Latest Lab Results

Ok, here we go.

My latest lab results revealed a calcium level of 9.4, but this was a panel calcium and not a calcium tested with PTH, so I can't be too sure if it is good or not. Normal panel calcium range is 8.3-10.1, but when I had 2 tumors in my neck, I also had a panel calcium level as low as 9.4 once, so until the calcium is checked with the PTH, I can't be too sure if all is well, but I do think it is judging from my symptoms.

B/C ratio was a little high, but it always is, and, as a matter of fact, it is usually quite a bit higher, so I'm good with this.

Potassium went up a bit, which is good because it was low the last 2 previous times it was tested.

Magnesium stayed the same, which is still low/normal, but this was without taking any extra supplements. I've just been taking a multivitamin.

My white cell count rose a bit, which was good because it was low last time.

All red cell test levels rose a bit too, which is also good because they too were VERY low/normal last time. I am wondering it the multivitamin had something to do with these results.

Renin (kidney enzyme) level which has been abnormally low for me for at least 7 months, came up just slightly. I was thrilled. My nephro was not to impressed. I figure as long as it keeps rising, that can't be a bad thing.

Aldosterone (adrenal hormone) stayed at 2. I need to get it up to 4 to be considered normal. It was <1 when first tested, so I'm happy with this too. I'm hoping as the renin rises, so will the aldosterone, since renin triggers aldosterone production.

This was the first time I ever had my reverse T3 tested. I was very anxious to see this result. It was very normal at 13. Normal range is 8-25. One less thing to worry about now! My nephro was very happy with all of my thyroid results, even though my TSH is now in the dirt at <0.06. He is one of the few doctors who is happy when the free T3 and free T4 look good. He isn't too concerned with the TSH. My kind of guy!!

These tests were ordered by my neprho. This time he did not test my free T3 or free T4. I forgot to mention to him at my appointment on Tuesday that we NEED those 2 tests to diagnose thyroid issues. He tested T4 and T3 uptake. The T4 was low/normal, and the T3 uptake was mid-range. He was happy with both. I would have been happier had I seen the free T3 and free T4.

My urine specific gravity was a little low. The nephro tells me that is from my edema. I was hoping this would be a little higher this time, since my edema is looking so much better.

Everything else looked good, except for my RDW (red cell distribution width). This was elevated. This reveals the difference in size of red blood cells. The MCV (mean corpuscular volume) was tested also. It was normal. From what I have found regarding these results, it points toward some type of anemia. I have read different things, so I'm not sure exactly what to believe. One site says that elevated RDW with low MCV indicates either iron or B12 deficiencies. One site says only B12 deficiency. If both are elevated, it points more toward liver disease. I read that when the RDW is elevated, and the MCV is normal, like mine is, it indicates a possible anemia brewing! Since twitching and tingling are both symptoms of B12 deficiency (and I have many symptoms), I thought maybe I need more vitamin B12. The nephro didn't think so. I will discuss this further when I start a thread regarding my Tuesday appointment with him. I actually wondered if this might be the cause for my tingling, but, then again, what about my cats? Do they both have B12 deficiencies?!

So there you have it. Some levels are improving. Others are going whacky. All in all, I think it was a good report. Onward I go!!

Audrey

Good some things are heading the right way Audrey, I'm not sure we will ever get everything back to "normal" I believe once the system is broken its very difficult if not impossible to get all levels back on an even keel. 

Nelly

I agree, Nelly. It certainly seems that way. We keep trying, but it just might not be possible.

Audrey

So glad a lot of things are creeping up slowly and others are improving for you, Audrey.

A good idea of yours (and his) to test you for heavy metals. That might bring up something - hopefully nothing too major, though.

All in all, an upward trend, I would say - so pleased!   Onward!

Love from Tigerlily xxxx

Well, I started typing a nice post here about half an hour ago, my computer went nuts, and I had to close without saving the post.      I rebooted.   I think I'm good now.  I will try again now.

First of all, once again I apologize for staying away for so long.   I was going through one of those rough patches when I felt I needed to hibernate from the rest of the world.    It is so sad when we go through that, because that is when we need the rest of the world most to help us through it.
What a shame.

I would like to start by saying we are STILL itching like crazy here!   It has now been 6 weeks since it started.   I can't speak for my cats, but I am dealing with nonstop, very intense, needles and pins all over my body, and I do mean ALL OVER my body!   Not an inch of flesh is being spared from this.  These are not the normal needles and pins you feel when a part of your body 'falls asleep.'   These are very intense, stabbing, pings.  These really hurt!   It also still feels like there are many tiny fibers dancing all over my face, which causes me to have to rub my face every 2 or 3 minutes to 'scratch.'     I can't speak for the cats, so I am not sure exactly what they are feeling, but because of the way they are constantly scratching, shaking their heads, chewing on themselves, including their feet, and shaking their feet when they walk, I'm thinking they must be feeling exactly what I am.    Sometimes I am honestly afraid we are just going to sit here and die from it all, because I will never figure out what is going on here!  It is very depressing and very scary!

I still have not determined whether or not it is my laptop battery causing the problem.    I can't seem to stay away from it long enough to find out.    At first it seemed I felt better when I was away from it for a few hours, but then it started to seem it didn't make any difference at all, so I am back on it pretty often now.

Five days ago, I asked my husband to roll up my beautiful area rug from here in the living room.  We stored it in another room rolled up.    I noticed several weeks ago that I seemed to itch less and have less of the needles and pins when I was not in the living room.   That is why I started thinking about the laptop battery.     When that didn't seem to be the answer, I started thinking of what else in the living room might be causing the problem.      Back in June, we bought a new area rug and some new furniture for the living room.   The first time I vacuumed that rug, my Dyson canister became about 2/3 full of little fibers.   This is only a 6'x8' rug!     My son was here one day right after I vacuumed.   When he saw all of the fibers in the vacuum, he thought it was all cat fur.   I showed him that it was not fur but fibers from the rug.  We joked that my new Dyson was eating my rug!     I thought it was odd that so many fibers were coming off of the rug, but it was a very expensive rug, so I thought it must be normal.     This continued to happen every time I vacuumed.    I started wondering if possibly it was the fibers from the rug causing all of this itching and the needles and pins.     I was not sure why it would have taken 7 months for the problem to start.   I thought maybe it took that long for enough little fibers to get all over the cats, the furniture, and in the air?    I don't really know.      I continue to vacuum the house, including furniture, curtains, and drapes every couple of days, hoping to rid the house of whatever it is that is causing us such agony, and I pray a LOT.    I wonder if it will EVER end!    I do remember when we had that fiberglass problem in here 9 years ago, it took months to get it all out of the house.   At least then, I knew what I was dealing with.   This time I have no idea!

I turned in the two 24-hour urine collections this past Wednesday.   One was for heavy metals.  One was for protein/creatinine testing.     I have the results from the protein/creatinine test.   Everything looks normal, but my 24-hour urine creatinine clearance is elevated.   At first I freaked out, thinking now I had kidney damage to deal with.  After further research, I learned that it was when this level is low that you need to worry.   I also learned that diuretics cause this to be elevated, and I take 2 different diuretics, so I guess I'm ok.  I haven't discussed these findings yet with my nephro.       The results for the heavy metals are not in yet.

I'm still wondering if anemia is one of my major issues here.   It looks like it is not a B12 deficiency.   My B12 has increased quite a bit since I started taking the multivitamin.  It is now in the mid/upper area of the normal range.   The 2 tests I asked my nephro to order for me, the methylmalonic acid and homocysteine, both came back normal.  These tests would have revealed a B12 absorption issue.  Since they were normal, it looks like B12 is not the problem.

Since my RDW was elevated the last 2 times it was tested, it does still appear that anemia of some sort is an issue.    My MCV was even lower this time.  It is now 81.7.  Normal is 81-99.     As mentioned previously, when the RDW is elevated, and the MCV is low, this indicates anemia.   So now I'm leaning toward iron as being my problem.    I have MANY symptoms, including paresthesia (needles and pins), twitching, peripheral neuropathy, headaches, dizziness, shortness of breath, EXTREME fatigue, edema, vision problems, etc.    So I picked up some iron pills a couple of days ago.   I am only taking the recommended daily allowance.   I am thinking I probably need more.    I am going to call my nephro and see if we can't check my iron levels.      I am hoping this is what is causing my needles and pins.  I am hoping my cats are not feeling these, and that they are just extremely itchy.  Although, the way they shake their feet when they walk, it's almost like something is stabbing their feet.   Then again, it just might be those little rug fibers causing that.   Who knows?!    I hardly think they also have an iron deficiency!  

I can't remember if I posted anything about this before or not.  If I am repeating, I apologize.   My nephro suggested I do something that I really don't think is going to work.   He suggested I increase my diuretics and stop taking the potassium pills.     I still have not done this.  I have good reason for not doing so.    I have always had trouble keeping my potassium up high enough, even when I wasn't taking diuretics.      I now take 2 different diuretics.  I take 1 Edecrin tablet a day.   Edecrin is a potassium depleting diuretic.   I also take 1 amiloride tablet a day.   Amiloride is potassium sparing.    Even though my edema is looking MUCH better,  (my feet actually look normal now; I just have some water in my ankles and lower legs), he wants me to increase the amiloride by 1 tablet daily to get rid of the rest of the water.     That should not affect my potassium, since it is potassium sparing, but if I stop taking the potassium altogether, I'm afraid it's still  going to drop too low.    My potassium is at 4.0 right now.  Normal is 3.5-5.1.    When I was taking 1 potassium tablet a day, my level was at 3.4.    I don't think this is going to work.

I didn't think to remind the nephro that I was taking 3 diretic tablets a day for months, and the edema was not budging.   It was not until I started the multivitamin that the water started to practically fall off.   That was what made me think my body must be deficient in something which was causing the edema!    I am wondering if it was the iron.    I alternate between 2 different vitamins.  One contains 8 mg of iron.  The other contains none.   So I will add the extra iron accordingly.  

I am sure hoping SOMETHING starts to improve soon!!

Thank you for taking the time to read yet another one of my books here!

Audrey

Something to add to the needles and pins issue. We went shopping for a new computer on Sunday. I had been having a great morning as far as the needles and pins; not too many at all! As soon as we got inside of the store, walked back to the computers, and started to look at them, the needles and pins all over my body started full force!! I mean, they were horrible!!! I didn't think much of it, other than dealing with being in agony again! After we left the store, we went to a restaurant to eat. I mentioned to my husband that the needles and pins got really bad again while we were in the store looking at computers. Then it dawned on me. I had been suspecting my laptop was causing this problem for weeks. Could it have been all of those computers running in the store that caused the needles and pins to get so bad at that time?! Was it just a coincidence? I'm not so sure. Hmmmm................... I will be going back to the store again, as we didn't purchase a computer. I was just window shopping. If it happens again, I think we can rule out coincidence!

Also, the hospital's patient portal now has the heavy metals listed that they are testing me for. The results are not in yet though. I was really hoping they would be testing me for lithium. I have found lithium listed as a heavy metal on some internet sites, and found it to be listed as NOT being a heavy metal on others. So I wasn't sure if it would be included in my heavy metal testing. It is not. Since computer batteries are not made with lithium, and I seem to have a tingling issue around computers, I really wanted to know if lithium was causing the problem. They are testing me for thallium, cobalt, mercury, cadmium, lead, and arsenic. I will be seeing my PA on Monday. I am going to ask her if I can be tested for lithium toxicity.

I also am going to ask my PA if she will order a spinal MRI. I contacted a neurosurgeon yesterday. They want me to get a new MRI and then call back and make an appointment. This surgeon is supposed to be the best. I have learned that many people think he is an arrogant jerk, but he is an excellent surgeon. Not sure if I feel like dealing with another doctor of this type, as I have dealt with several over the years, but if he is as good as they say, I guess I'll deal with him. I must say, though, that at this stage of my life, there is no guarantee I will just sit back and be disrespected and mistreated! Look out doc!!!

Audrey

Hi Audrey - so sorry to hear about all this and the pins and needles in the computer shop. Mr T-L says that lithium batteries are the main ones used in laptops because they are light in weight and have a high level of power. So I wonder if it could be the battery in your laptop?

Obviously that would not make the kitties itch, but it sounded to me as though they might be reacting to the rug mentioned if they were picking their feet up when walking across it.

The general "flavour" of what you have written in these two posts seems to point to a type of neuro disturbance. I do hope the surgeon does not turn out to be another one of "those". But you have had a lot of practice with them, so I'm sure you will be up to dealing with him if he is!

I'll do some research on lithium/laptops/health problems and see what I come up with.

Love from Tigerlily xxxx

Yes, Tigerlily, the newer laptops now all use lithium batteries, that is why I was wondering if it could be the lithium causing my problems! My body is VERY sensitive. It would not surprise me if I am having some type of reaction to the lithium. I have MANY symptoms of lithium toxicity! Believe me, I have been researching my butt off!!

I agree that the cats are probably having a problem from something in the air, and possibly from something from that rug, but since they lie up against my thighs when I'm on the laptop, they are also VERY close to the laptop, and if they are feeling the needles and pins like I am, that would certainly make them feel the need to shake their feet when they're trying to walk. These things REALLY hurt! I am not ruling out anything at this point. Since the itching on my face feels exactly like the itching did when we had the fiberglass issue 9 years ago, I would tend to think that is being caused from something in the air, such as tiny fibers. And that rug REALLY did 'shed'!!!

I actually called a store nearby which sells computers and asked if they have ever heard of anyone having a reaction to the lithium batteries in computers. The guy said he had never heard of it, but, then again, nobody ever heard of anybody having such a severe reaction to wood stain, like I had 30 some years ago either!!

Thanks for your help and suggestions. I do appreciate everything. As I keep telling my cats, I WILL figure this out!!!!

I do have some pretty severe degeneration of my spine, which, according to my MRI of 3 years ago, includes bulging discs and spurring. At first, when it was just my hands tingling, I thought that might be from the spinal issues, since it is my cervical spine that is the issue. However, when my entire body started tingling, and my cats started having problems, I started thinking there was mor to this than just my spinal problems. My spine has gotten to the point where I can no longer deal with the pain, which is why I am contacting the neurosurgeon.

If my PA won't test me for lithium toxicity, I am going to contact an allergist. I could just ask my little, nutty professor, the nephro, regarding this. He was the one who suggested testing me for heavy metals. I'm sure he would agree to test me for lithium. I will not stop until this is resolved!!

Audrey

Hi Audrey

It sounds like a good idea to check out the bulging spinal discs, as you are obviously doing. I had an operation some years ago to clean out a bulging disc. It went well and the relief was amazing. As you say, if your cervical spine is affected, then that could be causing the pins and needles by impinging on the nerves.

I've just received the updated version of Stop The Thyroid Madness II by Janie A Bowthorpe, as I'm still looking at my thyroid problems. I can really recommend this new edition. It's not only about thyroid problems but other factors that can affect the thyroid. One of these is a genetic variant called MTHFR SNP. People who have this gene variant have great difficulty in removing toxins from their body and two of the symptoms are skin and neurological disorders. Apparently almost 50% of US citizens have this genetic variant - so I'm guessing that one of those could be you! It might be worth you getting a copy of the book just to check this out (p.240 and p.259).

It says: Methylation, Genetics and SNP Information available from:

https://www.facebook.com/MTHFRAlly

and:  www.MTHFR.net    Benjamin Lynch from Seattle was the contributing author for this section.

Try asking the nutty nephron about MTHFR. It's a bit of a new phenomenon, so if he's not aware of it I'm sure he'll find out for you - he sounds like that sort of guy!

Carry on keeping on, Audrey, and keep us posted on developments.

Love from Tigerlily xxxx

Thank you so much for the great post, Tigerlily. As I just stated in another thread, it is midnight here now, and I am TOTALLY wiped out. I will be back on Sunday, I hope, and I will able to catch up and post more at that time!

Have a great weekend everybody!!

Love,
Audrey

I am finally here with a little update for you all.    

The heavy metal test results are in.  I first saw them on the hospital's patient portal.   There were results listed for thallium and cobalt.   I was very disappointed they did not test for lithium.   I have seen lithium listed as a heavy metal on some sites and as a soft metal on other sites.  I was praying they were testing me for it this time, since it was the lithium I was very concerned about.    As you all know, I had been wondering if it was the lithium in my computer battery causing all of my total-body needles and pins that I've been dealing with to some degree for about a year now.

My thallium level was 0.4.  Normal is less than <0.5.   So my level was normal, but just barely.   By the way, thallium is also used in electronic devices.  

My cobalt level was 0.3.  Normal is <2.9, so this was great!    

The results for mercury, cadmium, lead, and arsenic were not listed!  Instead, it was stated to 'SEE NOTE.'      I was not sure why this was, but it was frightening!  The note was not included with the results on the patient portal, so I was not able to view it.     When I delivered the 24-hour urine collections 11 days ago, I had asked that these results be mailed to my home, but after seeing 'SEE NOTE,' there was no way I was going to sit here and wait for them to arrive in the mail!    I headed over to the hospital lab to get a copy of the results.   I figured the 'note' would be found on the hospital's copy of the results.

I was VERY relieved to see that note!!    It stated that the the levels of mercury, cadmium, led, and arsenic were so low, they were undetectable with this method of testing.   Although, I guess it would have been nice if the results would have shown something elevated, so maybe we would have finally had some idea what was causing all of this crap.    

I made an appointment with my PA for tomorrow.   I want to ask her if she would order an MRI of my spine, and I want to ask her to test me for lithium.    I would like to either prove that lithium is the problem or rule it out.    The weather will determine whether or not I go to this appointment.   It has been snowing nonstop all day.  Looks like we received about 5 or 6 inches of new snow.   We still had about 7 or 8 inches on the ground from previous storms.    This doctor is about 30 miles north of us, where the snow is even heavier.   I might just be staying home tomorrow.    

As mentioned earlier, I am wondering if all of this tingling could be caused from the bulging discs and spurring in my spine.     That would also make perfect sense.     Hopefully, soon I will at least have the needles and pins resolved, even if I still have to work on the itching!

Yes, we are STILL itching!!!   Still no rashes.  Still can't see anything.  Just itching!!    I sure hope it was from the rug fibers, and it is just taking time to get it out of the house.    I do know from the fiberglass incident 9 years ago that getting troublesome, tiny fibers out of a house can take months.    So I keep vacuuming often and keep praying!!

I think that's all I have new to share tonight.     I do hope you are doing as well as possible!

Love,
Audrey

Tigerlily, I forgot to thank you for sharing your experience with the spinal surgery. I have to admit spinal surgery scares me greatly! I have had many surgeries. None have frightened me, but spinal surgery does. It is great to know you had such a positive experience, and I'm VERY glad your surgery gave you so much relief!

I would also like to mention that yesterday I had no needles and pins AT ALL all day, until I leaned forward while sitting on the couch to look at the snow out our front window. As soon as I did, I could feel the vertebrae shift in my spine, and immediately the needles and pins started in my hands and arms. There is a good possibility that this is what is causing my needles and pins.

I am going to keep my appointment with my PA today. My hubby said he thinks the roads will be ok to travel. I REALLY want to get that order for the spinal MRI. I need to get this taken care of.

I can't remember if I mentioned that I do have a surgeon in mind for the spinal surgery if that should be necessary. He is supposed to be a VERY excellent neurosurgeon. I have read many reviews saying he is an arrogant jerk, but if he's good at what he does I guess I can deal with him. A lot of people think Dr. Norman is an arrogant jerk too, but I never experienced that with him. Maybe I'll get lucky with this one too. Hopefully!

Audrey

Great appointment with my PA yesterday! She agreed to an MRI for my cervical spine. She agreed to test me for lithium. She agreed to test my iron and my potassium.

She was happy the little, nutty nephro has my adrenal issues under control. She was not happy that my cats and I are still itching for some unknown reason.

She said she is doubtful that it is lithium causing the itching here at our house. She said she is also doubtful that it was the area rug causing the problem. I wish she could have suggested what it COULD be that is causing the problem!!

I do love this woman! She is so wonderful! I think it's cute now how our visits go. She was doubtful that I had a thyroid problem when I said I did, but I did. She did not think I had hyperparathyroidism when I said I did, but I did. She told me there was no reason that I would have adrenal issues when I said I did, but I did. Now when I go see her, she does not doubt ANYTHING I suggest!! She is very open to ordering the tests I request, just like the nutty nephro. I think my doctors are starting to realize that I usually know what I'm talking about. I love and respect this woman because even though she did not believe I had thyroid, parathyroid, or adrenal issues, she continued to try to help me find the truth, and she still continues to try to help me now.

Blood pressure was whacky again. It was 140/106! Here at home, now that the adrenal problem has been taken care of, my pressure is usually around 100-110/60-70. My PA didn't even question this. She knows my pressure is usually high at my appointments. Before the adrenal issue surfaced, my pressure would be around 185/95. She knows I monitor my pressure at home, and she knows the nephro is watching it closely, so I guess she didn't feel the need to question it.

I spent this morning making phone calls and searching the internet for a place where I can get an open MRI. I am VERY claustrophobic, and I can't deal with MRIs! I've had several, and I seem to get worse with each one. The last one I had, I felt I was suffocating, I started to shake and I couldn't breathe! This time I wanted something different. I finally found a place that's not even 7 miles from my home! I am thrilled!! I am waiting for my PA's office to call with the authorization number, and then I will call and make the appointment. I can't go until next week, because I have more labwork and a vet appointment to take care of this week, among other things to take care of.

Another good appointment!

Audrey

Oh, Audrey, that is all such good news!

I am so pleased that your relationship with your PA is still good despite all that you (both!) have been through with your own health problems. I am working up to making a formal complaint about the endo that so unpleasantly treated me for the last 2 years, insisting that I had secondary HPT, and not primary (from 3 hyperplastic enlarged glands, as it turned out - just a heads-up for any newbies). So when I say I am pleased about your relationship with your PA, you can tell that I mean it.

I know what you mean about being claustrophobic in the MRI chamber - hope your find of an open one goes well.

Keep us posted - Love from Tigerlily x

Thanks, Tigerlily. The MRI appointment is set for next Monday. The woman at this new facility told me the MRI chamber will not go around my body! I can't imagine this, but am anxious to experience. Looking forward to no more needles and pins, twitching, and back, neck, and shoulder pain, or at least LESS of all of those symptoms.

I don't blame you for making the formal complaint with your endo. Actually, I should have done that with my internist. She was the one who laughed in my face and refused to look at any of the material I took to my appointments. She AND my endo both insisted I did NOT have hyperparathyoidism, and so did my PA, but the difference was that my PA continued to try to help me determine whether or not I did or didn't have the disease, even though she doubted it. My internist was a jerk, and my endo had no clue how to diagnose HPT! I can forgive the endo for not knowing, but I cannot forgive the internist for laughing at me and being so insistent that I was wrong!! After having 2 tumors removed, the first thing I wanted to do was make an appointment with her to give her a piece of my mind. I kept talking myself out of doing that. It is not too late. I still might do it! She works with my PA. I have told my PA how I feel about the internist, and I am sure she relayed that to the internist. As many times as I have seen my PA since my surgery, I have not run into that @$$hole internist. Sorry for the name calling, but I guess the hurt and anger still runs deep! Yesterday while at my appointment, I heard someone paging the internist. I was waiting for her to walk by. She didn't. I honestly don't know how I would react if I bumped into her. Maybe I would pretend I didn't see her and bump into her rather roughly, knocking her down. I am happy you are going forward with your complaint. Doctors need to change their attitudes and their way of thinking toward their patients!

Audrey

Thanks so much for your vote of confidence, Audrey!

I have hesitated rather a long time to do anything about this endo, and now I find if I don't make a complaint very soon, the deadline for doing so will expire.

I think the NHS complaints procedure is such that we will end up in a room together (with others) at some point. Not sure how I will play it (or if I'll be able to - no, I will be able to ...) but I just need to be sure that other patients are not being treated in the same high-handed way and remaining mis-diagnosed for so long, as I was.

Let us know how the scan goes. You bending forward as you described and suddenly feeling the pins and needles certainly sounds like a trapped nerve or several. I do hope you can get some answers very soon.

Love from Tigerlily xx

Well, I think that is great that you are going forth with your formal complaint, Tigerlily! If more people did that, maybe the doctors would wise up and treat their patients with a bit more respect.

Yes, that would be rough sitting in the same room with that doctor. I have not been brave enough yet to face that internist for that very same reason. I do hope you can be braver than me and go through with it! You are right, it will help others from suffering the way most of us had to. You go girl!!

And, yes, I do agree that if bending a certain way, causes pain in my spine and causes the needles and pins immediately, it must be a spinal issue. I am very anxious to get the results of the MRI and see what the surgeon has to say.

Love,
Audrey

Results are in from my latest labwork. Looks like I was right about a couple of things, but I was WAY off on 1 thing!

I was expecting my iron to be low, since my RDW was elevated and MCV low with my previous labwork. Considering I've been taking iron supplements now for a couple of weeks, I would think my iron levels would hve been higher than they were, but since I still have so many symptoms of anemia, I wasn't sure what to expect. Well, my iron was 88. Normal is 40-150. So I guess that's not too bad. My ferritin, however, was 11. Normal is 11-307. I'm thinking this is not good!

My PA also tested my transferrin level, transferrin and saturation, and total iron binding capacity. Transferrin was 249. Normal is 187-346. My transferrin and saturation was 25%. Normal is 20-55. I'm thinking this should be a bit higher. My total iron binding capacity was 349. Normal is 235-406. From what I've been reading on the internet, with iron-deficiency anemia, the iron binding capacity should be elevated. I need to do much more research on this subject. From what I've read so far, I think I need more iron in my body. That ferritin of 11 just does not look good to me, and since I still have so many symptoms, I think I need more iron.

My sodium is 135. Normal is 135-146. The low renin (kidney enzyme) and low aldosterone (adrenal hormone) cause low sodium and high potassium. I have been craving salt again lately, even though my blood pressure has been normal. My blood pressure was VERY low before I started the Florinef for the low aldosterone. So I think I'm taking the correct amount of Florinef. I wish I could get my sodium level up a little.

I really thought my potassium was going to be low, since my nephro ordered me to stop taking all potassium supplements. I have had trouble in the past keeping my potassium level up, even with the adrenal problem. I really didn't know how this was going to work, stopping all supplements. Turns out, it did drop just a tad. It was 4.0 while I was taking the supplements. It is 3.9 now. Normal is 3.5-5.1. So it is acceptable at this time. I was surprised. I guess the adrenal issue is now keeping it as high as it is.

The thing that REALLY surprised me was the lithium level!! If you recall, I had been wondering if the lithium in my computer battery might have been causing the tingling and itching I've been feeling and the itching my cats have been feeling for 2 months now. The way the tingling got so bad when I was in the store a couple of weeks ago looking at computers, I had myself convinced I must be dealing with lithium toxicity. It looks like that is NOT the case. My lithium level was actually flagged as being LOW!! It was 0.02. Normal is 0.50-1.50. Of course, I hit the internet immediately to check this out. It looks like loop diuretics can cause low lithium. I have been taking Edecrin since last July. Edecrin is a loop diuretic. I did not realize that. So I'm thinking that might be why my lithium is low. I was VERY surprised by the low lithium! It looks like lithium toxicity is not the cause of my itching and needles and pins.

I am now thinking the needles and pins must be from my spinal issues. I WILL figure this out!! I am very anxious to see the results of that MRI on Monday!

Audrey

Hi Audrey

From what I have learned during my time with CKD, you need a good ferritin level in order to maintain a good Hb.

From a renal perspective, iron supplements are inadequate and ineffective if you have a renal problem (which I presume you have with your oedema and anaemia).

My Hb level is managed by regular ESA injections (Erethropoetin Stimulating Agent) coupled with the occasional iron infusion to boost the Ferritin. Erethropoetin + Ferritin = production of Hb.

Edwin

Thanks for the info, Edwin.    I guess I'm still hoping there is something very simple causing the edema, which is causing the kidney problems and not vice versa.      Since my nephro feels it is the edema causing the kidneys to be unable to produce sufficient amounts of renin, in turn causing my aldosterone from the adrenal glands to be low, I'm still praying we can figure out what is causing the edema, in hopes of fixing all of this, but as time goes on, and the more research I do, I am starting to doubt this theory.    

I did read that low iron can cause a problem with enzyme production.   So I was hoping if we could raise my iron levels, that would increase the renin production, which would increase the aldosterone production, which might at least take care of that problem.  

I do keep reading that kidney disease causes edema and anemia, and this really scares me.    I am wondering if my 'simple' theory is about to be tossed out the window.  

I also read that low iron keeps the thyroid from functioning properly.    I am REALLY struggling with my weight right now!   I have gained 7 pounds in the past month!!!   I don't think it's all water.   I am really feeling defeated here.    Sometimes I feel like it's silly to even bother researching or to continue trying to figure it all out.   It feels like I keep running into one brick wall after another.    Just when I think I have it figured out, I don't.

I guess I keep thinking this can't possibly be kidney disease, because we have a HUGE family, and there has never been any kidney disease at all in our history.    That is, until last week!    My 74-year-old uncle was recuperating from a total knee replacement, when they discovered his kidneys were failing!    I am not sure if his numbers had looked badly before this or not, but I think it just happened very suddenly, if that's possible.    So now, I can't say there is no kidney disease in the family.   Now I am getting even more worried about my own issues here.

Back in July my hemoglobin was at 12.3.  Normal is 12-16.     In August my hematocrit was 37.1.  Normal is 35-46.    I starting suspecting at that time that I had an iron problem.   My doctors didn't take notice of this because the levels were still within the normal range.   Even when I told my PA at my last appointment that I was pretty sure I was iron deficient, because of the high RDW and low MCV, she said she doubted it because my hemoglobin was within the normal range.   I reminded her that my body is very sensitive, and when something is even slightly lower than my body likes it, I start to have symptoms, and I need help.  I would think by now my doctors would all be aware of this.   I proved that with the hypothyroidism and the hyperparathyroidism.     I really doubt if my doctors will want to do anything with my iron until my levels drop lower.    

My hemoglobin and hematocrit both started to rise in October and have continued to rise.   I am not sure why.  I did start taking a multivitamin a couple of months ago, but these levels started to rise before that.   My latest labs (after taking iron for 2 weeks) revealed a hemoglobin of 13.4.    My hematocrit was 39.5.   I agree with you, and I just discussed this with my sister yesterday, I do think I need something more than just the iron supplements.     I will be asking my doctors about the ESA injections and about the iron infusions.   Thank you again for mentioning this!

All I know is that I am EXTREMELY exhausted all the time, I am still itching,  I am still twitching,  and I still have needles and pins all over my body.    I am very depressed and wondering if any of this will ever improve.  I have stayed optimistic until now, but I am slowly sinking.     I guess I'll get that MRI of my spine on Monday and see if either treatment or surgery can help with any of these symptoms.    Then I'll deal with whatever is left.    

I can tell you this, as anxious as I am to be done with this very cold weather we've been dealing with here, I am NOT looking forward to spending another summer looking like a little blow fish, and now it doesn't seem to be just water I'll be dealing with.    I was so hoping my little, nutty nephro would have been able to figure this all out by now, so I could spend an enjoyable summer again.    Feeling very low right now.  

Audrey

Oh, Audrey - so sorry to hear you're feeling so low at the moment.

Just try and get through the weekend until the MRI on Monday, because that should bring you some answers even if only to rule things out. Then you can go forward again equipped with a little more knowledge than you have at the moment.

You have done so much work on this recently. Give yourself the weekend off and do something you really enjoy doing. It's so easy to give up on all the enjoyable things when you are trying to fathom out what it happening to you.

I should be taking my own advice here, though. I have spent the last week looking at MEN1, Neurofibromatosis, and Hyperparathyroidism Jaw Tumour Syndrome, as I'm sure my 3 hyperplastic pHPT glands are down to one of these! Happy days.

Rest up for a while, Audrey, and take good care of yourself. Let us know what the MRI reveals next week.

Love and lots of cyber-hugs from Tigerlily xxxx

Audrey, I don't want to make you feel more despondent but , itching, twitching and pins and needles are all kidney disease symptoms.

Nelly

Hi Audrey,

It's so hard to stay positive in the face of so many long-standing unexplained symptoms. I also find it hardest when you have yet another possible answer eliminated by unexpected blood results and you have to somehow find the energy to pick yourself up and start from scratch. 

I don't think other people understand why a 'normal range' result can be so devastating. They say, 'Surely that's a good thing?' When actually from your point of view it's snatched away the last glimmer of hope you had. I was just thinking this morning how one of the most damaging aspects of pHPT is that it makes you feel hopeless. 

But you've proved to be one strong persistent lady. You worked out the hypothyroidism and the pHPT and if anyone can solve your current symptoms, I believe it's you. If it is all pointing towards the kidneys, you at least have your nutty nephro already in place, which is more than you had in the past with the idiot endos. I hope and pray that this low passes quickly and you start getting some answers.

Thinking of you,
Love
Dee
xxxxx

Thanks Tigerlily, Nelly, and Dee. I appreciate all suggestions and info, even if it is negative. I need to know.
And I REALLY appreciate the hugs.

Tigerlily, our granddaughters will be coming to visit us tomorrow. That will help to cheer me up. It always does. Thank you for the encouragement. Sometimes it's so hard to march on. I know everyone here understands this. We've all experienced it at one time or another. There is just so many negative things going on in my life right now, I can't seem to keep my head above water. Don't know what I would do without all of you to toss me a rope when I'm going down. I am so very sorry you too are going through so much right now, worrying about all the things that could be wrong with you as well. Geez, when did life get so complicated? When did I go from being an aerobics dance instructor and a runner, to being sick and not feeling like doing anything? This really stinks. I do hope you can get some answers very soon too!

Nelly, I guess I would be more willing to accept these symptoms as kidney disease, if my cats were not still itching like crazy too. That makes me think there is something else going on here causing the itching. I do know that spinal issues can twitching, as can several endocrine issues and various deficiencies, so I keep hoping it's not all from my kidneys. If it is, I guess I will deal with it. If my cats would stop itching, and I would continue, I would be more willing to accept that my kidneys were causing the problem. Thank you for sharing that info with me though. I do need to know.

Thanks for the vote of confidence, Dee. Yes I guess I have struggled and proven my doctors wrong more than once. I forgot to add the adrenal problem for which I also had to fight for a diagnosis and treatment. I wish just once my doctors would diagnosis something for me themselves and help me without me having to beg them and do all the work myself. I feel like if I don't take care of things, I will never be well again, because nobody else will help me. That is a scary feeling. You are right, though, in thinking if I do have kidney issues, I already have a great doctor ready to take care of me. I am very thankful for that and for him! I do feel he is willing and able to help me.

I know everybody here is struggling. I don't mean to be whining. I'm just weak at the moment. I'll be ok.

Audrey

Hi Audrey

Do you have your Creatinine and/or eGFR levels?
These are the primary indicators for a decline in renal function

Yes, you need a good iron level for correct thyroid T4 to T3 conversion.

Edwin