# One Step Forward, Two Steps Back...



## jenny v (May 6, 2012)

Well, after having such a great appointment with my new endo last week, things have gone downhill a bit. My labs actually look good (why does my thyroid always calm down right before an appointment?!? ) although I'm still having all the same hypo symptoms as usual:

TSH 1.58 (0.4--4.5)
FT4 1.53 (0.8--1.80)
FT3 3.1 (2.0--4.4)

However, they also did a urine test and found occult blood in the sample. They tested for a UTI but there wasn't an infection so I'm being sent tomorrow to have an ultrasound of my kidneys and bladder. Has anyone ever had this before? I've only had one UTI in my life about a year ago and never felt any problems since then.

I'm just kind of tired of all of this tonight--it's a little overwhelming and exhausting and it just feels like it keeps piling up. Whew!


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## Guest (Jul 18, 2012)

I know this may not be of help, idk. but when i feell things piling up, id go out and see a movie, etc, get massage. or pm other forum members. alot of us know how <<insert explicit here>> things can get, & are here for ya.


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## hillaryedrn (Dec 14, 2009)

I totally understand your frustration! However, I will (hopefully) make you feel a little better about the blood in your urine. It's EXTREMELY common to have blood in your urine once. It's occult, which means you can't see it with the naked eye, so you the patient never knows it's there, so you don't realize when it's there. I promise you, the blood by itself just once isn't a reason to panic. ((HUGS)) It will be ok!


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## Andros (Aug 26, 2009)

jenny v said:


> Well, after having such a great appointment with my new endo last week, things have gone downhill a bit. My labs actually look good (why does my thyroid always calm down right before an appointment?!? ) although I'm still having all the same hypo symptoms as usual:
> 
> TSH 1.58 (0.4--4.5)
> FT4 1.53 (0.8--1.80)
> ...


I don't think your labs look good. Most of us feel best w/TSH @ 1.0 or less and the FREE T3 at about 75% of the range given by your lab. 3.1 is not even mid-range. (3.2)

FREE T3 explained by Woliner
http://thyroid.about.com/cs/testsforthyroid/a/freet3.htm
Dr. Mercola (FREES)
http://www.mercola.com/Article/hypot...nosis_comp.htm


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## jenny v (May 6, 2012)

Thanks for all of the support! I tend not to tell a lot of my family and friends about medical things until I have definitive answers (which isn't good, I know!), so it can be easy to slip into that isolated kind of state. I have my ultrasound tonight and they sent my urine off to be further analyzed, so hopefully I'll know something soon.

Andros, do you think I should ask them to up my dose of Synthroid to try and get my FT3 up? My TSH has finally been dropping steadily since the spring (it was 3.8 in May and now I'm down to the 1.58), but I've found from past experience that if I drop below 1.0 I feel totally hyper. I'm just mad that I don't have any FT3 or FT4 tests from my previous idiot endo to compare things to!


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## jenny v (May 6, 2012)

I had a complete ultrasound of my thyroid this morning and boy, my neck is going to be sore tomorrow (they put a pillow under my shoulders and I had to hyper-extend my neck until the top of my head was almost on the bed)! I won't get the official results from the doctor but the tech was pointing things out to me as she went along (mostly because I kept moving my head and trying to see the screen!).

She said one side of my thyroid is larger than the other and it's pushing back against my trachea, but not horribly so. She also said she didn't see any cysts or nodules but there were "black spots" all over my thyroid, which are seen with Hashimoto's patients. Has anyone else had this before? She pointed them out to me on the screen and I could definitely see them, but they weren't huge or anything, they were just kind of all over my thyroid. I should get the official doctor's report in a few days.

I also had an ultrasound of my bladder and kidneys last week but I'm STILL waiting to hear back on that. I'm all ultrasounded out! :tongue0013:


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## Andros (Aug 26, 2009)

jenny v said:


> I had a complete ultrasound of my thyroid this morning and boy, my neck is going to be sore tomorrow (they put a pillow under my shoulders and I had to hyper-extend my neck until the top of my head was almost on the bed)! I won't get the official results from the doctor but the tech was pointing things out to me as she went along (mostly because I kept moving my head and trying to see the screen!).
> 
> She said one side of my thyroid is larger than the other and it's pushing back against my trachea, but not horribly so. She also said she didn't see any cysts or nodules but there were "black spots" all over my thyroid, which are seen with Hashimoto's patients. Has anyone else had this before? She pointed them out to me on the screen and I could definitely see them, but they weren't huge or anything, they were just kind of all over my thyroid. I should get the official doctor's report in a few days.
> 
> I also had an ultrasound of my bladder and kidneys last week but I'm STILL waiting to hear back on that. I'm all ultrasounded out! :tongue0013:


Will be anxious for you to share the official report. I am kind of if not a lot worried.

That just does not sound right to me.


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## mouthy83 (Jul 18, 2012)

Just a little note on the blood in ur urine...

I have had kidney and bladder trouble my whole life ( i have a UTI atleast once a month)
I have noticed that my doctors only treat me if the blood is there with protein. I always have blood in my waters but i do suffer, i am very interested in ur scan results for them if u have them?? Hope things are on the up ((hugs))


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## jenny v (May 6, 2012)

Andros, I'm actually hoping the black spots mean something and I can finally just have the *&#$%*@ thing taken out! But again, this was the lab tech showing me these things and not the doctor, so nothing is official. I wonder if those are "dead spots" or just areas where my thyroid is banged up after years of my immune system attacking it?

mouthy, I've only had one UTI in my life (and that was enough!) and I was convinced this was just another minor one when they found the traces of blood in my urine, but there was no bacteria present. They wanted to see my bladder and kidneys to rule out stones, I guess, and they sent my urine off for some kind of culture. It's been a week since I saw the urologist so I'm hoping to hear something soon! I'll definitely post what I hear from them.


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## mouthy83 (Jul 18, 2012)

The blood in my urine is from stones, well they are calcium build ups but they are small enough so dont need any treatment.

did ur doc use a PH stick thingy (sorry, words are not my thing) sometimes bacteria wont show up on them, u are supposed to dip and wait a while but docs are too impatient to wait long enough and the culture will come back showing an infection.


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## jenny v (May 6, 2012)

Yeah, they did the dipstick test! I'm not sure how long they left it in the sample since they did it outside of the exam room but they sent the sample off for a culture and some other kind of test. It was almost a week ago, so I'm anxious to hear some results!


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## mouthy83 (Jul 18, 2012)

They should only take a week, hopefully u'll hear soon.

I get to do a dip test tomorrow, yey how exciting! I might invest in my own ph sticks... would save so much time


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## jenny v (May 6, 2012)

Well, got the results back from my kidney and bladder ultrasound. Kidney stones!! :sick0012: I swear, when it rains, it pours!

Has anyone ever had this before? Is it at all related to thyroid problems?

I see a urologist again on Monday to discuss how many stones, what sizes, treatment options, etc.


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## Andros (Aug 26, 2009)

jenny v said:


> Andros, I'm actually hoping the black spots mean something and I can finally just have the *&#$%*@ thing taken out! But again, this was the lab tech showing me these things and not the doctor, so nothing is official. I wonder if those are "dead spots" or just areas where my thyroid is banged up after years of my immune system attacking it?
> 
> mouthy, I've only had one UTI in my life (and that was enough!) and I was convinced this was just another minor one when they found the traces of blood in my urine, but there was no bacteria present. They wanted to see my bladder and kidneys to rule out stones, I guess, and they sent my urine off for some kind of culture. It's been a week since I saw the urologist so I'm hoping to hear something soon! I'll definitely post what I hear from them.


I hear ya' loud and clear. Waiting is agonal though. Saying a prayer for you and sending good thoughts.


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## mouthy83 (Jul 18, 2012)

Even tho i do have stones they are small so no need to treat yet.

I do know that once they know the size and amount there are a few options;

.Leave them, like mine.

.There's a vibration treatment in which the vibration breakes the stones into smaller 'manageable' pieces which u then pass urself.

. Or they can removed them surgically.

I just found this link for u

http://www.nhs.uk/Conditions/Kidney-stones/Pages/Treatment.aspx

This is from the nhs uk tho, but im sure treatment should be the same where ever u are.

There does seem to be a link between stones and thyroid... i think its the parathyroid gland that regulates the calium build up in ur body, and the stones are calcium build ups.

Hope this has helped, and welsh cwtches for u x


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## Andros (Aug 26, 2009)

jenny v said:


> Well, got the results back from my kidney and bladder ultrasound. Kidney stones!! :sick0012: I swear, when it rains, it pours!
> 
> Has anyone ever had this before? Is it at all related to thyroid problems?
> 
> I see a urologist again on Monday to discuss how many stones, what sizes, treatment options, etc.


Yes and yes! I am so sorry! Gall stones are also related to thyroid. Sadly, things just don't move right along (motility) for the thyroid patient.

What will you do? Try to pass them yourself at home or?????


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## jenny v (May 6, 2012)

Thanks, Andros!

When I see the urologist on Monday my first two questions will be:
1. How many stones are there?
2. How big are they?

I've also left a message with my endo to see if she will test my parathyroid levels, just in case, since that could be a cause. I just want the damn thyroid out of me! It seems to be just piling on the nasty health issues lately.


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## mouthy83 (Jul 18, 2012)

jenny v said:


> Thanks, Andros!
> 
> When I see the urologist on Monday my first two questions will be:
> 1. How many stones are there?
> ...


Seems like a very good idea to me.

Are u in any pain with it?


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## jenny v (May 6, 2012)

Not so far, mouthy83, it's just a dull ache in my lower back that comes and goes. I just don't want to be in a meeting at work and then doubled over in pain on the floor! That's why I'm so anxious to see how many there are and how big they are. I wonder what size they could be since they showed up on an ultrasound?


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## mouthy83 (Jul 18, 2012)

Even tiny ones show up.

Pain in ur lower back could well be ur kidneys, thats where i get mine. And the 'ache' feeling is the same feeling i get when i am unwell with them. Anti-inflamitries work better for this pain rather than the usual pain killers. I take Diclofenic with paracetamol to take the edge off if it get too bad.


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## jenny v (May 6, 2012)

My endocrinologist emailed me back and said she wants to know what my kidney stones are made of and if it's calcium, she wants to check my parathyroids.

Two questions for the group:
1. How on earth do they figure out what they're made of? 
2. Would parathyroids show up on an ultrasound of just my thyroid?

I'm thinking since I just did my thyroid scan, if the parathyroids were inflamed, wouldn't they have shown up on that?


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## mouthy83 (Jul 18, 2012)

Really not sure how they can tell what they're made of, sorry  maybe they'll know already from the ultrasound??

Good news on the endo agreeing to check parathyroid if they are calcium... thats 1 worry off ur mind hopefully.

Remember to write down all ur questions and take them with u.


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## jenny v (May 6, 2012)

Thanks, mouthy! How did your appointment go?

I think I may have actually passed my first kidney stone last night! I woke up around 3am with what felt like horrible cramping on my lower left side and for the next hour the pain kept moving down towards my bladder area. And then all of the sudden it was over. I'm wondering if it was a very small stone? I'm hoping they're all small, because while it was not pleasant, I wasn't curled up in a ball on the floor screaming and throwing up like some stories I've heard.


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## mouthy83 (Jul 18, 2012)

If it was a stone, and to me it sounds like it was, hopefully they'll all be small. Was the pain in waves?? Really lucky u weren't worse with it... maybe u should tell the doc so the can to move things along?? When is ur app??

I was so sick when i passed my first few stones, im kinda an expert now lol

drink plenty of cranberry and stay away from too much orange juice. Acid in orange juice can cause acid stones, was always told not to drink orange so it has some connection with ur kidney function. i will try to find a link for u.

No need to answer about my app, u seen my post


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## Andros (Aug 26, 2009)

jenny v said:


> My endocrinologist emailed me back and said she wants to know what my kidney stones are made of and if it's calcium, she wants to check my parathyroids.
> 
> Two questions for the group:
> 1. How on earth do they figure out what they're made of?
> ...


They do some sort of test, that's all I know about that but I will say that Vitamin C in excess will caust calcium stones and especially the calcium fortified OJ.

However, this is only true for those of us that have a messed up metabolism. Things just don't move along as they should.

Not sure about the parathyroids showing on a thyroid ultra-sound. I think they are sort of nestled into and behind the thyroid gland.

See illustrations here:
http://en.wikipedia.org/wiki/Parathyroid_gland


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## mouthy83 (Jul 18, 2012)

I've found a few links... BUT some say its bad and some say its good for kidney stones, even im confused now lol

I will say tho i keep away from orange juice as ur kidneys work harder to 'do its thing' with things that are high in concentate, which can make it really painful. well i was told that about 2 decades ago but cant find anything to support that on the net so dont quote me on it. (oh dear brain fog alert!!)


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## jenny v (May 6, 2012)

I haven't had orange juice in ages, so I'll continue to stay away from that! I have had calcium levels on the high end of normal for the past several months (10 on a range of 4.0-10.4), but I actually had my parathyroid levels tested in December 2011 and they were totally normal. I wonder if hypothyroidism can cause kidney stones?

And yes, mouthy, the pain came in waves. It lasted for about an hour and then suddenly, it was totally gone. Today I feel fine, I'm just exhausted, sore (from tensing up my whole body) and not really all that hungry. I have my appointment with the urologist on Monday morning and now I'm dying to know how many of these things I have.


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## mouthy83 (Jul 18, 2012)

poor u 

There is a definate link between thyroid and calcium build up and stones. I have spent my night reading up on it all. Im begining to think mine are related too and might be the trouble im having at the moment. (poop!!)

I'm also dying to know what the urologist has to say... dont forget if the pain is too much to go to a&e or ER or whatever its called where u are. Ur stones could be diff sizes and because u managed 1, doesnt mean u can 'brave' another if it gets too much.


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## jenny v (May 6, 2012)

Just got back from the urologist and the kidney stones are only in my left kidney (and the poor thing is a little swollen). There are several in there and the largest is 5mm but they don't show up well enough on an x-ray to do the sound wave blasting thingy so basically I have to pass them on my own. I passed one last week with just Aleve and managed okay, but they gave me a prescription pain killer for when the big one decides to move. Yikes!

My urologist is really cool and just went ahead and took a blood sample to test my parathyroid levels instead of me having to go back to my endo for that. She also said she's seen kidney stones in people who have had thyroid problems for a while (like me)--has anyone else heard that before?

I'm just at the end of my rope at this point and kind of furious that I have to fight this hard and go through all of these crappy health issues and they still aren't all that anxious to just remove my thyroid already!


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## mouthy83 (Jul 18, 2012)

So... im thinking good news on the 'no surgery needed' right?? And just keep in mind when u pass the 'big boy' once its gone the pain goes, just keep thinking it over and over!!! Glad they gave u strong painkillers just incase and cwtches to u, hope its over soon for u!!!

Glad they're checking ur parathyroid, and i really do hope things are going in the right direction for u xxx


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## jenny v (May 6, 2012)

I think it's good, mouthy, I hope so! They wanted me to do a cystoscopy (?) where they stick a camera up into my bladder just to see if everything looks fine and I said absolutely not. I've had more ultrasounds, x-rays, blood work and labs done in the past month than I have in my entire life and I've reached my limit! Plus, my bladder looked totally normal on the ultrasound and I've never had any problems so far.

I'm just going to start carrying around the pain pills on the off chance the "big one" hits when I'm not at home. But I just want to solve the root problem of why there are kidney stones in the first place, which I'm thinking could be part of my thyroid issues.


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## mouthy83 (Jul 18, 2012)

I know exactly what u mean! I burst into tears minutes before my cystoscopy because i had just about had enough of all the tests! but once i calmed down it was over before i knew it and not painful at all! But of course its ur choice. They found follicles in my bladder and basically sed it looked like an old laddies bladder ( i was maybe 18 at the time) so for me it did give extra info. But i had this done before all my other kidney function tests.

How u feeling today??? N e movements????


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## jenny v (May 6, 2012)

I'm feeling okay today--I ate way too much fiber yesterday because the urologist told me I was constipated (which I didn't feel) and I definitely think I overdid it clearing things out!


But I'm not doing the cystoscopy unless I feel problems later on. I've had enough invasive tests for now!

No more stones passed yet. Just playing the waiting game!


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## mouthy83 (Jul 18, 2012)

O joy :/ Lets hope everything else starts clearing out for u too lol

Hope ur drinking plenty of cranberry juice


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## Andros (Aug 26, 2009)

jenny v said:


> Thanks, mouthy! How did your appointment go?
> 
> I think I may have actually passed my first kidney stone last night! I woke up around 3am with what felt like horrible cramping on my lower left side and for the next hour the pain kept moving down towards my bladder area. And then all of the sudden it was over. I'm wondering if it was a very small stone? I'm hoping they're all small, because while it was not pleasant, I wasn't curled up in a ball on the floor screaming and throwing up like some stories I've heard.


Oh, it was small. I promise you that! Glad you are passing them. Keep the water going. Flush, flush and flush some more.

How do you feel? I always felt a bit trembly after passing a kidney stone.


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## jenny v (May 6, 2012)

> Oh, it was small. I promise you that! Glad you are passing them. Keep the water going. Flush, flush and flush some more.
> 
> How do you feel? I always felt a bit trembly after passing a kidney stone.


 I was flat out exhausted, like I had just run a marathon! I was also a little sore, I think from being tensed up all over until the pain stopped.

I have several small stones, the largest being about 5mm, but they said none of them are obstructing anything and they aren't big enough to hit with a laser, so I have to just pass them on my own (with prescription pain killers for when Big Earl passes, as I've named the big stone). I'm drinking my weight in water every day, avoiding soda and coffee, and using this Cystex Cranberry concentrate stuff every day to avoid any infections. The urologist did a blood test to check my PTH levels, so hopefully I'll hear something soon!


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## mouthy83 (Jul 18, 2012)

'Big Earl'......

Hmmmm i like it!


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## Andros (Aug 26, 2009)

mouthy83 said:


> I've found a few links... BUT some say its bad and some say its good for kidney stones, even im confused now lol
> 
> I will say tho i keep away from orange juice as ur kidneys work harder to 'do its thing' with things that are high in concentate, which can make it really painful. well i was told that about 2 decades ago but cant find anything to support that on the net so dont quote me on it. (oh dear brain fog alert!!)


Absolutely. You are correct. High consumption of Vitamin C can promote kidney stones of the calcium ilk.

However, this is most usually in folks who have autoimmune and their systems just don't process things well.


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## jenny v (May 6, 2012)

It's been a while, but I finally saw my urologist for a follow up appointment yesterday to get the results of my blood work and 24-hour urine test.

Basically, there is really no good reason why I have kidney stones! Mine are calcium oxalate stones, which I think are the most common type, and there was no underlying kidney, liver, or blood problems that should cause them (my parathyroid levels came back totally normal--32 with a range of 14-72). When my urologist told me I needed to lay off soda, coffee, red meat and orange juice I just started laughing--I hardly ever have any of those things--and she was a little floored. I'm basically just supposed to keep doing what I've been doing and adding in a B-complex vitamin (I was only taking a B-12 and she said I need something with a B-6), more magnesium, and drinking more lemon juice/lemonade (I need more citrates).

She said she wants to see me again after I have my thyroid out because she thinks that may clear up a lot of my issues or explain things better. I just have to keep praying that my thyroid acts up again for my endo so we can schedule surgery!


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