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Old 12-17-2008, 11:48 PM   #1
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pufff HB User
Thoughts on where to go from here?

Thank you to everyone who shares information on here. I found this site a couple of weeks ago and have been soaking up information since then. So this is going to be long. The questions are at the bottom.

I'm a 22 year old female. In May of 2007 I had some health issues and went to see a dr, thyroid levels came back abnormal. I saw an Endo in July 2007. They told me I am hyperthyroid and have Grave's. They started treating me in Sept. 2007. I don't have my medical records from back then, but I do know that my levels were WAY out of wack and they put me on such a high dose of meds to start with that the pharmacist called the doctor's office to confirm before she would give it to me... fast forward a bit I was seen by this Endo (who I found out was actually a fellow) until April 08. My levels were never stabalized and they changed my medication every time I saw her. Long story short it was a nightmare that I'm not even going to get into.

In late March 08 I started feeling horrible. I lost 9lbs in a week and a half. My thyroid enlarged so much I couldn't button the top of a collared shirt. I found an enlarged lymph node on the left side of my neck, under the ear. Felt absolutely horrible. Went to see my Endo. My TSH was 36, but she told me none of my symptoms - extreme fatigue, weight loss, thyroid swell, etc - were due to my thyroid and I should go see my primary care dr. I went to see my primary care dr who of course told me my thyroid was causing everything and I needed to get a second opinion.

Saw Endo at clinic #2 in June 08. He did bloodwork and an ultrasound, and stabalized me on medication. I started feeling a lot better. Thought I had finally found a gem of a doctor because he listened to me and actually explained things... and then I started feeling horrible again.

Between my appointment in mid Sept and 2 weeks ago, I started feeling extremely fatigued again, my appetite decreased to the point that I was eating about half of what I normally would in a day but I was gaining weight, memory problems again, clicking jaw, bruising easily, joint pain in knee, diagnosed with bronchitis 2x. He told me that my thyroid levels are normal, and therefore none of the symptoms I'm experiencing could be related to my thyroid and I should see my primary care doctor. I requested my medical records from him, and found out that he has only been testing my TSH

History of thyroid labs that I have access to:
6/4/08
T4, Free (Direct) .87 (0.61-1.76)
Triiodothyronine (T3) 138 (85-205)
TSH 3.168 (0.350-5.500)
Thyroid Stimulating Immunoglo 138 H (0-129)

6/12/08
Ultrasound:
right lobe measures 2.3 x 1.8 x 3.7 cm. There is diffuse heterogeneity and the gland is markedly hypervascular. There are no thyroid nodules.
left lobe measures 1.9 x 1.9 x 3.5 cm and again is quite hypervascular. No ultrasound nodules.

7/10/08
TSH 5.208 (0.350-5.500)

9/12/08
TSH 2.126 (0.450-4.500)

12/3/08
TSH 1.609 (0.450-4.500)


Current symptoms:
Horrible cough that I've had for about a year, it's gotten worse in the last 2 months. It's been accompanied by mucus since that time.
Extreme fatigue
No appetite/feeling full - I've lost about 5lbs in the last week
Bruising easily, sometimes I have no idea I how I got them and they don't go away for a long time
Popping in jaw
Right knee pain
Bones in legs hurt
extreme intolerance to cold, except at night when I'm so uncomfortably hot it wakes me up (no heater, no blankets, 20 degrees outside)
hoarse voice that sometimes cracks - like a pubescent boy
occasional stabbing pain in left side of abdomen
memory issues
Lymph node in my neck is still swollen, and has been since I first noticed it in March. It's about .5in and rolls like a marble.
I look old lol.. I'm not even sure how to descibe it. One of the kids I work with told me I look like I'm high on drugs. My undereyes are really puffy and dark, despite getting plenty of sleep and keeping my head propped up. Everyone says I look sick.

I do no smoke. I do not drink alcohol or caffeine. I am physically active, but have not injured my knee or any other part of my body. I have very good eating habits.

I saw a new primary care doctor last week. I brought my medical records from the Endo and explained how I'm feeling. I can tell I won't be seeing her long term. She said that I have cough variant asthma (didn't do any testing) and prescribed me a daily inhaler. She also put me on antibiotics (this is the 3rd time in the last month and a half I've been on antibiotics for the cough/mucus). She said that my fatigue is probably from depression due to me being sick for so long. I am a social worker. I know the signs of depression, and am a strong believer in getting mental health assistance when you need it. I am not depressed. My co-workers (who are also social workers) laughed when I told them she said that I'm probably depressed.

I told her that I was concerned that my Endo has only been testing my TSH, and she said that the Endo is a specialist and knows what he's doing . She also told me that once I'm on medication you don't have to test anything but TSH. She said that she was going to do blood tests to make sure nothing else is going on with me besides the asthma. I asked her what she was going to test and she told me that she's a doctor and that's what she gets to decide .

Fast forward to now. I feel even worse. I have zero energy. I'm loosing weight like crazy. I feel like I'm going to hack up one of my lungs. I found a couple more swollen lymph nodes in neck and abdomen, but are much smaller than the one in neck. My blood tests all came back normal except for slightly elevated hemoglobin and RBC - which dr isn't concerned about.

Blood Test Results:
CBC
Leukocyte count 5.1 (4.0-10.7)
RBC 5.36 flagged high (3.6-5.0 10*6)
Hemoglobin 15.9 flagged high (11.4-15.5)
Hematocrit 44 (36-46%)
MCV 83 (80-98)
MCH 30 (27-34)
MCHC 36 (33-37%)
RDW 12.1 (8.0-18.5)
Platelet Count 238 (140-450 10*3)

Metabolic Panel
Sodium 138 (135-145)
Potassium 4.0 (3.5-5.2)
Chloride 102 (97-108)
Carbon Dioxide 27 (22-32)
Glucose 89 (65-140)
BUN 9 (6-24)
Creatinine .63 (.50-1.40)
Calcium 9.3 (8.4-10.2)
Total Protein 7.8 (5.8-8.0)
Albumin 4.7 (3.7-5.1)
Bilirubin, Total 1.0 (0.2-1.1)
AST 21 (6-35)
ALK Phos 67 (30-125)
ALT 16 (8-40)
GFR above 60 (60-100)

SED Rate 4 (0-20)

Rheumatoid Factor Negative

ANA Screen Negative, Less than 1:40

I told my doctor I'm not taking the inhaler until she tests me for asthma. I'm seeing her on 1/2/09 for the pulmonary function tests. I'm just really lost about where to go from here.

My questions:
Have any of you experienced these symptoms in relation to your thyroid? If so, have you been able to get relief from them after getting your thyroid under control?

I didn't realize mucus could be related to thyroid until I read about it on this board... I know this is kind of gross, but could any of you who have experienced it describe your cough/mucus? (TMI, I know!)

Should I keep pushing to have my other thyroid functions tested?

Are there other tests I should be asking my doctor about? I really feel like no matter how much I read about the thyroid I don't have the knowledge to not just get jerked around by the doctor.

Any other thoughts or comments you all have would be greatly appreciated! I just want to get this worked out. My thyroid has wrecked havoc on my life. I dropped out of college last year because I couldn't remember simple things like where my classes where, what days/times I had class, when I had assignments due even though it was always on the same day for a year. I really want to feel well again, and I want to go back to school.

Thank you sooo much!

Last edited by pufff; 12-18-2008 at 04:42 PM. Reason: Edited to add limits and standard ranges

 
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Old 12-18-2008, 01:05 AM   #2
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Join Date: Nov 2008
Location: San Diego, CA, USA
Posts: 29
hypoT HB User
Re: Thoughts on where to go from here?

Ok, first off...I've had loads of the same symptoms you have described and I was diagnosed just this October with Hashimoto's Thyroiditis (autoimmune hypOthyroidism) preceded by Reverse T3 Dominance in March. I am 21 years old and started getting really symptomatic when I was 19. I got this nasty recurrent throat infection that only steroids could calm for a year before having my tonsels removed. Then I still had thick mucous dripping down my throat periodically--absolutely disgusting. I also went though a phase where I would have hot flashes at night and wake up literally drenched in my own sweat--my bed soaked. My voice is still hoarse, my weight and appetite fluctuate a LOT and I have major issues getting up for work in the AM.

I just had my thyroid scanned because it was enlarged and it was less dense than it should be--due to inflammation.

The Dr. diagnosed you with Graves/hyperT, which I am not very familiar with...but your symptoms seem to match hypOthyroidism. It's hard for me to evaluate your lab work without the "normal" ranges for each item, but elevated TSH is often indicative of hypOthyroidism. And I have heard of people going hyperT before they crash and burn into hypOT. The problem is, many hypO and hyper symptoms can overlap. So the only way to really get you figured out is to have new blood work done.

Here is what you should have tested ASAP:

Free T3
Free T4
Total T3
Total T4
REVERSE T3 (very important)
TSH
anti-thyroglobulin antibodies
anti-TPO antibodies
cortisol
ACTH
the sex hormones
ferritin

Now, I am on medication for my underperforming thyroid as well as to decrease my high reverseT3 and I definitely feel better than I did a year ago...but I am not "normal." My adrenals are fatigued so I am taking some hydrocortisone (still need to optimize my dose). I suspect that I am also Insulin Resistant/Hypoglycemic and perhaps have PCOS. I am getting tested for those soon. Some veterans on this board let me know that those things tend to go together in thyroid patients. You may want to look those up online and see if you fit the profiles.

If you can, also have a vitamin panel done. Many thyroid patients are deficient in key vitamins.

I'm sure a veteran member will also respond to your post and probably have better info on the HyperT/Graves angle.

Post your lab results as soon as u get them Good luck!!

Last edited by hypoT; 12-18-2008 at 01:09 AM.

 
Old 12-18-2008, 05:45 AM   #3
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Location: South Carolina
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lynnybug55 HB User
Re: Thoughts on where to go from here?

I'm 53 and have Graves and Hashimoto's. Eveidently, these 2 have been battling for 20 years. I am feeling better with PTU, but not there yet. I have a cough, but I also smoke. I never even considered it may be thyroid related! Others on this board can give you more technical advise, but PLEASE keep pushing for a doctor who will listen and not be intimidated by your desire to participate in your care! You definitely need the tests hypoTpremed recommended. Good luck to you!

 
Old 12-18-2008, 04:57 PM   #4
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pufff HB User
Re: Thoughts on where to go from here?

Thank you for replying and sharing HypoTpremed and lynnybug55. It's really nice to talk to other people who have experienced this too. My friends and family are really supportive, but they just don't get it!

HypoT:
I edited my original post to include normal ranges.. Everything that I have copies of is in the normal ranges with the exception of the RBC and hemoglobin. It's really strange because my current Endo indicated in his write up of when he first saw me that the only time my thyroid levels were abnormal were in March 08 when my TSH was at 36.. obviously this is confusing because I don't understand why they were treating me (beginning Sept 07) and had my meds all over the place if my thyroid levels were normal??

My current Endo has my records from my first Endo clinic, but they wouldn't give them to me. I plan on going to the first clinic in the next couple of weeks to get them. Unfortunately its at a teaching hospital which is far from my house, and a MAJOR bureaucracy. I'll post it once I get them.

As far as what I need to get tested... I guess I have some research to do because I haven't heard of half of that stuff! lol. I guess I'll also have to find another new primary doctor because she already told me she wouldn't run anything related to my thyroid because my TSH is normal. Thanks for the info on other issues to look into too, I will definitely do that.

I guess the revolving door of doctors continues!

 
Old 12-18-2008, 05:39 PM   #5
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sparkles916 HB User
Re: Thoughts on where to go from here?

I am intersted in your story, but I am a little confused. How did the dr treat you for your hyperthyroidism/Graves in 2007? Did this result in you going Hypo? And then what meds, amnount were you treated with when your TSH went to 36? What med level are you on now with a tsh of 1.6?

Did you have a test for Grave antibodies performed?


I wonder what kind of inhaler you were given? I agree it is likely not a good idea to treat without testing. I only ask since if it is a steroid based inhaler, you run the risk over the long term, depending on dose, of adrenal suppression. Probably not a good idea if you are have some endocrine issues at present.

I would send a formal request for records to each of the drs you have seen and keep a master collection for yourself ( I did this and it is very helpful), as it sounds like you may have a complex prbolem and may need to see more drs till you find a solution. That way you can bring what you need with your without having to go through any inane bureacracy!

 
Old 12-18-2008, 10:26 PM   #6
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pufff HB User
Re: Thoughts on where to go from here?

Thanks for the response sparkles! I can definitely see how my post was confusing. I was trying not to make it into a novel lol.

Quote:
How did the dr treat you for your hyperthyroidism/Graves in 2007?
In Sept. 2007 they started treating me with PTU and propanalol. I have an old prescription bottle for PTU from late 2007 that was for two 50MG tablets 3x daily. So my best guess would be that it was somewhere around that dosing, possibly higher. I don't know the propanalol dosing.

I know they were really concerned that I was going to have permanent cardiovascular damage because I was having bad symptoms when I came in to see them, including heart palipitations, numbness in limbs, and blacking out while exercising. They were also worried because I was first seen by primary care doctor and had my thyroid levels checked in May 2007, and I first saw a specialist in July 2007. They didn't start treating me until September 2007 because I went out of state for a month and they refused to start me on meds since they wouldn't be able to monitor my liver functions. I was really POed about this because I previously lived in the state I went on vacation to and had an endocrinologist from previous health problems that I know would have done any testing they requested.

Quote:
Did this result in you going Hypo?
Yes, or so I was told. Like I said I don't have access to those labs right now.. a side tidbit of info that may help clarify the history. Like I said my levels never stabalized at Endo clinic #1. I was being seen at a teaching hospital. My doctor was a fellow, so I had to see an actual Endo for about 1-2 minutes at the end of each appointment. Unfortunately I saw a different Endo at each appointment, so I don't think anyone ever really kept track of what was going on with me besides the student who had WAAAAY to many patients. So technically at this point I've seen 5 Endos, plus the fellow

Quote:
And then what meds, amnount were you treated with when your TSH went to 36? What med level are you on now with a tsh of 1.6?
I was taking one 50MG tablet daily when my TSH was at 36.

I am currently on 1 half of a 50MG tablet once daily. So 25MG a day.

Quote:
Did you have a test for Grave antibodies performed?
Yes, but not until I saw my current Endo in June 08. I had asked the first clinic about testing for it since my family has no history of thyroid problems, but I was silenced! The test I had in June was Thyroid Stimulating Immunoglob which came out at 138 H % (0-129).

Quote:
I wonder what kind of inhaler you were given? I agree it is likely not a good idea to treat without testing. I only ask since if it is a steroid based inhaler, you run the risk over the long term, depending on dose, of adrenal suppression. Probably not a good idea if you are have some endocrine issues at present.
Interesting, I didn't know steroids can cause adrenal suppresion. Yes, it is a steroid based inhaler - QVAR 80mcg (beclomethasone dipropionate HFA, 80mcg). It was prescribed to me at 1 inhalation twice daily.

That's a big reason why I decided later that day after I saw her to contact her and tell I wasn't going to take it without being tested first. I don't like the thought of taking a steroid if I don't really need it. I was prescribed steroids several times when I was a kid and always worried about damage it could do.

Quote:
I would send a formal request for records to each of the drs you have seen and keep a master collection for yourself ( I did this and it is very helpful), as it sounds like you may have a complex prbolem and may need to see more drs till you find a solution. That way you can bring what you need with your without having to go through any inane bureacracy!
That's what I'm learning now! I'm so mad at myself for not learning more from the first nightmare I had with Endo clinic #1. I now have a copy of all my records from Endo clinic 2, and like I said I will be going to get my records from Endo clinic #1 after the holidays. Luckily through the insurance that I have, whenever I see a doctor in my network it posts lab results online that I have access to. I'm learning... slowly.. but I'm learning!

 
Old 12-19-2008, 04:13 PM   #7
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sparkles916 HB User
Re: Thoughts on where to go from here?

Well, Puff, I too agree with everyone who has posted in this thread. You definately need more than a TSH. It seems some drs believe that the TSH is the end all be all, while others are persuaded by the medical literature on thyroid that recommends a fuller panel including the "frees".

I hear you on the depression comment. It is such ashame that drs continue to believe that symptoms are somatic, esp when it has already been established that you have a thyroid disorder.

I am sure you know already, and I can tell you from my own experience, that when a dr says something like your dr said, and isn't able to work with you, there is no use banging your head against a wall, jsut time to move on to the next and hopefully, more receptive dr. I learned the hard way!

best wishes !

Quote:
She said that I have cough variant asthma (didn't do any testing) and prescribed me a daily inhaler. She also put me on antibiotics (this is the 3rd time in the last month and a half I've been on antibiotics for the cough/mucus). She said that my fatigue is probably from depression due to me being sick for so long. I am a social worker. I know the signs of depression, and am a strong believer in getting mental health assistance when you need it. I am not depressed. My co-workers (who are also social workers) laughed when I told them she said that I'm probably depressed.

I told her that I was concerned that my Endo has only been testing my TSH, and she said that the Endo is a specialist and knows what he's doing . She also told me that once I'm on medication you don't have to test anything but TSH. She said that she was going to do blood tests to make sure nothing else is going on with me besides the asthma. I asked her what she was going to test and she told me that she's a doctor and that's what she gets to decide .

 
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