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Still having hypo symptoms while on medication

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Thyroid Disorders
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Posted 7/1/2010 6:04 AM (GMT -8)
I have been in treatement for hypothyroid since October 2009. My previous doctor had me on too much so that it was supressing my TSH levels to non existant.

My new doctor started from scratch and within 2 months I started experiencing weight gain, constipation and low energy. Even though my previous dose was wrong I was having none of these problems..ever

So now July 2010 and I am to the point of having to drink miralax every other day and the weight will not come off no matter what. I am a runner and have been for years. It is becoming more difficult to keep up my pace since I now have low stamina also.

I have been telling my doctor this for months but since all my levels are now in the normal range she won't do anything about it. She basically asked if I was upset about the weight gain...well yes since I had to go and buy new pants. (Had been wearing the same size for 6 years).

So I guess my question is can someone have hypo symptoms while on medication? I am taking 37.4 Levoxyl and 5mcg of cytomel daily. I am not sure what to do..find another doctor??

I wanted to add I also have 3 nodules on my thyroid which they are keeping an eye on.

I feel horrible and am getting desperate.

Kim

 

Posted 7/1/2010 11:33 AM (GMT -8)
I'm new to the joys of hypothyroidism (had it for a long time, but only recently began treatment). I don't know if I can help that much.

Is what you're taking now different from what you were taking before? I don't just mean dosages. I mean brands and types (natural versus synthetic). From what I've read, people respond differently to different types of medication, regardless of what their thyroid tests show.
Posted 7/1/2010 1:47 PM (GMT -8)
I am on the same brand of medication..just a different dose. I started having problems when the doctor changed the dose. She basically had me keep cutting back the levoxyl until my TSH went into the normal range.
At one point it was 2.07 and then 3 weeks later while I was on the same dose it raised to 5.78. So she upped the cytomel and the TSH came down again.

I have been on the same dose now since March and things are just getting worse. I think I should buy stock in the Miralax company. Plus I can't lose the weight I gained no matter what I do so I know something is wrong...I gained the weight from Feb-May 10 pounds.

I think I am going to have to find another doctor.
Posted 7/1/2010 2:50 PM (GMT -8)
I'm not the best person to help you with this, but I'll do what I can until someone with better advice comes along.

What kind of doctor do you see for your thyroid? Do you see an endocrinologist or just a general practitioner? A specialist may be able to help you more, but it can vary by doctor. From reading other people's experiences, it seems that some doctors just go by the numbers, while others are more willing to take into account how you feel. Fortunately for me, my GP seems to be the latter type.

What is your TSH right now? What about your T3 and T4? What range of TSH is your doctor targeting? My doctor is targeting 2.0 or something like that. Even though I'm now under 4.0 with some treatment, he wants me lower to alleviate the symptoms. I think that the target for TSH for someone in treatment should be 3.0 or lower, even though the normal maximum TSH is 4.0, but don't quote me on that. How long is your doctor waiting between re-tests? If you went from 2.07 to 5.78, then maybe your body needs a longer period of time to adjust to a new dose?

I'm not familiar with Levoxyl, but you may want to double-check whether any of the food, drinks, or supplements that you are taking might interfere with its absorption. Synthroid has a lot of restrictions. I'm not sure if Levoxyl is the same way. You might want to be sure that nothing you are ingesting is counter-acting the medication.

If you felt fine before, but you don't feel good now, then by all means consider seeing a different doctor.
Posted 7/1/2010 3:43 PM (GMT -8)
It just seems strange to me that I would all of the sudden have these problems. She has only changed my levoxyl twice since I started seeing her in October. Once in October and then again in December. I started having some constipation problems in late December but not enough to have to take something.

I had a physical in January and was at 126 for my weight. That is the same weight I have been for at least 8 years. I started noticing the weight gain in March and mentioned it to her plus the other problem.

She just said that she didn't want to change anything because it was all finally in the right range. For TSH (0.03-3.0) Mine has ranged since October from undetectable to 5.78. As of right now it is around 2.35 which is where she wants it.

When it went up to the 5.78 I had not had a medication change in 9 weeks which is why I think that is strange too.

My T3 and T4 have always been in range although on the low end of both.

I sent her a fax today and hope to get tested again next week. It has been about 10 weeks since my last blood test.

She is an endocrinologist...

I don't know maybe something else is going on...I have been on Levoxyl for almost 4 years now.

Thanks for your imput. I am just terribly frustrated with all of this.

 

Posted 7/1/2010 4:29 PM (GMT -8)
I can sympathize. You shouldn't be feeling like this. I'm not sure what else to suggest. A TSH of 2.35 sounds perfectly reasonable. It's not towards the higher end of the range. Can you trace back any other changes to that time period? Any changes in your diet?
Posted 7/1/2010 4:42 PM (GMT -8)
Welcome to HW,
You're right on the money about the levels. It does take 6-7 weeks for the medication to get in your system.

As for the constipation I take a daily dose of stool softener. It's less dramatic and helps a great deal. Also for really bad days you can pump yourself full of mineral oil (3 Tbsps every hour is fine if your major).

Diet changes can affect your absorption of the thyroid meds.I put up a post recently about all the things that will affect your medication and thyroid output.

Here's the link to the thread.https://www.healingwell.com/community/default.aspx?f=37&m=1798340

Just find couchtater's post.


Joy
Posted 7/2/2010 3:44 AM (GMT -8)
Joy-

Thank you for sending that link...wow I had no idea either. I printed it out so I could keep it close by. I only take half the dose of miralax or else it hurts my stomach.

So are you kind of saying that I will have to keep taking miralax? Maybe I will get a stool softner instead.  I guess I don't understand why all of the sudden after 4 years on medication I would need to do this.

I eat alot of fiber..haven't changed a thing and excercise, drink lots of water. All the same things I have always been doing.

Plus no matter what I can't even lose 1/2 pound of the 10 I gained in the past 5 months. GRRRRRR

I am seeing the doctor on the 21st so we will see what she has to say. 

I think maybe I will check with my pcp and see if I should be looking at some other reason for this..

Thanks for your thoughts!

 

Posted 7/2/2010 6:45 AM (GMT -8)

ktp812 said...
I eat alot of fiber..

How much fiber you ingest and when you take it could also be affecting your absorption of levoxyl. Are you taking more recently to counteract the constipation? You may need to discuss with your doctor how to take fiber and how to space it properly from when you take your medication.

www.levoxyl.com/patients/6.0_faq.asp#Q7
Posted 7/2/2010 7:31 AM (GMT -8)
I haven't changed my fiber intake..I guess I meant that I have always eaten foods high in fiber so why now am I having the problem with constipation. I seriously haven't changed anything including my eating habits or excercise.

Thanks for including the link on levoxyl..it was very interesting and I am learning new things everyday!

I am on a very low dose of levoxyl (37.5) so maybe I just need more. The doctor told me she doesn't want to increase it because 1. my TSH is in normal range 2. I have osteopenia and she doesn't want to harm my bones.

Oh well...

Posted 7/2/2010 8:38 AM (GMT -8)
IH8Ticks-  Were you ever treated for Lyme? I was in treatment for 30 months...not sure if I ever really had it or not.

Kim

Posted 7/2/2010 10:13 AM (GMT -8)

ktp812 said...
IH8Ticks- Were you ever treated for Lyme? I was in treatment for 30 months...not sure if I ever really had it or not.</DIV>


Kim

Yes, I have been in treatment for nearly 3 years now. I have a clinical diagnoses of Lyme and Bartonella (tested negative, but have all of the symptoms). I tested positive for Babesia. Lyme can cause hypothyroidism, but I believe that I may have had it since I was a teenager, based on my symptoms (fatigue, cold intolerance, etc.).

I'm not sure what else to suggest to you for your thyroid issues other than to possibly try a different medication. People seem to have different responses to different formulations, even if the active ingredients are the same. I am only taking Cytomel right now. I'm supposed to start Synthroid soon. I don't have enough personal experience to share with you. I can only go by what I've read online.
Posted 7/2/2010 11:38 AM (GMT -8)
IH8Ticks- Thanks for the information you shared..I don't know much about thyroid either. My Lyme doctor is the one who started treating me back in 2006 because I had a low normal TSH. I didn't have any symptoms of hypothyroid at the time. He just said that many people with Lyme have thyroid and adrenal problems.

He was giving me too much so that my TSH became suppressed but he said that was okay. Then he also put me on cortef which I am trying to wean off of. That has been a huge problem for me. It has taken me 8 months to go down only 10mgs. I am currently on 5mgs daily.

My new endo is the one who has changed up the dosages and told me I was primary hypo and not secondary like the lyme doctor said.  

I will let you know what she says when I hear back from her. I will probably have another blood test for both TSH and cortisol.

I was also treated for Bartonella and Babesia...

Posted 7/2/2010 2:35 PM (GMT -8)
No problem. I hope I've helped. All of this information can be hard to understand, but as they say, knowledge is power.

I think that you might be in a little bit of a tricky situation. Your Lyme doctor is going to see Lyme, and your Endocrinologist is going to see hypothyroidism. Who is right? Maybe a both.

Lyme and the other tick-borne diseases are tricky little bugs. They mimic other diseases and conditions, including each other. They also effect nearly every system in the body. Some of the symptoms of hypothyroidism can also be caused by Lyme and related infections: hair loss, weight loss or gain, joint pain, digestive issues (constipation, nausea, etc.), mood swings, and other things. It can be tricky to figure out which condition is causing which symptoms.

One thing that helps me is to catalog my symptoms. Many symptoms overlap, but some symptoms tend to be more specific to a particular disease. Can every symptom that you are feeling now, no matter how seemingly insignificant, be attributed to hypothyroidism?
Posted 7/2/2010 4:25 PM (GMT -8)
I can only believe that the few symptoms I am experiencing now are due to hypothyrodism. I am not sure why else they would all of the sudden start when my medication was changed.

I am no longer seeing the Lyme doctor as I completed my treatment a year ago. I still experience chronic fatigue and leg pain which were my two original symptoms. I felt that the abx were making me feel worse.

When I quit the lyme doctor I had to try and get off the cortef so I decided to see an endo. She is very much by the book and labs. So I am not sure if I will have to maybe see someone else. Maybe I will have to look into other reasons for my symptoms but I just remember that everytime I saw her she would ask me if I was having constipation, weight gain or losing my hair. At first I was saying no to all three but that changed and when I said yes to the first two she wouldn't change my dose anyway.

My worse problem is the chronic exhaustion and tiredness..she is talking about doing a ACTH STIM test for my adrenals but I read it isn't all that reliable and she doesn't believe in the saliva cortisol test...I was previously diagnosed with CFS which I do have chronic fatigue but none of the other symptoms of the syndrome...

Posted 7/2/2010 5:22 PM (GMT -8)
I had nodules on my thyroid that started enlarging, had a total thyroidectomy 12/08 and gained weight after that. Have to be on synthroid forever. But also am in menopause and wonder if this has contributed it to it too. Recently my levels have indicated hyperthyroid, but have all the s/s of hypo. a lot of things can affect your levels including stress. Also be sure you are taking it on an empty stomach. Only after having a fundoplication for gerd have I lost the weight. Prior to that, nothing helped. My endocrinologist listens to my symptoms and also bases my dosage on them. If your doc is not, it is okay to find another one that does (my first one did not)
Posted 7/3/2010 3:39 AM (GMT -8)
They are keeping an eye on my thyroid nodules. I am suppose to have it scanned every 6 months. They only looked because I had been complaining of my neck being sore..like swollen glands for 6 weeks. She felt my neck and said oh yes it is a little swollen. Finally a month later I called and said it was still sore so then they did the ultrasound.

She said they were not large enough to biopsy. I have 3 of them total. 2 small and 1 larger one.

I have just gained another pound...my body is beyond tired. I just know something is wrong here. Probably won't hear from the doctor till next week. She must have been on vacation or something last week..Even though it takes so long for the doses to kick in I think I am going to be feeling terrible for a while.

Yes if I don't have any luck with her then I am out of there. I think when she asked me if I was upset about gaining 8 pounds I knew I was going to have a problem.

I do take it first thing when I wake up in the morning and all my other supplements 3 hours later.

Posted 7/3/2010 9:15 AM (GMT -8)
If your supplements includes iron or magnesium wait 4 hrs. This helps prevent them from bonding with the synthoid.

Joy
Posted 7/3/2010 4:25 PM (GMT -8)
I take my calcium and magnesium at least 3 hours afterwards..maybe that isn't a long enough wait.
Posted 7/3/2010 5:50 PM (GMT -8)
Calcium also bonds with it. Waiting one more hour is best.

Joy
Posted 7/4/2010 3:55 AM (GMT -8)
okay..I will definately do that. I also occasionally take nexium and I think that is another one you have to take a few hours apart.
Posted 7/4/2010 5:07 AM (GMT -8)
Yes, it is. It has magnesium in it.

Joy
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