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Restarting my thyroid medication
Hello. So I’ve been suffering with Hashimoto’s thyroid disease for about eight years now. The first two years the doctor said I wasn’t sick and And that I didn’t need any thyroid medication so I became more ill. I found a Doctor Who was willing to help me with my thyroid disease and they started me on nature through aid medication. I realize I needed more T4 so he added more T4. Recently I was taking 112 mg of levoxyl and about 5 mg of cytomel. I decided to stop taking the meds because of severe back and leg pain.
Big mistake. I am terribly hypo now. How long does it take to build back up? I took a bit more today and felt seriously dizzy, sick, anxiety and fear. Please help!
Big mistake. I am terribly hypo now. How long does it take to build back up? I took a bit more today and felt seriously dizzy, sick, anxiety and fear. Please help!
COMMUNITY LEADER
Okay, let me recap to make sure I have it right, then I have a lot of questions for you...
Your original labs were: TSH = 1.35 (range: 0.34-5.60) and Free T4 = 0.63 (range: 0.74-1.34). That was Free T4, wasn't it? Does it say on your lab report? There's a difference between Free T4 and just T4, which is the same as Total T4.
When you were diagnosed, your doctor prescribed you NatureThroid desiccated hormone... Is that correct? What dosage of medication were you originally prescribed and how long did you take it?
When, and why, did you switch from NatureThroid to Levoxyl 112 mcg and T3 5 mcg?
If I understand correctly, you went off the medication because you believed you weren't sick? Who told you you weren't sick and why would anyone say that, if you don't feel well?
Do you know if you have the autoimmune condition, called Hashimoto's Thyroiditis or were you diagnosed with Central/Secondary hypothyroidism?
I'm sorry to ask so many questions, but we need to sort out your history in order help get you on a path that will let you move forward.
It takes about a month for the medication to get completely out of your system, but after 9 days without taking any, I'm sure you would have been feeling the effects of not having it. Likewise, it takes 4-6 weeks for the med to reach full potential in your blood when you first start taking it, but yours hadn't completely cleared, it wouldn't take that long for you. If you started back at your full dosage, it's possible you could have those symptoms after just 7 days.
It's not unusual for symptoms to get worse or for new ones to appear when starting a med or changing doses. Perhaps, it would have been better to start back at just half the dosage of the Levoxyl for a few days, then start taking the full dosage.
Free T3 is the hormone that's used by every cell in the body. Does your doctor explain why she refuses to test for it? Do you think there's any way you can convince her to begin testing for it? If not, do you have the option of getting a different doctor to manage your thyroid condition? Doctors who only look at TSH have a tendency to keep their patients ill and being a sweetheart doesn't ever change that.
Your original labs were: TSH = 1.35 (range: 0.34-5.60) and Free T4 = 0.63 (range: 0.74-1.34). That was Free T4, wasn't it? Does it say on your lab report? There's a difference between Free T4 and just T4, which is the same as Total T4.
When you were diagnosed, your doctor prescribed you NatureThroid desiccated hormone... Is that correct? What dosage of medication were you originally prescribed and how long did you take it?
When, and why, did you switch from NatureThroid to Levoxyl 112 mcg and T3 5 mcg?
If I understand correctly, you went off the medication because you believed you weren't sick? Who told you you weren't sick and why would anyone say that, if you don't feel well?
Do you know if you have the autoimmune condition, called Hashimoto's Thyroiditis or were you diagnosed with Central/Secondary hypothyroidism?
I'm sorry to ask so many questions, but we need to sort out your history in order help get you on a path that will let you move forward.
It takes about a month for the medication to get completely out of your system, but after 9 days without taking any, I'm sure you would have been feeling the effects of not having it. Likewise, it takes 4-6 weeks for the med to reach full potential in your blood when you first start taking it, but yours hadn't completely cleared, it wouldn't take that long for you. If you started back at your full dosage, it's possible you could have those symptoms after just 7 days.
It's not unusual for symptoms to get worse or for new ones to appear when starting a med or changing doses. Perhaps, it would have been better to start back at just half the dosage of the Levoxyl for a few days, then start taking the full dosage.
Free T3 is the hormone that's used by every cell in the body. Does your doctor explain why she refuses to test for it? Do you think there's any way you can convince her to begin testing for it? If not, do you have the option of getting a different doctor to manage your thyroid condition? Doctors who only look at TSH have a tendency to keep their patients ill and being a sweetheart doesn't ever change that.
1 Comments
Hi Barb and thank you for responding. My story is a disaster. I was having tingling in my hands and feet. I had an ANA test. It was only positive for Hashimotos. This was over 8 years ago. I was diagnosed by a rheumatologist. He was rude and unconcerned. He said my labs were fine and I didn’t need to be treated. I began to become horribly sick. Headache, sinuse, I had a pain in the middle of my head. I was sick for two years before i begged a doctor to give me some synthroid because my sister has Hashimotos and that is what she was taking. I took 50mgs and it made me very depressed. I literally cried everyday for a few months. So I stopped the medication and the crying spells stopped but all my other symptoms continued.
I found a naturopath MD who put me on naturethroid but he still never explained anything to me. So I began to increase my dosage on my own. The headaches got better but I was allergic to the medication. It made my sinuses swell which was already happening but it made it worse.
Back track. My sinuses was a part of my hypothyroidism from what I understand now.
Ok going forward again. I began to up my dose on my own. As I began to go up, my symptoms began to get a little better. However I began to look for a good ENDO because the naturopathic doc wasn’t helping.
Fast forward. I’m currently seeing an Endo who took my blood work and she says I’m hypo because my tsh was .07. So now she wants to lower my dose.
Ok so here’s the problem. No one has ever said to me you need medication because your sick. In fact they’ve all said that nothing is wrong with me. I’ve had a hard time accepting this condition because no one said hey you need to treat this disease. That’s why I stopped. I’m horribly symptomatic and confused. I’m trying to know what the heck to do. This has been a nightmare. I’ve been trying to be hopeful but now my depression is back. My T3 on my test back in October was below the range. My doc says it doesn’t matter. This is why I’m so confused and don’t know what to do. Today I took 112 and it wasn’t that bad today. I still have a headache and my depression isn’t as bad but I’m still struggling and my Endo doesn’t care. She just wants me to not be suppressed. Ugh. Thank you for listening. I hope this helps you a bit better. I have the hardest time believing my thyroid can’t work by itself. It’s like I refuse to accept it because the medication has been awful. I’ll post my labs from last time and the ones I did in November. Thank you kindly!
I found a naturopath MD who put me on naturethroid but he still never explained anything to me. So I began to increase my dosage on my own. The headaches got better but I was allergic to the medication. It made my sinuses swell which was already happening but it made it worse.
Back track. My sinuses was a part of my hypothyroidism from what I understand now.
Ok going forward again. I began to up my dose on my own. As I began to go up, my symptoms began to get a little better. However I began to look for a good ENDO because the naturopathic doc wasn’t helping.
Fast forward. I’m currently seeing an Endo who took my blood work and she says I’m hypo because my tsh was .07. So now she wants to lower my dose.
Ok so here’s the problem. No one has ever said to me you need medication because your sick. In fact they’ve all said that nothing is wrong with me. I’ve had a hard time accepting this condition because no one said hey you need to treat this disease. That’s why I stopped. I’m horribly symptomatic and confused. I’m trying to know what the heck to do. This has been a nightmare. I’ve been trying to be hopeful but now my depression is back. My T3 on my test back in October was below the range. My doc says it doesn’t matter. This is why I’m so confused and don’t know what to do. Today I took 112 and it wasn’t that bad today. I still have a headache and my depression isn’t as bad but I’m still struggling and my Endo doesn’t care. She just wants me to not be suppressed. Ugh. Thank you for listening. I hope this helps you a bit better. I have the hardest time believing my thyroid can’t work by itself. It’s like I refuse to accept it because the medication has been awful. I’ll post my labs from last time and the ones I did in November. Thank you kindly!
Hello. Ok so I read as much as I could. I do have a better understanding of tsh now and I accept that. My problem now is that when I take any of the medications I have an allergic reaction. My head right now feels like lm swimming under water, I’m dizzy, my nose is blocked. I wake up feeling ok but there is a pain at the back of my head. So when I take my medication that’s it. All of those symptoms begin. Also, the right side of my body is burning. All the way from my hip to my feet.
Now before I went up on my medication the leg hip pain wasn’t there. Now that I’m taking 112 of levoxyl my leg is on fire. I’m so sick of this. I’m supposed to better. Not worse. I can’t win for losing. Have any of you heard of these side effects.
I’m about allergic to every pill I take. It could be the fillers but my leg pain is horrible I was in tears last night. Please help me with this. If I can get rid of these symptoms, I can live again! Thank you!
Now before I went up on my medication the leg hip pain wasn’t there. Now that I’m taking 112 of levoxyl my leg is on fire. I’m so sick of this. I’m supposed to better. Not worse. I can’t win for losing. Have any of you heard of these side effects.
I’m about allergic to every pill I take. It could be the fillers but my leg pain is horrible I was in tears last night. Please help me with this. If I can get rid of these symptoms, I can live again! Thank you!
Any doctor that would want to reduce your thyroid med with those low FT4 and FT3 results, just because of the low TSH shouldn't be treating thyroid patients. I expect that you overlooked my prior post. I highly recommend reading about suppressed TSH in the link I gave you.
2 Comments
I did miss your post. I’m sorry I’m trying to figure this medhelp stuff out. Where is the link. I really want to read it. Question? If you need t3 does it mean that your thyroid doesn’t function at all? There is so much I’d like to understand.
Highlight the link, right click, then say open in a new window; the document will then open and you can read it as much as you want. You can save it as favorite if you like, so you can go back to it whenever you want.
Needing T3 doesn't necessarily mean your thyroid doesn't function at all; it could mean there's something else that doesn't function just right.
Thyroid 101... Your thyroid, mostly, produces the T4 hormone. Of the Total T4 that's produced, most is bound by a protein, so it can't be used. That's why we measure Free T4; we need to know how much is "unbound"/Free to be used; however, here's the kicker...Free T4 isn't used directly.
It must be converted to T3, which is the hormone used by almost every individual cell in your body. As with T4, most of the T3 in your blood is bound by a protein and can't be used; therefore, we measure "unbound"/Free T3 to find out how much is actually available for use by individual cells.
Sometimes, the thyroid produces or we take enough T4, but there's an issue with the conversion process, so you can have enough T4, but not enough T3. This is when we have to add a source of T3 via desiccated (such as the NatureThroid, which contains both) or synthetic hormones, such as cytomel.
Needing T3 doesn't necessarily mean your thyroid doesn't function at all; it could mean there's something else that doesn't function just right.
Thyroid 101... Your thyroid, mostly, produces the T4 hormone. Of the Total T4 that's produced, most is bound by a protein, so it can't be used. That's why we measure Free T4; we need to know how much is "unbound"/Free to be used; however, here's the kicker...Free T4 isn't used directly.
It must be converted to T3, which is the hormone used by almost every individual cell in your body. As with T4, most of the T3 in your blood is bound by a protein and can't be used; therefore, we measure "unbound"/Free T3 to find out how much is actually available for use by individual cells.
Sometimes, the thyroid produces or we take enough T4, but there's an issue with the conversion process, so you can have enough T4, but not enough T3. This is when we have to add a source of T3 via desiccated (such as the NatureThroid, which contains both) or synthetic hormones, such as cytomel.
Oh. Also, my antibodies were very high and they were specifically for Hashimotos. I told him my sister had it so he tested me specifically for hashis and it was positive. It was the only thing positive. They tested me for many autoimmune diseases like lupus, and RA and I was even tested for MS. All negative. I’ve had the works. Spinal tap, mri, ultra sound. I have two nodules on my thyroid on the right side. I’ve been through the ringer. Again this was 8 years ago. I just stop going to the doctor. I gave up. Thank you again for helping me.
Ok. So in October here are my results tsh .07- range .34-5.60 free t3 2.7 range 2.5-3.9 free t4 .84 range .71-1.85.
This was taken by my GP who said I’m overmedicated as well. This is what I’ve been hearing for 8 years. Confused is an understatement. Im currently trying to raise my levels because of my headaches and depression is killing me.
The naturopathic doctor changed me from naturethyroid to levoxyl and cytomel. To give it a try. Today was a bit better but now my head is killing me. It’s really scary. Prior to me stopping the meds my head was fine. Now the headaches come and go. I’m going to take some Motrin and hope it goes away.
This was taken by my GP who said I’m overmedicated as well. This is what I’ve been hearing for 8 years. Confused is an understatement. Im currently trying to raise my levels because of my headaches and depression is killing me.
The naturopathic doctor changed me from naturethyroid to levoxyl and cytomel. To give it a try. Today was a bit better but now my head is killing me. It’s really scary. Prior to me stopping the meds my head was fine. Now the headaches come and go. I’m going to take some Motrin and hope it goes away.
COMMUNITY LEADER
Thank you for your explanation; I have to agree that your story is something of a disaster and it's no wonder you're feeling sick and confused. You've, also, brought up some more questions...
An ANA test can't really diagnose Hashimoto's... It just tells you you an autoimmune condition. In order to diagnose Hashimotos', you have to have the specific antibody tests. Those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb). Have you ever had those?
I'm trying to figure out how nobody could think you're sick when your initial Free T4 was below the reference range, which indicates that your thyroid wasn't producing adequate hormones, then...
You said your Free T3 in October was below range; what was it, with the reference range? What medication and dosage were you on, then?
Was it the endo that changed you from the NatureThroid to Levoxyl and T3 medication?
An ANA test can't really diagnose Hashimoto's... It just tells you you an autoimmune condition. In order to diagnose Hashimotos', you have to have the specific antibody tests. Those are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb). Have you ever had those?
I'm trying to figure out how nobody could think you're sick when your initial Free T4 was below the reference range, which indicates that your thyroid wasn't producing adequate hormones, then...
You said your Free T3 in October was below range; what was it, with the reference range? What medication and dosage were you on, then?
Was it the endo that changed you from the NatureThroid to Levoxyl and T3 medication?
Please read the first two pages of the following link, and more, if you want to get into the discussion and scientific evidence for all that is recommended. Especially note Rec. 13 on page 13, about TSH suppression being a normal result for many people taking significant doses of thyroid med. After reading I am sure there will be questions, which we will be happy to answer.
http://www.thyroiduk.org/tuk/TUK_PDFs/The%20Diagnosis%20and%20Treatment%20of%20Hypothyroidism%20%20August%202017%20%20Update.pdf
http://www.thyroiduk.org/tuk/TUK_PDFs/The%20Diagnosis%20and%20Treatment%20of%20Hypothyroidism%20%20August%202017%20%20Update.pdf
I’m sorry that my spelling is so bad. I’m trying to get use to this. Those are the correct labs in my last post. That was after stopping all my medication.
Yes. I’m sorry I meant nature throid. Stupid speak to text. Lol. I stopped for 9 days. I’ve been back on for about 7 days. It’s been awful. Severe headaches, depression. I have never really had help through this. I’ve had a hard ti believing I’m sick because I was told for tsso long I wasn’t. My Endo is a sweetheart but she’s a tsh lover. She would not test my t3. My tsh was 1.27 t4 .65
COMMUNITY LEADER
Could you please explain your comment: "they started me on nature through aid medication"? I'm not sure what you mean by by that. Do you mean the doctor started you on the desiccated medication called NatureThroid?
How long has it been since you stopped taking the medication? When did you start taking the medication again and exactly what dosage did you take today?
Do you know what your actual thyroid hormone levels are? If you have a copy of the your current report, please post your results, with corresponding reference ranges.
How long has it been since you stopped taking the medication? When did you start taking the medication again and exactly what dosage did you take today?
Do you know what your actual thyroid hormone levels are? If you have a copy of the your current report, please post your results, with corresponding reference ranges.
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