Latest Hematology Appointment

Just wanted to fill you all in on my latest appointment.

It started off with me signing in at the wrong desk, and sitting needlessly for 35 minutes in the waiting room.    By the time I got that problem figure out, and got into the exam room, my blood pressure was 189/110!!!     Now, you have to remember that I have hypoaldosteronism, and my normal pressure at home is around 100/60!    I still get some diastolic pressures in the 50s.    It was not a good start to the appointment.   Thank goodness, the doctor realized what was going on, and just laughed at that very high pressure.

The first thing he did was noticed my low TSH (<0.06).   Normal at my lab is 0.34-5.60.     He immediately told me I was taking too much thyroid medication.    I told him that I take Nature-throid (an NDT), and NDTs suppress the TSH.    He nodded as if he agreed, but I think he was thinking that ALL thyroid medications lower TSH when they raise the T3 and/or T4, because it became very apparent he had no idea what I was talking about!     I told him that my FT4 was low/normal, and my FT3 was now almost exactly in the middle of the normal range, so I really did not want to lower my thyroid medication!    And then he said something that REALLY shocked me.   Now, I know a lot of doctors think it is the TSH that should be used to diagnose a thyroid problem, but I have never heard them say what this guy said 2 days ago.    He said, "Well, the T3 and T4 don't really have much to do with anything.   It's the TSH that is important."        I almost fell off of my chair!     How was I ever going to convince this guy of anything differently.   His mind was made up.     I told him if we lower my thyroid medication, my T3 and T4 would fall too low.   He said they wouldn't.   I told him they have in the past.    He finally just shrugged his shoulders, as if to tell me I was wrong, but he was done discussing it all, and the subject was dropped.    Wow!!

Then we started discussing the iron deficiency.    I couldn't sleep the night before, thinking that he was going to be one of those doctors who feels that just because something is in the normal range, no matter how low, you are good to go.   After researching and learning that my level should be between 70 and 90, I knew I was going to be in for some sort of argument if he felt differently.    If I felt good, and I was well, I wouldn't care, but knowing that many of my symptoms could be from an iron deficiency, I would have to insist on a higher level.     To my surprise, when I asked him how high he would be willing to let me take my ferritin to, he said between 60 and 150!!     I guess this made up for that comment and argument regarding the thyroid!       He doesn't treat my thyroid, so he can think what he wishes about that.    This is why I now have 13 doctors!!     One understands one thing, and another understands another.  Between them all, maybe I will finally get well!

Ok, my time here on the computer is up for now.    I need to go paint outside and vacuum the pool.  Back to work.   Hope you're all doing well and getting closer and closer to that goal of feeling GOOD again!!!

Audrey

Sadly, this doc was simply reiterating what the thyroid Mafia have managed to preach as fact about TSH.
I had exactly the same comment from my Endocrinologist, who is supposed to be a Thyroid specialist!

Unfortunately, it is a career-risking move to disagree with the official guidelines from the American and British Thyroid Associations, so I do have some sympathy and docs have to give more credence to the official guidelines than to patients.

The bottom line is that there is no blood test that can tell you if your organs are getting enough Thyroid hormone. FT3 and FT4 will give some indication of Thyroid hormone activity, but TSH is only useful for an initial diagnosis prior to medication. It is just about meaningless once you are taking hormone replacement medication.

Edwin

I totally agree with everything you said there, Edwin.   I hope some day, though, the medical schools will start to teach their students about NDTs, so we patients don't have to continually try to defend our decision to use them and continually have to convince them that it is normal to have a low TSH when using them!    So many people now use them, I find it very hard to believe they haven't started teaching about them.

At one point during my appointment when my doctor was questioning something I said, I told him I have spent a LOT of time researching over the past 5 years.    I reminded him that I diagnosed myself with hypothyroidism, hyperparathyroidism, hyporeninemic hypoaldosteronism, and the iron deficiency, so sometimes I do know a bit of what I'm talking about, even though I certainly don't know everything.   

As we were discussing various issues, he was kind enough to say, "Wow, you really have done a lot of research!"     I think after he got to know me better, he started to respect how hard I've worked at all of this, and he realized I did know what I was talking about, and I let him know that I totally respected his opinions also.   He said he admired my spunk.    I told him it's because I've had to struggle so much for so long and fight so hard for various diagnoses.  I told him when you are so sick you'd rather be dead, none of your doctors seem to be able to help you, and they won't listen to you, you learn how to diagnose yourself and eventually convince them you are right.    I told him I'm not afraid to question things anymore.   

The appointment ended with us both respecting each other.    In my opinion, that is the way it should be.

I just don't understand why it is so hard for doctors to realize that if it is the FT3 your body actually utilizes, THAT is what is important, not the TSH.    You are right; the TSH can be used to diagnose a thyroid issue initially, but once you start with the hormone replacement, it's not very reliable for that purpose.     I think some day the doctors will get it, just as I think someday they will all get it straight about hyperparathyroidism.    I think it's just going to take time.

Audrey

I forgot to ask, Edwin, how are you feeling?     Have things improved at all for you?

Audrey

Little Audrey wrote:I forgot to ask, Edwin, how are you feeling?     Have things improved at all for you?

Audrey

Thank you for asking, Audrey

Things have settled-down.
My renal function has stabilised with an eGFR of 13 (Creatinine =400) and I am just managing to keep going without dialysis.
I now have a fistula, which is ready to use when needed.
My Hb has finally returned to its rightful place (100 - 120) after 6 months of being low due to post surgery blood-loss.

Now that the fistula is done, I think that the next on the list is my PTH, which was 70 the last time it was checked !

Edwin

Hi Audrey & Edwin
Audrey I do hope you get your iron sorted sorry I've only just read your post very quickly but it's about time you got some good news on your health and everything settled down for you. X
Edwin I'm pleased that your renal function is more stable and hope you won't need dialysis even though the fistula is there in case. great that the Hb is up and you manage to get the pth sorted 70 is very high.
Love Amanda xxxx

Well, Edwin, I asked how you were doing, and then didn't bother to get on here to reply to your response!   I am so very sorry! 

I too am VERY happy your kidneys are shaping up a bit and functioning better for you!    So very glad that your levels are all normalizing now!     That is great!!

Yes, I think it is time now to get that parathyroid issue taken care of.   I do believe you would feel much better if you had the surgery and got rid of the little bugger or buggers causing the problem!

I myself am still not well, but it seems that one by one I am checking things off of my list of issues.   

Now that my iron and ferritin are increasing, I have some energy!   I no longer feel like I'm just going to collapse all day and simply die!     I honestly think I had been iron deficient for probably at least 30 years.   I can remember feeling that terrible, intense fatigue that far back.   

My kidneys are producing more renin now, but my aldosterone is still too low, so I'm still taking Florinef for that problem.   My nephrologist said he thinks my body is just not synthesizing the aldosterone.    I am wondering if this is going to be a life-long problem now.  I am still staying hopeful that as my iron increases, this problem will improve, as I did read that iron is needed for the various organs to produce enzymes.   I asked my nephro about this.  He said he doesn't think it will make any difference.    I appreciate his opinion, but I do know from experience that doctors can be wrong, so I'm hoping he is. 

This doctor (the neprho) also told me that despite my TSH being at 0.06, it would appear I need MORE thyroid medication and not LESS, as all of my other doctors keep preaching to me.  He determined this by looking at my FT3 and FT4 levels, which is what any good, knowledgeable doctor would do.  My FT3 is just barely mid-range, and my FT4 is low/normal.   He told me I need to increase my dosage by 10%.   Since this man does not normally treat issues other than kidney issues, he was not sure of which strengths Nature-throid was manufactured.   I told him I would find out.  He said when I did, to give him a call and he would be more than happy to write a script for me.    So that is what we did.

Exactly a week later, I had an appointment with my 'old' endo, who said she was retiring, but now told me she has renewed her contract for another year.    This woman seems nice enough, but she had no idea how to diagnose hyperparathyroidism, she has no idea how to treat my hypothyroidism with NDTs, and she did not believe me when I told her I had an iron deficiency.    So,  when she told me she was retiring, I started shopping around for a new endo, hoping THEY might better know how to treat my hypothyroidism with the NDTs.    (Unfortunately, the new endo I chose to check out is just as clueless as she is!)   Anyway, the old endo looked at my TSH of 0.06 (which was tested before I increased the Nature-throid dosage), she told me I was now hypERthyroid, and I needed to cut back on my thyroid meds!  Oh, my gosh!!!   I told her that when you treat with natural thyroid meds, it is normal for the TSH to be suppressed, and that you need to treat according to the T3 and T4 levels.    I told her my nephro had just told me a week earlier that I need to INCREASE my thyroid meds.   She got rather upset, shook her head, and told me that maybe I need to just let HIM treat my thyroid them.     I didn't say anything at that time, but, actually, the neprho HAS been treating my thyroid for a couple of years!  

I'm still dealing with VERY stiff muscles in my neck, upper arms, and thighs.  This has been going on now for 5 years nonstop.  I thought it was from the HPT, but that problem seems to have been taken care of, so now I'm just praying it's from either the thyroid issue or the iron deficiency.    I'm hoping once we get those levels up to where they belong, this muscle stiffness and pain will resolve.

I'm still getting UTIs WAY too frequently!    I have been on antibiotics 13 times in the past 9-1/2 months to treat them.    Two infections took 3 rounds each of antibiotics, because the urologist kept telling me to use Keflex, which obviously does not work for me.  I took 2 rounds of Keflex for one infection, then had to take Macrobid to finally kill it.    Then 2 months later, I had another UTI.   The doctor put me on Keflex AGAIN!   After 2 rounds of Keflex, I was put on Macrobid AGAIN to kill it!   Now, I am going to be using Macrobid as my go-to antibiotic.    Three weeks after THIS infection, I had another one!!!!    This time I took the Macrobid to start.  I took it for 3 days.   The infection was gone.      

Nobody can figure out why I am still getting so many UTIs!    My urologist told me it was due to lack of estrogen.    I reminded her that 14 years ago when I got my first UTI at the age of 49, I started off getting them every 3 or 4 months, then every 2 months, then every month, and then every 2 or 3 weeks, just like I'm getting them now.   Then I had a bladder lift operation and did not have ANY infections for 3-1/2 straight years!!!     Obviously, the bladder lift surgery had something to do with the cessation of infections for that long period of time!    Then after 3-1/2 years, the UTIs started again.  Again, they were a few months apart, then a month apart, and now 2 of 3 weeks apart again.      Now, anybody with even half a brain would be able to realize that if we're going with the theory of lack of estrogen being the cause, this would make no sense!    This would mean, my estrogen was lacking for about 5 years,  then the day my bladder was lifted, my estrogen miraculously returned and was good for 3-1/2 years, and then all of a sudden it disappeared again!!!   ?????     I think there is more to this than lack of estrogen!     I know a sagging bladder that does not empty completely is more prone to infection.  That was why I had the bladder lift, which seemed to cure the problem for 3-1/2 years.   My guess would be that my bladder has fallen again, but my doctors tell me it has not.    

I have been taking cranberry extract for about 10 years.  The UTIs worsened.   I added grapefruit seed extract about 8 years ago.  The UTIs continued (except for those 3-1/2 years after the bladder lift).   I added D-mannose, SagaPro, and fem-dophilus about 3 years ago.  The UTIs continue to worsen.   I have just now added UT Synergy last week.   My neighbor recommended this.  She said she used to get UTIs every couple of weeks, and nothing would stop them, until she started taking UT Synergy.  She said she hasn't had an infection since she started taking it!     I am not getting my hopes up, because nothing else has been able to help so far, but I figured I have nothing to lose by trying it.    Well, except money, because this stuff is $43 for a month's supply!     I am now spending over $150 a month for UTI prevention, which is not working!      I am very depressed over this.    I know nothing good will come from taking antibiotics so darned often!   I know how this will end if we can't stop these infections!!

Oh, and I am also still using the Premarin (estrogen cream) prescribed by my urologist, going along with her theory that lack of estrogen is causing the UTIs.   

I also know that underactive thyroid AND iron deficiency can cause a person to be prone to frequent infections.    I am praying with all my might that all of my hard work  researching and all of the money I've spent on supplements will be enough to finally stop these stupid infections!!

So, that is where I am right now.    Some things improving, and some not, YET! 

I do hope you all are doing well or at least doing better!!

Audrey

Little Audrey wrote:Well, Edwin, I asked how you were doing, and then didn't bother to get on here to reply to your response!   I am so very sorry! 

I too am VERY happy your kidneys are shaping up a bit and functioning better for you!    So very glad that your levels are all normalizing now!     That is great!!

Yes, I think it is time now to get that parathyroid issue taken care of.   I do believe you would feel much better if you had the surgery and got rid of the little bugger or buggers causing the problem!


Audrey

Hi Audrey

Sorry to hear that you are struggling.

I am of the opinion that some Nephros and Cardiac docs seem to know more about the importance of T3 than Endos, but that is not really a surprise as the thyroid guidelines (USA and UK) virtually ignore T3.

There's some useful informtion on NDTs here: http://www.stopthethyroidmadness.com/armour-vs-other-brands/.

My renal function is improved this month (eGFR of 15), which is nice.  I have a theory that it may be due to the extra 5mcg T3 that I have been taking, but I guess that it will be difficult to prove.

My next Nephro apopintment is in 1 month, so that is when we will discuss my Parathyroids (PTH = 80.9 last month).
I was wondering about asking to try Cinacalcet.  Not sure if my PTH is too high for this to work.

Edwin

Wow, great news about the eGFR, Edwin!!   Sorry it has taken me so long to get back on here to comment on this!    I'm VERY happy for you!   And, I would not be surprised if the extra T3 is making the difference for you.    Wouldn't surprise me one bit.  You are right, though, that it would be hard to prove, and I'm sure none of your doctors would want to agree with you on this.    I have a heck of a time trying to convince my doctors of things that make perfect sense.   I think that is because they just don't have much, if any, common sense!   They might be extremely intelligent, and they might know a lot about their specialty, but they just don't have a lick of common sense!

Yes, with a PTH of 80, unless your calcium is very low, I think it's time to get the hyperparathyroidism taken care of.    I'm sure that would make you feel much better.

I am working on something else now regarding my health issues.   I have been working on the iron deficiency now for 7-1/2 months.   I'm not sure where my ferritin is now, since my hematologist refused to order this test for me.    He said there is no need to check it more often than every 6 months.    I would like to have it checked maybe every 3 months, but he's a young doctor who seems to feel the need to prove his power, so he would not give in.     I had an appointment with my little, nutty nephrologist shortly after the hematology appointment, and this dear man immediately wrote the script for me when I asked HIM to check my ferritin.   I love this doctor so much; I would trust him with ANYTHING regarding my health, even though he is a kidney doctor!     He is treating my thyroid for me, along with the hyporeninemic hypoaldosterone, since he's the only doctor I have who understands how to treat with NDTs.    I am about to ask him to treat something else unrelated to nephrology for me.

I noticed something a bit off with my most recent lab results, and I am really surprised I didn't notice this sooner.    My white blood cell count was below the normal range.    I checked all of my old lab results.  I have some back as far as 2001.   I saw that my white cell count has been low/normal since way back then, 14 years ago!    It has been VERY low normal for about a year now, dropping BELOW the normal range 3 times.

I started getting UTIs 14 years ago.   When they got to a point of occurring every 2 or 3 weeks, my gynecologist suggested bladder life surgery.  He explained that a drooping bladder can't completely empty, thus any bacteria that enters the bladder, just sits in there multiplying until there is a full blown infection.  Now, I had been having UTIs for about 6 years, and for over the last year of those 6, they were occurring every 2 or 3 weeks.    Then I had the bladder lift surgery and had NO UTIs for 3-1/2 straight years!!     Then after the 3-1/2 years, they started again.  First every few months, then every 2 months, and now I'm back to every 2 or 3 weeks.

Anybody with any common sense at all would realize that bladder lift surgery played a HUGE part in the cessation of the UTIs.    And my guess now might be that the bladder has fallen again, or at least that should be checked!     When I suggested this to my urologist 2 days ago, she refused to even consider this as a cause of the recent recurring UTIs!    She told me that had nothing at all to do with the UTIs, and that the problem is my lack of estrogen!     She had prescribed estrogen cream 6 months go.   She told me she could guarantee just 1 or 2 UTIs a year if I started using this cream.    Like I said, it has been exactly 6 months now, and the UTIs are occurring every 2 or 3 weeks again!!!    One would think lack of estrogen is NOT the reason for my UTIs.   Well, anyone but this urologist.  She is sticking to her guns.    She did not even offer to check my bladder to make sure it WAS right where it belonged!

I then presented to her my theory of possibly the iron deficiency and the low white cell count being the cause of all of these infections.   Her response to that was, "Well, I can't do anything about THAT!  All I can do is help you with the UTIs!"    Wow, she didn't even suggest who I should see or where I could look for help.   And, the more I thought of this, if she would have helped me figure out how to raise my white cells, maybe she WOULD have been helping me with the UTIs!  

And, I thought of something else when I left her office.   If my problem was lack of estrogen, why are the UTIs happening more often now, after using the estrogen cream for 6 months?!     This is where the common sense thing comes in again.  I really don't think lack of estrogen is the total cause of my UTIs.   I'm wondering if it has anything AT ALL to do with the UTIs.

It was not a good appointment.   I left realizing if these UTIs were going to stop, once again it would be up to ME to solve another health issue myself and make them stop!

So I hit the internet once again searching for answers.    I learned that diuretics and antihistamines can both cause low white cell counts.   I have been taking diuretics for probably 20 years.     I've been taking Mucinex Sinus Max since June for the clogged ears and stuffy nose.    I am still not sure if ALL diuretics cause low white cell counts or if just certain ones do.    I do know the Mucinex I'm taking does not contain any antihistamines.   So that is not causing the problem with the cells.  

I think my body is just very run down and tired of dealing with so many health issues all at once.   I wouldn't be surprised if having my thyroid hormones so low for so long has something to do with the low white cells too.  I've never heard of any connection between the 2, but I wouldn't be surprised since the thyroid plays such a huge role in all of our bodies' functions.

So very late last night, I posted about all of this on Facebook, and a very kind, caring woman suggested a couple of things for me to try.     She suggested I try sodium bicarbonates to help raise the pH of my urine to inhibit bacterial growth since bacteria thrive more readily in more acidic environments.      She also suggested I try silica to help with the edema, so maybe I wouldn't need the diuretics.   That would help with the white cells since diuretics can decrease white cells.    So I got online and ordered some sodium bicarbonate, and I found some silica which also contained Horsetail and bioflavonoids.   Among Horsetails qualities is the ability to act as a diuretic.   This will help with my edema.    Biolavonoids should help to boost my immune system.   I'm very anxious for these things to arrive at my home so I can start taking them!

I WILL figure out what is causing these UTIs, because I a NOT going to die from taking too many antibiotics after working so hard to get through the hyperparathyroidism, hyporeninemic hypoaldosteronism, hypothyroidism, an iron deficiency, and issues with my darned white blood cells!!    I have fought too hard to get where I am, and I'm not going to let this do me in!

Audrey

Hi Audrey

Sorry that you are struggling.

I take sodium bicarb capsules 4 times a day.
I think that this is to try and counter acidosis caused by the low kidney function.

I am fortunate in that I get regular Ferritin testing.  In fact, I had a remnder letter to get it tested as it is over 1 month since the last test.
When it gets down to around 150-160, this triggers an appointment for an iron infusion.
So, I guess that there are some advantages of having low kidney function

BTW, i believe that diuretics can interfere with thyroid medication, so you need to make sure that you do not take the diuretics at the same time as thyroid meds.

Edwin

Sorry you are still struggling Audrey, hope you get some relief soon.
Love A xxxx

So good to have these recent reports from you, Audrey! I find them full of really useful information, even though I'm sorry at the same time to hear that you are still struggling. I too admire your spunk! And your comments about your doctor's entrenched views and how you "handle" them are also very enlightening.

Your comment about seeing so many doctors for so many things rings true with me here in the UK. There is no "joined up thinking" in the medical "care" I've received here, either. I've been through a lot of separate departments that rule out their own speciality and then ping you back to your doctor. It is just like the Medieval guild system brought into the 21st century as far as the medical profession is concerned. And my doctor, who cannot himself put all my symptoms together and come up with any ideas, keeps complaining about the number of specialists I've seen!

I last saw a Consultant Physician, to whom I was referred by the local Ear/Nose/Throat Clinic by a switched-on registrar who, when she couldn't give a definite diagnosis, asked the magic question "where do we send you from here to get some answers?" Although that was again passing me on to someone else, she has at least passed me on to a Consultant Physician who is supposed to be able to take an overview and hopefully see the bigger picture. I saw him a month ago and have another appointment in a month's time. He also checked my ferritin (no results back yet) and kindly ordered an X-ray of the lump that has appeared on my left foot, which is also the foot from which I had a small malignant melanoma removed in 2007.

So that's where I am at the moment. Sorry to hi-jack your thread, Audrey - but there is also another link between us which is that my lymphocytes have also been at the bottom of the normal range for some years, and I'm having trouble with painful muscles and joints in the hands/arms/elbows/shoulders, just as you describe.

I'm fast coming to the conclusion that the PTH disorder was totally incidental and quite a separate issue, as with that hopefully cured by the surgery, all this other stuff seems to have descended upon me!

Best of Wishes here to EDWIN as well - so pleased that things have stabilised somewhat for you so that you can address the PTH issue. I have read recently that when this is solved in the case of patients with severe kidney problems they get a lot of relief from it. I do so hope that this is true in your case, Edwin.

So Love and Hugs to you, Audrey, Amanda and Edwin - and to Everyone else on the forum. I need to post a separate thread to update you on my "stuff", but I need to bring a few more strands together before I do that.

Much Love to you all in the meantime from Tigerlily xxxx