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Old 02-08-2006, 06:40 AM   #1
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Kant-Would you mind sharing your story from the beginning

Kant, I hope you don't mind me asking you if you could share your story from the beginning. I have so much trouble with my thyroid, and the actual meds that I think I'd give up if I could. No matter what I do I never seem to get better, and it has been a very long time. I have so much trouble tolerating the meds themselves. When I try to increase, as my labs suggest I need , I just get an increase in already high bp, and just feel plain awful, almost like i'm altered, kinda like just coming out of anesthesia. I never feel right in my head, like I have a bad sinus infection or something, just never right, and I hurt. Now when I go to the dentist or other doctors like gyn, it one big panic attack, and I try to act as if nothing is wrong. My face turns red and hot and my blood pressure goes way up! I feel like a basket case, and I don't know why. I never was sick a day in my life before this thyroid thing. And, as time goes by I've been able to add insulin resistance, high blood pressure, interstitial cystitis, anemia, vit D deficiency to the list of problems. Before this all started I had a job instructing aerobics, and weight lifting. Now, I'm fat and crabby, and tired. I do have a sympathetic nurse practitioner in the area of endocrinology helping me, as she can't tolerate thyroid meds either, but she isn't hypo enough to have to take them, but she doesn't know how to help. She is willing to let me try different things like hrt and stuff like that god bless her heart, but nothing seems to help. It just seems to get more and more out of hand. I've read some of your posts and see that you have had your thyroid removed and are doing better. Did you have any of the problems I have mentioned. I just don't know how anyone can have as many problems as I do. I've turned into one big fraidy-cat. It would be just great if you could share your story from the beginning. Thanks if you can!
Shonks5

 
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Old 02-08-2006, 07:07 AM   #2
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Re: Kant-Would you mind sharing your story from the beginning

Shonks.................

Bless your heart!! I so know that desperate feeling. Can you tell me a bit about what your diagnosis is? Do you have hypo or is it hashi's. That is the real key here...........

I can tell you the big parts. My health story is a long problem but in the end it was all thryoid and I am 100% better now.

It all started for me about 10 years ago.................I was 31 and out of the blue I started in with this horrible anxiety and then panic attacks. They weren;'t once in a while either.........they were severe and sometimes lasted all day. I had numerous thyroid tests back then but I always got the "everything is normal" and didn't know to ask to see copies.

I got into an anxiety/panic counselor and got on meds and that did help but I had to go through the anti-d mess and gained alot of weight in that time. I didn't know ( and still don't ) if it was all from anti-d's or from thyroid.

Over the next few years I just felt weird all the time...............felt unreal, sickly, nervous, lazy or crazy hyper..........I had bouts of anger and horrible mood swings.

Then 5 years ago is when the worst started............I had just quit smoking to try and get my health back because from all the anxiety issues I started smoking again. As soon as I quit I got sicker and sicker................I had that mental weridness again...........nervous all the time...........aches and pains all the time and never in the same place. I never could sleep either. In all this I had been to so, so many dr's and nobody could ever find anything. I think once they saw on my chart I had anxiety issues they all just chalked everything up to anxiety!!

I ended up falling and breaking my ankle and I also developed a bad cold that week. The cold lead into bronchitis, pnuemonia and a double ear infection. I went to a new dr for this and she took one look at me and said my thyroid looked enlarged. I was so sick and told her I had it tested many times and it was fine. She treated me for the illness and I didn't go back for another year. I was so sick of dr's by then. In that year I never really did get well. I had one cold and bout with the stomach flu after another.........I would be well at the most maybe 2 weeks. I had gained another 20 pounds too. Then came the plantar faciitis...........I could barely walk but at the orthopedic clinic they said it was from being on crutches. Then came horrible tmj, I ended up in pain management just so I could eat. Next was never ending ear infections..........knees that were so painful I couldn't use steps.............hair tha was so dry and awful looking.............my face was puffy all the time............heavy, heavy periods that came every 18 days................feeling like I was having a nervous breakdown.

I went back to this dr and she remembered what she said about my thyroid and she did the labs and they were normal so she decided to look at it with an ultrasound and I had 2 good sized nodules on it. There was my answer but I didn't really know it at the time and neither did she. Since my labs were normal I didn't do anything about it. The next year was the worst and I got sicker and sicker...............I lost 60 pounds in about 8 months............I had a feverish feeling all the time.............my body ached and my skin was always sore..........my joints were so painful..........and I could see my thyroid. I was bleeding so heavy every month I could hardly leave the house. I went back to the dr and she did a biopsy of the nodules and it showed total lymphocyte infiltration........( hashi's). But my labs were normal, even the antibodies...........it took another year of being that sick til the antibodies went haywire then FINALLY she realized how sick I was. I had done loads of research in the meantime and had found out my biopsy showed follicular cells and I knew that had to come out. ( I had found this board in the meantime and got well educated)..............I spent that entire year finding dr;'s who would know about how sick I was..............I couldn't tell you how many dr appts I went to but it was many! I did find a dr ( and the dr issue is a whole other story) but he was booked for a year and wasn't taking new patients. I had my yearly check up with my obgyn and when I walked in and he saw me he had a screaming match with the endo's nurse and got me in the next week. I had piles of research to show my obgyn and he took the time to look at all of it and he knew I meant business, I was sick and had to get well or I didn't want to go on!

Once I got into the right dr...............it was a piece of cake. I had my thyroid out 2 weeks from that appt with my obgyn. The rest is history and it totally gave me my health back. The endo I see ( I do have one of the very few good ones) knew that hashi's can make a person very ill despite labs and he also knew the reason I had so many problems was because my whole body was fighting this diseased thyroid. The good labs didn't matter to him at all. I couldn't take meds...........I had tried that with my pcp, but my labs were great so there was no room for synthroid or Armour which I also tried. I had researched a surgeon in all that time too so once I got in with the endo and he said my thyroid had to come out I knew who I wanted and he got me in with him in 1 week. I had turned into a very pushy gal by then. I was too sick and didn't really care anymore.

The whole issue is getting a dr who knows YOU. wants YOU to be well and doesn't look at a lab sheet and think you are fine despite you being sick! It takes a dr who knows what hashi's and graves can do to a person. The surgeon I used was a vascular surgeon and he specialized in thyroid and parathyroid surgeries. He had a years waiting list but thanks to the endo he got me right in and the surgeon took it out the next week. He had no doubts that once it was out I would have my health back and I sure did. I woke up from the surgery feeling better.

I hope that helps, if anything, to know someone has been down this road you are on and understands how sick you are and that it is doggone near impossible to get anyone to admit it!

Now with my thyroid gone I can take a whopping 225/250mcgs of synthroid and 12.5mcgs of cytomel. I never had another ache or pain.............no more sickness. I had one cold this winter and it was so minor. My tmj is 100% better. I had psoriasis all over my joints and that all went away. It is amazing how your own body can turn on itself but it can!

Let me know a bit more about your situation................nodules........ antibodies...........labs...........thos e kinds of things............

Karen

Last edited by merrillin; 02-08-2006 at 07:36 AM.

 
Old 02-08-2006, 07:36 AM   #3
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Re: Kant-Would you mind sharing your story from the beginning

I do have hashimotoes, I was sick for a year before being treated. I just looked up my antibody (Microsomal level was 1:25600) from I hate to say how long I've been dealing with this, but 12 years ago. I am hypo now, taking Armour, trying to adjust it up but have so many problems doing that. My last labs were :
ft3 3.10 normal is 2.77-5.27
ft4 0.62 0.78-2.19
T4 5.59 5.53-11.0
FTI 1.6 1.64-4.07 not sure what this is. Do you?
TSH 2.96 0.465-4.68

I am also taking estrogen(patch), progesterone(pill) so I know that these play into it too. I take 2 gr of Armour. When I first was diagnosed the dr put me on synthroid 50mcg once a day. Well, I ended up in the er with racing heart and the sweats like you wouldn't believe. I was able to increase it very slowly by breaking the pills into teeny-tiny pieces, and with incredible side effects, but the horrible headaches did go away. Since then have tried time release t3, and used it for a while, still didn't feel well. Recently tried synthroid in addition to armour, but quit because my bp and pulse went way up and I got very anxious and felt hot and kinda funny. Now I'm on the 2 grains for about 2 months. Still don't feel well and my thyroid kinda hurts. I just can't believe how much trouble and the crazy side effects I get from trying to increase my meds. Also, if I forget to take my meds, or if they go through me too quickly if you know what I mean (too many potty breaks) I get very sick. So either way, my body can't seem to take any adjustments. Now that I am on hrt, I'm starting to have more problems with adjustments. I just don't know what to do. And the doctors all say (except the nurse practioner I go to now) that they have never heard of anything like this. So, what do you think? And, thank you so very much for taking the time to share with me!

Shonks5

 
Old 02-08-2006, 07:46 AM   #4
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Re: Kant-Would you mind sharing your story from the beginning

Did they find the Hashis on pathology or FNA??

 
Old 02-08-2006, 08:01 AM   #5
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merrillin HB User
Re: Kant-Would you mind sharing your story from the beginning

Shonks..........your labs are off some that is for sure, but some people just cannot tolerate meds at those levels. You can also have the whole hashi's issue making you feel so sick and you can have spurts of over production since your thyroid is being destroyed. I never could get any kind of med adjusted with me while I had my thyroid.

Did they do an ultrasound to see if you have nodules? I would insist on that. They can cause their own symptoms. What about your antibodies now? Are they higher ? I know for me my endo said it can be very hard if you have a high antibody level to take meds because they are attacking the thyroid and then add meds into the picture and you just can't handle all of it.

Karen

 
Old 02-08-2006, 08:09 AM   #6
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shonks5 HB User
Re: Kant-Would you mind sharing your story from the beginning

They found the hashi's with blood work and the nodules on an ultrasound!

 
Old 02-08-2006, 08:16 AM   #7
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merrillin HB User
Re: Kant-Would you mind sharing your story from the beginning

Kathy............mine was also diagnosed with the FNA.

Karen

 
Old 02-08-2006, 08:16 AM   #8
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Re: Kant-Would you mind sharing your story from the beginning

I couldn't find another thyroid antibody test but my Anti nuclear ab were normal. I don't understand why they would do that test.

 
Old 02-08-2006, 08:18 AM   #9
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Re: Kant-Would you mind sharing your story from the beginning

shonks...........if you have nodules then that is your answer there most likely. You have many issues that come with nodules. Did you have them biopsied to see what types of cells you have?

Karen

 
Old 02-08-2006, 08:27 AM   #10
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Re: Kant-Would you mind sharing your story from the beginning

No, they said that they didn't need to be biopsied. But, your story is just horrible. My story is very similar to yours but I don't think quite as bad. I do have days when my heel hurts so bad that I limp for a while in the morning. Any connection to thyroid? Did you ever take the thyroid meds , on a regular basis, while your thyroid was still in? Sorry for all the questions. I am glad to hear that you are feeling better. I used to homeschool my kids, but I'm so tired that I had to send them to school. Does give me a little more rest though, but I miss them. Like you, I have seen dozens of doctors, also we are a military family so we moved around alot. We are now permantly stationed here, and I still can't find anyone to help me get this under control. How did you ever find someone to help you??

 
Old 02-08-2006, 09:22 AM   #11
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Re: Kant-Would you mind sharing your story from the beginning

Shonks...............I would get a copy of your ultrasound and post it here.................don't EVER take they don't need to be biopsied.............

Yes, the heel pain is plantar faciitis. Most of us here have dealt with that. It is really significant in people with hashi's.

I think you might need some better advice from dr's You really need to check into getting your ultrasound report! Dr;s do NOT follow up correctly with nodules most of the time!

I spent most of an entire year researching drs...............going to appts......................it was a huge orderal, but, it is the ONLY way to get proper care.

Please follow up on that us report to see if your dr is putting your health at risk by not doing a biopsy on the nodules.

Karen

 
Old 02-08-2006, 09:47 AM   #12
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Re: Kant-Would you mind sharing your story from the beginning

I'm really quit embarrased as this ultrasound was done a long time ago. But I will post what the report says: Sonographic evaluation reveils a well-defined hypoechoic nodule in the mid portion of the right thyroid lobe. It measures 5mm in greatest dimension. On the lift superiorly, there is a well -defined hypoechoic nodule measuring 4.5mm. In the lower pole of the left thyroid lobe, a nodule is seen measuring 1.1x1.0x.0.5cm. The gland is overall coarse in its echogenicity, with increased vascularity on color flow The isthmus in not thickened. This was from quit some time ago. Maybe I should request a new ultra-sound. Most of the time when I go in for a check, the thyroid nurse that I am seeing feels my thyroid and asks me to swallow, I'm sure you know what I'm talking about. I guess she doesn't feel anything. It sounds like these nodules I have or had are very small? What do you think? I feel kinda stupid now, I guess I should have been following this. Oh Boy!!

 
Old 02-08-2006, 10:38 AM   #13
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Re: Kant-Would you mind sharing your story from the beginning

Shonks,
I just wanted to say that my story sounds a lot like yours - I too am embarrassed that I have not had a biopsy - I have nodules too and normal labs - My anti-bodies are normal too - When my nodules were discovered my doc put me on synthyroid - I had trouble with my heart rate and blood pressure too, but I did feel some better energy-wise...my endo does an ultrasound every 6 months to keep track of the nodules....mine were about the same size as yours - although for awhile one or two of them got larger...at one time I had seven of them - about a year ago...last fall my PCP put me on BP meds- a beta-blocker - since then I have not had the heart rate elevation and can take a larger dose of synthroid without feeling like I'm going to explode - my BP is still up and down - but mostly better....But I don't think I'm well at all - I also don't know if I have hashis for sure since I did not have a biopsy and continue to have negative AB tests....but I have plantar fasciitis really bad, I have severe shortness of breath to the point that I can no longer exercise, I have gained about 60 lbs since this thyroid business started, I have extreme fatigue, I have had panic and anxiety attacks almost bad enough to send me to the ER - I may now be having heart trouble because my cholesterol is so elevated and I'm overweight and can't exercise, I have foggy thinking, chronic insomnia, and general achiness most of the time.....I have wondered for a long time if I shouldn't just get this diseased gland out of my body like Kant said....But because my nodules are small, I have a hard time finding anyone willing to take it out - I've been to two endos, two ents, the PCP, two ob/gyns, a GI doc, one surgeon (who was willing to take it out - but he tragically died in a plane crash before we got a chance), had CT scans, MRI, and all kinds of stuff...now I'm going through the full series of heart tests and next probably pulmonary tests....I'm sorry I don't have a success story to share like Kant's, but I did want you to know there's someone here with a story much like yours...My health fell off a cliff when my thyroid went bad....I am still hoping for an answer - it could be to have it removed!....Please keep me posted on how you are doing....I too take BCP - or estrogen/progesterone - I am 41 now and my problems started when I was 37....I had anxiety prior, but never this bad....I hope you find answers and that we can both get well!! Kant has lots of wisdom to share about these things!!
Take care and best wishes to you,
Kathy

 
Old 02-08-2006, 11:00 AM   #14
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Re: Kant-Would you mind sharing your story from the beginning

Thanks so much for sharing! My problems all started when I was just turning 34. A lot of stress in my life within a short period of time. I got pregnant with my eldest son 10years after the birth of my daughter. He was born, forceps, and almost 10lbs. The following year, I had a miscarrage. Then the birth of my youngest. Next, We had a new house built. That year I had abdominal surgery. The next year we were reassigned to Hawaii. Six months into our tour, I found out that my mom was dying, and I had to fly home with my 3 kids without my husband, and take care of her, and also to say good-bye to her! I moved in with my sister took care of her kids and mine until my mom passed away! Then, flew back to Hawaii! A few months later I had surgery again. It was downhill from there! I think that stress plays a big part in autoimmune disease. There are six children in my family. My mom had hasimotoes as well. From what I've read each child has a 50/50 chance of getting the disease. So far, I am the only one that has it. My other siblings do have stress, but not as much as me, we are a military family, and life can be very stressful. Example, we moved 16times in 20years. So, I really think that stress plays a big role in it. But, how do you get rid of stress???

 
Old 02-08-2006, 11:07 AM   #15
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Re: Kant-Would you mind sharing your story from the beginning

I completely agree with you about stress - My illness came on after lots of stress too - I can't believe all you've been through - I don't know how to get rid of stress- I know exercise can help and taking time out each day just to meditate, read, take a bath or somehow have some quiet time - I'm sure that's hard with children though....I am still trying to figure out how to reduce stress too - now that I am learning about heart problems I may come across some of those things -If I do, I will share them with you!
Please take care,
Kathy

 
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