# New here and need advice



## Shandraz (Sep 22, 2016)

I am new here and was hoping somebody could help interpret my labs. I am 43 and was diagnosed hypothyroid when I was 28. I was stable on Levothyroxine up until 5 years ago and was diagnosed with hashimoto's. My Meds were changed at that point and I have been stable until May of 2016. At that point I began having waves of dizziness and high blood pressure and a racing heart. My primary took blood and here are the results:

5/31/16
TSH 7.63 (range .45-4.50)
T3 Free 2.8 (range 2.0-4.8)
T4 Free 1.3 (range 0.8-1.7)

My primary dr said I was "mildly hypothyroid," my T3 and T4 looked fine and it was probably a virus. Over the next couple of months I have had severe enough symptoms to end up in the emergency room 3 times. Mostly hyper symptoms. Racing heart, sweating, anxiety, dizziness, feeling like I am going to pass out. I also have hypo symptoms such as exhaustion, hair loss, joint and muscle aches, heart palpitations, etc.

On 8/14 I need up in the ER with a heart rate of 130-160 for 10 hours. The ER wouldn't do a complete thyroid panel, but my TSH was 3.34 (range .45-4.50). Also, through all of this I remained on my thyroid medication which is 75 of levothyroxine. My dose was never changed.

8 days after that ER visit, my primary dr took blood and my results were:

8/22/16
TSH 4.92 (range .45-4.50)
T4 Free 1.4 (range .8-1.7)
T3 Free 2.8 (range 2.0-4.8)

I also insisted on the TPO antibody because I feel my hashimotos is flaring up. The result was greater than 1,000 with less than 34 being normal.

My primary still didn't know what to do so he said we will wait and see.

One week after my last blood test I was back in the ER with a racing heart. They don't do the full thyroid tests but they did test my TSH. It showed I was hyper with this result:

8/29/16
TSH .251 (range .45-4.50)

I was sent home with some beta blockers. I saw one endocrinologist who said "You are just one of those people with a difficult thyroid." Not helpful. I am seeing a new endo next week.

This past week I had more blood work done. Basically two weeks after I showed hyper. Here are the results:

TSH 8.14 (range .45-4.50)
T4 Free 1.2 (range .8-1.7)
T3 Feee 2.9 (range 2.0-4.8)
T3 Uptake 19.3 (range 23.4-42.7)
TPO antibodies greater than 1,000 (normal less than 34)
Thyroglobulin antibodies 28 (normal less than or equal to 40)
Vitamin D in optimal range 
B12 610 (range 243-894)

Again, through all of this I continued taking ,my daily dose of leyothyroxine 75. Two days ago I have had it. I discussed it with my primary doctor and he removed me from taking the levothyroxine. This is day 3 without it and it least I am able to get out of bed which is an improvement. Can anybody make sense of what is going on here based on my labs? I guess it is a hashimotos flare up, but does anybody have any advice to improve the symptoms? Or is something else going on? Also, I have regular ultrasounds every year and have a couple of small nodules but they are stable now for 5 years. I also tried the gluten free diet 5 years ago when I was diagnosed with hashimotos with no change in my symptoms. I also began taking a low dose birth control pill back in October 2014 in order to help with some perimenopause symptoms. Can the BCP cause any of this? Any advice would be greatly appreciated.


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## jenny v (May 6, 2012)

Have they ever run a TSI or Trab test on you? Those are the markers for hyper/Graves and I'm wondering if you've got those as well. Your symptoms sound like mine in the last stages of my thyroid dying out--it would truck along slowly and then suddenly sputter into overdrive. It was like a roller coaster, I felt hypo one week and then hyper the next.


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## joplin1975 (Jul 21, 2011)

Yup, what Jenny said.


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## Lovlkn (Dec 20, 2009)

Agree w Jenny.


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## BurntMarshmallow (Feb 26, 2016)

I suggest taking l-carnitine for the hyper symptoms (heart racing, dizzy, etc). Studies show it really helps, and my personal experience has been great with it. It's just a protein found in meat, and also your body can make it. Body builders like it bcs it helps your body use fat for energy.

Also, high doses of thiamine have been found to help with both hyper and hypo symptoms (swelling, chest pain, irritability). Thyroidpharmacist.com talks about thiamine being her last step to feeling good. It's been literally a life saver for me.

If thiamine helps, it's likely you'd benefit from the other b-vitamins too. Just be careful with B6, go slowly, as it can trigger hyper symptoms. In fact, in someone who is low in B6 AND has a thyroid issue, taking even 10mg can make you feel hyper. It's because it brings iodine into the thyroid. If this happens to you, you will want to slowly build up your B6, bcs deficiency causes lots of symptoms, and raises breast cancer risks.

Vitamin E is a powerful antioxidant that helps with thyroid inflammation and helps protect the thyroid during hyper episodes.

Hope this helps,
Amy


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## BurntMarshmallow (Feb 26, 2016)

Oh, also, birth control pills are known to deplete B6. I don't know why they don't educate women to supplement when on bcs. This is probably what started the thyroid instability.

This site is a good reference for medications and nutrients they may deplete. Here is the page on bcs:
http://umm.edu/health/medical/altmed/depletion/birth-control-medications-monophasic-biphasic-and-triphasic-preparations


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## Shandraz (Sep 22, 2016)

Thank you all for replying. My new Endo is testing for Graves. However, he thinks something else may be going on due to the severity of my symptoms. He also discounted the hyper test result I got in the hospital since all my other results were hypo. Even though I have fever and my thyroid aches he didn't think much of it being a hashimotos flare up. He also doubted my hyper symptoms were due to the thyroid. He is checking for lupus and Addison's. My question, with a hashimotos flare up, did anybody here feel so bad they were pretty much bedridden for 7 weeks and counting. Also, if I am hypo and have a flood of thyroid hormone entering my system, is it possible to have hyper symptoms, but still test hypo on the labs? I am having a hard time believing this isn't due to my thyroid given the wild swings in my test results. Thank you for any input.


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## joplin1975 (Jul 21, 2011)

The TSI test will be really telling. Given the crazy high TPO number, if you also have TSI, you essentially have hashitoxocisis, which for all intents and purposes means you have Hashi's AND Grave's at the same time. I would bet a lot of money that this is what's going on. It can devastate your quality of life.

You should also have a thyroid ultrasound.

If you have any TSI in your blood (don't let them tell you under 140% is normal -- no TSI is normal), I'd really push hard to have your thyroid removed. It can be a life saver.


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## BurntMarshmallow (Feb 26, 2016)

Yes, it's completely possible to be so sick from a thyroid flare up that you are bedridden. I was like that for two months when mine situation began. Plus, a thyroid storm can kill you. Fever is the hallmark sign of a thyroid storm. If you're endo is discounting all of these signs, I think you need a new endo. Although it sounds like you just got a new one.

Most endocrinologists don't even understand their own specialty well enough. And most of the time the only tool they have in their toolbox is to change your dosage of thyroid hormone. Give her more. Give her less. or maybe cut it out. Drugs or surgery. If only it were that simple! If it were that simple, there wouldn't be support forums like this one.

Problems with the thyroid create havoc throughout the body. The adrenals, the heart, the brain, the muscles, the liver, the kidneys. ALL of your organs are affected by what is happening, no matter if your thyroid is up or if it's down. It affects all your body systems.

No matter what is happening with your thyroid, whether you are hyper or hypo, it's very important not to only think about the thyroid. But to listen to your entire body and what it's trying to tell you with your specific symptoms. The symptoms can tell you what things you have lost, and what things to take to get better, regardless of your thyroid's status.

If you've been experiencing symptoms like heart palpitations, fatigue, racing heart, irritability, chest pain, muscle pain, edema, nerve pain, joint pain, memory problems.... you really really need thiamine and magnesium. If you do nothing else, at least take thiamine and magnesium. We do not store these, and quickly use them up if we become hyperthyroid, and it can kill you. Not enough thiamine will kill you. Too much thiamine will pass through in urine, so there is zero risk. There is really no reason not to take thiamine and magnesium.

Magnesium malate, or magnesium glycerinate. Don't waste your money on the other versions which will do nothing but maybe give you loose stools.

If you could get an IV of thiamine, which used to be fairly common, an IV would be ideal because absorbing thiamine once you are deficient is difficult, and requires huge oral doses. We're talking 500mg twice a day of thiamine for recovery. But lipothiamine is be the best absorbed version.

Take thiamine, magnesium, and then if you want to do one more thing, take l-carnitine. Studies show L-carnitine helps lower risk of death with thyroid storm. Your body needs this to live.

http://www.lifeextension.com/magazine/2007/12/report_thyroid/page-01

http://www.hormonesmatter.com/beriberi-the-great-imitator/


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## Shandraz (Sep 22, 2016)

Thank you guys for responding. I feel like I am going crazy as the docs have no clue what is going on. I tested negative for grave's, lupus, and rheumatoid factor. Also, my adrenal tests were good. Last week I saw the endo after being off the meds for 1 week and my TSH was 8.1 (range .45-4.5). This was Thursday of last week. I got those results on Monday, and the endo had me start back up on the 75 of levothyroxine. I have taken that for three days, and Last night I ended up in the ER again with high blood pressure and racing heart. They would only run a TSH and T4 Free.

T4 Free 1.08 (range .70-1.48)
TSH 18.129 (range .350-4.940)

The ER doctor basically called me crazy, that it is all in my head, and I have anxiety (which I have never had). I pointed out the high TSH and he said that it meant nothing since I am on thyroid hormone (what? This is the first time anybody has said something like this).

Does anybody know what is going on? Why would I be at an 8.1 and then jump to a 18.1 in six days, especially since I started back on the meds? Wouldn't the TSH be going down? I feel awful. More hyper symptoms than hypo. Also, the soreness in my thyroid seems a bit better and my fevers were lower, so I figured I am at the tail end of this attack. I don't even know where to go from here.


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## BurntMarshmallow (Feb 26, 2016)

You're not crazy, and it's not all in your head. I'm sorry you're dealing with so many clueless people in the medical community.

It takes two weeks for T4 from the levothyroxine to build up in the body. When you take 75mg today, only about 15% will be converted to the active T3 today. Tomorrow you take another 75mg, and part of that gets converted to T3, but most of it stays as T4. After one week, you will have built up an extra 400mg of T4. After two weeks, you will have about 800mg of T4. And that is your peak level and it will stay there for the rest of the time you take the 75mg each day.

Your TSH could be rising right now because you're still building up T4 in the body. Your conversion to T3 could be slow as well, making your TSH rise. Also, the TSH has a delayed response to what is happening with your thyroid. TSH tells you more about what was happening last week, than what is happening this week.

So what is happening? You might have what is called an "autonomous nodule". An autonomous nodule is sometimes called a "hot nodule". An autonomous nodule spits out thyroid hormone independently from TSH. It's like the rebellious child that ignores all instructions and does whatever it wants. These nodules usually put out way more T3 and less T4 than normal thyroid tissue. T3 has a very short lifespan in the body. Only a few hours. So it can fluctuation incredibly, throughout the day. Making you feel hypo for a few hours, and then hyper for a few hours.

Even an autonomous nodule can eventually run out of steam. It could have been acting up, but now it's settled down. Even small changes in your B6 or iodine intake can have an affect on a nodule. You might find some clues in your diet over the previous few months, maybe something set the nodule off. Or it could be from auto-antibodies attacking your thyroid. Releasing hormones suddenly. And now the attack has left you hypo.

When you analyze your symptoms and try to decide what is happening, and whether you're hypo or hyper, use your body temperature. It is the most reliable indicator. A high metabolic rate from hyperthyroidism will raise your body temperature. And a low metabolic rate from hypothyroidism will lower your body temperature. If you get cold feet sometimes and then hot feet other times, this is great way to tell what your thyroid is doing.

It is normal to see some ups and downs during the day. Most of us are not even aware of them. But even the healthy thyroid follows a 24 hour cycle, where it has peaks and valleys. T4 and T3 peak in the early morning, dip around lunch, and then have another smaller peak around dinner time. So if you're analyzing your symptoms and notice this variation, don't let it worry you too much. These are normal fluctuations.

Other sympoms, like racing heart, or feeling agitated, are not indicators of what is happening with the thyroid, but indicators of what your thyroid did to your body.

The racing heart can make you think you're hyper, but this can happen and does happen in hypothyroidism as well. Your metabolic rate can be slow, and you can still have a racing heart. Many symptoms like this are the result of nutrient deficiencies. High metabolism burns up stores of many nutrients. They will continue whether you're hyper or hypo until they are corrected. A stable thyroid helps, but you can take supplements to correct them faster. I wrote all about it in my previous post. You should be taking at least thiamine a few times a day for the racing heart. The ER should have given you an IV of b-vitamins. You would have felt better almost immediately.

If you end up in the ER again, you can ask for a "banana bag", which is an IV of b-vitamins. It gets it's name from the color of the riboflavin which turns it neon yellow.


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