# My story and diagnosis



## DillonM86 (May 8, 2013)

Sorry I'm new here wrong thread, Mods please move to newbie forums. or delete it cause i don't know how to

Hello everyone! 
My Diagnosis:
I am 26 years old, I'm 6"1". I don't weigh myself often. In December I weighed myself after Christmas and then again after New Years and I weighed 190 lbs. I weighed myself again on January 15th and weighed 189 lbs. on April 5th my step-mom got me to weigh myself. She'd been nagging about it for a few weeks. Finally I did just to stop her nagging:tongue0013: I stepped on the digital scale and weighed 159lbs. I couldn't believe it so I take my clothes off to my boxers and step back on and I weigh 156lbs. I immediately call my doctor for a physical. I went in that day and got there by about a half hour before they closed at 4:30pm He takes my vitals and gives me paperwork to go to a blood lab that was in his building and X-ray paperwork for a lab that was about 15 minutes away, but they both closed by the time I got out of there. I started my first job in about 2 years that night at 8:00 pm. at a sport bar and grille. When I got to work I was moving pretty fast and learning it all quick. Right around 1:00am I started getting nauseous. At 1:20 I started getting a headache. At 1:50 I asked my boss if I could take a break. He looked at the counter and told me to finish up til their gone. I had about 20 dishes to go so I scrubbed them out and looked back and there were 30 more dishes. I started doing those and got to about the 3rd dish and I threw up in the sink. I was walking up to my boss and blacked out and fell to the ground. I woke up in a booth in the restaurant with a wet towel over my head. They asked if I needed and ambulance. I said no just give me some water and some crackers. I thought it might be just low blood sugar because I've had that before. In 30 minutes I'm in my car driving to the ER 5 minutes away. I still have my paperwork from my doctor, and the hospital happened to be in the same network as my doctor so that was lucky. I get in there, hand them the paperwork and they take my blood and put an IV in my arm, then send me in for a CT scan of my chest. They came back and said I had beginning Emphysema. I'm like wow that sucks. They say they don't have the results of the blood test yet but I could go home. They sent me home and I was feeling good after the IV. I stayed there overnight and they came in at 4:00pm the next day and I thought they said I had Hypothyroidism and gave me a prescription for Methimazole. They gave me a referral for and Endocrinologist. I made an appointment and went to see her the next day. I told her I had Hypothyroidism but she did her own tests because they couldn't find the results of my other test. They send me home and called me later in the day and said I have Hyperthyroid or Graves' disease. She told me to keep taking the meds and come see her in 1 month. I went back a month later and my levels were still 5x higher than they should've been, so they upped my dosage to 2 pills 2 times a day. I kept up with the times and a week after that I started breaking out with a bad rash all over my body, so I called her again and she saw me that day. Said I had an allergic reaction. Told me to stop taking them until the rash was completely gone and called in a prescription of Propylthiouracil. I picked them up 4 days later when the itching stopped. I don't know if this is right but the directions said two pills 3 times a day. I took it for 1 day 3 times and started itching again. There was no rash but every time I scratched I would get these white welt lines up and down my arms and legs from the scratching. I called her again in the beginning of this week and couldn't get a hold of them til today. So she says that I need to make a decision about Radioactive Iodine, or surgery. And that is my story. I'm about to post a question about that on a different thread. I'll keep you updated on my progress.


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## Octavia (Aug 1, 2011)

Dillon, welcome!

My guess is you misunderstood when they said hypothyroidism and prescribed Methimazole. That drug is for hypERthyroidism.

Emphysema? Based on what, exactly? I would ask for some follow-up tests on that diagnosis, seriously. (Translation: I have serious doubts.)

We have several members here who have decided between the radioactive iodine and surgery, and I'm sure they'll have some great insights to share with you. (I'm not one of them.)

In the meantime, (and I'll apologize in advance...) the smart aleck in me just couldn't help but want to say "maybe you're just allergic to work" when I read that you got sick your first day on the job! Sorry...I have a weird sense of humor. Please don't hold it against me. 

Welcome!


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## HotGrandma (Sep 21, 2012)

Octavia, come back and play nice.

Dillon, what mg of Methamozole were you first taking when you started with the itch? Methimazole does make you itch, specially if the dose was too high. This medication has a short life span and should be taked 3 times per day. It also takes a while to start working. I would visit proper dosing instructions with your doctor.

Do you have any results of the blood work done in the hospital? Please post them with ranges. Before you make any decisions the labs are important and to include antibodies. TSI, TSH receptor ab, Andros has the best list.


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## Octavia (Aug 1, 2011)

HG - so maybe the frequency was correct, but the dose was too high? (That would be easy to solve...maybe...) What you are saying makes sense to me. Of course, I have no personal experience at all with any anti-thyroid meds.


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## webster2 (May 19, 2011)

What dose of PTU are you on? Do you have any lab results that you can share? Were antibody tests run? TSI? TRab? TPO? It sounds like you are really hyper. Don't do anything strenuous right now, just take it easy. Andros will be along in the morning to help sort this out for you. If you have lab results, please post them with the ranges.


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## DillonM86 (May 8, 2013)

The Methimazole was 5mg and the second one was 25mg. can't get the results yet, their office is closed right now


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## HotGrandma (Sep 21, 2012)

Octavia did your friend leave? Cause I know where she went.

Here's how the Methimazole affected me. Low dose 5mg twice per day did nothing and on that dose for 4 months my labs got worse. Because the drug has such a short life it really needs to be taked 3 times per day.

10 mg three times per day dropped me into hypo hell in 2 months. The dose was too high and caused lots of reactions to include the itching. The difference should have been 3 times per day because of the drugs short life, not so much the mg but the frequency.

Basically if I would have followed the instructions of 3 times per day I wouldn't have needed the higher mg and possibly could have brought my levels into range in 6 months instead of 16 months. I believe this because I went from 10 mg 3 times per day to 5 mg three times per day and my labs were the same after a 50% dose reduction for 4 weeks. That dose was cut in half and the labs were the same after 8 weeks.

If I'm understanding what I've read. If the graves is caused by antibodies the ATD treats the thyroid and the antibodies don't like it. So it creates another battle in the body until the antibodies give up and leave the thyroid alone. Since I cannot afford a TT or have RAI I have investigated remisssion through ADT's. Studies show success can be achieved if on ATD's for at least 18 months and at the time of withdrawl from ADT the antibodies are not over limits. So here's the thing the antibodies are attacking the thyroid and the ATD's. Since we are dealing with hormone levels they arn't built over night but can be stored and released suddenly. So you need to start slow. Reving up the dose does not nessisitate an immediate decrese of levels it causes a bigger fight. My Doc calls the ATD's poision and that's why the side effects.


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## DillonM86 (May 8, 2013)

Ok I went to my health insurance website and these are all the tests they did. The results from my Endo are not on there yet.

*Name:* * Result* *Range*
Monocytes,% 6 0
Eosinophils,% 2 0
Rbc Morphology 0 0
Wbc 4.3	3.8 10.8
Total Neutrophils,% 35 38
Total Lymphocytes,% 57 15
Platelet Sufficiency 0 0
Eosinophils,Absolute 86 15
Monocytes,Absolute 258 200
Neutrophils,Absolute 1505 1500
Lymphocytes,Absolute 2451 850	
Tsh 0 0.4
Total Neutrophils,% 28 38
Total Lymphocytes,% 57 15
Monocytes,% 13 0	
T4,Free 3.4 0.8
T3,Free 16.2 2.3
Wbc 4 3.8


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## HotGrandma (Sep 21, 2012)

Dillon could you also post ranges. Differnt labs have different measurements so its important to know the level and range. Example T3 Free 5.5 (2.18-3.98) would be high


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## DillonM86 (May 8, 2013)

Yeah they got the ranges, didn't know it was necessary. sorry this is all too new and confusing for me.

Name Result Range Range High
Monocytes,% 6 0 13
Eosinophils,% 2 0 8
Rbc Morphology 0 0 0
Wbc 4.3 3.8 10.8
Total Neutrophils,% 35 38 80
Total Lymphocytes,% 57 15 49
Platelet Sufficiency 0 0 0
Eosinophils,Absolute 86 15 500
Monocytes,Absolute 258 200 950
Neutrophils,Absolute 1505	1500 7800
Lymphocytes,Absolute 2451 850 3900
Tsh 0 0.4 4.5
Total Neutrophils,% 28 38 80
Total Lymphocytes,% 57 15 49
Monocytes,% 13 0 13
T4,Free 3.4 0.8 1.8
T3,Free 16.2 2.3 4.2


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## Andros (Aug 26, 2009)

DillonM86 said:


> Sorry I'm new here wrong thread, Mods please move to newbie forums. or delete it cause i don't know how to
> 
> Hello everyone!
> My Diagnosis:
> I am 26 years old, I'm 6"1". I don't weigh myself often. In December I weighed myself after Christmas and then again after New Years and I weighed 190 lbs. I weighed myself again on January 15th and weighed 189 lbs. on April 5th my step-mom got me to weigh myself. She'd been nagging about it for a few weeks. Finally I did just to stop her nagging:tongue0013: I stepped on the digital scale and weighed 159lbs. I couldn't believe it so I take my clothes off to my boxers and step back on and I weigh 156lbs. I immediately call my doctor for a physical. I went in that day and got there by about a half hour before they closed at 4:30pm He takes my vitals and gives me paperwork to go to a blood lab that was in his building and X-ray paperwork for a lab that was about 15 minutes away, but they both closed by the time I got out of there. I started my first job in about 2 years that night at 8:00 pm. at a sport bar and grille. When I got to work I was moving pretty fast and learning it all quick. Right around 1:00am I started getting nauseous. At 1:20 I started getting a headache. At 1:50 I asked my boss if I could take a break. He looked at the counter and told me to finish up til their gone. I had about 20 dishes to go so I scrubbed them out and looked back and there were 30 more dishes. I started doing those and got to about the 3rd dish and I threw up in the sink. I was walking up to my boss and blacked out and fell to the ground. I woke up in a booth in the restaurant with a wet towel over my head. They asked if I needed and ambulance. I said no just give me some water and some crackers. I thought it might be just low blood sugar because I've had that before. In 30 minutes I'm in my car driving to the ER 5 minutes away. I still have my paperwork from my doctor, and the hospital happened to be in the same network as my doctor so that was lucky. I get in there, hand them the paperwork and they take my blood and put an IV in my arm, then send me in for a CT scan of my chest. They came back and said I had beginning Emphysema. I'm like wow that sucks. They say they don't have the results of the blood test yet but I could go home. They sent me home and I was feeling good after the IV. I stayed there overnight and they came in at 4:00pm the next day and I thought they said I had Hypothyroidism and gave me a prescription for Methimazole. They gave me a referral for and Endocrinologist. I made an appointment and went to see her the next day. I told her I had Hypothyroidism but she did her own tests because they couldn't find the results of my other test. They send me home and called me later in the day and said I have Hyperthyroid or Graves' disease. She told me to keep taking the meds and come see her in 1 month. I went back a month later and my levels were still 5x higher than they should've been, so they upped my dosage to 2 pills 2 times a day. I kept up with the times and a week after that I started breaking out with a bad rash all over my body, so I called her again and she saw me that day. Said I had an allergic reaction. Told me to stop taking them until the rash was completely gone and called in a prescription of Propylthiouracil. I picked them up 4 days later when the itching stopped. I don't know if this is right but the directions said two pills 3 times a day. I took it for 1 day 3 times and started itching again. There was no rash but every time I scratched I would get these white welt lines up and down my arms and legs from the scratching. I called her again in the beginning of this week and couldn't get a hold of them til today. So she says that I need to make a decision about Radioactive Iodine, or surgery. And that is my story. I'm about to post a question about that on a different thread. I'll keep you updated on my progress.












Holy cats!! Sometimes the person is so thyrotoxic that that is what causes the itching and the rash. It is not always the anti-thyroid med but it sometimes is that too.

I suspect you are very thyrotoxic. And my personal opinion is that your doctor is right in the advice she has given you.

However, it woulld be good to get RAIU (radioactive uptake) or an ultra-sound to make sure you don't have cancer of the thyroid. You don't want to decide on RAI w/o knowing this. No matter how you cut the cake, surgery may be your better option.

Let's see what others have to say............................


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## Andros (Aug 26, 2009)

DillonM86 said:


> Yeah they got the ranges, didn't know it was necessary. sorry this is all too new and confusing for me.
> 
> Name Result Range Range High
> Monocytes,% 6 0 13
> ...


You really are hyperthyroid as evidenced by the FREE T3. I doubt if anti-thyroid meds would be much help.

Did your doc put you on a beta-blocker to protect your heart? And I really do think you should have RAIU for more than one reason, the other being it would be nice to know the rate of uptake.

The other thing; surgery may be your best option no matter what for when the person is in advanced hyperthyroid, one treatment of RAI does not seem to knock it out. I had to have RAI 3 times.


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## Octavia (Aug 1, 2011)

Dillon, if I'm reading your results right (your number, low end of range, high end of range), you are VERY, VERY hyperthyroid. And that can be dangerous.

If you are looking to solve this quickly, I have to say I agree with Andros...surgery to remove your thyroid would likely be your best bet. With those lab results as well as your symptoms, I definitely feel a sense of urgency, and RAI can often take months to get your thyroid levels back into normal range.

I would love for others to comment on this, because I am not an expert when it comes to hyperthyroid-related issues... I believe you will have to get your thyroid levels significantly lower in order to have surgery, simply because there's a risk that your thyroid tissue will "dump" its remaining hormone when it is disturbed during surgery, and that can put you at extreme risk. Please...others...what do you know about this?


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## JPGreco (Mar 2, 2012)

If I'm reading your labs right, it looks like you are 4x the max normal for T3. I was up in that range too, actually higher for some time. I can see how that area could cause everything you are experiencing, as different people react differently.

Also, I was allergic to methimazole, and I was told that about half the people allergic to methimazole are allergic to PTU as well, so its not surprising you had a reaction to both. My doc didn't even bother trying the PTU with me because of those odds and the severity of my reaction.

How is your heart rate? Are you on any beta blockers? Any other medications?


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## DillonM86 (May 8, 2013)

Thanks for the responses everyone. I'll call me Endo tomorrow to see about the RAIU and ultrasound


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## Andros (Aug 26, 2009)

DillonM86 said:


> Thanks for the responses everyone. I'll call me Endo tomorrow to see about the RAIU and ultrasound


RAIU would be a good choice as a first choice. Humble opinion.


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## DillonM86 (May 8, 2013)

Update: So I'm still off the PTU since my first post two weeks ago. The hives started going away. They were almost completely gone about this past Sunday. I forgot to mmention this last time but when i was on the meds i gained 4 pounds so i was up to 160. When i stopped taking them two days later i had already lost 2 pounds in 2 days. Today I am down to 151.

I have an appointmet for a surgeon on the 30th. Probably just an appointment before the actual surgery. My hips, back and bottom are freaking killing me. I feel totally weak. I can't sit down even on a cushion or couch for more than 10 minutes. I can wrap my fingers around my forearm, starting to see my ribcage, etc, etc... Oh and my bangs are starting to go grey.


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## Andros (Aug 26, 2009)

DillonM86 said:


> Update: So I'm still off the PTU since my first post two weeks ago. The hives started going away. They were almost completely gone about this past Sunday. I forgot to mmention this last time but when i was on the meds i gained 4 pounds so i was up to 160. When i stopped taking them two days later i had already lost 2 pounds in 2 days. Today I am down to 151.
> 
> I have an appointmet for a surgeon on the 30th. Probably just an appointment before the actual surgery. My hips, back and bottom are freaking killing me. I feel totally weak. I can't sit down even on a cushion or couch for more than 10 minutes. I can wrap my fingers around my forearm, starting to see my ribcage, etc, etc... Oh and my bangs are starting to go grey.


I hear ya' loud and clear! I almost died from Graves' so I and the others here are glad you are getting right on it. You won't have any regrets.

Thank you for the update and keep us in the loop. We are here for you!


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## webster2 (May 19, 2011)

I don't think you will have any regrets either. Graves nearly did me in, and I am really tough. I feel great now! Hoping for the best for you!


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