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Old 02-03-2012, 10:12 PM   #1
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Hyperthyroid symptoms, but tests in "normal" range.

I've been having hyperthyroid symptoms for over a year now, and it's just getting worse. I have a big, visible, benign nodule on my thyroid, and the left side is swollen. The symptoms make it very hard to function on a day-to-day basis. I saw an endocrinologist that refuses to do anything and just says everything is fine because the tests still come back in the so-called normal range. However, from the research I've done, there seems to be TONS of people with normal lab results that still have symptoms. Some said they bullied their doctors into letting them at least try some medicine, despite being in the normal range, and it worked and made their symptoms go away. Does anybody know of a endocrinologist to go to in Baton Rouge that would be willing to work with me and try out medications and not disregard my symptoms? I mean, EVERYTHING points to it being a thyroid problem, and thyroid problems also run in my family! I just feel so helpless and frustrated, and I want my life back! Edit: Oh, and I was wondering if the Mayo Clinic might have some open-minded endocrinologists. Money is no object at this point, and I'm willing to travel.

Last edited by lapin77; 02-03-2012 at 10:13 PM.. Reason: Additional Info
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Old 02-04-2012, 02:13 AM   #2
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I can't recommend a doctor (I live in NY), but I just wanted to assure you that a good thyroid doctor always considers symptoms--even more than lab ranges.

Once I ignored my primary doctor who kept telling me that my labs were 'normal' despite escalating symptoms and self-referred to an endo (who turned out to be an excellent doctor), I didn't have to 'bully' at all. The endo told me that thyroid patients frequently present with 'normal' labs but severe symptoms--it's called 'sub-clinical.' She medicated me immediately based on my symptoms even before the labs came back.

I have another endo now, and he says the same thing. He treats me based on labs AND symptoms.

I hope someone comes through with a good referral for you.
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Old 02-04-2012, 05:06 PM   #3
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Thanks for responding. The endocrinologist is going to do an iodine uptake test, despite the blood test results being normal. Do you know if those are more accurate and will prove that I have a problem? Or will it be the same old, same old normal test result when it's obviously not normal? I mean, if one of your organs is swollen AND has a big mass on it, it's most likely not functioning normally.
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Old 02-04-2012, 07:22 PM   #4
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mayo clinic isnt usually good with thyroid.

Do a search for baton rouge.

Do you have hashi's or graves?
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Old 02-04-2012, 09:11 PM   #5
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I don't know if I have Grave's or Hashimoto's disease. I think the iodine uptake test that I'm going to have is supposed to show that, isn't it? All I know is that my biopsy results showed the mass was benign and that my blood test results were "normal". =/ I read that the Mayo Clinic in Minnesota was ranked number 1 for endocrinology, so that's why I thought they might be worth going to. Have you heard something negative about them?
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Old 02-05-2012, 01:52 AM   #6
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I don't know anything about the iodine uptake test, but I'm sure it's designed to identify the problem more specifically.

You mention that you've had a biopsy. That should have allowed them to determine whether you have Hashi's or Graves; my own Hashi's was diagnosed from my biopsy.

What are the symptoms that are causing you such distress? Are they related to the nodule? Or symptoms of hyper or hypo thyroid?
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Old 02-05-2012, 03:15 AM   #7
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Originally Posted by Leo41 View Post
I don't know anything about the iodine uptake test, but I'm sure it's designed to identify the problem more specifically.

You mention that you've had a biopsy. That should have allowed them to determine whether you have Hashi's or Graves; my own Hashi's was diagnosed from my biopsy.

What are the symptoms that are causing you such distress? Are they related to the nodule? Or symptoms of hyper or hypo thyroid?
That was my thought too leo.
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Old 02-05-2012, 06:07 PM   #8
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Here are a list of some o fmy symptoms:
-Dizziness/ severe vertigo around period
-Fast heart rate, heart skips beats, has trouble adjusting to position changes, speeds up too fast with even a little exertion (regular walking, sitting up in bed, etc.)
-Difficulty concentrating
-Brisk reflexes (one doctor told me this)
-Bulgy eyes
-Restlessness
-Fatigue, tired all the time
-Trouble breathing-worse upon exertion
-Tremors sometimes
-Fever
-Can’t tolerate heat well anymore
-Irregular period, changes in period
-Complete loss of appetite at times
-Difficulty sleeping
-Muscle weakness
-Hoarse voice
-Hair thinning, including eyelashes
-Cheeks flushed almost all the time (with or without fever present)
-Feels like I’m “drugged up”/lack of alertness/exhausted
-Get dehydrated easily
-Unexplained urinary tract infections
-Chest pain
-Blurred vision, worse in right eye
-Constantly swollen eyes
-Loss of feeling and weakness in limbs sometimes (not including right arm), worse in left arm (This happened after I took Metoporol and never went away, so I don't know if it's related)

The reason it's hard to function on a day-to-day basis is because my heart rate is too high, I have trouble breathing upon exertion, and I feel EXHAUSTED and like my brain is in a fog. I used to have tons of energy, and I love being active, but can no longer ride my bike or exercise because my heart rate jumps up too much. My cardiologist said my heart is healthy, but that I shouldn't exercise until she can get it slowed down. Beta blockers work, but make it alarmingly difficult to breathe. She is trying different medications out on me right now, but none have worked yet. My resting heart rate right now is about 100, and I am 26, a vegetarian, and a little underweight. There's no reason for it to be that high...
I thought they were just testing for cancer when they did the biopsy. They didn't say anything about Graves or Hashimoto. Thyroid problems run in my family, and from what I've read about hyperthyroidism, it sounds like that's what I have. I don't know if the nodule is causing the problems or what.
I just can't stand this brain fog and tiredness. I don't feel like myself anymore. I used to make good grades (I'm a student), but they have slipped because I can't focus on my work. Getting my mind to work is like trying to get a car to start that just... won't. Sorry this was so long. Thanks again for responding.
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Old 02-05-2012, 06:07 PM   #9
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What about antibody tests—have you had those run? Some doctors will treat with high TPO (as in Hashi's/hypothyroidism) or TSI (as in Graves/hyperthyroidism) antibodies, even if your thyroid levels are within the normal range.
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Old 02-05-2012, 06:13 PM   #10
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Lapin77, I live in Baton Rouge, too. There have been several recent threads regarding finding a good endocrinologist in Baton Rouge. Look around and read on. If you have any questions, feel free to message me.

Also, I was wondering if you had any lab results you could post to this thread?
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Old 02-05-2012, 07:39 PM   #11
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lapin77- have you ever been tested for gluten intolerance?
So many of your symptoms sound exactly like what my daughter went through before she was diagnosed and went on a gluten-free diet.
She was 20 when diagnosed. 22 now and doing great, virtually symptom free.
She still gets fatigued at times, but her Vitamin D3 levels are low and she's working on that.

Studies are showing that there is a connection between gluten and thyroid issues. Might very well be worth your while to get that checked out too.

Good luck!
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Old 02-05-2012, 07:46 PM   #12
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What are antibody tests? Are those a type of blood test? I don't know if they've run those. I've looked at the threads and plan on calling some of the endocrinologists. Which endocrinologist do you see, brbangl3? I just want to get this straightened out asap, so I'm hoping the endos can get me in soon, or maybe my primary doctor might let me try out some thyroid medicine or let me get the mass removed, or the iodine uptake tests will show something. I'm supposed to go to Paris for a month during the summer, and I can't be having episodes where I can't breathe or move around easily. =/ I'm also sick to death of sitting around. Even when I'm tired, I still feel the urge to just get up and run some laps. It's weird. I feel like I can never relax. Anyway, the following are lab results that were taken a little over a month ago:

T4 Free 0.6 ng/dL 0.6 - 1.6

TSI <1.0 see fn <=1.3

Thyroglobulin Ab, S <20 IU/mL 00 - 115

T3 (Triiodothyronine) Total 183.0 ng/dL 80 - 190

T4 Total 6.1 mcg/dl 5.0 - 12.5

S-TSH 2.39 mIU/L 0.30 - 5.00

Edit: The numbers on the side of the results are the normal range. I didn't know if that would be confusing. I just copy and pasted it off my medical records online.

Last edited by lapin77; 02-05-2012 at 07:51 PM..
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Old 02-05-2012, 07:49 PM   #13
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Pinot, I've never been tested for gluten intolerance. I didn't know my symptoms matched that! I'll do some research on that and ask my primary care doctor about it next time I see her. Thanks! My vitamin d was low, too, for awhile, but after taking supplements, it's now in the normal range.
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Old 02-06-2012, 03:50 AM   #14
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your ft4 is about to fall OUT of range low. You should have gotten a free T3...Tsh is on the high side.

hope you get some answers. I had a lot of those symptom unmedicated.. but we are ea different.

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Old 02-06-2012, 10:06 AM   #15
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What are antibody tests? Are those a type of blood test? I don't know if they've run those.
Quote:
TSI <1.0 see fn <=1.3
This is one of them. A high TSI reading would be more indicative of Graves Disease/autoimmune hyperthyroidism, whereas a high TPO Antibody result (not shown) is more indicative of Hashimoto's/autoimmune hypothyroidism.

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Your ft4 is about to fall OUT of range low. You should have gotten a free T3...Tsh is on the high side.
Agree. And, these numbers are more aligned with those of someone with hypothyroidism, not hyperthyroidism, lapin77. Symptoms of the two thyroid conditions overlap quite a bit, so it's logical that you assumed an overactive thyroid state given your symptoms. Just to put it into perspective: I was a very anxious hypothyroid sufferer before I was diagnosed with Hashimoto's and treated with meds, and have even continued to experience some of the same symptoms when my dosages are off. From what I have read and have been told, a big contributing factor to the chronic anxiety is overactive adrenal stimulation: basically, your adrenal glands have to work harder to compensate for the improperly-functioning thyroid, which keeps your body in something of a perpetual fight-or-flight state. Hence, the speedy heart rate and pulse, the increased body temp, blood pressure, heightened reflexes, etc.

As Ileen said, our bodies are different and no list of symptoms is going to apply to everyone—it's just not that one-size-fits-all. Just want you to know that you are not alone. No conclusions can be drawn until you get more testing done and get treated.

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Which endocrinologist do you see, brbangl3?
I see Dr. Bhushan at the Metabolic Center of LA on Picardy Avenue.
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Old 02-06-2012, 12:13 PM   #16
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I'm supposed to get more blood tests done when I get my iodine uptake test. Those blood tests were done at the Mayo Clinic by a thoracic surgeon (long story), not my endocrinologist. Hypothyroidism is what most people in my family have. My weight has gone up and down a few pounds, but has basically remained the same, so that's one of the reasons I thought I didn't have it since weight gain is a big symptom.

I match all of the symptoms that my adrenal glands are overactive, like you said, except I actually don't feel anxious most of the time. Is there a way to test to see if they're functioning correctly? I did have problems with anxiety at first, but that went away. I mainly just feel simultaneously exhausted and energetic. I feel like I could fall asleep on my feet, but at the same time, I feel like I could run a marathon. It's very weird! Also, I feel worse after I eat, I've noticed. Does anybody else feel like this?

Thanks for all of the responses! They've been really helpful. I'll make an appointment with Dr. Bhushan today. Oh, and does anybody know of a good medication that will slow your heart rate down, but won't drop your blood pressure overly much and isn't a beta-blocker?
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Old 02-06-2012, 12:53 PM   #17
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Expect a wait for Dr. Bhushan. He's great, though, and will help you get to the root of these issues. In addition to thyroid, he will likely also want to investigate other endocrine imbalances, like glucose intolerance and/or insulin resistance. The endocrine system is a very delicate series of processes that must work in sync—when one thing is off, it is probable that something else is off, too. For me, for example: I was diagnosed with Hashimoto's and PCOS/insulin resistance within months of each other. (The two conditions are very closely linked, apparently.) Fortunately, because they are both associated with the endocrine system, addressing and treating one can and often does improve the other.
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Old 02-07-2012, 10:18 AM   #18
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I made an appointment with Dr. Bhushan for next week on Valentine's Day! I was surprised I got in so quickly! Is he usually open-minded, and will he treat my symptoms even if the tests fall within the normal range?
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Old 02-07-2012, 01:41 PM   #19
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For an endocrinologist, I think he's probably one of the most "open-minded" you will find locally, although be prepared for a not-so-"open-minded" response if/when you tell him that you've been fishing around thyroid message boards and have read a lot about natural dessicated thyroid meds like Armour. Like a lot of endocrinologists (as opposed to naturopaths or integrative medicine doctors, or even some liberal family medicine doctors), he's not a proponent of natural thyroid replacements, because he says that they are not as strictly regulated by the FDA and therefore have inconsistencies among their batches.

He isn't rigid with treatment, though, and will be quick to prescribe synthetic T4/T3 combinations as dictated by your labs and your symptoms.

In general, I just greatly respect the man and think that he is extremely intelligent and knowledgable about the thyroid and the entire endocrine system. I think you will agree upon meeting him.

Quote:
Will he treat my symptoms even if the tests fall within the normal range?
I can't really give an honest answer on that. When first tested, my thyroid results fell out of the normal range, and I was immediately treated. My TPO antibodies were also really high, indicating Hashimoto's. I think a conclusive antibody test, along with your symptoms would probably be effective in warranting treatment from him. But, I really cannot say.

Good luck and keep me posted!
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Old 02-09-2012, 04:55 AM   #20
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I was diagnosed a very long time ago w/ hyperthyroidism . I don't mean to scare you here:
I had every symptom you are having plus a few more. I had a toxic goiter. I was very ill.
I had lost 65 lbs in just 3 months , had awful hand tremors, couldn't hold a newspaper still enough to read, couldn't put on eye make up, I shook so bad that my whole body shook rattled and rolled lol !I was put in the trauma unit , dr said my heart was ready to explode. I went walking the day I ended up in the ER, I didn't have far to walk home that day ....but ...couldn't get going, had a hard time breathing and was wore out till I got there (huffing and puffing). It took me an hour to home , I lived a few blocks away.
Anyway , I was put on beta blockers right away and was being monitored.Then the test for thyroid (scan& sonogram), I had to crash before any meds were giving to me for thyroid , which it took around 6 months, RAI was done before I left the hospital. I crashed hard. I can't believe that dr is waiting to treat you . My dr said I was ill for at least 18 months close to 2 years . It took me that long to get back to feeling somewhat decent. I WAS so sick. At one time beta slowed me down to a crawl , heart rate plummeted really low ...like at 40 -41. scary stuff .Please find a good dr and get checked or diagnosed.
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Old 02-09-2012, 08:56 PM   #21
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Brandywine12, that sounds terrible! Did your blood tests show that you were in the normal range, too? Do you know if the RAI test is more accurate and will definitively show if there is something wrong, even if the blood tests don't? I'm glad you made it through all that and are doing better!
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Old 02-10-2012, 04:03 AM   #22
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I'm sorry ..I had RADIATION ,(RAI.) to shrink or burn out my thyroid.My ft3 was through the roof back then.Actually I didn't have to wait to get a diagnoses, was so stressed (labored breathing), that they started immediately to what was going on at that time. I was diagnosed with in 3 days. I spent 10 days in the hospital. Thanks , I hope you get it all figured out soon.
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Old 02-15-2012, 09:04 AM   #23
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Ohhh, I thought you meant the radioactive iodine uptake test. Is the RAI better than surgery to remove your thyroid?

I went to Dr. Bhushan yesterday, and he spotted things that my last endo missed and came up with all these new things to test for, in addition to just hyper/hypo. I'm going to get the tests done and see him again in three weeks.

He also gave me something to help me sleep because I've been having a hard time sleeping. He looked at my teeth and could see that I grind them at night. He seemed more competent than my last endo, so here's to hoping everything doesn't come back normal, and he just gives up like the other one.

Also, they took my blood pressure and heart beat, and my resting heart rate was 142! I hope they figure out what to do soon!
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Old 02-16-2012, 08:49 AM   #24
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I went to Dr. Bhushan yesterday, and he spotted things that my last endo missed and came up with all these new things to test for, in addition to just hyper/hypo. I'm going to get the tests done and see him again in three weeks.
Great news! Glad to hear that the wheels are in motion!

Quote:
He also gave me something to help me sleep because I've been having a hard time sleeping. He looked at my teeth and could see that I grind them at night.
Bruxism! Ditto. He gave you Klonopin?

Quote:
Also, they took my blood pressure and heart beat, and my resting heart rate was 142! I hope they figure out what to do soon!
Yikes! No wonder you are unable to exercise! No doubt the anxiety and stress are also perpetuating your teeth clenching/grinding.

Hope they can figure out the root of the problem soon, lapin! Three weeks isn't long, so hang in there. You are in good hands with Dr. B!
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Old 02-20-2012, 04:22 AM   #25
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That's great! When I first got sick w/ thyroid disease, I worked two jobs and have 3 kids , one of which needed special care and I raised a very large garden , had a 4 bedroom house to clean.I DIDN'T Sleep! I had no idea what was wrong. I was so busy all the time that I hadn't noticed that I was spiraling out of control. I was up at 2 in the am doing things, before I went to work which was at 5:30 am. I didn't take any thing to sleep , although after the hospital stay and no -meds at the time YET, I slept my life away! I would sleep like 12 hours day, I was on leave of absence because I was so sick.
I hope you get every thing straightened out. I wish you wellness.
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Old 03-16-2012, 10:34 AM   #26
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I got my Radioactive Iodine test done. It showed that my thyroid is functioning normally, except one small part, which my old endocrinologist chose to ignore because he didn't know why. I just wanted to get that one test done before I dropped him. I just saw Dr. Bhushan, my new endo, for the second time about my blood test results yesterday, and he said that while some number was in the normal range, it wasn't the best range for me and needs to be higher. He gave me synthroid (sp?) to raise it and said that should shrink my massive nodule, too. I noticed my nodule has gone down a good bit, too, on its own, and he said that was a good sign. He also said there was some more stuff wrong on my blood tests and diagnosed me with PCOS. He was much, much more thorough than my last doctor, who actually ignored anything abnormal and wouldn't think outside the box. He also talked like a weird, condescending cartoon... Anyway, I hope this new medicine works! I also am on some heart medicine that actually works and can exercise now, though I'm still pretty weak, and my breathing isn't completely normal, but hopefully, that will improve!
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Old 03-16-2012, 03:27 PM   #27
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you prolly have hashimotos thyroid disease. it can swing both ways off and on .I'm glad you at least know some thing about whats going on with your gland. I think I roller coaster ed half of my life before I got diagnosed with thyroid trouble. Hope meds help you good luck !
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Old 03-18-2012, 11:50 AM   #28
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Wow! The RAI test sounds kind of amazing to be able to pinpoint functioning and non-functioning areas of the thyroid gland! I've only had ultrasounds of mine. And, speaking of nodules... I recently requested a follow-up ultrasound with Dr. Bhushan, after my last one showed two nodules that were too small to biopsy. In response, Dr. Bhushan said that nodules have a tendency to appear and disappear, so there's no guarantee that the same two nodules I had before would still be there.

Still, ultrasounds are necessary every now and then in the event the nodules remain and grow large enough to biopsy.

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you prolly have hashimotos thyroid disease.
Did he run a TPO Antibody test on you?
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Old 03-20-2012, 05:27 PM   #29
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I don't know if he ran a TPO Antibody test. I'll have to find out. Today was my sixth or seventh day of taking Synthroid, and for some reason, it made me sick today. Before, I got just a tiny bit nauseous, and it wasn't bad at all, but when I took it today, I got really nauseous, really weak, sped my heart rate up, and it got harder to breathe. It's been difficult for me to get around all day, and eating makes me more nauseous. It's like how the calcium blockers used to make me feel. What do people do if they can't tolerate Synthroid? Is there a better medication? I just got to where I was functioning better and exercising. I don't want it taken away again! I also don't know why it affected me so severely this time and not the others. The only thing I can think of that was different was that I didn't eat much yesterday. Or, maybe it's built up in my system now enough to cause me trouble.
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Old 03-21-2012, 02:31 AM   #30
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It takes around 4-6 weeks for Synthroid (T4) to build up in your system. Any allergies to corn? Or, it could be the lack of eating. Or it may not be the Synthroid at all and could be something else.

You need to ask for a copy of the lab results that were run so you know what they ran and were exactly you are within each range.
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