know about thyroid issues and a tsh of 0.06 although low is ok if that is where you feel best and we all know that the tsh test is actually useless (shame docs don't know) it's T4 and T3 that tell us more.

Are you sure your calcium is ok ? Just thinking about your muscle twitching.

Nelly

I understand, Nelly. Heck, half of the time I don't understand my own posts!

Yes, I almost laughed when my endo told me that the TSH was the most important test when diagnosing thyroid issues. You'd think she would know about this, wouldn't you?

As far as me feeling well with my thyroid levels where they are, I feel like crap all the time, and I have so many things going on, I have no idea what is causing what. Since that horrible itching and peeling in my ear canals stopped a few days after we increased the Armour, after going on for 4 straight years nonstop, I would think the Armour needed to be raised, but that is about the only improvement I have felt since doing so. I know the adrenal issue is still causing a lot of trouble. Maybe once we get that under control, I'll be able to tell about the thyroid.

My latest calcium was 9.7 (2.4 UK numbers), so it doesn't appear that my twitches are being caused from low calcium. Thank you for the suggestion. I wish they were being caused from low calcium. At least I would know what was going on. My body is so complicated!

Audrey

Sorry you going thur so much still. My sister's friend said her endo totally screwed up her thyroid meds and a different specialist is the one who fixed her up and he wasn't a endo. Can't remember what he was. At 9.7 does sound like calcium is good. Have you ever tried taking a tum when you have the twitches just to see if your body doesn't want a little more calcium, you know I think it gets use to the higher levels. I don't mean take a few but maybe one to see if it helps. I am over thinking this. I know you have other stuff going on that is above my head. I am sure you will get to the bottom of it. Kathi

Audrey, Kathi has made a good suggestion about taking a bit of calcium when you get the muscle twitch and the theory behind that is as she said because we are used to high levels and our bodies have a hard time coping with normal levels.

I have been reading up on post para op problems and i did a long post yesterday but in the end deleted it as it wasn't a positive read. There are a huge number of people who either continue to have symptoms or they return some time after surgery.

The most common problems are bone/joint pain, cognitive problems and difficulty with calcium levels. The rate of recurrence is also possibly higher than thought but the last study was done some years ago so a new long term study is needed. 

My surgeon told me to stick to a high calcium diet to avoid dips in levels and I would take one of my calcium tabs if i got the bad tingles. 

Worth a try Audrey, I hope you have a better day today or tomorrow depending on when you read this 

Nelly

Thank you both very much, Kathi and Nelly. Sorry for the delayed reply here.

That actually makes sense. I have been taking TUMS every now and then since surgery for the lingering acid reflux. I have not paid any attention to see if the muscle symptoms let up at all when I do this. I will definitely pay attention now!

I am also wondering if possibly the adrenal medication is causing my muscle to be more cramped, stiff, and painful now. The twitching seems to be the same. However, the jerking of my limbs has increased too. There is definitely a neurological issue going on here. I have an appointment on Friday with my new neurologist. I am hoping he can shed some light on all of this. I am going to ask him if he will test me for the adrenoleukodystrophy. I am thinking this could be my problem.

Thank you both again for your suggestions!

Audrey

Hi Audrey, just to wish you all the best for your Neuro appointment tomorrow and I hope he has some bright ideas and help for you.

Love and hugs

Brigitte xxxx

Well, thank you, Brigitte. How sweet of you to remember! I will post all about it when I get back. I'm not expecting much to come of this appointment. This is the partner of the neuro I saw back in July. That guy wasn't very helpful at all. He did diagnose me with peripheral neuropathy, but he had no idea why I have been twitching and jerking so badly, and he didn't suggest any tests to determine the cause either. I wasn't too impressed. I'm hoping this other doctor will be a little more interested in helping me.

I am going to ask him about adrenoleukodystrophy and see if he will order the tests to either diagnose this or rule it out.

I hope you're having a good day, and thank you again.

Audrey

Ok, I am finally here to fill you all in on my neurology appointment a few days ago. This will not be nearly as long as my other posts regarding my appointments. I'm sure you're all breathing a sigh of relief. Not much went on at this appointment.

This new neurologist is a partner of the neurologist I saw back in July. He was surprised his partner didn't order any tests to test my nerve and muscle function. I told him his partner did not do much at all. He didn't really seem concerned about my health issues.

The doctor I saw on Friday seemed to be very nice. He performed a few simple, little tests there in the office to see home my nerves reacted. He asked me if the twitches are constant. I told him they aren't constant anymore, but all areas still twitch at some point every day.

He did check my blood pressure. I had told him about my adrenal problem and the low renin, aldosterone, and blood pressure. Normally at my appointments, my BP is around 185/95. I think I have mentioned before on here that I have a terrible case of white coat syndrome. It is really bad! Before this all started with the low aldosterone, my BP at home was usually around 100/60 or a bit higher. So you can see there was a BIG difference between my home BP and my appointment BP. When the low aldosterone problem started, my BP was dropping as low as 76/43. When I went to see my PA while it was this low at home, it was 110/60 in her office. She knew something was terribly wrong, since it is usually around 185/95 in her office. My BP had risen some since I started the Florinef (aldosterone medication), but last week, for some reason, it had dropped again. It was down to 80/59 the morning of this appointment, which is not as bad as before we started treatment, but it was still too low, and I had become EXTREMELY weak again. The neurologist was very concerned. He checked my BP. He said he was only interested in the systolic pressure. I am unsure why. When he checked it, it was 130. I figured he would probably say that that was great, and there was not a problem, but he was a little more intelligent. He told me that it was obvious there was a problem, because for me that was very low, especially being my first appointment with a new doctor. He asked me if I had ever passed out from the low pressure. I told him I haven't yet, but that many times I feel like I just might. He told me to keep an eye on the pressure and continue treatment. That, I could have figured out for myself, but I appreciated the concern.

He told me he wanted to run an EMG (electromyogram) test to check my nerve and muscle function. After he left the room, one of his assistants came in. She told me if I wanted to travel to one of the big hospitals in the city, I could have the test done soon, but if I wanted to have it done there in his office (about 2 miles from my home), I would have to wait until December. I thought she said December 2nd. I really would rather have this done right up the street than have to travel into the city, so I opted for Dec. 2nd. I told her this has been going on for years, and now that the twitches are not constant, if the doctor didn't see any real need to have it done immediately, I would just wait til December. So today, I pulled my appointment card out of my bag to mark the date and time on my calendar, and I see that she marked December 19th. I am not happy about this. I don't like making appointments and adding extra events in December. I always have my family here at our house for a bit Christmas Eve celebration. I admit I sort of go out of my way for this occasion. Last year I was feeling so awful, and my feet were hurting so badly, my daughter took over and had the celebration at her home. I really wanted to do it again here this year if I could, but if I don't soon start feeling a whole lot better, I still might not be able to, but in case I should start to feel better and want to attempt this, I am not going to have time to be running to appointments all month long! I already have an appointment with my nephrologist on the 9th of Dec., and an ENT appointment on the 23rd! Yes, the 23rd! I am seriously considering changing this one! And now I have one on the 19th too?! I guess people just don't realize what it's like trying to get through a big holiday when you are this sick, but you'd think they'd have a little more sense!

So that was my neurology appointment. Nothing big, but maybe one step closer to finding some answers and feeling a little better.

Audrey

Well, now that I see that entire message up there, it is much longer than I thought it would be! Sorry!!

Audrey

I want you to know Audrey that I do read your post's and I am also happy to hear when something's have improved and hoping for you that everything will get better. I do find your journey very interesting, and wish I could offer some advice. I do want you to know I do support you in your fight to get well. I love the long posts don't worry about that. I love to learn about new things, you never know when or who will come across those very issues. The endocrine system can be so complex. Kathi

Hi Audrey,
I really do hope and wish that one day you will find the answers and treatment that you need.  It seems to me that half the battle is in finding a doctor that is prepared to listen and will leave no stone unturned to get to the bottom of things.  The last place I want to be is sat in a GP surgery or hospital waiting room and I know how disheartening it can be.  Good luck with your next appointments.
Thinking of you, Sue x

Audrey, I also read your posts with interest and trust that at some point, everything will come together and you'll get the right treatment to throw your body into recovery mode!

Love and hugs 

Brigitte xxxx

Audrey, you know I always avidly read everything you write. As well as being involved in your journey, and walking beside you every step of the way, your posts are also so informative and educational (and truly inspirational) because of all the research you do and the sheer effort you put into finding answers to get you well again, and it's so helpful for many of us struggling to find the next step, so don't ever apologise for your lengthy posts! keep on truckin' Audrey, you're so close to finding the answers .....

Jasmine x

You are all so sweet! Thank you so much for taking the time to read my posts and for all of your support and encouragement! When I'm having a rotten day, I know I can get on here, and my "family" will be here to pick me up again!

I have a few more things to add to my ongoing quest for a pain-free and healthy life, and I am very excited about it all!

I have been taking Armour thyroid for about 10 years now. Any of you who have thyroid issues are probably aware that Armour does suppress TSH levels. My TSH was down to 0.06 while on the Armour. My T3 and T4 were both mid-range while the TSH was at 0.06. My TSH had been a little higher recently, but my T4 dipped below the normal range, so my nephro increased the dosage.

It was my holistic doctor who started me on thyroid meds years ago, and Armour was his choice of meds. My other doctors all had fits when my TSH dropped to 0.06. They tried to get me to switch to Synthroid many times, but I heard Armour was the superior of the 2 medications since it contained both T4 and T3, so I continued taking it.

About 3 years ago, I finally agreed to try Synthroid. I didn't feel well on it, and my endo would not increase it. I got upset and got tired of my doctors bickering over my thyroid meds, so I stopped taking them altogether! I figured I'd see what my hormones did on their own, and then we could start from scratch. My TSH went from 0.06 to 5.02. My PA told me I needed to get back on the meds. I told her I wanted Armour. She agreed.

For the past few months I have been thinking a lot about the different meds and supplements I've been taking. Now that I had the parathyroid surgery, and so many things are still not right with my body, I am forced to dig deeper looking for answers. I started wondering if possibly there is something in the Armour that my body is not happy with. I wondered if it could possibly be causing my muscles to be cramping, twitching, jerking, and hurting so badly. I started researching again, and I did read that these can be side effects of Armour.

At my last endo appointment a couple of weeks ago, I asked her about making the switch to Synthroid again. She was more than happy to oblige! I think I mentioned this in my post regarding this appointment. She did want me to contact my nephrologist before I did this, since he was the one who increased the dose, and since he is treating the adrenal issues, she wanted to make sure making the switch to Synthroid would not interfere with his plan of treatment.

A few days later, I was taking my blood pressure in by my desk. I keep a lot of old scratch paper in one of my desk drawers. This really comes in handy when I need to write down my BP levels when checking it. Well, this particular day I reached for some scratch paper, and I pulled out an old letter that I had written to my PA a few years ago. It was a rough draft, which was why it was in that drawer of scratch paper. There were several pages stapled together. I flipped them over and started to read the letter. The first thing I saw was the paragraph which stated my neck had started hurting terribly about a month earlier, and I had no idea why. The letter was dated December of 2011. I had been thinking all this time that my neck had been hurting badly for 4 straight years; I guess it's been 3.

Just for the heck of it, I pulled out all of my old lab results. I wanted to see if, by chance, I might find something significant that would explain this sudden awful neck pain. I could not believe what I discovered! In August of 2011, my TSH was 5.02. In November of 2011, 3 months later, my TSH was 0.06. Obviously, that was when I stopped taking all thyroid meds and then started the Armour again!! My neck had started hurting terribly just as I started the Armour again!!!

That's all I needed to make that phone call to my nephro's office to find out if he was ok with me making the change to Synthroid! I made that call yesterday. My nephro's receptionist said she would discuss this with the nephro and get back to me. She called this afternoon. The doctor is all for me making the switch! He said if I want to let my endo take care of writing the new script, that is fine with him, but if I'd like him to write it, just let him know. I can't believe this! He is so nice and so understanding!!

So I put a call in to my endo. I don't know why I did this. They are TERRIBLE about returning calls. The last time I called and left a message, they never did return the call! I should have just let the nephro write the script, but since I had discussed it with the endo, I though it would be nice to let her take care of it. I would LOVE to get started on the Synthroid as soon as possible. I have no idea if this will work or not, but I would be a fool not to try it, and I want to try it as soon as poossible.

As far as the Armour causing cramped, stiff, painful neck, back, upper arms, and thighs, these very words have been typed into EVERY entry EVERY night in my post-surgery diary, since I started the diary the day after my parathyroid surgery on November 14 of last year! Every night I would type that my neck, upper arms, thighs, and fingers of left hand are still VERY cramped, VERY stiff and VERY painful!

I also learned that the thyroid and the kidneys and adrenal glands work hand in hand. When the thyroid is not functioning optimally, it can cause issues with the kidneys and adrenals and vice versa. I am trying not to get too excited in thinking that maybe if my body is happy with its thyroid meds, my kidneys and adrenals might function better, but it sure would be great if that would happen!

So now I wait for my endo's office to call. I really HATE to have to take Armour again, even for 1 more day, but if they don't call back this afternoon, I just might have to. This really angers me that they can't return calls more quickly.

Yesterday, I decreased my Armour dosage from 105 mg to 90 mg again. I noticed my neck, upper arms, and thighs started hurting quite a bit worse when the dose was increased. So I decreased it again to see what would happen. I know it takes quite a while for the body to feel any change when thyroid meds are adjusted, but if there is something in the medication that the body is allergic to, I would think the effects would be felt sooner. Well, this morning, I had quite a bit less pain in my neck, shoulders, back, arms, knees, heels, and feet.

Please keep everything crossed for me. This would truly be the answer to my prayers if it works!! I might still have adrenal problems after I make this change, but if I could get rid of all of this darned pain that I have been dealing with for years nonstop, I would be in heaven!!

And, once again, I have written another book! Seems like I just can't type a short message!

Audrey

Fingers, toes and eyes crossed, Dr Aud!! I would keep ringing the Endo and make a nuisance of yourself! If they don't get back to you, you can always get Dr Nephro to do the script: it's not as though you have no other option! I do remember you mentioning once or twice  tthat your Endo's office is seriously bad about returning calls!! 

Best of luck  

Love and hugs 

Brigitte xxxx 

PS I love new chapters of your books!!

Thanks, Brigitte. Oh, how I love these cheery replies of encouragement!

Yes, I have decided if I don't hear from the endo's office by noon tomorrow, I am going to call my nephro's office and ask him to write that Synthroid script for me. I'm tired of waiting around for those phone calls! If the endo's office would have returned my call today, I could have had my hubby pick up the prescription tonight on his way home from work, and I could have started taking it tomorrow. Now, I'm going to have to wait at least another day and take that darned Armour again!

Hmmm...........maybe I'll have to buy you all some new reading glasses, since my messages are probably wearing out your eyes!! I keep talking about writing an actual book. Maybe I should just put all of my posts together and publish them as my book or as several books!!

Audrey

Oh Audrey our pesky thyroids certainly do cause a whole heap of trouble when they go wrong  

I hope the synthroid does the trick, how much of a disaster would it be if you stopped taking the armour while you got your new prescription sorted ? with thyroxine being long acting it doesn't matter missing a few days but I'm guessing armour is quicker acting and doesn't have a half life so may be it's not wise.

Keep us posted and hope you get it sorted very soon.

Nelly

Yes, Nelly, the entire endocrine system has been quite bothersome for me, as for so many others, and I'm now wondering just how many of these issues have been caused by the thyroid.

I actually thought about just skipping a dose of the Armour tomorrow morning. If the endo's office would call the prescription in tomorrow, I might at least have the Synthroid by the evening. I have some 15 mg Armour tabs here, or I guess I could just take a couple of those so I won't be without anything. Actually, I have a very bad habit of saving EVERYTHING, so I probably still have some Synthroid in my cabinet! It would have to be 3 years old, though, and I don't know how save it would be to take it. I have no idea what the shelf life is of Synthroid. I guess I could google that and see what I can come up with.

Thank you so much for the suggestion!! And I hope you all feel better soon too!!!

Audrey