Disappointed in nutty nephro : (

Well, as the topic suggests there, I am a little disappointed in my nephro. I talked to his receptionist last week and asked about either increasing my Synthroid dosage or adding T3 to my regimen. I also mentioned that I felt my magnesium needed to be raised since it was low/normal, and that I thought my potassium level should be higher since it had fallen below the normal range.

I told the receptionist that since I made the switch to Synthroid, my TSH has increased from 0.06 to 0.47, which is what we expected since Armour (which I was on previously) suppresses TSH. After switching to Synthroid, my FT4 stayed exactly the same at 0.91, which surprised me since Synthroid consists only of T4. I thought maybe that level would increase a little. The problem I'm having since I switched is that my FT3 has fallen from 3.6 to 2.7. Normal is 2.3 to 4.2. If FT3 is supposed to be in the top 25% of the normal range, mine is clearly not optimal. Two weeks after I switched to Synthroid, I caught a cold, and 2 days later I came down with another UTI. I'm not saying this was the cause, but if my immune system wasn't up to par from the lower FT3 level, could that not have had something to do with that? Also, for 3 straight years (while on a lower dose of Armour), my ear canals itched very intensely nonstop, and they peeled badly. When the Armour was increased back in June, this itching and peeling stopped completely! I have heard that this is a possible symptom of hypothyroidism. A few days after I switched to Synthroid, the itching and peeling started again.

I also told the receptionist that because of all of my muscle cramps, I was thinking maybe I needed to raise my magnesium. It was found to be 1.8 this time. Normal is 1.5 to 2.9. I have been taking 425 mg of magnesium daily to keep it at 1.8.

I also told him that since my potassium had dropped to 3.4 (normal being 3.5 to 5.1), we definitely need to get that level up some. I told him I have been taking some old potassium supplements I have here at the house. These tablets are 20 mEq tablets. I have been taking 2 daily.

So the receptionist called me back and told me that the nephro does not want to increase my FT3 or increase the Synthroid. He said he wants me to start taking 400 mg of magnesium to increase my magnesium (I've been taking 425). And he said he wants me to start taking 10 mEg tablets twice a day for the low potassium. I had been taking 20 mEq tablets twice a day before I called for help to raise this level. Does any of this make any sense to anybody?

The receptionist wanted me to call back on Wednesday (tomorrow) to let them know how I'm doing with the new regimen. Well, I am still taking the 20 mEq of potassium. I never did switch and start taking the 10 mEq tablets the nephro prescribed. I am taking the 400 mg magnesium capsules he prescribed, but this makes no sense, since my magnesium level was low/normal on the 425 mg I was taking before this. And this morning I decided to switch back to the Armour. I have a LOT to discuss with the receptionist when I call tomorrow!!

I might add that the cramping in my neck, shoulders, back, and arms is still increasing. There has been no relief or improvement at all! I am still in a LOT of pain. I am now wondering if this might all be from disc issues in my spine. I do have generative disc disease in my upper and lower spine. I have had quite a bit of discomfort in both areas in the past. The lower spine seems to have quieted down for several years, but the upper has seemed to continue to deteriorate and cause problems. I have had spells over the years where the upper spine would feel VERY tight and swollen. This discomfort would last for a few weeks and then let up. I also would have times when I would be doing something with my arms or lean over on my arms, and something would click in my upper spine, causing a terrible, sharp, pinching pain. I wouldn't be able to move my arms or move my position for maybe 5 minutes, and then it would be ok again. I'm really thinking this could be the cause of all of this severe muscle cramping I've been feeling for a few years straight now. I am going to ask the nephro about ordering an MRI. I just pray if this is the cause, there is a way to fix it, because I can't imagine spending the rest of my life with this pain! OUCH!

Audrey

Oh, Audrey, sorry to hear of all this.

Short answer: I think you were doing fine on the Armour and am glad to hear you have changed back to it. I expect it will take time to get into balance back on the Armour again. My thoughts when you changed to the Synthroid (that didn't actually agree with me) were "if it ain't broke ...." etc. If there were any way that I could get onto Armour myself, I would change to it. It makes sense to take replacement hormones in the balance that Nature provides, and I can't help but think we also need the T2 that is present in Armour, and also the T1, for some reason or another.

A CT scan I had to check for a kidney stone also threw up degenerative changes in my spine. So maybe a CT scan might be better than an MRI. Not sure, you'd have to check that. But the CT scan pictures were shown to me and from them I could quite clearly see the degenerative changes that had taken place in my vertebrae that they were talking about.

I can't make sense of the dosages for Mg etc that the nephro suggests either, but it might be a good idea to run with them for a week or so, if the pains enable you to do this? That's probably advice that I wouldn't take myself, though, just as you haven't!!!

I hope you can get some sense from someone soon about this.

Love and hugs meantime from Tigerlily xxxx

Thanks for your reply, Tigerlily. I do so much appreciate you taking the time to read my 'books' and then replying.

Yes, I am staying on the Armour for a couple of reasons. If my doctors would let me take enough Synthroid to get my T3 and T4 both up as high as they are on the Armour, it just might work, but they won't! As soon as the T3 and T4 are both in the normal range, they are satisfied, no matter how low they are. I thought the nephro would be different, since he was not happy with my T3 being this low before we increased the Armour dosage back in June. But, to my surprise, he was happy with it at 2.7 this time. I was not. Secondly, I wanted to try the Synthroid again because I read that Armour can cause neck, shoulder, upper arm, and thigh pain, and I've had these issues for 3 straight years now. I don't know if that is the cause of my cramps and pain, but I needed to find out.

And I still think my potassium and magnesium levels both need to be higher.
I did start taking the 10 mEq tablets as he prescribed. I will be going for more bloodwork soon; I'm very anxious to see where these levels are now. If they are STILL as low as they were the last time, I am going to try to convince him to increase the supplements to raise both levels. If I didn't have so many symptoms of low potassium and low magnesium, I would let it drop, but I can't stand these neck, shoulder, back, and upper arm cramps and pain any longer!

I did call the nephro's office on Wednesday. The receptionist took all of my info and relayed it to the nephro. She got back to me about 20 minutes later. Love these people!!

She told me the nephro was fine with me going back to the Armour. He said if that works better for me, then that is what I should take.

The receptionist said that the neprho does not want to increase my magnesium or my potassium supplements. I'm hoping once he sees my levels have not increased on the dose of supplements he prescribed, he might want to increase them. I was not taking any potassium supplements at all when my level was checked last. It was when I saw it was low at 3.4, that I started the 20 mEq supplements on my own. I felt safe doing this, because years ago when my potassium was higher than 3.4, my PA told me it should be higher, and she prescribed the 20 mEq tablets. The internist agreed with this. So I felt comfortable taking the 20 mEq tablets now. Like I said, though, I am now taking the 20 mEq tablets that the nephro prescribed. We shall see how this works.

The nephro did not order my thyroid levels to be checked this time. I will call on Monday to see if he wants to add that to my list of tests. If not, I guess those levels won't be tested til some time later.

I had a little trouble with my spine on Thursday morning. I actually woke up that morning with next to no pain in my neck, shoulders, or back! I thought I had died and gone to heaven! It has been 3 very long years since those muscles felt so good! I thought how neat that this happened on Thanksgiving morning! I thought I would have one more very wonderful thing to be thankful for!!

I went about getting things ready for our celebration. Two hours after I awoke, I was down in the basement looking for a big box to haul things over to my son and daughter-in-law's house for our Thanksgiving feast. I reached for a box, the vertebrae shifted in my upper spine, and I received a VERY nasty, excruciatingly painful pinch!!! ALL of the muscles in my entire back, neck, and shoulders cramped up something horrible!!! The pain was so bad right in my spine, I couldn't move. This has happened in the past to my lower spine.

Over the years it has happened 3 times in the lower spine. It seemed to happen every 5 years. It hasn't happened in that area now for about 10 years. Thank God!! But now it looks like it's going to start happening more and more often in the upper spine. I guess the discs are really getting bad. I started wondering if there was any way degenerative disc disease could cause edema. I never heard of this, but since my doctors can't seem to determine what is causing all of my edema, I needed to know this. I checked out many websites. It looks like it can! I will be discussing this with my nephro on the 9th. I think it is time to make an appointment with an orthopedist too.

It would make sense that degenerative disc disease in the upper spine would be causing neck, shoulder, upper and mid-back cramping and pain, upper arm pain, and tingling in my hands. More to think about!

There is nothing that scares me more than spinal surgery, but if that is what is needed to get rid of all of this cramping and pain, bring it on!! I can not live like this forever!

Onward!!!!

Audrey

Hi Audrey

Sorry to hear you've had a major spinal twinge. I originally had a back problem back in my 20's when I had difficulty getting in and out of low sports cars - not good for the street cred!!

I walked about like Neanderthal woman for many years and doctors told me to see a chiropractor who was always able to straighten me out somewhat, to walk another day. That might be your best course of action at the moment to see if one can give you any relief when your back "goes". In my 30's and 40's I was self-employed with my husband and we had to have private medical insurance in case either of us had an accident and was unable to work in the business for any length of time. We needed to get fixed quick and get back to work!!

So I finally asked for an MRI on the medical insurance and sure enough, I had an herniated vertebral disc. It was in such a state that I was told that an operation to "clean it out" was essential, or there would have been dire consequences within a very short time.

So I had the back operation to clean out the disc. All has been well since, apart from a few minor aches occasionally, which have been nothing compared to the major twinges that I used to get almost constantly. Needless to say, having had an intervention at one point, because the whatever bone is connected to the (space) whatever bone (you have to sing that bit of the old song if you know it!) I've now got some further erosion of vertebrae further up from the operation site, but at least I've been able to function and walk properly since having the operation.

With all of this story, I'm trying to tell you that although I was very fearful of having it my back operation went very well and was successful. It helped to have a very nice surgeon from Indonesia or somewhere similar called Mr Munchie Chocksie!!

That's a very interesting piece of data about degenerative disc disease causing edema, Audrey. Sounds like the two things couldn't possibly be connected, doesn't it? I'd be interested to read up on that if you have any links to your research. No rush, though, just as and when.

I hope Thanksgiving goes well for you and the family, and you are able to enjoy it. Have a happy time!

Love from Tigerlily xxxx

Thank you so much for the reply, Tigerlily. I'm so sorry it takes me so long to reply myself at times. I wish I had nothing else to do but talk to you all. Too much health crap going on, and too much time spent on trying to get it all sorted out!!

I am very happy to hear you had successful spinal surgery. I'm so glad you were able to get some relief! I always think of the worst when I think about someone messing with the spine. I have a cousin who had surgery on his neck a few years ago. When he told me of this, it scared me, and all I could think of was how happy I never had to have spinal surgery! Now here I am thinking that might be a real possibility for me in the near future. My cousin is also doing great since his surgery. Yes, he still has some minor issues too, but he's much better off than he was before surgery. I guess we just do what we have to do and pray it works!

Yes, I was surprised when I read that about degenerative disc disease causing edema. Normally, I save everything I find when I am researching, but I've been researching so many things lately, I sometimes slip up and don't. This time I didn't. If I come across it again, I will definitely save it and pass the link along to you. I have no idea if that's what is causing my edema, but it would make sense.

I had some more blood drawn 2 days ago. I received the results on the hospital's patient portal yesterday. Looks like I was right in thinking I needed more potassium than the nutty nephro was prescribing. He was not happy that I had been taking two 20 mEq potassium tablets for a couple of weeks when I found that my potassium level was at 3.4. He wanted me to take two 10 mEq tablets instead. So for the past couple of weeks, I took the 10 mEq tablets as he prescribed. The new lab results revealed a potassium level exactly the same as it was before I took the supplements! It is still 3.4! I am thinking maybe it is time to switch to a potassium-sparing diuretic. This would help the potassium. The reason he prescribed one that was NOT potassium sparing, was because low aldosterone causes HIGH potassium, so we both thought it would be ok to use one that was not potassium sparing. I think we need to rethink this! I had a lot of errands to run today, so I didn't get a chance to call him regarding this. I will be calling tomorrow. I have an appointment with him next Tuesday. If I wasn't feeling so sick, I would just wait and talk to him then, but I need to talk to him now.

The potassium isn't the only thing I need to discuss with the nephro. There's still the magnesium which I think should be higher. It is still exactly the same as it was 2 weeks ago. It's still at 1.8. Normal is 1.5-2.9. I would just like to get my level a little more mid-range. Since magnesium has so much to do with muscle and nerve function, and I am struggling with muscle and nerve issues, I think this would make sense. Last week when I called him about the cramps, he prescribed gabapentin. I HATE taking medication!!! Even though I know supplements can be just as dangerous as drugs, I would prefer trying them first! If we would get my potassium and magnesium levels to mid-range, and I still had so many problems with the muscles and the nerves, I would be a little more willing to try the drugs. I took the gabapentin on Thursday (Thanksgiving), because I really needed help to get through the day. I wanted to be able to enjoy my family as much as possible during our Thanksgiving gathering. I don't think it helped at all, but I was desperate, so I took it. I took it the next day too, but as soon as the pain was bearable I stopped. I am still cramping hard in my neck, shoulders, and back, as I have been for the past 3 years, but that excruciating pain in my spine is gone. My spine still feels like it's being squeezed and twisted, but it is not extremely painful. I don't think my nephro knows me well enough at this point. I don't think he realizes how badly I hate taking drugs, or how much pain I am willing to bear before I will resort to drugs. I hope he soon will understand this.

My sodium came up some this time. I was happy to see this. It was 135 two weeks ago. Normal is 135-146. This time it was 140. I'm very happy with this!

And now I have something new to worry about. My white blood cell count was low. It was 4.7. Normal is 4.8-10.8. Two weeks ago it was 6.9. Of course, I hit the internet searching for info. I learned that overwhelming infections can cause a low white count. The day the blood was drawn, revealing that 6.9 level, my throat had started hurting pretty badly. That night it turned into a very nice cold! I'm thinking that was probably why the count was at 6.9, which, by the way, is the highest my white count has ever been since it has been recorded on the patient portal back in April of 2011. Two days after my throat started hurting, I came down with another UTI, for which I had to start taking an antibiotic. While looking for answers on the internet last night, I also learned that antibiotics and diuretics can both cause a low white count. So I guess between the cold, the UTI, the antibiotic, and the diuretics, I don't have much of a chance to have a normal white blood cell count!!

Yesterday the edema in my feet was noticeably improved, so I cut back to 2 water pills instead of 3 a day. It looks about the same today, so I will continue just taking 2. I hope this helps my white count to increase.

I am also worried about the low white count because for several years I've been getting 6 UTIs yearly. My urologist told me more than once that if I continue to have this many, I will have to start taking a daily antibiotic. I REALLY don't want to do this! So I've been trying different supplements, hoping I would have less than 6 UTIs a year. I see this doctor every 6 months now. The last time I saw her, I had had 5 UTIs in 6 months!!! I asked her to please let me work on this a bit longer to try to solve the problem. She agreed to let me go another 6 months to see if my plan would work. It has been almost 5 months since I saw her last. I have only had 2 UTIs in that time! I have 5 weeks to go before I see her again. I REALLY need to be UTI free until I see her, so I can say I only had 2 UTIs in 6 months! Because if I can keep them at 2 every 6 months, that would be 4 a year, and she would be happy with that. But now with my white count so low, I am more susceptible to infections!! This is NOT good!!! I need my white count to come up!! I am going to hit the internet again here shortly and try to find out what I can do to make this happen. Any suggestions?

Well, it is time to feed my kitties. I've talked too much again anyway. When I come back, I will try to catch up with all of your situations.

Audrey

Bless you, Audrey - sorry to hear that your white blood cell count is low. It's no help, I know, but mine is also quite low in the range every time it's tested, so any research I do that can explain this I will let you know about.

I met someone on our last holiday who had been prescribed gabapentin. I can't recall what her main problems was but she had a lot of aches and pains generally, just like yourself. I think they had mentioned fibromyalgia to her as a diagnosis, but she sounded very much like a pHPT sufferer to me. She spoke quite highly of the gabapentin and said that she did not have any bad effects from it.

I know what you mean though about trying all the natural things first. I do the same, and most medics are surprised when they ask me what drugs I'm on at my age and I tell them only T3, so far.

I expect you have tried all the usual natural things for UTI's. I don't get them very often but when I had cystitis I found that Waterfall D-Mannose was very helpful.

I hope you can get some answers on Tuesday, if not before.

I have a whole day at the local hospital tomorrow and then it's down to London on Friday for the pre-operation checks at the Hammersmith. I should get a season ticket for their car parks!!

Love to you and your kitties from me and mine from Tigerlily xxxx

Wow Audrey so sorry you still suffering. My mother in law took gabapentin for nerve pain the doc told her it takes a few days before it starts really helping. She had to much dizziness so after a week she gave up. She is 85 and was already dizzy to start with. lol I really hope it will work for you. All the best, chin up and moving forward. Kathi

Oh Audrey I do hope this new problem with your white blood cell count being low. I hope this gets gets sorted as soon as possible, its so unfair you are still struggling with all of this. You do inspire me to keep up my fight for a correct diagnosis.
Lots of love Amanda xxxx