# Levothyroxine - Severe dry mouth, feeling of "lump" in throat



## MDguy99

Hello everyone, I am new to all of this and I would love any insight you all could offer me.

I'm a 22 year-old male who has recently been diagnosed with slight, but symptomatic, hypothyroidism. I began taking 75MCG Levothyroxine this morning at 10:00. Did not have anything to eat since last night. I took it with two glasses of water.

1 and a half to 2 hours after taking it, I noticed an odd sensation on the left side of my neck where the thyroid is located - it left. A few minutes later, I tried swallowing and to my surprise- my tongue nearly stuck to the roof of my mouth because it was so dry- hardly any saliva at all. When I finally mustered enough spit to swallow, I did, and that proved to be more difficult for my comfort. It felt like a lump was stuck in my throat! I went on to try and drink some but even that was barely lubricating my mouth and felt odd going down my throat.

It almost feels like my tongue is swollen in my throat, however I have no way of knowing that for sure, of course.

I called the doctor, thinking I was having an allergic reaction. He came on the phone, heard what I described, and blew it off as normal. He said he would not lower my dosage because I would still have the problem and that I should continue taking it once a day as told. He even suggested that I take it before bed "so I don't have to deal with the problem". I said no way - I'm not about to take it before bed and wake up choking! He was getting a bit irritated at this point, said the feeling would "go away in a week" and that if I didn't want it "then don't take it". I told him I guess I would continue with it - taking it during the day so that I could tend to my issues and drink fluids while awake.

It has been hours now and I still feel the sensations.

Am I missing something? I would have thought he would have lowered the dosage or told me to stop and try a different medication? This is a very worrying side-effect for me, and I know that I would definitely stop it if it went on for a week, but why try? I might as well just stop it now since only one dose has been in my system.

I am thinking about finding another doctor and requesting Armour Thyroid, as I have heard people have not experienced as many side effects on that medication as it is "natural".

Are these side-effects normal? Does what my doctor said sound right? What would you do if this were you?

Thank you so much - I really appreciate any help!


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## MDguy99

Does anybody have any thoughts at all on this? I really need some input tonight. : ( Thanks!


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## northernlite

I've been taking Levothyroxine for 3 months now and have no negative side effects at all. I have never heard of the side effect you describe but maybe other have and will be on tomorrow to give you some feedback.

Synthroid (the brand name) and Levothyroxine both carry the warning to take with a full glass of water. They can get stuck in or swell in the throat and cause choking and gagging. So make sure you are washing your pill down with a lot of water.


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## desrtbloom

I suggest a new doctor. I haven't heard of this type of side effect before; however, everyone is different. I would suggest Synthroid BRAND versus the generic Levothyroxine.


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## MDguy99

Thank you both so much.

Yes, I am contemplating a switch in doctors, but I have also thought of the Synthoid and I am afraid my insurance may not cover it. Perhaps if I tell them I have an adverse reaction to this, they will


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## kpn_chin_up

Hi,

I've been on synthroid for almost a month with no side effects like yours, but I re-iterate that the bottle does say to drink with plenty of water, so see how that works for you.

KCU


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## MDguy99

kpn_chin_up said:


> Hi,
> 
> I've been on synthroid for almost a month with no side effects like yours, but I re-iterate that the bottle does say to drink with plenty of water, so see how that works for you.
> 
> KCU


I drank a ton of water, so it's not that, but I'm glad you are side effect free. : )
I'll go ahead and take my dose tomorrow and see how it goes. The pharmacists I have spoken to are convinced that if I switched to name-brand Synthoid, nothing would be different because it has the same active ingredient that my prescription does now. I'll update this thread until it's solved in case I can help anyone else who has or will have this experience


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## northernlite

MDguy -

One more thing, the mind is an incredible tool in wellness and happiness. You are 22 and been given a simple medication to improve your health. It is a synthetic replacement hormone for a hormone that your body is having trouble producing. It is not a perfect pill for all people with hypothyroidism but it is widely use and effective in many.

I see a lot of concern and panic in your writing, "why should I take more than one day", "I need to find a doctor to give me Armour", etc.

Use your mind to your advantage not to torment yourself. Pick a time to take your medication when your stomach is fairly empty. Then eat normally an hour or so later and forget about it!!! Go about your life without thought about it until the next day when you have to take the pill again. If you are like me, in a couple of weeks, you will notice improvement in your symptoms. Go back to the doctor every 6-8 weeks or whatever he recommended and get your dose moved up or down until you find the sweet spot that you feel well.

It is very legitimate that Levothyroxine might not be the medication for you. Maybe Synthroid is or Armour is but you need to relax and give this medication and your body a chance to work together and see what you get. Think of your Levothyroxine as producing wellness in your body and take it and forget about it and hypothryroidism and live your young life.


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## MDguy99

northernlite said:


> MDguy -
> 
> One more thing, the mind is an incredible tool in wellness and happiness. You are 22 and been given a simple medication to improve your health. It is a synthetic replacement hormone for a hormone that your body is having trouble producing. It is not a perfect pill for all people with hypothyroidism but it is widely use and effective in many.
> 
> I see a lot of concern and panic in your writing, "why should I take more than one day", "I need to find a doctor to give me Armour", etc.
> 
> Use your mind to your advantage not to torment yourself. Pick a time to take your medication when your stomach is fairly empty. Then eat normally an hour or so later and forget about it!!! Go about your life without thought about it until the next day when you have to take the pill again. If you are like me, in a couple of weeks, you will notice improvement in your symptoms. Go back to the doctor every 6-8 weeks or whatever he recommended and get your dose moved up or down until you find the sweet spot that you feel well.
> 
> It is very legitimate that Levothyroxine might not be the medication for you. Maybe Synthroid is or Armour is but you need to relax and give this medication and your body a chance to work together and see what you get. Think of your Levothyroxine as producing wellness in your body and take it and forget about it and hypothryroidism and live your young life.


I'm sorry, but that is a little insulting. I am 22, but I've probably been through more than most people who are 50 and I am very mature and level-headed. I do not have anxiety or panic disorder. Using someone's age to justify that comment is ignorant and unneeded. It is not as simple a medication as you'd think. There are side effects and some people do have allergic reactions, believe it or not. There is a paragraph of them (that I did not even read before I took my first dose, so no, I was not "putting it in my head"). I do pick a time of day when my stomach is empty - as I said, I take it when I wake up. I did "eat normally" over an hour later. I was relaxed and actually EXCITED to take this pill to alleviate my symptoms, then I had a reaction and became concerned- it's as simple as that. I felt the side effect all day and night yesterday and now, I have yet to take my pill and feel fine. There is a correllation. If you felt what I was trying to describe, I bet you'd be a bit unnerved and come off "anxious", too. I'm not going to "forget about it" after I take it and move on - this is something to keep an eye on, certainly an effect of the pill for whatever reason, and not caused my "anxiety" whatsoever.

That said, I am taking it now and an drinking TWO glasses of water. We'll see...


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## Andros

MDguy99 said:


> Hello everyone, I am new to all of this and I would love any insight you all could offer me.
> 
> I'm a 22 year-old male who has recently been diagnosed with slight, but symptomatic, hypothyroidism. I began taking 75MCG Levothyroxine this morning at 10:00. Did not have anything to eat since last night.
> 
> 1 and a half to 2 hours after taking it, I noticed an odd sensation on the left side of my neck where the thyroid is located - it left. A few minutes later, I tried swallowing and to my surprise- my tongue nearly stuck to the roof of my mouth because it was so dry- hardly any saliva at all. When I finally mustered enough spit to swallow, I did, and that proved to be more difficult for my comfort. It felt like a lump was stuck in my throat! I went on to try and drink some but even that was barely lubricating my mouth and felt odd going down my throat.
> 
> It almost feels like my tongue is swollen in my throat, however I have no way of knowing that for sure, of course.
> 
> I called the doctor, thinking I was having an allergic reaction. He came on the phone, heard what I described, and blew it off as normal. He said he would not lower my dosage because I would still have the problem and that I should continue taking it once a day as told. He even suggested that I take it before bed "so I don't have to deal with the problem". I said no way - I'm not about to take it before bed and wake up choking! He was getting a bit irritated at this point, said the feeling would "go away in a week" and that if I didn't want it "then don't take it". I told him I guess I would continue with it - taking it during the day so that I could tend to my issues and drink fluids while awake.
> 
> It has been hours now and I still feel the sensations.
> 
> Am I missing something? I would have thought he would have lowered the dosage or told me to stop and try a different medication? This is a very worrying side-effect for me, and I know that I would definitely stop it if it went on for a week, but why try? I might as well just stop it now since only one dose has been in my system.
> 
> I am thinking about finding another doctor and requesting Armour Thyroid, as I have heard people have not experienced as many side effects on that medication as it is "natural".
> 
> Are these side-effects normal? Does what my doctor said sound right? What would you do if this were you?
> 
> Thank you so much - I really appreciate any help!


OMG!!! Stop taking this drug!!

Levothyroxine side effects
Stop using levothyroxine and get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:

http://www.drugs.com/levothyroxine.html

Please please do not take this and the most important thing I think you can do for yourself right now is to find a doctor who cares about you and who is also well informed.

I would like to welcome you to the board. But I am sorry about what brought you here.










There could be something in the filler like a dye that you are allergic to but w/swelling tongue and other symptoms, you have definitely had an allergic reaction.

When you recover from this, I know we all would like to discuss your hypo and your symptoms etc..


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## MDguy99

Andros said:


> OMG!!! Stop taking this drug!!
> 
> Levothyroxine side effects
> Stop using levothyroxine and get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:
> 
> http://www.drugs.com/levothyroxine.html
> 
> Please please do not take this and the most important thing I think you can do for yourself right now is to find a doctor who cares about you and who is also well informed.
> 
> I would like to welcome you to the board. But I am sorry about what brought you here.
> 
> 
> 
> 
> 
> 
> 
> 
> 
> 
> There could be something in the filler like a dye that you are allergic to but w/swelling tongue and other symptoms, you have definitely had an allergic reaction.
> 
> When you recover from this, I know we all would like to discuss your hypo and your symptoms etc..


Thank you so much for the welcome and concern. I really appreciate that.

Well, it's too late for now- I already took another one a half-hour ago, so I will see what happens. If it happens again this time, I'm going to quit it. I currently have had allergies for about 10 years (the whole year, too, even though they have always just chalked it up to being "seasonal"). My current doctor said he's going to test me to find out what exactly I'm allergic to when I have my next blood test. I always react in ways most "normal" people don't medically speaking and even my symptoms are extensive and atypical so who knows...


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## northernlite

My apologies, MDguy no intent to insult. I have three kids right around your age and I love to see young people living the life they are intended to live. I watched my two brothers with the same medical conditions in their 20's take various approaches to their health. The more positive, less worrisome one is much healthier now 30 years later. So that was my only intention in my message.

I have a strong belief in the mind body connection. I have many medical conditions myself and although I can't control them with my mind but I can control the way I view them and have an impact on the way I view life and my health.

Again, my sincerest apology to you. I'll stay off your threads and won't bother you again.


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## Andros

MDguy99 said:


> Thank you so much for the welcome and concern. I really appreciate that.
> 
> Well, it's too late for now- I already took another one a half-hour ago, so I will see what happens. If it happens again this time, I'm going to quit it. I currently have had allergies for about 10 years (the whole year, too, even though they have always just chalked it up to being "seasonal"). My current doctor said he's going to test me to find out what exactly I'm allergic to when I have my next blood test. I always react in ways most "normal" people don't medically speaking and even my symptoms are extensive and atypical so who knows...


This is not unusual for a person who has autoimmune ( am assuming your thyroid disease is autoimmune and you have had antibodies' tests?)

After all; it is your body attacking itself. So......................a big resounding YES on the allergic reactions.

I thing Armour would be a very good consideration here and as a matter of fact, allergies are one of two reasons I am on it.

Synthroid and Levoxyl made me horribly sick.

My humble opinion is to not push this any further and I personally will be waiting to hear what if anything is taking place on this second dose.

I hope you have someone on standby and if for any reason you feel "funny"; get to the ER...........................

What a mess.


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## MDguy99

Andros said:


> This is not unusual for a person who has autoimmune ( am assuming your thyroid disease is autoimmune and you have had antibodies' tests?)


I have no idea. I was just told through my rheumatological blood work that I have hypothyroidism and low vitamin D. No one ever mentioned anything about it being autoimmune, but that wouldn't surprise me.



Andros said:


> My humble opinion is to not push this any further and I personally will be waiting to hear what if anything is taking place on this second dose.
> 
> I hope you have someone on standby and if for any reason you feel "funny"; get to the ER...........................
> 
> What a mess.


Thanks again for the concern. LUCKILY I have not had the reaction today. My mouth was just a bit dry an hour after the dose, but now everything is normal. Perhaps it was just my body adjusting? Either way, I feel as I normally do today, no better or worse. If anything comes about again, I'm going to stop it and demand a switch in medication, and I'll post back again. Hopefully that won' t be the case. What a bizarre situation!


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## lainey

If you are reacting to anything, chances are it is the fillers or binders in the pill, not the actual T4 medication itself.

I strongly recommend you take a brand name--either Synthroid or Levoxyl. Each time you fill a prescription for a generic medication, the manufacturer--and the fillers and binders--can be different. There are several different levothyroxine manufacturers, but if you take a brand, you will get the same medication each time you fill it.

If you are worried about insurance paying for it, forget Armour. Even most branded thyroid medication is not in many insurance company formularies, and Armour isn't considered standard treatment. However, thyroid medication is relatively cheap. I pay about $20 for a months' supply of my dose, which is higher than yours.


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## Andros

MDguy99 said:


> I have no idea. I was just told through my rheumatological blood work that I have hypothyroidism and low vitamin D. No one ever mentioned anything about it being autoimmune, but that wouldn't surprise me.
> 
> Thanks again for the concern. LUCKILY I have not had the reaction today. My mouth was just a bit dry an hour after the dose, but now everything is normal. Perhaps it was just my body adjusting? Either way, I feel as I normally do today, no better or worse. If anything comes about again, I'm going to stop it and demand a switch in medication, and I'll post back again. Hopefully that won' t be the case. What a bizarre situation!


In the meantime; you may wish to consider requesting these tests.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

And if you wish to pursue this further on this board, please get copies of your labs and post the results with the ranges. I know that I personally would like to have a look. Ranges are important as different labs use different ranges.


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## MDguy99

I appreciate the help, but I am not sure that I feel comfortable bringing a list that long and making the doctor feel like I am "stepping on his toes" so to speak. I think I may let him test for what he deems necessary this first blood test coming in 6 weeks, and I will look and see what on that list he didn't include and ask for it the next time. As far as the name-brand medication goes, I really cannot even afford the $20/ month at this time because I am unemployed and am on my father's plan, in which I have to get generic (if it is available) and they only wind up costing me $1. I assume that if I stick with the same generic "brand" from the same pharmacy that it won't vary all that much to make a difference.


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## Andros

MDguy99 said:


> I appreciate the help, but I am not sure that I feel comfortable bringing a list that long and making the doctor feel like I am "stepping on his toes" so to speak. I think I may let him test for what he deems necessary this first blood test coming in 6 weeks, and I will look and see what on that list he didn't include and ask for it the next time. As far as the name-brand medication goes, I really cannot even afford the $20/ month at this time because I am unemployed and am on my father's plan, in which I have to get generic (if it is available) and they only wind up costing me $1. I assume that if I stick with the same generic "brand" from the same pharmacy that it won't vary all that much to make a difference.


That is a very very good approach. I agree. It could be this doc will run all these tests which would be a wonderful surprise.

I am always in favor of "soft shoeing" it! Sure don't want to put anyone on the defensive.

Good game plan.

And w/the meds? You just have to do what you have to do. I have been there many a time and will be there many times more.

Definitely "understood!"


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## MDguy99

Andros said:


> That is a very very good approach. I agree. It could be this doc will run all these tests which would be a wonderful surprise.
> 
> I am always in favor of "soft shoeing" it! Sure don't want to put anyone on the defensive.
> 
> Good game plan.
> 
> And w/the meds? You just have to do what you have to do. I have been there many a time and will be there many times more.
> 
> Definitely "understood!"


Yes, you're right! Thanks for all of the good advice. I will be researching more with that list and website. It's a slow process trying to absorb all of the information because of the sheer volume and the fact that sometimes I read conflicting information online. Before last week, I truly had no knowledge about the thyroid, to be honest.

In fact, when my father mentioned to our neighbor that I had hypothyroidism, he told him that guys don't have a thyroid, just an Adam's apple - and he has a doctorate... and is a substance abuse counselor! It's scary to think that they don't teach this in those types of fields because of its psychological implications. He is in his 70s, so I'm just hoping he was having a lapse of memory lol.


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## Andros

MDguy99 said:


> Yes, you're right! Thanks for all of the good advice. I will be researching more with that list and website. It's a slow process trying to absorb all of the information because of the sheer volume and the fact that sometimes I read conflicting information online. Before last week, I truly had no knowledge about the thyroid, to be honest.
> 
> In fact, when my father mentioned to our neighbor that I had hypothyroidism, he told him that guys don't have a thyroid, just an Adam's apple - and he has a doctorate... and is a substance abuse counselor! It's scary to think that they don't teach this in those types of fields because of its psychological implications. He is in his 70s, so I'm just hoping he was having a lapse of memory lol.


Poor ol' guy; maybe he is having a memory lapse!

You like to research? Here is a very credible site for you!

http://www.thyroidmanager.org/ (Have a blast!)

Please keep us in the loop. Will be anxious to hear all about your thyroid journey!

Did you take your 3rd. dose today and are you okay?


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## MDguy99

Andros said:


> Poor ol' guy; maybe he is having a memory lapse!
> 
> You like to research? Here is a very credible site for you!
> 
> http://www.thyroidmanager.org/ (Have a blast!)
> 
> Please keep us in the loop. Will be anxious to hear all about your thyroid journey!
> 
> Did you take your 3rd. dose today and are you okay?


Thanks for the site! The amount of info is truly overwhelming, but I will take it slow. I've taken all normally-scheduled doses since my original post and everything has went without problems.


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## Andros

MDguy99 said:


> Thanks for the site! The amount of info is truly overwhelming, but I will take it slow. I've taken all normally-scheduled doses since my original post and everything has went without problems.


Problem-free is what we like to hear!! Glad you like the site. I sure don't pretend to understand every little thing but I have learned a lot from that site.

Keep us in the loop!


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## MDguy99

Just an update:

Have been taking my dosages as scheduled- however, I'm still feeling as bad as I was before the medication. No change... yet at least.

Today, while trying to take the pill, apparently it got stuck to my tongue and expanded IN my mouth and came apart while I was trying to drink water. Some went down, but much of it I just had to spit out because it was cottony. This is the second time it's happened. Is it okay to take this pill in a small spoon of applesauce- so it doesn't stick to my tongue or expand in my mouth? I know "no food", but it's hard to believe this would have much of an effect. Does anybody know? Thank you.


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## Andros

MDguy99 said:


> Just an update:
> 
> Have been taking my dosages as scheduled- however, I'm still feeling as bad as I was before the medication. No change... yet at least.
> 
> Today, while trying to take the pill, apparently it got stuck to my tongue and expanded IN my mouth and came apart while I was trying to drink water. Some went down, but much of it I just had to spit out because it was cottony. This is the second time it's happened. Is it okay to take this pill in a small spoon of applesauce- so it doesn't stick to my tongue or expand in my mouth? I know "no food", but it's hard to believe this would have much of an effect. Does anybody know? Thank you.


Of course that is okay and as a matter of fact,that is a very neato idea!!

So,no improvement in how you feel? When do you go in for labs? It takes about 8 weeks for Levothyroxine (T4) to build up in your system.


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## MDguy99

Andros said:


> Of course that is okay and as a matter of fact,that is a very neato idea!!
> 
> So,no improvement in how you feel? When do you go in for labs? It takes about 8 weeks for Levothyroxine (T4) to build up in your system.


Thank you Ms. Andros - I did it this morning! I also called and spoke to two pharmacists- one seemed confused, looked and saw "do not take with food" and immediately told me it may affect absorption. The other one went and actually found a study that said it is fine to even crush the pill and put it in some water, or have it with "soft cereal" or a bit of _applesauce_.

Yes, no improvement -- but like I said before my symptoms are a wide range and who knows what can be attributed to the hypo and what is something else. That's a good question about the labs- I think it will be about a month from today, give or take a couple of days. I'm sure it will take a while because I always wind up needing a stronger dosage of anything I take for it to actually work- including pain meds. When I took hydrocodone after a surgery, it didn't do a thing but make me sleepy lol.


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## Andros

MDguy99 said:


> Thank you Ms. Andros - I did it this morning! I also called and spoke to two pharmacists- one seemed confused, looked and saw "do not take with food" and immediately told me it may affect absorption. The other one went and actually found a study that said it is fine to even crush the pill and put it in some water, or have it with "soft cereal" or a bit of _applesauce_.
> 
> Yes, no improvement -- but like I said before my symptoms are a wide range and who knows what can be attributed to the hypo and what is something else. That's a good question about the labs- I think it will be about a month from today, give or take a couple of days. I'm sure it will take a while because I always wind up needing a stronger dosage of anything I take for it to actually work- including pain meds. When I took hydrocodone after a surgery, it didn't do a thing but make me sleepy lol.


Unfortunately, titration should be slow by small incements. It is vitally important to find the place that is euthyroid for you. If one goes too fast with too much, you can just sail past the euthyroid spot and nothing is gained. You have to start all over again.

We will have to remember the "applesauce trick" for others who come along w/ the same problem.

Good to hear from you!


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## MDguy99

You're right- I need patience to get to euthyroid! It seems it's been longer than it actually has.

& Yes, I hope this is helpful for another person, although I consider myself a "medical weirdo" because the most bizarre crap only seems to occur to me : P

Have a good Wednesday ("happy" Ash Wednesday to those who are Catholic) and I hope everyone is doing well in their thyroid battle!


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## McKenna

The applesauce sounds like a good trick! Great tip! 
I read a post on another board of someone crushing her Armour and taking it on a spoonful of honey. It's good to know there are alternatives.


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## Andros

MDguy99 said:


> You're right- I need patience to get to euthyroid! It seems it's been longer than it actually has.
> 
> & Yes, I hope this is helpful for another person, although I consider myself a "medical weirdo" because the most bizarre crap only seems to occur to me : P
> 
> Have a good Wednesday ("happy" Ash Wednesday to those who are Catholic) and I hope everyone is doing well in their thyroid battle!


Thank you for the Happy Ash Wednesday!!


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## Catie516

MDguy99 said:


> Thank you both so much.
> 
> Yes, I am contemplating a switch in doctors, but I have also thought of the Synthoid and I am afraid my insurance may not cover it. Perhaps if I tell them I have an adverse reaction to this, they will


Hi, I'm new too, and not sure if I have the credibility or knowledge to comment on anything EXCEPT that I know that Levothyroxine (at least at the 25 level) is super cheap- even if insurance won't cover it, it's less than a nice dinner in town (or even a fill up of gas) for a 90 day supply - and that is at a grocery store. I've heard Walmart is even cheaper. Hope this helps???

I also had a dry mouth when I first started taking it - seems to have gone away.


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## MDguy99

Well, I've posted another thread that I guess is somewhat of an "update". I'll be going back to the doctor next week.

http://www.thyroidboards.com/showthread.php?t=2974


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## Nova

I don't think your age has anything to do with your reported symptoms either - I agree with Andros, find a doc who cares about what you are telling them - remember, you pay them which is what keeps them in business - period. They provide you with their experience and knowledge and if they become condescending, ignore your feelings or reported symptoms - they are no longer being helpful = fired (my opinion!!). You deserve to be treated with respect and it's not unheard of for a doc to make a mistake and it to cost a patient...hello malpractice. I can attest to having been treated poorly at times by docs but not for long! Take care of yourself and advocate for yourself. I have not had the swelling (makes me think too you may have a reaction of some kind going on?) but I have experienced the pain in the thyroid area - especially when my thyroid levels are too low (I had RAI not removal/surgery). I've learned to up my dose a little next time around and that helps me and my specialist agrees this is totally fine in the grand scheme...good luck, I hope you find a more professional doc soon.


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## MDguy99

Nova said:


> I don't think your age has anything to do with your reported symptoms either - I agree with Andros, find a doc who cares about what you are telling them - remember, you pay them which is what keeps them in business - period. They provide you with their experience and knowledge and if they become condescending, ignore your feelings or reported symptoms - they are no longer being helpful = fired (my opinion!!). You deserve to be treated with respect and it's not unheard of for a doc to make a mistake and it to cost a patient...hello malpractice. I can attest to having been treated poorly at times by docs but not for long! Take care of yourself and advocate for yourself. I have not had the swelling (makes me think too you may have a reaction of some kind going on?) but I have experienced the pain in the thyroid area - especially when my thyroid levels are too low (I had RAI not removal/surgery). I've learned to up my dose a little next time around and that helps me and my specialist agrees this is totally fine in the grand scheme...good luck, I hope you find a more professional doc soon.


Well, I found out that it was because the week prior and the night before taking my first dose, I had used plenty of steroid nose spray for my sinuses. It must've dripped down my throat and interacted with the levothyroxine. I stopped the spray and have been totally fine as far as taking the Levo.

I just had another arsenal of bloodwork on Friday and the doctor left me a message saying the thyroid levels are now normal but he wants to continue the Levo. Not sure if that's a good idea because it seems my plethora of symptoms really are not coming from the thyroid at all, as I explained in my other thread. It seems my male pattern baldness has increased dramatically since taking it. We'll see.

Was tested for allergies in the bloodwork and they found out I am allergic to:
Milk, sesame seeds, grass, and pollen. I knew about the grass and pollen- no allergy meds have ever helped me with that so I just deal with it. I was shocked by milk. Really? I drink it constantly and love dairy products and cheese. Now I will be cutting it out to see if it helps some of my symptoms.

Tomorrow I have an ultrasound of my stomach and gallbladder to rule out gallstones. Friday I have an endoscopy and colonoscopy scheduled because of my bowel habits and blood in the stool. Hopefully more updates to come .... and hopefully a conclusion with a solution!


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## Andros

MDguy99 said:


> Well, I found out that it was because the week prior and the night before taking my first dose, I had used plenty of steroid nose spray for my sinuses. It must've dripped down my throat and interacted with the levothyroxine. I stopped the spray and have been totally fine as far as taking the Levo.
> 
> I just had another arsenal of bloodwork on Friday and the doctor left me a message saying the thyroid levels are now normal but he wants to continue the Levo. Not sure if that's a good idea because it seems my plethora of symptoms really are not coming from the thyroid at all, as I explained in my other thread. It seems my male pattern baldness has increased dramatically since taking it. We'll see.
> 
> Was tested for allergies in the bloodwork and they found out I am allergic to:
> Milk, sesame seeds, grass, and pollen. I knew about the grass and pollen- no allergy meds have ever helped me with that so I just deal with it. I was shocked by milk. Really? I drink it constantly and love dairy products and cheese. Now I will be cutting it out to see if it helps some of my symptoms.
> 
> Tomorrow I have an ultrasound of my stomach and gallbladder to rule out gallstones. Friday I have an endoscopy and colonoscopy scheduled because of my bowel habits and blood in the stool. Hopefully more updates to come .... and hopefully a conclusion with a solution!


It is said that, "The very thing you enjoy eating the most is something that you are probably very allergic to."

Did you not get a copy of your thyroid labs and ranges? We would love to see them.

You may be in range but may not be where you should be in that range.


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## MDguy99

Andros said:


> It is said that, "The very thing you enjoy eating the most is something that you are probably very allergic to."
> 
> Did you not get a copy of your thyroid labs and ranges? We would love to see them.
> 
> You may be in range but may not be where you should be in that range.


This is driving me insane. My family bought some Almond Milk for me from the grocery store only to realize later through internet research that it is horrible for hypothyroid people

http://www.ehow.com/facts_5572252_dangers-almond-milk.html

And, of course, so is soy. I'm not particularly fond of soy anyway. They don't sell Rice Milk in my area so I really have no other alternative. I guess it is no more cereal or any recipes at all that require milk or cheese and calcium / vitamin D supplements for me. At least I found a dairy-free butter spread... but even that has soy. God this sucks. The doctors have no idea whether or not any of these allergies or the hypothyroidism are causing my symptoms. I suspect not... at least for the thyroid. I really don't think my problems are thyroid related. I am still leaning toward a lymphatic, circulatory or pancreatic problem.

I don't have a copy of the blood tests yet. Maybe next week. Going for my ultrasound tomorrow.


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## Andros

MDguy99 said:


> This is driving me insane. My family bought some Almond Milk for me from the grocery store only to realize later through internet research that it is horrible for hypothyroid people
> 
> http://www.ehow.com/facts_5572252_dangers-almond-milk.html
> 
> And, of course, so is soy. I'm not particularly fond of soy anyway. They don't sell Rice Milk in my area so I really have no other alternative. I guess it is no more cereal or any recipes at all that require milk or cheese and calcium / vitamin D supplements for me. At least I found a dairy-free butter spread... but even that has soy. God this sucks. The doctors have no idea whether or not any of these allergies or the hypothyroidism are causing my symptoms. I suspect not... at least for the thyroid. I really don't think my problems are thyroid related. I am still leaning toward a lymphatic, circulatory or pancreatic problem.
> 
> I don't have a copy of the blood tests yet. Maybe next week. Going for my ultrasound tomorrow.


Sure will be interested in those ultra-sound results. Good luck tomorrow!


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## MDguy99

Andros said:


> Sure will be interested in those ultra-sound results. Good luck tomorrow!


Me too! Had the ultrasound. No results yet.

Stopped by my family doctor's and managed to get a copy of my blood work from the secretary.

I have a Moderate allergy to dust mites, a High allergy to Timothy grass and pollen, a Low allergy to sesame seeds, and a moderate allergy to milk.

Cholesterol 184
T4 Free - 1.7
TSH - 0.64 (down from 5.something last time... so that's a big drop... which is good)
T3 Total - 126

As far as the pancreas:
Amylapse, Serum - 47 (21-101 is the normal range)
Lipase, Serum - 7 (1-60 is the normal range.... seems I'm border low on that)

If anyone is curious about anything else, I've got it on hand just let me know.

Doesn't sound like any devastating news... except I don't have much answers for anything. Thyroid seems to be okay, nothing else really sticks out. I've avoided my allergens and everything is the same, I still feel like crap. I await the ultrasound results and I get a colonoscopy and endoscopy Friday... fun : / I'm kinda missing my cheese, but I can still have Chick-Fil-A so that's good : )


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## Andros

MDguy99 said:


> Me too! Had the ultrasound. No results yet.
> 
> Stopped by my family doctor's and managed to get a copy of my blood work from the secretary.
> 
> I have a Moderate allergy to dust mites, a High allergy to Timothy grass and pollen, a Low allergy to sesame seeds, and a moderate allergy to milk.
> 
> Cholesterol 184
> T4 Free - 1.7
> TSH - 0.64 (down from 5.something last time... so that's a big drop... which is good)
> T3 Total - 126
> 
> As far as the pancreas:
> Amylapse, Serum - 47 (21-101 is the normal range)
> Lipase, Serum - 7 (1-60 is the normal range.... seems I'm border low on that)
> 
> If anyone is curious about anything else, I've got it on hand just let me know.
> 
> Doesn't sound like any devastating news... except I don't have much answers for anything. Thyroid seems to be okay, nothing else really sticks out. I've avoided my allergens and everything is the same, I still feel like crap. I await the ultrasound results and I get a colonoscopy and endoscopy Friday... fun : / I'm kinda missing my cheese, but I can still have Chick-Fil-A so that's good : )


It is good that your lipase is low. Very good. If it were high, that would mean the pancreas is damaged. So, I am glad.

http://www.nlm.nih.gov/medlineplus/ency/article/003465.htm

Your cholesterol is outstanding. Mine is always 200 or less. And that requires a lot of effort on my part. LOL!!

The Levoxyl is working. Was the doctor pleased? Your TSH came right down.


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## CA-Lynn

Stick with the thyroid medication. The reason your thyroid tests are in the normal range is because of the medication you've been taking.


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## MDguy99

CA-Lynn said:


> Stick with the thyroid medication. The reason your thyroid tests are in the normal range is because of the medication you've been taking.


Yeah, well the thing is- I don't think I've ever had symptoms of hypothyroidism. I've read only treat it when you have symptoms. I may ween off of it one day- the only thing its done for me is make me loose my hair faster. I'll give it a few months

Yes, Andros- he was happy with that, but I still think nothing that's going on with me has anything to do with the thyroid.


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## CA-Lynn

Some of us don't have any symptoms. But we still take the medication.

In my case, I had a symptomless neuroendocrine problem. During the course of testing, the neurologist ran some thyroid tests. Voila! Abnormal results. I think that if I had NOT started treatment I would have been headed for all kinds of problems.

It's a simple pill.


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## MDguy99

CA-Lynn said:


> Some of us don't have any symptoms. But we still take the medication.
> 
> In my case, I had a symptomless neuroendocrine problem. During the course of testing, the neurologist ran some thyroid tests. Voila! Abnormal results. I think that if I had NOT started treatment I would have been headed for all kinds of problems.
> 
> It's a simple pill.


I understand that- i respect your choice. But I'd rather not have to take a pill every day for the rest of my life if I have no symptoms or relief from it. If I come off and it skyrockets and causes me symptoms, sure I'll go back on - obviously it's been effective lowering my numbers, but numbers don't mean anything to me. If I had 10.0 TSH and felt great, I wouldn't take the pill. If I hadn't been tested I never would have known- neither would anyone else. Nobody in my family's been tested for it besides me. The pill's not doing anything for me except lowering some number I never even knew existed for nearly a quarter century. Anybody who has proven symptoms related to this should be taking the pill, but it seems I've got bigger health fish to fry and I probably shouldn't have even bothered with the thyroid in the first place.


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## Andros

MDguy99 said:


> Yeah, well the thing is- I don't think I've ever had symptoms of hypothyroidism. I've read only treat it when you have symptoms. I may ween off of it one day- the only thing its done for me is make me loose my hair faster. I'll give it a few months
> 
> Yes, Andros- he was happy with that, but I still think nothing that's going on with me has anything to do with the thyroid.


The only thing I know to say is to listen to your "inner doctor!" It's your body, you have been in it for a quarter of a century so your instincts are very important.

Just take care of yourself best you can, use common sense and take one day at a time. I know you have other issues. It can be overwhelming at best and devastating at worst.

I have you in my prayers.


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## MDguy99

Andros said:


> I have you in my prayers.


Thank you - I need this and I appreciate it! Woke up this morning with severe pain and neuropathy - I'm now mixing my "Gavilyte" jug for my procedure tomorrow. I can't wait until this is all over! At best, when they do find out what's wrong with me, hopefully it can make other people on here aware in case there's a correlation with thyroid function


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## Andros

MDguy99 said:


> Thank you - I need this and I appreciate it! Woke up this morning with severe pain and neuropathy - I'm now mixing my "Gavilyte" jug for my procedure tomorrow. I can't wait until this is all over! At best, when they do find out what's wrong with me, hopefully it can make other people on here aware in case there's a correlation with thyroid function


Yeah..........................what time is the procedure tomorrow? And yes, your postings will no doubt help others. That is what is so nice about having a communal board.


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## MDguy99

Andros said:


> Yeah..........................what time is the procedure tomorrow? And yes, your postings will no doubt help others. That is what is so nice about having a communal board.


Getting ready now- procedure's at 12:30. People say the prep was the worst part of this - if so, I'm in luck because I drank the whole jug and lived to tell the tale ; ) Updates later if I'm not nauseous from the anesthesia or napping from the 30 minutes of sleep I got last night


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## Andros

MDguy99 said:


> Getting ready now- procedure's at 12:30. People say the prep was the worst part of this - if so, I'm in luck because I drank the whole jug and lived to tell the tale ; ) Updates later if I'm not nauseous from the anesthesia or napping from the 30 minutes of sleep I got last night


Bless your heart!! I sure hope the outcome is very very good news! And I do hope you get some sleep tonight. This has to have been a most harrowing experience.

Take care and we will hear from you when you are up to it. Rest first.


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## MDguy99

Andros said:


> Bless your heart!! I sure hope the outcome is very very good news! And I do hope you get some sleep tonight. This has to have been a most harrowing experience.
> 
> Take care and we will hear from you when you are up to it. Rest first.


Hi- couldn't leave you hanging! Had the procedures today and they went without a hitch- was out of it just like a restful sleep and then it was over. I never had an anesthetic experience that good- no twilight, no weird dreams, no nausea. I was really blessed for all of that.

Bottom line with everything - they still don't know what is causing ALL of my symptoms.

Colonoscopy results: Biopsies taken all over colon and ilieum- for microscopic colitis - will find out results in a week. He also saw some internal hemmoroids. He has guessed that these plus the milk allergy were the cause of my blood in the stool.

Esophagogastroduodenoscopy results: Some inflammation of the lining of the stomach - "mild gastritis". Not sure why no biopsies were taken from that... that's all there is to that one.

I'll have a followup in one month and will get into detail with questions then. It will also give me some time to implement a non-dairy, high fiber diet to see if that alleviates any symptoms.

Preliminary ultrasound results show no abnormalities with the gallbladder- both doctors still have to review it and I have yet to receive my copy.

So, here I am, feeling the same as ever (not so hot) - with not much of an explanation, but with some things ruled out. I'm not sure what to make of this- but at least the procedures are over (for now!)

Thanks for listening!

P.S. I am not overly tired- I guess that deep sedation nap I had did the trick! :winking0001:


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## Andros

MDguy99 said:


> Hi- couldn't leave you hanging! Had the procedures today and they went without a hitch- was out of it just like a restful sleep and then it was over. I never had an anesthetic experience that good- no twilight, no weird dreams, no nausea. I was really blessed for all of that.
> 
> Bottom line with everything - they still don't know what is causing ALL of my symptoms.
> 
> Colonoscopy results: Biopsies taken all over colon and ilieum- for microscopic colitis - will find out results in a week. He also saw some internal hemmoroids. He has guessed that these plus the milk allergy were the cause of my blood in the stool.
> 
> Esophagogastroduodenoscopy results: Some inflammation of the lining of the stomach - "mild gastritis". Not sure why no biopsies were taken from that... that's all there is to that one.
> 
> I'll have a followup in one month and will get into detail with questions then. It will also give me some time to implement a non-dairy, high fiber diet to see if that alleviates any symptoms.
> 
> Preliminary ultrasound results show no abnormalities with the gallbladder- both doctors still have to review it and I have yet to receive my copy.
> 
> So, here I am, feeling the same as ever (not so hot) - with not much of an explanation, but with some things ruled out. I'm not sure what to make of this- but at least the procedures are over (for now!)
> 
> Thanks for listening!
> 
> P.S. I am not overly tired- I guess that deep sedation nap I had did the trick! :winking0001:


You sound wonderful and at the outset, I would say there is good news for the most part. Maybe some niggling little thing. But I hope even not that.

Holy cats! Esophagogastroduodenoscopy; that is one huge word!!

There is nothing like a good restful sleep! Thank goodness for small blessings!

Will be waiting with bated breath for the results and I hope and pray it's all good news.


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## Chromatic

Just wanted to throw a few things out there from this thread.

1) wanted to reiterate that your levels are in range because of your treatment of the thyroid. This is important.

2) When overtly hypo or hyperthyroid it is important to treat it even if symptoms are on the mild side.

Treatment of any kind is of course a personal decision and you have every right to stop, wean off, or continue. Just medically and scientifically it is fairly universal to continue. Would be interesting to know your antibodies as this would likely provide further clues into your overall immunology, auto.

3) You mention that your androgenic alopecia is on the increase with thyroid treatment. -- Thyroid disorder is known to cause hair loss, for a variety of reasons -- and hair growth is highly tied to metabolic process, and inflammatory process.

Your increased loss could very well be some of the hair shifting phases and "shedding" due to the treatment of the thyroid. If this is the case over time (say 4-6 months) you should see that hair grow back,.. it isn't gone for good. While MPB can be accelerated, it generally is determined solely by genetics. So any health reasons that cause accelerated hair loss will generally not be permanent if they are resolved of course. Which is ultimately the case.

Point is the thyroid treatment, once in the proper range and all is settled (which my take more time and further testing) should not hurt your genetic predisposition to hair loss and really, frankly, only slow the process to normal levels had you been in perfect health to start with.

Good luck with your overall situation,..


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## MDguy99

Chromatic said:


> Treatment of any kind is of course a personal decision and you have every right to stop, wean off, or continue. Just medically and scientifically it is fairly universal to continue. Would be interesting to know your antibodies as this would likely provide further clues into your overall immunology, auto.


All of my doctors have said only treat if there are symptoms. I have an arsenal of symptoms not due to my thyroid. I've already dipped pretty low with the TSH and I feel worse than ever. I have many symptoms that a thyroid problem could never physically produce. Good thing I haven't settled for the crock excuse that everything is "because of the thyroid" ever since my hypo has been recognized. Because of my persistence and unwillingness to accept the thyroid as the explanation of every misery in my body, I have uncovered 4 allergies, bowel and stomach problems, and a vitamin D insufficiency among others. I may continue the pills- not that it'll do much for me. However, this is simply a distraction to be honest. It's the wrong avenue for me to peruse. It's said a fool does the same thing over and over and expects different results. I do not want to continue wasting my time with the thyroid- especially since it is now in normal range - I _know_ something else is causing my issues. I am just here updating until I find out what that "something" is in case there's a link to thyroid dysfunction so people here can look down that avenue. I sure wish other people would do that online. Every time I find a post online where someone starts describing symptoms that match mine, they go to get tested, and never come back to post the results or diagnosis.

I have had plenty of antibody tests - I have pages of bloodwork that you wouldn't believe. What do you want to know (include marker abbreviations because I obviously don't recognize every medical term used) because chances are they're in the tests?



Chromatic said:


> Your increased loss could very well be some of the hair shifting phases and "shedding" due to the treatment of the thyroid. If this is the case over time (say 4-6 months) you should see that hair grow back,.. it isn't gone for good. While MPB can be accelerated, it generally is determined solely by genetics. So any health reasons that cause accelerated hair loss will generally not be permanent if they are resolved of course. Which is ultimately the case.


The hair's not growing back- trust me, it's gone for good. I've been losing it for years and it is simply accelerating my male pattern baldness. I'm not losing it anywhere else. I'm losing it in the same pattern, only in the same areas, and in the same ways as before - only quicker. Not trying to make an argument- but this wasn't something up for debate - I know what's going on with my hair and I was just noting it to let people know. Of course, if it does grow back, that would be miraculous .... and, of course, a welcomed miracle at that



Chromatic said:


> Good luck with your overall situation,..


Thanks


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## MDguy99

Andros said:


> You sound wonderful and at the outset, I would say there is good news for the most part. Maybe some niggling little thing. But I hope even not that.
> 
> Holy cats! Esophagogastroduodenoscopy; that is one huge word!!
> 
> There is nothing like a good restful sleep! Thank goodness for small blessings!
> 
> Will be waiting with bated breath for the results and I hope and pray it's all good news.


Thanks again for your well wishes!


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## Andros

MDguy99 said:


> Thanks again for your well wishes!


Always and ever! Dealing w/multiple issues is never easy and pinpointing causes under these circumstances is a challenge at best.

As you already know, I am very interested in following your situation and I will continue to say prayers that the cause is found so that some of your issues can be resolved.

Looking forward to some test results next week; I hope?


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## MDguy99

Andros said:


> Always and ever! Dealing w/multiple issues is never easy and pinpointing causes under these circumstances is a challenge at best.
> 
> As you already know, I am very interested in following your situation and I will continue to say prayers that the cause is found so that some of your issues can be resolved.
> 
> Looking forward to some test results next week; I hope?


Thanks, Andros - I hope I am not annoying people with my updates, but I figure this can be useful for people later on. Once I figure out what is wrong in full, I will post a detailed list of symptoms and my medical history for people to follow if they match my situation. I should have all results of the biopsies by this coming Friday!


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## Andros

MDguy99 said:


> Thanks, Andros - I hope I am not annoying people with my updates, but I figure this can be useful for people later on. Once I figure out what is wrong in full, I will post a detailed list of symptoms and my medical history for people to follow if they match my situation. I should have all results of the biopsies by this coming Friday!


You don't annoy me, that is for sure and non-interested parties do not have to read your posts. Capiche'?

Ha, ha!!

I do believe that you are holding the interest of those who care and want to learn; let's put it that way.

Post away.


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