# Diagnosed with Hashi's-very tired



## Tired Mom (Mar 28, 2011)

I am 36 yrs old and was recently diagnosed with Hashi's AFTER first being diagnosed with Grave's last October. The meds were not working and RAI did not work. I had a total thyroidectomy March 4th of 2011. Both sides were hard as a rock, so hard in fact, the surgeon said he broke 3 or 4 needles trying to get the glands out. The day of my surgery, after the surgery my heart rate dropped to 41. It came back up 2 days after. I was feeling fine until this weekend. Now, heart rate back down and I am soooo tired I can barely keep my eyes open. My joints are killing me. I thought that after a total thyroidectomy that I would not have any symptoms...is this incorrect? The only reason we now know it is hashimoto's is the pathology report said so (it was sent for a second opinion which was the same result). How do I cope with being this tired? My endo said he is not going to do more blood work until the end of April...HELLO....I am thinking that obviously the dose of meds I am on is not doing the trick...any suggestions?


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> I am 36 yrs old and was recently diagnosed with Hashi's AFTER first being diagnosed with Grave's last October. The meds were not working and RAI did not work. I had a total thyroidectomy March 4th of 2011. Both sides were hard as a rock, so hard in fact, the surgeon said he broke 3 or 4 needles trying to get the glands out. The day of my surgery, after the surgery my heart rate dropped to 41. It came back up 2 days after. I was feeling fine until this weekend. Now, heart rate back down and I am soooo tired I can barely keep my eyes open. My joints are killing me. I thought that after a total thyroidectomy that I would not have any symptoms...is this incorrect? The only reason we now know it is hashimoto's is the pathology report said so (it was sent for a second opinion which was the same result). How do I cope with being this tired? My endo said he is not going to do more blood work until the end of April...HELLO....I am thinking that obviously the dose of meds I am on is not doing the trick...any suggestions?


What thyroxine replacement are you on and how much? You are lucky to be on any at all. Most have to suffer beyond hypo before the doc will even consider.

I do have a thought though. Have you had your ferritin checked? If low, you can be mighty tired and after what you have been through, it would not surprise me if your ferritin was not up to snuff.

Here is info on that and ferritin should be 50 to 100; the closer to 100, the better.

Ferritin http://www.thewayup.com/newsletters/081504.htm

I am sorry you are feeling so badly but really, it has not been that long since your surgery. I do hope you are resting and pampering? Or are you like most of us and had to go back to work ASAP?

Welcome to the board!


----------



## Tired Mom (Mar 28, 2011)

I'm on Levothyroxine 132 a day. I have no idea what my ferritin is. I have a follow-up with my endo on Friday. I will mention to him. I was able to take one week off work, the week after my surgery. Had to go back to work. I sleep my lunch hours away since I am NEVER hungry. I have to force myself to eat breakfast and dinner. I know it's going to take time, but geesh, let's get it going already...

Thanks for the ferritin advice! I never even knew about it. I will make sure doc checks into it. I am thankful for this board. It's nice to know, I'm not the only one!


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> I'm on Levothyroxine 132 a day. I have no idea what my ferritin is. I have a follow-up with my endo on Friday. I will mention to him. I was able to take one week off work, the week after my surgery. Had to go back to work. I sleep my lunch hours away since I am NEVER hungry. I have to force myself to eat breakfast and dinner. I know it's going to take time, but geesh, let's get it going already...
> 
> Thanks for the ferritin advice! I never even knew about it. I will make sure doc checks into it. I am thankful for this board. It's nice to know, I'm not the only one!


You are on a good dose of thryoxine replacement which further raises my suspicion about the Ferritin.

Plus, you have been through hell and back w/no rest to boot!! Been there and done that. I never missed a day of work through out my entire ordeal except when I had to have orbital decompressions for my eyes.

I do understand and so do many others who are posting here.


----------



## Tired Mom (Mar 28, 2011)

Thanks for the support. I will mention to him on Friday!


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Thanks for the support. I will mention to him on Friday!


And please do let us know. We need to get you up and running!


----------



## Tired Mom (Mar 28, 2011)

I will keep in touch! Again, thanks!!!


----------



## Tired Mom (Mar 28, 2011)

Ok. Just got back from endo. He upped my dose of synthroid to 137 daily. He said all my other blood work was fine. He does not believe my ferritin is low, but he said he will check it in 4 weeks when we do more blood work. Hope this all works out quickly!!!!


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Ok. Just got back from endo. He upped my dose of synthroid to 137 daily. He said all my other blood work was fine. He does not believe my ferritin is low, but he said he will check it in 4 weeks when we do more blood work. Hope this all works out quickly!!!!


I hope he is good at his word re the ferritin lab work. When doses of thyroxine replacement are perpetually titrated upwards w/no improvements, one has to start to think outside of the box and look elsewhere's for answers.

How are you feeling? Let us know how you do on the increased dose. You did say in previous you were on 132 mcg.; was that a typo? 137 mcg. would not be much of an increase.


----------



## Tired Mom (Mar 28, 2011)

Feeling run down. Muscles hurt all the time and just very tired. I was originally on 88 and when my heart rate started dropping this week Wednesday, they put me on 132. He suggested that we do it step by step which is why he did not increase it that much. He said my levels were low (I didn't ask about the numbers, I have a hard time reading them and understanding them). I did take his word for it. He seems to be a good doc and really listens to me. He said we would check again in 4 weeks. I will tell you know if I don't start feeling better in 2 weeks, I will call him every day and bug him until he checks the ferritin levels or I will find another doc. This stuff is so confusing to me. I try to understand it, but cannot. I was also diagnosed with RA today...


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Feeling run down. Muscles hurt all the time and just very tired. I was originally on 88 and when my heart rate started dropping this week Wednesday, they put me on 132. He suggested that we do it step by step which is why he did not increase it that much. He said my levels were low (I didn't ask about the numbers, I have a hard time reading them and understanding them). I did take his word for it. He seems to be a good doc and really listens to me. He said we would check again in 4 weeks. I will tell you know if I don't start feeling better in 2 weeks, I will call him every day and bug him until he checks the ferritin levels or I will find another doc. This stuff is so confusing to me. I try to understand it, but cannot. I was also diagnosed with RA today...


Thank you for clarifying that on the dosage amount and when it was changed. Good!

How did you get diagnosed with RA? Antibodies?

You are doing great in the "understanding" department. It is difficult when you are ill and you have to advocate for yourself. Very difficult. It just makes your head spin.

I have been in that place.


----------



## Tired Mom (Mar 28, 2011)

Yes. I was diagnosed by antibodies, besides the fact that my sister has it as well. I am trying to understand everything. It is mind boggling...and having to work every day in a law office is not helping...LOL...I feel like passing out when I get home half the time. I know it will get better and my sister has had her thyroid removed so she is helping me through this. She understands most of it, but she does not have Hashi's. I am thinking about switching to her endo. Apparently he is one of the best in my area...St. Louis. I actually went to him for a second opinion when all of this started. He seems pretty down to earth and is willing to give out his email address for any questions. My endo said he would not give me his email, I just have to call. I pray it gets better soon. Thanks for your support. I really appreciate it!!!


----------



## CA-Lynn (Apr 29, 2010)

Your exhaustion may be stemming mostly from the RA. What treatment plan is scheduled for that? Do you have a good rheumatologist?


----------



## Tired Mom (Mar 28, 2011)

CA-Lynn, I was just diagnosed and there is no treatment plan as of yet. My sister has a rhumatologist for her RA and I will probably see him. Right now, it's not so bad that I can't handle it, so I'm figuring that I will wait awhile and see how I feel for the next couple of weeks.


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Yes. I was diagnosed by antibodies, besides the fact that my sister has it as well. I am trying to understand everything. It is mind boggling...and having to work every day in a law office is not helping...LOL...I feel like passing out when I get home half the time. I know it will get better and my sister has had her thyroid removed so she is helping me through this. She understands most of it, but she does not have Hashi's. I am thinking about switching to her endo. Apparently he is one of the best in my area...St. Louis. I actually went to him for a second opinion when all of this started. He seems pretty down to earth and is willing to give out his email address for any questions. My endo said he would not give me his email, I just have to call. I pray it gets better soon. Thanks for your support. I really appreciate it!!!


Sounds like you really need to hook up w/your sis' rheumatologist!! As you now know, finding someone to assist you in getting better is mighty hard to do.

I think that might be a good move for you!


----------



## CA-Lynn (Apr 29, 2010)

You need to see a rheumatologist now. Not later. The earlier you start treatment, the faster you halt the disease from progressing and chipping away at your joints. Once the damage is done, it's done. Point of no return. In short, the sooner you start medication, the faster it will be to control the disease than if you wait until it really gets bad.

You cannot reverse RA. You can only halt the progress.


----------



## northernlite (Oct 28, 2010)

100% agree with CA-Lynn about treating the RA now. I am fortunate not to have it but both my brothers have RA. First one did nothing initially because he did not have health insurance and has permanent joint damage in his hand. Second one jumped on it agressively and insisted on stepping up medications as necessary and has no permanent joint damage 10 years after diagnosis.

I know there are newer and better medications for RA hitting the market every day but both brothers are Enbrel users and swear by it. Second brother started it first and it worked so well for him that the first one insisted his dr RX it and it worked well for him also.


----------



## Tired Mom (Mar 28, 2011)

I will be getting together with my sister next weekend. She has given me the phone number to her RA doc. I think I am going to switch to her endo doc as well. I have met them both going to appointments with her. She has lots of docs. She also has Cystic Fibrosis and CF related diabetes. She has more health issues than I can imagine, so I guess I could say I'm the lucky one as my younger brother has Cystic Fibrosis as well. Anyway, thanks for the advice. I will make an appt with RA doc to get treatment going!!! God Bless.


----------



## CA-Lynn (Apr 29, 2010)

That's good news, Tired Mom.

There's an advantage of going to your sister's doctors: they can compare the two of you. Just because one has a disease doesn't necessarily mean the other will get it, but if the other one does, then it's very likely that you won't have to juggle treatments to find out what works......you'll probably be prescribed the same medication your sister is on [since it apparently works for her].

A word about rheumatology drugs: some insurance plans require that you meet a certain criteria before you're eligible for a drug. They use a "step" approach. Again, not all insurance companies use this criteria.

In any case, I wish you well.


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> I will be getting together with my sister next weekend. She has given me the phone number to her RA doc. I think I am going to switch to her endo doc as well. I have met them both going to appointments with her. She has lots of docs. She also has Cystic Fibrosis and CF related diabetes. She has more health issues than I can imagine, so I guess I could say I'm the lucky one as my younger brother has Cystic Fibrosis as well. Anyway, thanks for the advice. I will make an appt with RA doc to get treatment going!!! God Bless.


Oh,my goodness!! And God bless all of you! Gosh, this really is familial, isn't it?

We are here for you. However we can help, you can count on it.


----------



## Tired Mom (Mar 28, 2011)

CA-Lynn, thanks for the advice regarding insurance. I will have to look into that!

Andros...it's been chanllenging growing up with the two of them to see what they have to go through. I always wished I could take it from them, but I can't. I know my problems are minor, but I have been so health my entire life, this is kinda scary in some ways to me. I will be okay, they will not. I always have said, God will not give you anything you cannot handle. I can handle this. Thanks for everyones support!!!!


----------



## Tired Mom (Mar 28, 2011)

Well, after several months of not being able to go to Zumba class, I sucked it up and went last night. It was the best thing I could have done. I felt really good after the class! I was tired, but felt good, you know what I mean. I think I am slowly getting back on track. I think things are starting to look up! I actually signed up to become a Zumba instructor! I take my certification in June. Doc said I should be better long before then, so I am gonna do it. I am not going to let any of this get me down! God Bless!!!


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Well, after several months of not being able to go to Zumba class, I sucked it up and went last night. It was the best thing I could have done. I felt really good after the class! I was tired, but felt good, you know what I mean. I think I am slowly getting back on track. I think things are starting to look up! I actually signed up to become a Zumba instructor! I take my certification in June. Doc said I should be better long before then, so I am gonna do it. I am not going to let any of this get me down! God Bless!!!


Holy cats! You go, GF!! I am so proud of you! Boy, do I ever like to exercise! I love the way it triggers the endorphins and I feel so good and you will too.

You are going to be a great motivater and instructor!! Will you be teaching class through your local gym?

You will be better; every single day is going to be better. You will make it so.


----------



## Tired Mom (Mar 28, 2011)

Thanks Andros!!!!I will start teaching in July at our Family Sportsplex here in town. My instructor has offered me a job with her company!!! I've been doing Zumba with her for over a year now...took a couple months off due to not feeling well in Feb. and March, but it's time to get back in the game...full force! I'm so excited and my doctor said it's a good thing to do. It will only be 2 nights a week to start off with, then mabye go from there! When I went to class on Wednesday I felt soooooo good inside!!! I know that is what I need to do. Zumba is good for me...makes me happy inside and out!!!! I know now I am meant to be an instructor and eventually get away from my boring desk job at the law office!!! I will start my classes and hopefully quit my day job at the end of this year!!!! I love to motivate people and Zumba is a great start to getting people healthy again. I started over a year ago and lost 22 lbs...LOL...with the help of the thyroid issues..hehe

Working out is good for EVERYONE!!! Even if it's just a walk around the block!


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Thanks Andros!!!!I will start teaching in July at our Family Sportsplex here in town. My instructor has offered me a job with her company!!! I've been doing Zumba with her for over a year now...took a couple months off due to not feeling well in Feb. and March, but it's time to get back in the game...full force! I'm so excited and my doctor said it's a good thing to do. It will only be 2 nights a week to start off with, then mabye go from there! When I went to class on Wednesday I felt soooooo good inside!!! I know that is what I need to do. Zumba is good for me...makes me happy inside and out!!!! I know now I am meant to be an instructor and eventually get away from my boring desk job at the law office!!! I will start my classes and hopefully quit my day job at the end of this year!!!! I love to motivate people and Zumba is a great start to getting people healthy again. I started over a year ago and lost 22 lbs...LOL...with the help of the thyroid issues..hehe
> 
> Working out is good for EVERYONE!!! Even if it's just a walk around the block!


You will in effect create your own employment situation. I see you being so good that your class will be in high demand. You are going to be one busy and very fit person! Whooooooooooooooooooohoo!!!


----------



## Tired Mom (Mar 28, 2011)

Thanks! I'm starting to feel pretty good, although....my hair is still falling out. Why is that? If I'm feeling better, doesn't that mean that the synthroid is working? If so, then why in the world is my hair still falling out? I'm not complaining by any means, I just don't understand. Wonder if I should take some vitamins...


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Thanks! I'm starting to feel pretty good, although....my hair is still falling out. Why is that? If I'm feeling better, doesn't that mean that the synthroid is working? If so, then why in the world is my hair still falling out? I'm not complaining by any means, I just don't understand. Wonder if I should take some vitamins...


Please check your ferritin. It should be 50 to 100 and the closer to 100, the better.

Ferritin http://www.thewayup.com/newsletters/081504.htm


----------



## CA-Lynn (Apr 29, 2010)

I totally agree about the exercise. I have several autoimmune diseases, mostly arthritic, and when I stop walking any distance I feel rotten. It's not just the exercise. For me it's being outdoors, the fresh air, watching the flowers in bloom, watching my little dog sniff every blade of grass.


----------



## Tired Mom (Mar 28, 2011)

Thanks Andros. I go in a week and a half to get more blood work done. CA-Lynn, I think exercise is the only way to go! I LOVE being outside and now that sailing season is approaching I will be outside more! I can't wait to get the boat back inthe water and feel the wind blowing on my face!!! Have a godd day all!!!


----------



## Tired Mom (Mar 28, 2011)

Morning everyone...
Bloodwork came back. Doc said my dose is too high. I was taking 137mcg...he is lowering to 112...
The nurse said the following:
TSH 0.05
T4 2.24
Calcium 2.40
Ferritin 80 something...forgot to write it down....


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Morning everyone...
> Bloodwork came back. Doc said my dose is too high. I was taking 137mcg...he is lowering to 112...
> The nurse said the following:
> TSH 0.05
> ...


Well...................wait a tick! What does the doctor mean your dose is too high?

The only way to know that is to run TSH (which he did), FREE T3 and FREE T4.

And ranges would help a lot as different labs use the same ranges.

Total 4 is bound and unbound; that leaves the person wondering how much is unbound and available for cellular uptake and conversion to FT3 which is your active hormone.

Good for you on the ferritin. That is exceptional; keep it there.


----------



## Tired Mom (Mar 28, 2011)

Unfortunately this is the only info the nurse gave me. I didn't ask too many questions. I will have them fax a copy of my labs to me tomorrow. I don't even know what normal range is for anything except for the ferritin...which you told me about. My surgeon told me that the insomnia will take a few months to go away...boo...my endo just said he was lowering my dose of synthroid...

Amanda


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Unfortunately this is the only info the nurse gave me. I didn't ask too many questions. I will have them fax a copy of my labs to me tomorrow. I don't even know what normal range is for anything except for the ferritin...which you told me about. My surgeon told me that the insomnia will take a few months to go away...boo...my endo just said he was lowering my dose of synthroid...
> 
> Amanda


Amanda..................please let us know as soon as you get those labs. And we do need the ranges as well.

Let me ask you a question! Do "you" feel the doc should have lowered your Synthroid?


----------



## Tired Mom (Mar 28, 2011)

I will get them today. I feel pretty darn good. My sister, who has been going through this for years, said she was surprised he is lowering my dose. She uses the same lab as I do and she said my TSH and T 4 were fine. As soon as I get it I will post it. I'm happy again and feel better than I have in a long time. I hope this doesn't screw that up is all I can say...


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> I will get them today. I feel pretty darn good. My sister, who has been going through this for years, said she was surprised he is lowering my dose. She uses the same lab as I do and she said my TSH and T 4 were fine. As soon as I get it I will post it. I'm happy again and feel better than I have in a long time. I hope this doesn't screw that up is all I can say...


That's the thing. If you feel fine and labs are good, why lower the dose?


----------



## Tired Mom (Mar 28, 2011)

Ok. Here it is-He checked TSH and Free T4, Ferritin, and Calcium

Ferritin 87
Calcicum 2.24 Normal 2.15-2.55
TSH 0.05 Normal 0.27-4.20
Free T4 2.24 Normal 0.93-1.70

When I called he said that I would "feel even better" once we get the numbers in normal range. He said my Free T4 is too high and wants it between normal levels. He said that my feeling good at this point is just feeling better from feeling like crap for so long (I haven't felt "normal" for a long time) He said I will feel like I will have more energy once we get it "normal." Any suggestions?

Amanda


----------



## Andros (Aug 26, 2009)

Tired Mom said:


> Ok. Here it is-He checked TSH and Free T4, Ferritin, and Calcium
> 
> Ferritin 87
> Calcicum 2.24 Normal 2.15-2.55
> ...


Your Free T4 is high but that could be because it is not converting to FREE T3 which is your active hormone.

I really think a Free T3 test would be in order here to know for certain if you are converting or not. If you are and FREE T3 is high in the range, then yes, your med would have to be cut down a bit.

But, I don't like going on supposition. Your doc is making the call that because your FT4 is over the top of the range that your FT3 is too.

Not knocking your doc mind you; we are just tossing the ball back and forth here.


----------



## Tired Mom (Mar 28, 2011)

Andros,
Thanks for the input. My sister said the same thing. Docs in my area are ALL like that---EXCEPT for my surgeon that performed my thyroidectomy. He is a friend of my husbands and NEVER leaves a stone unturned...anyway, I'm wondering if I should call my endo and have him do the FreeT3 or wait the 4 weeks and see what the next labs show...what to do, what to do...

Amanda


----------

