Jeannie McClelland

Hypothyroidism

15 posts in this topic

Greetings everyone,

 

How about some tips about hypothyroidism and Synthroid? Anything any of you think is especially important to be aware of?

 

Autoimmune hypothyroid has just been add to my list of diagnoses. Does this mean that once the Synthroid kicks in, I'll get warmer (we have had snow flurries today), less tired (Yawn~), and skinnier?! Wow, that would be wonderful~ tongue.gif

 

 

Warm regards,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Now wait a minute Jeannie no one round here's gettin' skinny before me! Why do ya think I'm wearing a ball gown?! Seriously we sclerodermians do tend to collect illnesses and I hope your new one is not too troublesome and that the medication provides added extras like weight loss, more energy etc etc. As for me, well my avatar will soon be a well known blimp if I keep gaining weight at the current rate! :lol:

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Jeanine, I wish I could give you more positive information regarding results you should expect from treatment for your hypothyroidism. what I can tell you is that my main medical diagnosis is CREST(diagnosed in 2003), but among many other medical problems I also have hypothroidism, for which I have been on levothyroxin for about 3 years, Although I usually feel warm(in normal temperaures anyhow), I'm not sure if its because of the treatment for the thyroid. I can't really say it has helped with my fatigue, because I still sleep a lot, and feel sleepy most of the time. The fatigue from this disease is probably one of my worst everyday problems at this point with this disease for me and would be more than grateful if the thyroid medicine would make me less tired. I have heard that if you have an untreated hypothyroid, that it will cause fatigue, so perhaps when your new medicine becomes therapeutic it will help you. I only wish I knew a way to decrease the awful fatigue I have. I will keep my fingers crossed for you. And as far as making you skinnier, sorry I'm not needing to lose weight, but have heard that the untreated disease will affect ones weight, so I'm not sure if it will or does help in that way. Good luck, I hope it does help you all the way around. In a few weeks let us know if you've noticed what if any therapeutic affects, I would be interested to know. Its also interesting to hear you call it autoimmune hypothyroidism, as I had never heard it termed that way. I assumed I had the hypothyroidism due to genetics, being my mom and sister also have it, and neither of them have any autoimmune disorder.

 

Patty

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Hey Jeannie,

 

I had my thyroid removed in 2002 due to a nodule they couldn't determine whether it was cancer or not. Even a FNB wasn't conclusive. So, they ended up taking the whole thing out. It is a piece of cake as far as helping regulate your thyroid. However, you will probably need to play around with doses till you get it "right". Also stay on the name brand..... the generic is different. And still having a thyroid, means some times the amount your body makes will change so the dose will too.

 

Carol

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I have been on Synthroid for a few years now and just switched to the generic. I have not had any issues with either, but will have somne blood work soon and will know better if the generic caused any changes. I started taking Synthroid before the sclero diagnosis so I can't say that it will help warm you up, but if you ever miss doses you will know. Somehow I forgot a couple of doses a week ago and it cause palpitations.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Jeannie,

 

I have Hashimoto's, as well. I was on synthetic thyroid (Synthroid, Levoxyl) for many years, but to no avail. I finally switched to dessicated thyroid, and my goodness, then I instantly felt better, almost like a light bulb turning on inside. Some people just aren't able to convert T4 to T3, which the synthetics rely on, and I am apparently one of those people.

 

At that point, I didn't lose any significant amount of weight, but at least I quit gaining despite every sort of dieting effort. But you know, the important point is that I felt a bit better. It didn't have an effect on my relapsing fatigue (after I exert, physically or mentally) but it did have an effect on my baseline fatigue, making everything a little bit more manageable.

 

Now before you rush off to get dessicated thyroid, there is an enormous nationwide 3-month back order on it. Luckily I heard about it within hours (thanks to the internet) so I have my three month supply on hand. But many of those who rely on dessicated thyroid are kind of in the lurch right now.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Jeannie ,

 

We found out in May that Gareth's thryoid had shut down and they put him on generic synthroid. He insists on wearing long sleeve shirts (in 70 degree weather) because he's cold but the kid is sweating bullets at the same time. He's also more tired than before the thryoid med.....go figure. The doctor says the blood work is normal now, so I really don't understand the sweating and tiredness.

 

Take care, Everyone.

Margaret

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Hi,

 

I was diagnosed with hypothyroidism a few years back. They didn't mention if it was due to sclero. I'm on a natural thyroid combo that addresses both T3 and T4. I was so excited at first LOL thinking maybe I'd lose weight, but it really didn't work for that. From my understanding you have to be on fairly high doses for weight loss and then if that happens you're probably on too high of a dose! :(


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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And, oh duh, here is the link to our section on Hashimoto's Thyroiditis. Mary Shomon on About.com, which is linked on that page, is an exceptionally good resource for thyroid patients, even including a section on why it is so difficult to get diagnosed with hypothyroidism in the first place.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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OK - that's it. No more diagnoses for you. As the insurance company would say - You have reached your lifetime limit.

 

I have a good thyroid as far as I know, so I can't help with advice or experience, but, as always with this forum, you are getting some great advice. I hope this new disease doesn't' create any major symptoms for your and reduce your QOL any more than the sclero has already done. Hang in there Darlin! Stay warm and stay happy in spite of it all.

 

Big, big hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Well, I was diagnosed with sclero 3 years ago. I started with hyperthyroidism (Graves disease)33 years ago, they treated with radioactive iodine which immediately put me into hypothyroidism. I've been on eltroxin for 32 years. I have raynauds and it doesn't help that at all. I'm always cold. As for weight....I can't say that it helps any. Hypothyroidism I believe is an autoimmune disease. I know that if I go off the meds, I get into trouble. Fatigue, even more than "normal" and I use that word loosely. And just feel lousy. So I have learned to not go without it. Hypothyroidism can be serious. With everything else going on (also have polymyositis) I don't know what works and what doesn't anymore. How do you tell one from the other? I don't know. Wish I could be more helpful and hopeful....good luck and by all means let us know what effects you notice, once you're into the treatment. - Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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Thanks for all the info! Now another question: who would you go to for your follow-ups, an endocrinologist or your general practitioner?

 

By last night I was feeling really shaky, completely exhausted, and was having what I thought was an anxiety attack. Too much or too little Synthroid? This morning after taking the pill, I feel fine. If I get the wobbles again this evening, do I give my rheumatologist (the prescribing doctor) a call?

 

Amanda, if I get skinny, I'll share it with you, somehow! Right now I'm still in the process of fattening up for winter. Completely involuntarily, I must add. laugh.gif

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I saw an Endocrinologist until my thyroid levels were stabilized. Then my primary kept up with the ordering/reviewing of the labs. However, they have just referred my back to the Endo due to my vitamin D levels. I never experienced the shakes with taking the Synthroid so I would definitely call the prescribing doctor if it happens again. They may need to adjust the dosage.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi Jeannie,

 

I just have my internist manage my thyroid levels. Rheumatologists generally have better things to do than get into tweaking thyroid dosages all the time. I did see an endocrinologist when I was getting diagnosed with Hashimoto's but for me, that was all I felt necessary, as internists are usually quite well versed in handling it. At least, all mine have been.

 

Shaky might mean you had too much thyroid...or too much caffeine or an actual anxiety attack. Keep an eye on it, of course.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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