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Stop Taking Levo?
I have been on levothyroxine for about three months. I started at 50mcg and am now on 75mcg. I have been having pain in my legs and feet really bad. Was one of my original symptoms. My second TSH had not changed from the first when.my dosage was raised. I am thinking the 25mcg difference is not getting me to where I need to be either. Anyway called doctor regarding an increase due to leg and foot pain. She told me to stop taking my levo and come in. I am not going to stop taking it. I finally feel human again and not on the brink of death. I have Hashimoto's and a Goiter why would I stop taking medicine? The pain in my legs and feet are when I stand up it takes a few for me to be able to walk without pain. Maybe this symptom is not hypo?
My current Dr. just answered some of my questions. The one concerning Are you willing to test and adjust free T3 and free T4 levels with whatever type of medication is necessary to relieve symptoms, without being constrained by resultant TSH levels? She answered "We can check free T4 but checking free T3 every time is a waste of resources".
Optimal range she said for my age is 1-2.5.
Optimal range she said for my age is 1-2.5.
You people are so wonderful here. It is very helpful to someone new just knowing that they are not crazy. Sometimes I feel crazy after talking to the doctors. Sometimes other people just do not get it. Friends sometimes do not believe that this is happening.
Super_Sally888: Eight is my favorite number by the way. Anyway, I appreciate the understanding of my new doctor. I think I am on the right track with her. I sure hope so anyway. It sounds as if she will be more aggressive than the other one. Now I just have to make it to the 16th of August.
Thanks to all who have answered here. You are all the best.
Super_Sally888: Eight is my favorite number by the way. Anyway, I appreciate the understanding of my new doctor. I think I am on the right track with her. I sure hope so anyway. It sounds as if she will be more aggressive than the other one. Now I just have to make it to the 16th of August.
Thanks to all who have answered here. You are all the best.
Oh, it can take a while for the foot and muscle pain to ressolve after you get your levels optimised, and you certainly don't yet have them optimised. I would think an increase up to 100 mcg with testing in 6 weeks.
And the new endo sounds like a decent starting point.
I think I understand about the TSH comment. This could mean that she does refer to the TSH in adjustment of medications, unless the TSH is inapprpriately low considering the FT3 and FT4 levels.
My endo has the same approach. He usually looks at TSH, if it appears to be moving appropriately in relation to FT3 and FT4. however, in patients like me, where TSH is always low, he disregards TSH and looks at the Frees only.
And the new endo sounds like a decent starting point.
I think I understand about the TSH comment. This could mean that she does refer to the TSH in adjustment of medications, unless the TSH is inapprpriately low considering the FT3 and FT4 levels.
My endo has the same approach. He usually looks at TSH, if it appears to be moving appropriately in relation to FT3 and FT4. however, in patients like me, where TSH is always low, he disregards TSH and looks at the Frees only.
Well, there are a lot of symptoms that can be from Hashi or other health issues. Docs just like to blame it on 'other issues' and then tell you they have no idea what those 'other issues' are.
Your foot and calf pain could be from something else, but Hashi is a known cause in some people that have it. Tight hamstring muscles can pull on the calf muscles , which can pull on the plantar facia. There all connected. Need to where several different pairs of shoes per week too.
Some people have certain vitamin deficiency that causes muscle pain too, good idea to get Magnesium, B12, D, Calcium cheched too - remember if your on one of these, your test will be flawed.
Many docs do not believe in using T3, sad but true.
Your foot and calf pain could be from something else, but Hashi is a known cause in some people that have it. Tight hamstring muscles can pull on the calf muscles , which can pull on the plantar facia. There all connected. Need to where several different pairs of shoes per week too.
Some people have certain vitamin deficiency that causes muscle pain too, good idea to get Magnesium, B12, D, Calcium cheched too - remember if your on one of these, your test will be flawed.
Many docs do not believe in using T3, sad but true.
Thank you for your response. My doctor I think is flat out something.......
You are so right it is right up my calf. I have had this pain there off and on for years and the foot thing is new. I have very muscular calves and they cramp up really bad sometimes while walking. This doctor is supposed to answer the questions I had presented to the new doctor and fax them to me. I should have them in the morning. It is the questions that Gimel posted above. I am anxious to see her answers. Shouldn't an endocrinologist have a lot more Thyroid patients than they obviously do? They should have many more patients with the same complaints and symptoms.
You are so right it is right up my calf. I have had this pain there off and on for years and the foot thing is new. I have very muscular calves and they cramp up really bad sometimes while walking. This doctor is supposed to answer the questions I had presented to the new doctor and fax them to me. I should have them in the morning. It is the questions that Gimel posted above. I am anxious to see her answers. Shouldn't an endocrinologist have a lot more Thyroid patients than they obviously do? They should have many more patients with the same complaints and symptoms.
" I asked her was leg and foot pain a symptom of hypothyroid or Hashimoto's and she said no"
- Your doctor is flat out wrong.
Hashimoto can magnify body pain in many, not all. Foot pain and calf cramps with Hashi is not that uncommon. It can become chronic needing deep tissue therapeutic massage to get 'nutrients' flowing again. Same with back, neck pain and carpel tunnel symptoms. Some need a T3 med (cytomel or dessicated) to help with this even if proper thyroid levels can be achieved on T4 med alone. My doc estimates about 5 - 10% of Hashimoto patients he sees are like this.
- Your doctor is flat out wrong.
Hashimoto can magnify body pain in many, not all. Foot pain and calf cramps with Hashi is not that uncommon. It can become chronic needing deep tissue therapeutic massage to get 'nutrients' flowing again. Same with back, neck pain and carpel tunnel symptoms. Some need a T3 med (cytomel or dessicated) to help with this even if proper thyroid levels can be achieved on T4 med alone. My doc estimates about 5 - 10% of Hashimoto patients he sees are like this.
My doctor called me today regarding some questions I had for her. She told me that she said for me to stop taking the levothyroxine for a couple of days and come in for an appointment after I called her office and said that my symptoms were returning and my legs and feet were hurting. So she explained to me that the medicine would not cause leg and foot pain. Told her that I understood that this was not a side affect. I asked her was leg and foot pain a symptom of hypothyroid or Hashimoto's and she said no that is why she wanted me to come into the office. So is this a symptom or is it not. I can understand if it is not a symptom why she would want to see me. I already have an appointment with another thyroid doctor anyway but I wanted to get my medicine increased sooner.
5/12/2010
TSH---3.82 (0.40-4.20)
Free T4---0.9 (0.6-2.7
Peroxidase Antibody 164.3
6/19/2010
Same Ranges
TSH---3.97
Free T4---0.9
Free T3---2.5 (2.1-4.4)
My symptoms right now are off and on fatigue. Neck sensitivity and irritation. Leg and foot pain. Scalp acne (this drives me nuts, it is very painful). And again with the brain fog. It seems that it when I start a new dosage the symptoms are alieviated for a few weeks and then come back. Is this normal? Also some days I will feel GREAT and others I am back to rock bottom. I am going to have to drop out of school until I can get this under control.
5/12/2010
TSH---3.82 (0.40-4.20)
Free T4---0.9 (0.6-2.7
Peroxidase Antibody 164.3
6/19/2010
Same Ranges
TSH---3.97
Free T4---0.9
Free T3---2.5 (2.1-4.4)
My symptoms right now are off and on fatigue. Neck sensitivity and irritation. Leg and foot pain. Scalp acne (this drives me nuts, it is very painful). And again with the brain fog. It seems that it when I start a new dosage the symptoms are alieviated for a few weeks and then come back. Is this normal? Also some days I will feel GREAT and others I am back to rock bottom. I am going to have to drop out of school until I can get this under control.
I noticed the inconsistencies also. I was relieved that she did not just say it looks normal you are good. I am happy she is willing to work for a lower TSH. I agree if I have a conversion issue I can then move on. I am frustrated that this has to be such a fight.
I sent my current endo the same questions so we will see what she responds. I also asked for an increase in my Levothyroxine. I faxed the questions to her as there might be some translation errors in my leaving messages for her.
I sent my current endo the same questions so we will see what she responds. I also asked for an increase in my Levothyroxine. I faxed the questions to her as there might be some translation errors in my leaving messages for her.
Sounds like you could at least get started in the right direction with this doctor. I am concerned about some inconsistency in the answers.
She said yes, to testing and adjusting FT3 and FT4 levels to relieve symptoms, without being constrained by resultant TSH levels. That is exactly the right approach; however, if it should turn out that your body doesn't covert T4 to T3 adequately, then you could need a separate source of T3, which doctor is not willing to prescribe. You will need to explore this further as you proceed.
Second concern is that she said "goes by the TSH unless low". Don't understand this. How can she treat for symptoms and also treat by TSH? Can't do both. You treat symptoms by adjusting FT3 and FT4 as necessary to relieve symptoms. TSH will change accordingly dependent primarily on FT4 levels. Therefore, you can't adjust both the frees and TSH independently. You adjust the Frees, you get what you get with TSH.
She said yes, to testing and adjusting FT3 and FT4 levels to relieve symptoms, without being constrained by resultant TSH levels. That is exactly the right approach; however, if it should turn out that your body doesn't covert T4 to T3 adequately, then you could need a separate source of T3, which doctor is not willing to prescribe. You will need to explore this further as you proceed.
Second concern is that she said "goes by the TSH unless low". Don't understand this. How can she treat for symptoms and also treat by TSH? Can't do both. You treat symptoms by adjusting FT3 and FT4 as necessary to relieve symptoms. TSH will change accordingly dependent primarily on FT4 levels. Therefore, you can't adjust both the frees and TSH independently. You adjust the Frees, you get what you get with TSH.
Ok the doctor responded to my questions.
She said yes to test and adjust FT3 and FT4 levels to relieve symptoms without being constrained by resultant TSH levels.
She said NO she is not willing to prescribe medications other than T4 only types.
Asked her what the optimal levels were for TSH and the frees. For TSH she said 1-2 something that looks like uiu/ml. On the frees she said goes by the TSH unless low. She said my latest reading of 3.97 is not optimal.
What do you guys think? She is already better than my current one.
She said yes to test and adjust FT3 and FT4 levels to relieve symptoms without being constrained by resultant TSH levels.
She said NO she is not willing to prescribe medications other than T4 only types.
Asked her what the optimal levels were for TSH and the frees. For TSH she said 1-2 something that looks like uiu/ml. On the frees she said goes by the TSH unless low. She said my latest reading of 3.97 is not optimal.
What do you guys think? She is already better than my current one.
Ok the doctor responded to my questions.
She said yes to test and adjust FT3 and FT4 levels to relieve symptoms without being constrained by resultant TSH levels.
She said NO she is not willing to prescribe medications other than T4 only types.
Asked her what the optimal levels were for TSH and the frees. For TSH she said 1-2 something that looks like uiu/ml. On the frees she said goes by the TSH unless low. She said my latest reading of 3.97 is not optimal.
What do you guys think? She is already better than my current one.
She said yes to test and adjust FT3 and FT4 levels to relieve symptoms without being constrained by resultant TSH levels.
She said NO she is not willing to prescribe medications other than T4 only types.
Asked her what the optimal levels were for TSH and the frees. For TSH she said 1-2 something that looks like uiu/ml. On the frees she said goes by the TSH unless low. She said my latest reading of 3.97 is not optimal.
What do you guys think? She is already better than my current one.
I was not able to speak to a nurse. I asked could I email or fax questions and she advised I could fax the questions to her. I have yet to hear back. I also asked what the doctor thinks is the optimal levels for TSH and frees.
COMMUNITY LEADER
We have seen (rarely), that some doctors think once a patient gets into the "normal ranges" with the labs, that they are "cured" and no longer need med - that could have been what your doctor thought. The problem with that thinking is that as soon as you stop the med, your levels will plummet again.
You do have the TPO antibodies; therefore, that would indicate that you have Hashimoto's.
I agree with gimel that your FT3 and FT4 levels have quite a bit of room to go up.
You do have the TPO antibodies; therefore, that would indicate that you have Hashimoto's.
I agree with gimel that your FT3 and FT4 levels have quite a bit of room to go up.
Thank you Gimel. I agree I need to call first. It is just so frustrating that doctors do not really listen to what you are saying. I will call that doctors office back tomorrow. I think I was waiting for you guys to tell me what to ask again. Now I have it. I have just emailed your response to myself at work. I appreciate the feedback. This is my favorite site to come to. You are all wonderful.
I always forget to add the Antithyroglobulin AB is <0.9. Not sure what it means I guess is why I foget it.
Thanks in advance for your help.
Thanks in advance for your help.
5/12/2010
TSH---3.82 (0.40-4.20)
Free T4---0.9 (0.6-2.7
Peroxidase Antibody 164.3
6/19/2010
Same Ranges
TSH---3.97
Free T4---0.9
Free T3---2.5 (2.1-4.4)
So I was on 50mcg after the 5/13 results. I was changed to 75mcg after I argued that the numbers have not went down any from the previous testing. I still do not feel like the dosage is adjusted right. I feel better but I don't think I am at the optimal dosage. I was just shocked that the Dr. suggested that I quit taking the medicine. What possible reason could there be for that? I have an appointment with a different endo next month.
I am still wondering why when the doctor tells you that a normal person's TSH is about 2.5 that they have the ranges that they do for testing.
TSH---3.82 (0.40-4.20)
Free T4---0.9 (0.6-2.7
Peroxidase Antibody 164.3
6/19/2010
Same Ranges
TSH---3.97
Free T4---0.9
Free T3---2.5 (2.1-4.4)
So I was on 50mcg after the 5/13 results. I was changed to 75mcg after I argued that the numbers have not went down any from the previous testing. I still do not feel like the dosage is adjusted right. I feel better but I don't think I am at the optimal dosage. I was just shocked that the Dr. suggested that I quit taking the medicine. What possible reason could there be for that? I have an appointment with a different endo next month.
I am still wondering why when the doctor tells you that a normal person's TSH is about 2.5 that they have the ranges that they do for testing.
COMMUNITY LEADER
What are the actual results of your labs? We would need to know what your TSH, Free T3 and Free T4 are.
It's possible that your doctor started you off on a low dosage and will work you up. This is how it should be done, as it can be dangerous to start at a high dose.
It's common for those of us who are hypo to have the aches/pains you describe. You just may not have gotten to the right level of med yet.
Please post your most current labs, so members can comment more fully
It's possible that your doctor started you off on a low dosage and will work you up. This is how it should be done, as it can be dangerous to start at a high dose.
It's common for those of us who are hypo to have the aches/pains you describe. You just may not have gotten to the right level of med yet.
Please post your most current labs, so members can comment more fully
Thank you Cherlyq63. I have Diabetes also. I have never been to a leg doctor. I will definitely try the exercises. Also I have an appointment with a new endocrinologist from our University Hospital. Hopefully this brings me better results. It could also be a shoe issue as this is a symptom that comes and goes for me. I appreciate your great advise.
I agree I would not stop taking it, I have the same pain and you describe it perfectly. I was told it was plantar facialis(sp) and to stretch my legs and feet. This has not helped. My doctor is now interested as she has diagnosed me also diabetic so going to a leg doc next month. You can try the plantar exercises to see it that helps. Basically you put a tennis ball under foot and use it to stretch you foot arch. Also, how often do you change shoes, I was informed you should do this every 3 months or so, sometimes this makes a difference. Hope this helps, I feel your pain.
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I agree with you. I would not have wanted to start over and go through more discomfort when becoming even more hypo again. I also think that there is plenty of room to tweak your meds to move your FT3 and FT4 up in their ranges as necessary to relieve symptoms. Symptom relief should be all important.
Just a thought for you. Rather than wait and perhaps find out much later that the new Endo is not the good thyroid doctor you hope for, why not call now and ask one of the nurses a couple of questions. I would ask if the doctor is willing to test and adjust free T3 and free T4 levels with whatever type of medication is necessary to relieve symptoms, without being constrained by resultant TSH levels. Then I would ask if the doctor is willing to prescribe meds other than T4 only types. If the answer to either is no, then keep looking for a good thyroid doctor.