Hypothyroid SOS
wlorenm
Posts: 37
So my thyroid results just came back as a "satisfactory" level. The TSH level was 3.8 but I still have a mass of symptoms. I have a consultation to discuss on Monday. What do I do or ask or investigate on Monday?!
Any help would be mega appreciated.
Any help would be mega appreciated.
0
Replies
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Perhaps -- bring in a list of symptoms, medication, things that work, . . . .
As for talking -- sometimes you can only focus on two or three big things in one appt.0 -
There's a group here on MFP for Hypo/Hyperthyroid. They might be able to help you.
http://www.myfitnesspal.com/groups/home/753-hypothyroidism-and-hyperthyroidism0 -
Your bloodwork may be normal, but your thyroid/dosage hasn't caught up yet.
The unfortunate thing about thyroid hormones is that it's all a bit of a waiting game. You could have gotten perfectly normal levels, feel shirlitty... than feel fine in a month as your symptoms alleviate. Blood level readings for hormones are quicker to change and fluctuate.
Let your doctor know how you're feeling, but in general, it may be a waiting game. Make sure your T3 and T4 are also normal, as well. I suggest seeing an endo if you're not already.0 -
Have him/her go over each result and explain everything so you understand. If there is no real disease diagnosis request to see a nutritionist or if available at medical or hospital overseen weightless program. There are a lot of these around because of all the bariatric surgery being done, but they also just council people on weight loss and exercise. I'm doing one and my insurance pays for it completely. Good luck.0
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Also what else were you tested for? You may may be deficient in vitamin D and/or iron. Selenium is also essential to breaking T4 to usable T3. So even with TSH levels being normal you may still have symptoms.0
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I was highly anaemic and he's retesting that. But it doesn't explain the swollen thyroid gland, weight gain, dry weak hair, dry skin amongst a number of other symptoms. I'm so frustrated. I'm living on one healthy meal a day and still gaining?!0
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I was highly anaemic and he's retesting that. But it doesn't explain the swollen thyroid gland, weight gain, dry weak hair, dry skin amongst a number of other symptoms. I'm so frustrated. I'm living on one healthy meal a day and still gaining?!
Swollen gland?! Did they do an ultrasound?0 -
I was highly anaemic and he's retesting that. But it doesn't explain the swollen thyroid gland, weight gain, dry weak hair, dry skin amongst a number of other symptoms. I'm so frustrated. I'm living on one healthy meal a day and still gaining?!
Swollen gland?! Did they do an ultrasound?
No he just examined it manually and conducted the bloods?0 -
Check out this website, http://www.stopthethyroidmadness.com/.0
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What "bloods", what tests? TSH is not enough. You could have Hashmoto's but you need a thryoid antibodies test to confirm or refute that (FYI most cases of hypothyroid are Hashimoto's but many Doctors routinely won't do antibody tests unless you ask). Is it important to know? Yes, Hashimotos is progressive, it is like fibrosis of the thyroid and gets worse over time. They should also be checking your free T4/T3 and thyroid uptake since you have symptoms.
There is a school of thought that says if you have a very low dose of thyroid hormone (say 25 mcg/day) it can delay the onset of serious Hashimotos symptoms.
You may need a better Doctor, I have Hashis and can tell you from experience the good Doctors who really know their stuff with thyroid issues are few and far between. Most just give the TSH test and if you go over 4 (or some even 5) give you Synthroid, and that is the best you get....there is much better to be had, but not easily found.
ETA, when you have Hashi's you can be symptomatic, but not out of range, most Doctors won't treat until you are out of range, and by then you can be feeling really bad...be proactive. At least get tested once per year so you don't spend too long hypo without medication.0 -
I had the same problem. Even after testing normal for 3 tests (6-8 weeks between testing) I still felt like hell. Turns out I developed a problem with gluten. Once I cut that out, I felt like a brand new person, and was able to lose the weight I gained and then some, been able to keep it off, and even had my dosage lowered because once I lost more than 15 lbs my dose was too high. I suffered for a year following Radioactive Iodine treatment and became hypothyroid until I cut out gluten. My endocrinologist suggested the possibility when I complained at my one year checkup post RAI that not only did I NOT feel better, I felt worse and I was losing my hair on top of it. Cutting out gluten was the hardest and best thing I did in my life.0
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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.0 -
What are the new reference ranges for tsh, t3, and t4?0
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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
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What "bloods", what tests? TSH is not enough. You could have Hashmoto's but you need a thryoid antibodies test to confirm or refute that (FYI most cases of hypothyroid are Hashimoto's but many Doctors routinely won't do antibody tests unless you ask). Is it important to know? Yes, Hashimotos is progressive, it is like fibrosis of the thyroid and gets worse over time. They should also be checking your free T4/T3 and thyroid uptake since you have symptoms.
There is a school of thought that says if you have a very low dose of thyroid hormone (say 25 mcg/day) it can delay the onset of serious Hashimotos symptoms.
You may need a better Doctor, I have Hashis and can tell you from experience the good Doctors who really know their stuff with thyroid issues are few and far between. Most just give the TSH test and if you go over 4 (or some even 5) give you Synthroid, and that is the best you get....there is much better to be had, but not easily found.
ETA, when you have Hashi's you can be symptomatic, but not out of range, most Doctors won't treat until you are out of range, and by then you can be feeling really bad...be proactive. At least get tested once per year so you don't spend too long hypo without medication.
I'm not sure what blood tests they were yet. It was all before I came on here to ask or find out what I should be tested for or looking for. He looked at my iron and it was highly anaemic. Then he took a liver and kidney function test and a thyroid test but I'll be able to know more on Monday!!!
So worried hell shrug me off.0 -
I just skimmed other replies so I'm sorry if this is duplicating anything.
I was the same way and did some research. A lot of people that test normal but are still symptomatic, don't convert inactive T4 to active T3 very well so I talked to my doctor and she agreed that I should try Cytomel which is a synthetic T3. It has made all the difference in the world.
Also, IF you have an intolerance to something like dairy or gluten, avoiding it can help. If you don't have an intolerance already, avoiding such foods is unlikely to help. Thyroid issues are typically the result of an auto immune disease and it can be triggered by all kinds of things. My doctor told me that she had a 50 year old patient that had hypothyroid symptoms show up as a result of having salmonella.0 -
Also, you may want to increase your iodine consumption (regular table salt and some fish will do it).0
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I just skimmed other replies so I'm sorry if this is duplicating anything.
I was the same way and did some research. A lot of people that test normal but are still symptomatic, don't convert inactive T4 to active T3 very well so I talked to my doctor and she agreed that I should try Cytomel which is a synthetic T3. It has made all the difference in the world.
Also, IF you have an intolerance to something like dairy or gluten, avoiding it can help. If you don't have an intolerance already, avoiding such foods is unlikely to help. Thyroid issues are typically the result of an auto immune disease and it can be triggered by all kinds of things. My doctor told me that she had a 50 year old patient that had hypothyroid symptoms show up as a result of having salmonella.
The absolute nightmare I'm going to have is being in the UK. America seems so much more on the ball about it. It's just so frustrating. I'll get a print out of my bloods tomorrow and post them when I get them.
Going out of my head.
I eat fish so so much but I'll see about increasing the iodine. Hopefully my doctor will give me answers tomorrow - he's been open minded so far so I'm praying he won't just slap a normal label on my TSH and leave it at that.0 -
any chance you also had your vit D checked? I thought it was my thyroid meds being low but actually my vit D was REALLY low. I feel heaps better after 3 weeks on supplements0
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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 a Goiter, then you have Hashimoto's and your Thyroid antibodies are the issue. You need to get your T3, T4, TSH and antibodies tested. Plus, ultrasound and perhaps a biopsy on the Goiter(s). You should also work with the Endo, not a regular doc, and also find one who will treat you for your *symptoms* not your labs (they are rare, but keep going until you find one).
Good luck, you must take control and manage this yourself if you want to see relief ... and boy, when you get it, you will wonder why you suffered for so long ... speak up and get the help you need!0 -
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.0 -
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.0
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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!0 -
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.0 -
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.0 -
you really need a higher dose. Nobody feels good at 3.8, imho. Healthy people should be 1-2, really.0
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If you have been diagnosed with a goiter, that means your thyroid is big. There's a freaking reason for it.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
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!!!0 -
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.0 -
Excellent.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.
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!0
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