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Old 09-17-2012, 10:42 AM   #1
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New to the boards and really need some advice

Hello all. I wanted to introduce myself and was really hoping some of you could give me some insight as to what is wrong with me? First of all my name is Robin

I have been feeling horrible for atleast a year now, general ill feeling and major fatigue. Back in March of this year, i noticed a swollen subclavical gland on my left side and low grade fevers, shortness of breath, and extreme fatigue . This has gone on now for 6 mo's. I have been in and out of the doctors having a zillion tests done to find out what is going on. Since then I have had several more swollen nodes in my neck and my symptoms have progressed to the following.

neck pain near clavicle area
difficulty swallowing
Pain in my thyroid
extreme fatigue and loss of energy
loss of appetite
pain and burning in my arms and wrists
tingling nerve feeling in my right foot
burning eyes
major bags and dark circles on my eyes
sore throat
sensitivity to light
extreme hot flashes and sweaty hands and feet
sleeping for 8-10 hrs and feeling like i need another 10 more
just an overall sick feeling in my body
dizziness and feeling like i'm in a fog all the time inside my head
heart palpitations
high cholesterol
Hair loss
thin finger nails to where I can scrape off the top layer of my nail with my teeth (gross i know)
itching all over my body like little stings everywhere that itch
I'm sure there are more just can't think of them
had low Vit D last year but after several summer months retested and they were fine, but i'm thinking that they may be low again.

sorry for the huge list. lol

Anyhow, i had a FNA done on one of my nodes as they suspected possible lymphoma and that was normal. So my dr referred me to an Infectious disease dr to check for many other things such as RA, lupus, etc.. So far all those have turned out normal as well. I was ordered a bone scan and Gallium scan which i am still awaiting results on that was done last week. I also had an ultrasound of my thyroid with came back as abnormal, with the impression of:

Heterogeneous hyperemic thyroid gland consistent with diffuse thyroid disease.
Bilateral cervical lymph nodes that demonstrate lack of a normal fatty hilum.
These may be reactive or neoplastic.

My doctor decided since it had been a yr since my thyroid levels were checked she decided to order some thyroid blood work and these were my results:

TPO AB 101 range (<35)
Thyroglobulin Auto AB 29 (<20)
TSH 2.40 (0.34-4.82)
Free T3 2.89 (2.3-4.2)
Free T4 1.14 (0.8-1.80)

I got an email the other day with my TPO Ab and Thyroglobulin Auto AB results and a note from her saying:

So your thyroid antibodies are definitely high. This goes along with your thyroid ultrasound, but is good news because the picture is coming together, looking like thyroid definitely. So on reviewing your labs after your thyroid antibodies today came back high, it seems we haven't checked a TSH or T3, T4 for a year. Let's check those your next lab draw to see if your TSH is high or low. If so, it would support a diagnosis of thyroiditis. I will order and you can do anytime (nonfasting)

Well... it looks as though my hormones are normal so now I don't know what to think? I really thought I finally figured out what the heck was wrong with me after all this time and now, i'm not sure. Everything I'm reading says that i could still have Hashi's since I have the antibodies but my antibody's aren't as high as everyone else's (i.e. in the high hundreds or thousands). I would just love to hear what everyone else thinks and any recommendations would be great. As of right now, I have an appt tomorrow to meet with her to see what she has to say about my labs and my condition. I'm afraid she is going to say that It's not my thyroid now since my TSH and other hormones were normal
Is there anything else this can be? Thyroid cancer? still worried about lymphoma as well. Oh i forgot to mention that I also had an uptake scan done a couple months ago as well and that was all normal too.

Thank you soo much for reading all of this and any help or advice you could give me would be soo greatly appreciated.

Blessings!

Last edited by bishrl; 09-17-2012 at 11:03 AM.

 
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Old 09-17-2012, 08:50 PM   #2
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Re: New to the boards and really need some advice

Hi Robin,
I am definitely new to all of this so won't be of huge help but can tell you that your TSH while within range should be lower and your FT4 and FT3 could be higher. Your antibodies point towards hashimotos and with this suppressing the TSH to a very low number is the way to go, poss 0.2 even. I also do not have massive auto antibody numbers but still have lots of symptoms. My TSH is now .4 range(.04-4) FT4 is 17 range (10-20) and FT3 4.8 range (2.8-6.8) and I still have symptoms and from what I can see on this board could still do with increasing my free's. I am giving you my numbers just to give you an idea of what I mean about the ranges. As per advice on this board the frees are good in the 60-80% level sometimes even higher but I cannot work those calculations for you I am afraid!! Hopefully you have a forward thinking doc. Who will work with you to aim for a level that makes you symptom free, it is a long road, finding the right person to work with you, increasing dosages (when you start them) testing every six weeks while aiming for a better range, waiting on them to kick in etc but you will get there. I am glad your various other tests came back clear and hopefully the new ones will also. Your thyroid can cause pretty much all of your symptoms and with treatment, time and patience you will feel normal again please god...hugs and hope you feel better soon

 
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Old 09-18-2012, 09:17 AM   #3
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bishrl HB User
Re: New to the boards and really need some advice

Quote:
Originally Posted by Surfing4answers View Post
Hi Robin,
I am definitely new to all of this so won't be of huge help but can tell you that your TSH while within range should be lower and your FT4 and FT3 could be higher. Your antibodies point towards hashimotos and with this suppressing the TSH to a very low number is the way to go, poss 0.2 even. I also do not have massive auto antibody numbers but still have lots of symptoms. My TSH is now .4 range(.04-4) FT4 is 17 range (10-20) and FT3 4.8 range (2.8-6.8) and I still have symptoms and from what I can see on this board could still do with increasing my free's. I am giving you my numbers just to give you an idea of what I mean about the ranges. As per advice on this board the frees are good in the 60-80% level sometimes even higher but I cannot work those calculations for you I am afraid!! Hopefully you have a forward thinking doc. Who will work with you to aim for a level that makes you symptom free, it is a long road, finding the right person to work with you, increasing dosages (when you start them) testing every six weeks while aiming for a better range, waiting on them to kick in etc but you will get there. I am glad your various other tests came back clear and hopefully the new ones will also. Your thyroid can cause pretty much all of your symptoms and with treatment, time and patience you will feel normal again please god...hugs and hope you feel better soon
Hi there! Thank you so much for responding to my post and thank you for the information you have so kindly given : ) I got a msg yesterday from my Dr and she seems to think that I have thyroiditis and that even though my TSH, FT3 and 4 are normal, it will only be a matter of time before I am showing low or high levels. I meet with her today to go over everything. I will be sure to post back once I meet with her. I am just soo happy to finally have some answers to why I have felt soo crappy for a year.

 
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Old 09-18-2012, 09:33 AM   #4
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Re: New to the boards and really need some advice

Wow you and I have many of the same symptoms. The heart palpitations drove me nuts!!! My nails look bad still and my hair is still shedding but I am feeling much better on other things. I have been on Levothyroxine for 10 weeks now and I haven't had heart palps in 2 weeks! I was having them every single day and let me tell you it scared me to death every time I had them. My energy level isn't 100% but it's not a struggle to walk to just the living room anymore.

I'm so glad you found some answers! Let us know what the Doc says! *huggies to you*

 
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Old 09-18-2012, 08:09 PM   #5
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bishrl HB User
Re: New to the boards and really need some advice

Thank you both so much for the posts : ) I met with my Dr today and she showed me the Bone and Gallium scan reports which are clear of any signs of inflammation or cancer so she said this is my Thyroid and told me I have Hashimoto's. She said that my TSH is still considered normal but my levels are a bit higher than I've had in the past so given my symptoms and the high antibodies, she feels I am in the beginning stages of Hashi's. She said she could refer me to the endo in her office but that she knows that the endo would most likely just want to do a wait and see approach but that if I was comfortable with her (my reg dr) handling my Hashi's, she would go ahead and send over a prescription for some Armour to help with my TSH level. (love this Dr.) I was suppose to go pick it up tonight at the pharmacy but never made it there. So I plan to get it tomorrow. Do either of you know if there are any side effects to the synthetic hormones? I'm just soo glad to finally know what has been making me feel soo crappy for so long. Hugs to you both!!!

 
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Old 09-18-2012, 08:52 PM   #6
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Re: New to the boards and really need some advice

Quote:
Originally Posted by bishrl View Post
Thank you both so much for the posts : ) I met with my Dr today and she showed me the Bone and Gallium scan reports which are clear of any signs of inflammation or cancer so she said this is my Thyroid and told me I have Hashimoto's. She said that my TSH is still considered normal but my levels are a bit higher than I've had in the past so given my symptoms and the high antibodies, she feels I am in the beginning stages of Hashi's. She said she could refer me to the endo in her office but that she knows that the endo would most likely just want to do a wait and see approach but that if I was comfortable with her (my reg dr) handling my Hashi's, she would go ahead and send over a prescription for some Armour to help with my TSH level. (love this Dr.) I was suppose to go pick it up tonight at the pharmacy but never made it there. So I plan to get it tomorrow. Do either of you know if there are any side effects to the synthetic hormones? I'm just soo glad to finally know what has been making me feel soo crappy for so long. Hugs to you both!!!
ARMOUR is very well received among many and you would probably do well on it (would love to be able to get it myself but cannot get it in oz unfortunately. In some of my reading I did hear changes have been made to it and some people found it better absorbed by chewing. Armour is a T4/T3 combi also as far as I know, there are possible side affects with everything, herbal/natural or synthetic and it will take approx six weeks before you will really know if there is symptom relief...I generally felt worse in the first couple of weeks, then good, then dropped again and I still haven't reached my good limit! It can also take several adjustments, giving each one 6weeks, it is a slow road but with your doctor who sounds fantastic (and who is very right about the endo approach) I think you will do just fine...just remember it is a slow road and you HAVE to be patient...I am still on that learning curve you want to aim for 60-80% in your frees and some even need to be higher but you will know yourself when symptoms improve what your own optimal level is....wish I had your doc good luck and keep us posted...hugs
P.s. do a search on Armour and other treatments for comparison purposes but I think you will find just about most people do well on it, also, check into the changes to its "make up" so you are comfortable with your information and well armed!

 
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Old 09-18-2012, 09:41 PM   #7
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Cool Re: New to the boards and really need some advice

Quote:
Originally Posted by Surfing4answers View Post
ARMOUR is very well received among many and you would probably do well on it (would love to be able to get it myself but cannot get it in oz unfortunately. In some of my reading I did hear changes have been made to it and some people found it better absorbed by chewing. Armour is a T4/T3 combi also as far as I know, there are possible side affects with everything, herbal/natural or synthetic and it will take approx six weeks before you will really know if there is symptom relief...I generally felt worse in the first couple of weeks, then good, then dropped again and I still haven't reached my good limit! It can also take several adjustments, giving each one 6weeks, it is a slow road but with your doctor who sounds fantastic (and who is very right about the endo approach) I think you will do just fine...just remember it is a slow road and you HAVE to be patient...I am still on that learning curve you want to aim for 60-80% in your frees and some even need to be higher but you will know yourself when symptoms improve what your own optimal level is....wish I had your doc good luck and keep us posted...hugs
P.s. do a search on Armour and other treatments for comparison purposes but I think you will find just about most people do well on it, also, check into the changes to its "make up" so you are comfortable with your information and well armed!
The doctor told me there are no side effects to the hormones drugs but after getting home tonight I just read that armour is corn starch binded and I'm allergic to corn. Lol so now I don't know if I should ask for something else. She originally wanted to give me synthroid but last night I read that if u have a grass and pollen allergy that you may be allergic to it so I asked her for armour and now I find out it has corn binders. I have major food, seasonal and drug allergies so it's rough! I'm highly allergic to wheat, corn, gluten, etc,.. My allergies suck! Thanks so much! Your knowledge and kindness is lovely!! Hugs!!!!

 
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Old 09-18-2012, 10:40 PM   #8
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Re: New to the boards and really need some advice

A compounding pharmacy can make you up a customized one which is tailor made to suit you, and use binding agents you are not allergic too and as far as I know they can do this with synthetic or the more natural dessicated one! Glad you looked into it Your allergies are very gluten/lutien etc based this is very common in hashi's and a lot go gluten free based on this as it affects the immune system of which about 80% is in the gut. I would def avoid ANYTHING you are allergic to, it would only give you more symptoms and make it hard to tell if it's your allergies or hashi's. There are other options but while compounding is more expensive, for you, it may be the only way to go!

 
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Old 09-19-2012, 07:58 AM   #9
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Re: New to the boards and really need some advice

Glad you are getting this taken care of. Isn't Armour more natural? I could be wrong about this. I read some place that Armour is a natural dessicated pig thyroid. As for me I'm on Levothyroxine. So far no side effects.

 
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