Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use https://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use

Join the forum, it's quick and easy

Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use https://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use
Hyperparathyroid Forum
Would you like to react to this message? Create an account in a few clicks or log in to continue.

Looks like I outsmarted all of my doctors AGAIN!!!!!

+6
Kathi209
Tigerlily
Jasmine2
Brigitte0
Amanda Lynne
Little Audrey
10 posters

Page 3 of 4 Previous  1, 2, 3, 4  Next

Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Thu Jul 24, 2014 2:10 am

First topic message reminder :

Well, my latest aldosterone level was just posted on the hospital's patient portal a few minutes ago. If you recall when it was tested on July 11th, it was found to be 4. Normal is 4-28 at the lab where the test was run. When I learned that diuretics can raise cortisol and aldosterone levels, and I had been taking diuretics for 2 weeks, stopping only 4 days prior to this blood draw, I requested that these tests be reordered. My PA agreed to this. My new level came back at <1!!!!!! It looks like I have indeed diagnosed myself for the second time in 3-2/3 years!! I cannot describe how happy and how excited I am right now!!!! I can't decide if I want to call my doctors or wait for them to call me. I just want to hear them say I was right AGAIN. Actually, since none of them have ever acknowledged the fact that I was right all along with the hyperparathyroidism, I don't expect them to admit I was right this time either.

At my last appointment with my PA, she said, "I really don't think it's your adrenals causing this. There really is no reason that your adrenals would be having trouble." God bless her. I do love her, but I still don't know why she assumed my adrenals were in good shape, and there was no reason for them to be malfunctioning, when I have soooooooo many symptoms! I am wondering just how long I have been dealing with this! As I look back now, I can remember feeling some of the symptoms for at least 30 years! That was when I first started having trouble with edema. I saw probably 20 doctors over the years for this problem, and none of them could ever figure out what was causing it. I can't believe NONE of them thought to test my adrenal function! I can't believe nobody ever thought to test my aldosterone, since it is the hormone that regulates our fluid balance and our blood pressure!

You all need to know that no matter what health issues you face, you can learn just like the doctors can learn! All you have to do is look for the answers. They are right there for us all to discover! If your doctor can't figure you out, hit the internet, and don't ever let them tell you to stay off of the internet! My doctors told me that more than once. I never listened to them. Had I stayed off of the internet, I would still have 2 parathyroid tumors in my neck, and I would probably never have been diagnosed with aldosterone insufficiency, and who knows how long I would have had to suffer with all of this $#!+!

Onward soldiers!!!!! There are battles to be won!!!

I would just sign this "Audrey," but tonight I am very proud to sign off as Dr. Aud!!! Hallelujah!!!!!  cheers 

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down


Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Amanda Lynne Tue Jul 29, 2014 9:52 pm

Wow Audrey you have been a detective as well as a DR. That us very interesting and it seems that you may have found a reason for your low levels.
I know you will get all this together for your nephrologist and it will give them a lot to think about and hopefully find a solution and get you well at last.
You are one clever woman, well done in all your work, you now deserve to be cured once and for all.
Lots of love Amanda xxxx
Amanda Lynne
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 61
Location : South East England

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Jasmine2 Tue Jul 29, 2014 10:15 pm

Audrey, once again I take my hat off to you! You've actually moved up a notch from inspirational to phenomenal force of nature ....like an unstoppable avalanche in your mission to find answers! You're fast becoming a force to be reckoned with and your medics should be afraid, very afraid because they have GOT to be asking themselves the question - if this lady can find the answers why aren't we.....?

Applause for Dr Aud  cheers

I sincerely hope all your hard work and tenacity pays off Audrey and that the nephrologist is your final port in the storm.

Jasmine x
Jasmine2
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Wed Jul 30, 2014 3:29 am

Well, thank you ladies for your kind words. You're both very sweet!

I think at this point I don't have any choice but to find some answers, as I just can't go on like this much longer, and it doesn't seem like my doctors are going to find them for me. I am so very desperate to be well again. I may not get all the answers right, but at least I'm getting somewhere. I wish these doctors cared more. I've said it before; if they could feel what we all are feeling, they would move a bit faster!

Onward we go, with or without the help of the professionals!!!

Audrey


Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Tigerlily Wed Jul 30, 2014 12:10 pm

That is a major piece of research, Dr Aud, that puts a lot of the pieces of the puzzle together!

I could not understand why your PA wanted to put you on blood pressure medication when you could show her all your own home-testing results that showed that it did not need BP medication. And of course the first type of BP medication that one is usually given is one which affects the kidneys, which is why we often call them "water tablets" over here (as in "oh, Mum's on the water tablets now", the implication being that she has high blood pressure).

This just goes to show that we really do have to take an interest in the maintenance of our own health - as often the medics are just stabbing in the dark and not doing the joined-up thinking that we ourselves can do because we inhabit our own bodies and know how they work.

I'm often amazed when I walk into a specialist's office having been referred to them by my doctor and when I first see them they ask why I've come! Have they not read my notes beforehand - sadly not is quite often the case.

Ooops! Rant over, Audrey! I do so hope you get some answers from your nephrologist on Monday!

Love from Tigerlily xxxx

Tigerlily

Posts : 1252
Join date : 2014-04-04
Age : 71
Location : Sudbury, Suffolk

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Thu Jul 31, 2014 12:41 am

Tigerlily, my PA prescribed the BP meds because my BP would usually rise to around 185/92 at my apointments. Even though I took her a list of all of my home pressures, she was afraid if my pressure rose that high at her office, it might be rising that high at other times. She ordered the 24-hour blood pressure monitor test, but I couldn't fine any place around here that would run the test for me.

About 15 years ago, I was having trouble with edema, and I asked my doctor at the time for a diuretic to take care of it, only because it was so ugly! My blood pressure at that time was around 100/60. I clearly did not have a blood pressure issue at that time either. She was reluctant to prescribe this for me since my pressure was normal, because, as you mentioned, diuretics are often prescribed to lower blood pressure.

Diuretics do reduce the water in our bodies, but I don't believe they affect our renin levels. Metoprolol, on the other hand, does block renin in the kidneys, which causes renin levels to drop. The renin and aldosterone levels are what I am concerned about now, as they are both abnormally low.

And you can feel free to rant anytime you wish to! After dealing with doctors so often over the past several years, I can certainly understand your need to rant!! I do more than my share!!

Audrey


Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Tigerlily Thu Jul 31, 2014 9:08 am

Bless you, Audrey - you are doing so well in investigating all of this.

Clearly Metoprolol was the wrong med for you and I don't suppose your PA could tell that it would not be good for you in the way it was.

My husband had a similar thing happen to him. He had abnormally low sodium. He was in hospital for 2 weeks before they found out what was the matter. Then as he was being discharged he was prescribed an SSRI anti-depressant - which lowered his sodium even more.

I'm off now for the MRI to check out my pituitary. Not looking forward to it, but I suppose it has to be done to rule out a pit problem, as all my pit hormones are low.

It will soon be Monday, Audrey, and I hope it brings you some answers.

Love from Tigerlily xxxx

Tigerlily

Posts : 1252
Join date : 2014-04-04
Age : 71
Location : Sudbury, Suffolk

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Brigitte0 Thu Jul 31, 2014 9:14 am

Good luck Tigerlily. Hope you're not claustrophobic Wink

Love 
Brigitte xx
Brigitte0
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 57
Location : Southampton, Hampshire

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Tigerlily Thu Jul 31, 2014 9:22 am

Thanks, Brigitte - I am a bit actually, and I can't sit still for very long without twitching!

This will be fun - not!

Will report back later.

Love from Tigerlily xx

Tigerlily

Posts : 1252
Join date : 2014-04-04
Age : 71
Location : Sudbury, Suffolk

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Brigitte0 Thu Jul 31, 2014 9:38 am

Audrey, with all the information you have gathered, your nephrologist will have to listen and since you are Dr Aud and will not be walked upon in any way, shape or form, your nephrologist appointment will give you answers to your questions I'm sure. It's not long to wait now and I hope you can have a lovely weekend preserving your energy so you're filled with get up and go by Monday! I know you've been saying you feel so weak - is that still getting worse? I am sending lots of positive vibes for you and loads of cyber hugs Smile

Love and more hugs 
Brigitte xx
Brigitte0
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 57
Location : Southampton, Hampshire

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Amanda Lynne Thu Jul 31, 2014 10:41 am

Good Luck Tigerlily, sending you lots of love Amanda xxxx
Amanda Lynne
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 61
Location : South East England

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Thu Jul 31, 2014 11:07 am

Tigerlily, that is awful about your husband!! What a shame. I hate to say this, but I have learned not to trust any medical professionals now. Isn't that awful? I have had enough bad experiences over the years, and I have seen them make enough mistakes, to make me leery of anything they say. I question everything now, and I'm almost afraid to do anything they tell me. It's a bad feeling wondering if I can trust them. And I certainly don't have all the answers, so it leaves me feeling rather lost.

Good luck with the MRI! It will be good to know either way if that pituitary is causing you grief. Just close your eyes and think about that hot Ken doll, whose picture I posted. That will get you through the procedure!  Laughing 

Brigitte, I am still very weak, but it doesn't seem to be getting worse. It pretty much stays the same now. It will be so nice to get this resolved.

And I do hope this new doctor takes the time to listen to what I have to say. Sometimes I feel like the doctors look at me now as some stupid, old woman. After the way that doctor treated me in the hospital ER last Friday night, I am afraid the appointment on Monday may go the same. I'm sure hoping not. I still can't imagine any doctor would feel the need to explain to anyone that a blood pressure had 2 numbers! And then without even looking at my badly swollen feet and legs, telling me everybody puffs a little during the warm weather? Oh, and I was looking at my report the other night, and you'll never guess what he put on there for the reason for my visit. Now, when I arrived there I told them all that I was having trouble with my blood pressure and pulse staying extremely low for 4 months, and I have been extremely weak for that period of time too. I did mention the edema after everything else. My report states that I visited the ER because of edema!!! The darned doctor missed the whole point of my visit!! They just don't listen, and it sure doesn't seem like they care. I need a doctor to help change my mind regarding all of this, because I don't like this feeling.

Thank you both for the support and hugs! It's so good to know SOMEBODY does care!   flower 

Audrey


Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Brigitte0 Thu Jul 31, 2014 11:19 am

Silly Doctor! Not worth thinking about him,  Audrey. Move onwards and forwards:he's in your past! 

I know it's difficult to trust the medical profession after everything that's happened, but give the nephrologist a chance - he hasn't proved to be an idiot yet! Think positively! We're all behind you. We're Dr Aud's Army  cheers and we'll be behind you and supporting you all the time  Smile 

Love and hugs 
Brigitte xx
Brigitte0
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 57
Location : Southampton, Hampshire

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Amanda Lynne Thu Jul 31, 2014 1:46 pm

It's amazing we are all experiencing similar problems with DR's whichever country we live in !!!
Good luck for Monday Audrey, Brigitte is right the Nephrologist might be the diamond in the pile of C**p you've had with the others. Hope they listen and get to the bottom (or should I say kidney) of your remaining problems.
Lots of love Amanda xxxx
Amanda Lynne
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 61
Location : South East England

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Thu Jul 31, 2014 4:14 pm

Thank you Brigitte and Amanda. I do appreciate you all rooting for me. Knowing you're there for me makes every step of my journey a bit easier to take.

Dr. Aud's Army? I love it!!! How can I falter with an entire army behind me? You all are the greatest!

Amanda, I do hope the nephrologist sparkles brightly in that pile!! I will take my sunglasses.  Cool 

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Tue Aug 05, 2014 1:28 am

Well, I am sorry it took me so long to post regarding my appointment today, but when I got home, I called my daughter to tell her how it went, then I emailed my sister, then I came right to the forum. Just as I was ready to post, the phone rang. It was my husband. He called to tell me he was at the hospital ER with our son, Jason!! Jas will be 42 in October. He had called my husband at work and asked if he could come and pick him up and take him to the ER. Jas has been having trouble with severe dizzy spells and nausea for a few months. He would not go to a doctor to have this checked out. He just kept hoping it would stop. Actually, as much as we have nagged him, he has not seen a doctor since he was a kid! He has been very healthy up til now. Still, he should have been going for routine checkups, but he refused to do so. For the past 4 days, this has all escalated, and he has really been having trouble! He was having so much trouble yesterday, he went to an Urgent Care facility near our homes. They told him it was allergies and prescribed medication. He took the medication this morning and was worse than ever. He said he kept feeling like he was going to pass out, he would sweat profusely and then be so chilled, he would shake. He was extremely dizzy and nauseous and was vomiting. There is nothing worse than having a sick child, even if they are in their 40s! Today at the ER, they ran a ton of bloodwork, did an EKG and also a CAT scan of his head. Everything came back normal. And we all know what it's like to be terribly sick and learn that all of your labs are normal! It was a relief to know it wasn't something so horrible that the lab results were screaming it out to us, but to know he was sick and have no idea what it was, was not good either. The doctor told Jas that he felt this all MIGHT be due to allergies. He prescribed a medication for vertigo. I asked the doctor if vertigo could cause hot and cold spells. I never heard of that. He said it could. I learned something new. So Jas is home now, we are all home now, and I am finally ready to post about my nephrology appointment!!  Smile 

My first appointment with this doctor today was a real experience. This was an older gentleman, small in stature, who entered the room wearing a suit and tie. I have NEVER seen a doctor dress this way. He looked so cute! We noticed he did not seem to be spending much time with the patients ahead of me. This was not a good sign. He had a very thick accent. I couldn't tell, but I think he was Greek. We had trouble understanding some of what he was saying, but as the appointment went on (and it was MUCH longer than we expected!), he turned out to be a very nice, intelligent man, who really seemed to know what he was talking about. What a nice surprise!

I started off by telling him that I had had a parathyroidectomy last November. He asked me how I new I had a parathyroid problem. I told him I did a ton of research, and I diagnosed myself. I told him it took close to 3 years to get a doctor to agree with me, and then I had the surgery. He asked if I ever had a bone scan (his words). I told him I did, and that I never had osteoporosis or even osteopenia. He sort of looked at me as if to say he was not convinced I actually had HPT! Then he asked me if I had any kidney stones. I told him I never did. Well, then I got an even stronger look of disbelief. I almost told him that it IS possible to have HPT WITHOUT having osteoporosis or kidney stones, but he was being so nice up to this point, I didn't want to ruffle his feathers. So I left it at that. I did tell him that I had 2 tumors removed. I also mentioned that my bones no longer ache and throb, my intestines are much calmer, my hair stopped falling out, and the chronic nonstop nose running has stopped. Maybe that convinced him.

He asked me why I decided to come and see him today. I told him that close to 4 years ago my neck, upper arms, thighs, and fingers on my left hand became VERY stiff and painful. That has been nonstop for close to 4 years! I said, "Also, at that time, my head started hurting every day, and it still does to some degree most days. My heels started hurting terribly, along with the entire bottom of each foot. This has also been nonstop for close to 4 years, but the heels now don't hurt nearly as badly when I'm walking, but they are still very painful when standing. My little toe joints started aching and burning, and they still do most days. My neck, shoulders, and entire back started cramping very hard just about every day, and they still do. I started cramping badly all over my body. My eyes became very dry, and I still have trouble with the left one most mornings when I awake. I started having terrible acid reflux, which I still do suffer from. The tendons on the insides of my thighs, the insides of my arms, the back of my left knee, and the back of both ankles started hurting, and they still do. My hips, knees, wrists, and thumbs all started aching very hard, and they still do some days. My eyelids started twitching nonstop for up to 6 months at a time, then they'd let up for a week or so and start up again. Sometimes all 4 would twitch at once. I became totally exhausted all the time. I drank water nonstop and peed like crazy! And I was unable to sleep for more than a total of 3 or 4 hours a night, while waking up every hour during that time. I also started having double vision. (I'm sure I missed a few symptoms, as my list was very long, but I think he got the idea.) Then 4 months ago, I started twitching all over my body nonstop, my muscles became VERY weak, I became very nauseous, and my blood pressure started dropping extremely low, along with my pulse."

I told him I have been dealing with edema for over 30 years, but nobody has ever been able to figure out the cause. About 15 years ago, I convinced my doctor to prescribe a diuretic to get rid of the water during really bad spells. I did not need it for my blood pressure, as my pressure was around 100/60, but I could not stand the edema, and nobody seemed to be able to figure out what was causing it. Mind you, I have been telling my doctors for also over thirty years that there was something wrong with my thyroid, but since the labs always looked normal, nobody would treat me.

He then looked at my feet and legs. He was amazed at the amount of water I was retaining! As he proceeded to look at my feet and legs, I just assumed I was going to have to convince him how bad they have been, because over the past 4 days, they have shown some improvement, so I grabbed the pictures I took in with me of my feet at their worst, taken last month. He didn't even need to look at them! He took 1 look at my feet and legs, then looked at me, then looked at my husband, and kept saying, "This is awful! This is just awful!" He told me he had a good idea what was causing it, and if we could get rid of all of this water, I would lose at least 10 pounds instantly. He said maybe even more. At this point, I said, "You think maybe we could get 40 pounds of water of?" He started chuckling and told me he didn't think we could stretch it that far. Darn.  Laughing 

He then looked at my labs and said, "Well, first of all, your kidneys are VERY strong and healthy. Then are not the problem. (And he held up his fists and pumped them in the air to indicate strength. It was really cute.) It appears to me that you need to increase your thyroid medication. The reason your renin and aldosterone levels are so low is because your poor kidneys are very tired of dealing with all of this water, and that is what is suppressing your renin, which in turn is causing your aldosterone level to be low." I was so happy, I wanted to jump out of my chair and hug him!!!

He told me my T4 is a bit low. I told him I had asked my endo about that, and she said she didn't want to treat it since it was just SLIGHTLY low! I knew I needed more medication, but she did not agree. As a matter of fact, when I talked to her nurse, I told her I had increased my Armour to 90 mg like we discussed at my last appointment, but my intestines were being very overactive, and I was wondering if that might be the cause. She told me to cut back to 75 mg again. I never did because of the low T4. I continued taking the 90 mg, hoping the intestines would calm down again, and they did! The doctor today told me I need to increase my Armour again. I asked him if he could up the dosage, because I knew my endo would not. He said he wanted to wait and see what my next labs looked like, to decide just how much to increase the medication. I will be going for this new labwork in about a week.

I was very impressed that this man did not just go by the TSH, which is what my other doctors seem to want to do. I have never understood this, since it is the T3 that our bodies actually utilize. What difference does it matter what the TSH level is? Maybe my pituitary is not secreting as much TSH as it should. That does not always mean I have enough T4 and T3 in my system! My TSH was 0.59 on my last labs. Normal is 0.35 - 5.60. If we raise the medication, the T4 and T3 might go up, but that TSH will probably drop below the normal range. This is so funny, because this is exactly what my holistic doctor was trying to do 8 years ago, when my other doctors begged me to stop seeing him. My TSH was only 0.06, but I felt much better!

I also asked the nephrologist if he would mind ordering a PTH and calcium check for me. I told him I was not due to have that tested for 2 more months, and I'd really like to have it checked now if I could. I really need to know for sure that the HPT problem is behind me. He immediately ordered that for me. What a wonderful doctor!

So he ordered another 24-hour urine.  Neutral  He wants to test my protein and creatinine clearance. He also ordered another urine test, which I have never done before. I have to pick up a cup at the hospital, fast for 10 hours with no fluid intake, then pee in the cup in the morning and run it over to the hospital to have it tested. He wants to check my sodium and potassium output, osmolality, albumin, and creatinine.

So it was a GREAT appointment!!! I have to continue feeling like crap for a while longer, but, once again, there is hope!!!

I know it takes 6 weeks for a thyroid medication adjustment to take effect. It's only been a few weeks since I increased mine, so I'm hoping the symptoms will begin to resolve at least a little bit soon. They probably won't resolve completely until we raise the meds higher, but I'll take any improvement at all! I am wondering if the water has been looking better for a few days now, due to the increased Armour a few weeks ago. That would make perfect sense.

So it would seem that all of these symptoms which I have been attributing to HPT, just may not be after all.

It was a very good day!!! Onward I go, and, hopefully, soon I will feel human again!!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Kathi209 Tue Aug 05, 2014 3:04 am

Audrey
I am very sorry about you son, mine is 42 and has been in and out of the hospital with ulcerative colitis so I know how we worry about our kids. Hope he feels better soon.

It seems like this new doc might just be a keeper. I feel he is going to get to the
bottom of your health issue's. At least I hope so. I'm really happy for you. flower  flower  flower Take care Kathi

Kathi209

Posts : 329
Join date : 2014-03-31

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Amanda Lynne Tue Aug 05, 2014 7:02 am

Audrey
Sorry to hear your son has been so unwell, I hope he's on his way to recovery. Doesn't matter how old they are they are still our kids and seeing them ill is worse that anything.
I'm so glad you had such a great appointment and your Nephrologist was a knowledgeable dr. I bet it was fantastic he was so concerned about your swollen feet/ankles. I'm keeping everything crossed that when he gets your results back he adjusts your medication and you finally get your health back, you so deserve that.
Lots of love Amanda xxxx


Last edited by Amanda Lynne on Tue Aug 05, 2014 7:04 am; edited 1 time in total (Reason for editing : Stiff fingers not typing properly)
Amanda Lynne
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 61
Location : South East England

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Meggy Tue Aug 05, 2014 7:41 am

Hello Audrey, I hope your son is still feeling better now. And how wonderful your new nephrologist isn't a monkey or goat:-) Onward and upward!

Meggy

Posts : 163
Join date : 2014-04-08

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Brigitte0 Tue Aug 05, 2014 8:00 am

Audrey, I'm sorry to hear your son has been so poorly and really hope he is better soon. 

It sounds like your Nephrologist was worth waiting for! I knew you should be positive Smile He's going to get to the bottom of all your symptoms and you will be well again soon, which is fantastic. I'm so pleased that everything went well and you can look forward to feeling yourself again Very Happy

Lots of love and hugs 
Brigitte xxxx
Brigitte0
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 57
Location : Southampton, Hampshire

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Jasmine2 Tue Aug 05, 2014 8:33 am

Yay Audrey! Whoop whoop ......! Finally you've found a doctor who seems to know what he's talking about! Ironic though isn't it that a nephrologist has confirmed your thyroid issues ...... ! And how weird is it that our process has been running virtually parallel since we met on here?!!!! First the PT thing, then failing to return to 'normal' after surgery, numerous tests and diagnostics to find out why and now thyroid issues surfacing at the same time ..... spooky!

Onwards Audrey.....! 

Jasmine x
Jasmine2
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Jasmine2 Tue Aug 05, 2014 8:41 am

Oh and I'm so sorry to hear about Jason's illness, how scary for you! Hope he's soon feeling much better so you can stop worrying about him and concentrate on getting yourself well. It doesn't matter how old our children are we are still their mums and will never stop worrying. My mum still worries about me terribly and said she and dad have shed tears for me over the past year or so seeing me so poorly and feeling so helpless because they can't do anything to try and make me better. When I was in Tampa my mum said she and dad didn't dare go to sleep until they got the call from Mr Jasmine that I was OK, and my mum is still my person to go to when I'm feeling upset, as are my children with me.

Jasmine x
Jasmine2
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Tigerlily Tue Aug 05, 2014 10:04 am

So glad to hear that your nephrologist was a star and it wasn't "all Greek" to him, Audrey!!

The book of the same name that accompanies the website stopthethyroidmadness.com has a lot of useful info about people taking Armour thyroid not being encouraged to increase the dose by their doctors, but that they feel a lot better when they do increase the dose slowly and in a measured way according to their symptoms and not according to standard blood test results. The book contains precise information about this and the results that people have had.

I always wanted to take Armour thyroid (old-fashioned dessicated thyroid now superceded by "superior" synthetic thyroxine) but I found it difficult to get a prescription for it over here. I know pharmacies that will dispense it, but not without a prescription. And that doctor at Addenbrookes nearly laughed me out of the door when I mentioned it, so I've been down the thyroxine route.

When I've had my pHPT adenoma removed, I will keep a close check on thyroid hormone levels in case Simon was right on the old forum that hypothyroidism might be masking primary hyperparathyroidism. There is a paper on this - Google "Hyperparathyroidism masked by ...." and it should come up in case anyone's interested.

Onwards with the pee-testing, Audrey - and I hope Jason is feeling better soon.

Love from Tigerlily xxxx

Tigerlily

Posts : 1252
Join date : 2014-04-04
Age : 71
Location : Sudbury, Suffolk

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Tue Aug 05, 2014 2:11 pm

Thank you all.  Smile 

I talked to my son last night, and he seems to be feeling a bit better. I do hope it continues to improve. That was so scary! Thank you for caring.

Kathi, I am so sorry to hear about your son. That must be awful watching him suffer with that. One of my good friend's son was having so much trouble with his colitis, he had to have a colostomy performed at the age of 35. He is doing MUCH better now and says he wishes he would have done that sooner. At least now he can live a much more normal life. How sad to watch our children suffer so. I feel so badly for my friend, and now I feed badly for you too. I do hope your son is doing well and showing improvement.

Yes, Amanda, I was very surprised that this new doctor took my edema so seriously. After that ER doctor telling me it was probably just normal summer puffiness, I was very ready to argue that point this time, and was pleasantly surprised to learn I didn't need to. I wish I would have gone to see this guy 30 years ago!!

No, Meggy, no monkey or goat this time! Hallelujah! I've seen way too many of those animals. Don't ever wish to see any more! I've been lost in that darned zoo for way too long!

Brigitte, I do hope this doctor will FINALLY be the one to get to the bottom of all of this crap! I wish I didn't have to wait 2 more weeks to see him again, but it's better than waiting 6 months like I have to with my endocrinologist, so I am thankful. And speaking of my endocrinologist, I am very close to finding a new one now. It has been over a week now since I left a message for her nurse to call me, and she still has not called. I don't like feeling like I am such a bother to them. I would rather feel that they cared and that they were really interested in helping me. I'm about done with them.

Yes, Jasmine, our cases are VERY similar! This actually IS very spooky! I hope we both can soon get to the bottom of all of this crap and be well again! I hope everybody on here can soon be well again!!

Tigerlily, if you are doing well on the synthetic meds, don't worry about changing. My sister is on Synthroid and doing very well! I am actually wondering if I would do better on Synthroid since my T4 is low, and Shythroid consists only of T4. Armour consists of both T3 and T4 which is why it is thought to be the superior medication, but I am not so sure it is the best solution for everyone. It was my holistic doctor 8 years ago who first started me on thyroid medication, and his choice was Armour. All of my other doctors begged me to stop taking Armour and get started on Synthroid. I refused, thinking Armour was better. I finally caved and tried Synthroid for a few months. I was not happy with it and went back to Armour.

While checking out Stop The Thyroid Madness online, I read that when the T4 is low, and the T3 is normal, it indicates that the T4 is REALLY struggling to convert to T3, which indicates the need for more medication. I think my new, little, Greek doctor has finally cracked my case! I'm sure hoping so anyway. I'm so sick of this pain and all the other $#!++% symptoms!

And yes, I wonder how many of us have both hypothyroidism and hyperparathyroidism, and 1 can certainly mask the other, since symptoms are so similar for both. I was just discussing this with my daughter yesterday. Had I not had all of these symptoms, which I thought were from hyperparathyroidism, I would not have pursued the HPT diagnosis the way I did, and I would still have those tumors in my neck. I never imagined the thyroid could cause all of this crap! If this all turns out to be from my thyroid, I will be very angry with my doctors for letting me suffer for so long. Some of the symptoms started over 30 years ago! That was when I started telling them I thought there was something wrong with my thyroid!! I have only been taking medication for this condition for about 8 years, and had I not found that holistic doctor, I probably would have not been treated until just a couple of years ago!

As for the new 24-hour urine test, I would gladly do a 72-hour urine at this point if it was what it took to get well again!! I might need a dump truck to haul it all to the hospital, but I would gladly do it!

Yep, onward we go!

Audrey


Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Little Audrey Fri Aug 08, 2014 2:12 am

Sorry I haven't been on here much for a couple of days. I've had some things going on here keeping me busy.

My son is gradually feeling better. I spent the day yesterday sitting with him. I don't remember the last time he asked that I come to be with him when he wasn't feeling well. I thought that was cute. I had offered to come over, but I wasn't sure if he'd want me there. I know sometimes when I'm feeling my worst I would rather just be alone. But he said it would be nice if I came over, so I did, and I loved it! Made me feel like a mom again.  Smile 

A week ago, my left ear canal started hurting very badly. I mentioned before that both ear canals have been itching terribly, and they also have been peeling inside. Well, I'm not sure if this new problem is related of not. I'm thinking it is probably due to all of the extra fluid in my body. About a month and a half ago, my left ear canal swelled up and hurt like heck! I couldn't hear much out of that ear for a couple of days. The swelling went down on it's own, and all seemed to be well. Then a week ago it swelled up again and started to hurt. This is not from fluid actually inside the canal. It seems there is fluid in my face, right in front of my ear, which causes the inside of the ear to become inflamed, hot, and painful too. Very strange! Well, Tuesday night it seemed to feel almost normal again. Then I woke up yesterday morning to find the right ear canal swelling up and starting to hurt! What the heck?! This one is the worse yet! It is visibly swollen on the side of my face, in front of the ear, and I know it is not from fluid actually in the ear canal, because at first I could pull my ear outward, and when I did this I could hear perfectly normal, but when I let go, I couldn't hear much at all. Today it is HORRIBLE! Very hot, swollen, and painful, and I can't hear AT ALL!!! And to make matters worse, it continues to itch way down inside, but because of the pain, I can't scratch it!! I am in agony here! Pulling on the ear (as painful as it is!) does not help me hear now. Now I have to put my little finger in there and pull outward, opening the canal. Then I can hear perfectly normal again, but as soon as I let go, I can't hear AT ALL again!! And the only reason I put myself through that is that I HATE not being able to hear!!!! I am wondering if this might be a sinus issue. I know sinuses can cause ear problems.

Over the past 4 years I have had an awful problem with my sinuses and ears clogging up. I am thinking this is probably due to all of this excess fluid too. My Eustachian tubes are very small and clog up easily from the inside. If I lie flat on any surface, my ears will clog right up. I had to have the left ear drum lanced about 30 years ago because the fluid got up inside of my ear, and it wouldn't come out. This problem has been VERY annoying!!! I'm really thinking this might be a sinus issue now. I am going to see how it feels in the morning. If the swelling isn't down at all, I guess I'll be going to see another doctor. I'm so tired of appointments!!

I made some ear drops with alcohol and vinegar, started using my saline nasal rinse again to help open up everything in there in case something needs to drain, took some allergy medicine, and some ibuprofen for the pain. I'm afraid to put any actual drops in my ear because as swollen as it is, if something goes in, it probably won't be coming out, and I don't want anything sitting in there. I know the alcohol and vinegar will probably evaporate very quickly, but I'm not taking any chances. I put some of the mixture on my finger and put my finger in my ear to spread it around. When my daughter was young, she was always getting water stuck in her ears when she swam, so the ENT doctor gave me a recipe for these ear drops. She is 39 now and still swears by this stuff! Works like a charm for her. My ENT doc recently gave me a prescription for some drops to help with my itchy ear canals. I thought it smelled just like those drops of years ago. I checked the ingredients and, sure enough, it was alcohol and vinegar! So I just make my own again now. Speaking of that, it's time to go put some more in there.

I have heard that one of the symptoms of hypothyroidism is itchy ear canals. Hmmm......... I really need to increase that medication SOON!!!!!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 71

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Tigerlily Fri Aug 08, 2014 10:46 am

This is interesting, Audrey - maybe you have only very small gaps between the bones in your head/face/skull and these problems occur when you have the swelling/edema. I think you said on a recent post that the route through one of your nasal sinuses (correct me on this, can't remember precisely) was too small for the camera to go through during an investigation?

I'd be interested to know the ratio of alcohol to vinegar in your home recipe - it sounds like a very useful thing to be able to make up.

I hope you are getting some relief today.

Love from Tigerlily xxxx

Tigerlily

Posts : 1252
Join date : 2014-04-04
Age : 71
Location : Sudbury, Suffolk

Back to top Go down

Looks like I outsmarted all of my doctors AGAIN!!!!! - Page 3 Empty Re: Looks like I outsmarted all of my doctors AGAIN!!!!!

Post by Sponsored content


Sponsored content


Back to top Go down

Page 3 of 4 Previous  1, 2, 3, 4  Next

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum