Hypothyroid SOS

wlorenm

Okay he initially fobbed me off with a "retest in 3months and monitor it" until I cried so now he's referred me to an endocrinologist.

My serum free t4 result came back at 11.9 pmol/L (12-22)

No idea what that means though.

erinewert

So I see someone else already posted about Hashimoto's Disease. The symptoms you stated, I lived with for 12 years before I was given the okay by my insurance to see an Endocrinologist! I would have your doctor test specifically for that, if it is that you can get on the right track. Hashimoto's can lead to type 1 diabetes and many other debilitating issues. When I was diagnosed my TSH was 17 and my T4 was 0.9 and my t3 was 4.7 but they didnt care to much about those because for the most part it wasn't alarming until my T-lymphocytes were 800X the normal limit <---which is hashimotos. That may be something you want to look into.

shoeloveramber

Go to the About.com website on thyroid. Mary Shoman is the one that runs it and you will find all the information you need there including a list of tests you should have done. Take that list to the doctor with you and insist they do ALL of them. She also has a list of doctors who are known to be good doctors that take the time to treat your condition properly.

Look on Facebook for a group called "Thyroid Sexy" it is a great group that has all kinds of information on it you would benefit from. In addition you can ask questions of the group on there and get answers from knowledgeable people that can really help you learn how your thyroid works and how the medication works with it, etc. It is run by Gena Lee Nolin and a couple of assistants and it is a lifeline for many people. Mary Shoman also has a great group on there. Join both groups, read the notes and various posts.

Most importantly educate yourself before your appointment. You are your best advocate and only you know how you feel. If you are educated you will understand more and be able to have an intelligent conversation with the doctor about the tests, results, etc. If you know nothing they will not take you seriously and you will not be able to get the best treatment. It might take going to a few doctors to find one that will work with you but it is worth the time it takes!

thatredheadedBAMF

A couple of things:

The updated TSH reference ranges define normal as 0.3-3.0. I am treated at UCLA and they use this reference range. It was updated in 2003 via a recommendation from the American Association of Endocrinologists (AACE).


GOITER is when you have an enlarged thyroid. An enlarged thyroid is called a goiter. You can only have one goiter unless you have more than one thyroid for some reason. NODULES are growths on the thyroid. You can have multi-nodular goiter with Hashimoto's Disease. Multiple nodules are very common as part of the auto-immune process and many of them will shrink and disappear once you are on a proper dose of thyroid replacement hormone.

It's important you are using the correct terms if you want to be taken seriously.

Your serum T4 is low, which means you need more T4. I hope the endo can help you! Suffering like this is awful. I've been there.

Kalikel

Here's my opinion on a single TSH reading: Oh, please.

Total BS. I don't even know why they do that. I really don't. Over the years, I bugged the bad doctors about my hypo, They'd run a tsh and said I was fine. I was not. Not by a longshot.

I had all the hypo symptoms. I has them on spades. Still, bad doctors missed it and even told me I should stop coming in about that. More suggestions to eat better and exercise. As if that would stop my hair from falling out. Don't know if they were stupid or lazy, but they were bad at their jobs and I suffered for decades because of it.

Get a referral to an endocrinologist. They know how to find thyroid problems.

Having my thyroid removed and getting the pills was the greatest thing that ever happened to me after my son.

krennie8

you really need a higher dose. Nobody feels good at 3.8, imho. Healthy people should be 1-2, really.

Kalikel

Hi,
So 3.8 is NOT okay on labs that have the updated TSH reference range. And if you still feel bad, it doesn't matter what the numbers say: you need more T4. It doesn't bode well when a doctor is treating a number instead of the person. If you doc is also old (as in close to or over retirement age) and male, you are probably not going to get very far with this.

Questions for your doctor:
-Why is the lab he/she uses still using the outdated reference range for TSH?
-Has he/she checked for anti-thyroid antibodies to see if you have Hashimoto's Disease?
-Request a thyroid ultrasound.

Note that the anti-bodies generated by your immune system with Hashimoto's can make you feel even worse. There have been studies that show a lower TSH in this population is helpful for resolving those symptoms. Also, Hashimoto's is a risk factor for thyroid cancer, so getting a thyroid ultrasound is even more important.

Note that if you ask if you should be on more T4, they will likely give you excuses about cardiovascular risk, a heart attack, blah blah blah. Thyroid cancer survivors are on doses of T4 so high that they are clinically hyperthyroid. In those without concurrent cardiovascular issues, there is no increased risk of death from a cardiovascular event in that population. My point is that bumping you up to the next dose isn't going to give you a heart attack, so that's a b.s. excuse.

I'll take all this info with me definitely.
Symptoms I have are Goitre, tired, hair loss and damage, dry legs and shins, no energy, I eat once a day and I'm still gaining weight, total disinterest in some things, snappy and frustrated, hard to concentrate at times, digestive issues, so cold and heavy menstrual cycle ( after it came back after 5months).

I am miserable

If you have been diagnosed with a goiter, that means your thyroid is big. There's a freaking reason for it.

I'm telling you, getting it fixed (in my case, just removed because I couldn't freaking breathe!) was the best thing that ever happened to me,

GET THE REFERRAL to see an endocrinologist. If they won't give it to you, get another doctor (and another and another, if you have to) until you get the referral.

Mine was so damn big they couldn't even get pictures of all it with an ultrasound. Even "double screening" (whatever that is) wasn't enough. I had SO MANY appointments and tests once they found it, trying to get pictures. The CT that included the chest was the best, but the surgeon came into my room the day after the surgery and I said (whispered), "I can breathe!" He was like, "I BELIEVE you had trouble breathing!" And then started going on about how big it was, how hard it was to get out and how long it took.

The thing was huge. It didn't work. So big, it pushed my trachea over and grew down and pushed on my lungs. HUGE.

And the doctors never caught it, even when I went in and said, "I have ALL of these symptoms."

They suggested diet and exercise. Sent me to idiot nutritionists who also didn't listen and suggested dietary changes.

Screw them.

Go see an endo!!!

wlorenm

Thank you all so much!!! I left the doctor with a referral to an endo in hand!!!!

I was persistent and I am so so so ready to get this sorted. Will be going private to get the ball rolling as quickly as possible. My doctor is just scratching his head at this...
One healthy meal a day and an hours exercise and I've gained 10pounds.

He suggested more diet and exercise - then I gave him my food diary and told him my exercise regime. When he realised there's literally nothing more I can do myself, he rechecked the lump in my throat and wrote the referral.

You have all been so so so amazing and I thank you all so much. I'm hoping to have a consultation by the end of the week.

Kalikel

Thank you all so much!!! I left the doctor with a referral to an endo in hand!!!!

I was persistent and I am so so so ready to get this sorted. Will be going private to get the ball rolling as quickly as possible. My doctor is just scratching his head at this...
One healthy meal a day and an hours exercise and I've gained 10pounds.

He suggested more diet and exercise - then I gave him my food diary and told him my exercise regime. When he realised there's literally nothing more I can do myself, he rechecked the lump in my throat and wrote the referral.

You have all been so so so amazing and I thank you all so much. I'm hoping to have a consultation by the end of the week.

Excellent.

They love to say, "If you eat less than you use up, you lose weight!" Nutritionists, too. I kept a food log and they asked if I was sure I didn't forget things.

I'm still a little bitter over all the years I went back and forth with incompetent doctors. Can ya tell?

So happy for you. Mid there is a thyroid problem, the endo will find it!

Good luck!