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    Old 09-23-2005, 07:35 PM   #1
    glo81
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    dosage question

    Hi the last time I was at my endo's I was on .75 synthroid. The last time I was there it was July 18th. Since then I have self medicated my self and went up to .1. My doc. won't raise this until he sees bloodwork. They do not do bloodwork in office so they sent me to a lab and guess what? They screwed up my bloodwork and I had to get it done all over again. So that meant I had to wait 2 more weeks. They finally have the blood work and they got me an appointment for Mon. Here's what happens. Everytime I get a dose increase I feel great. This last a total of 2-3 weeks. Last week I started getting bloated again, night sweats, memory problem, weight gain, fatigue,sleeping horrible, Acid reflux got worse, I was so drained
    that I was having so much trouble getting up for work I was late one day. People in work were asking me why I look so tired and why I'm moving so slow. So I increased myself again to .125. Like magic after 2 days I felt wonderful. I was on the .1's for about a month. So I increased myself 50mcg since last time I seen the doctor. My first question is: How do I tell my doctor that when I had my bloodwork I was already on the .1 when he thought I was on .75 and now that stopped working and I did it again and am now on .125? He is going to be really annoyed. Second question: Why does this keep happening to me that after 2-3 wks. I need another increase? Why do I feel great and then feel so bad? I am so confused about this. Any explaination will be greatly appreciated.

    Thanx

     
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    Old 09-24-2005, 07:00 AM   #2
    merrillin
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    Re: dosage question

    glo,
    one thing that can happen as you titrate your meds upwards is that when your body becomes comfortable with the dose, if it is still not enough the symptoms return. I totally do understand your self medicating issues, but try and find a dr who will raise your meds, or at least just come clean and tell your dr that you have done this. I know how hard it is to feel lilke you need an increase and to go ahead an up your meds, but you know each time I have felt like doing this, I just wait and follow my dr's plan and he is always right. It takes up to 6 weeks for a med increase to show up in your blood tests and you really need to follow that plan because a dose takes that long to effect you also. It is so hard not to get impatient, but really it makes more sense to titrate up slow and keep up with the bloodwork and dr's plan.

    Karen

     
    Old 09-24-2005, 01:46 PM   #3
    glo81
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    Re: dosage question

    Thanks for the response. I really can't tolerate the hypo symptons I have a 40 hr. a week job. When I get these symptoms I can't even get myself up for work and when I do go in I can't function. I think what you said about finding a doctor up that will up my dosage would be a good Idea but I don't know if I can find one who will up me 50mcg. I can't wait 6 wks for meds to kick in and find it wasn't the right dosage anyway. I'm a busy person and this slows me completely down where I miss events and feel totally drained where people see this and tell me how terrible I look and how I look like I have no energy. I can understand being fatigued at times but I can't handle that drained feeling. When I increase all these horrible symptoms go away. I will find out Monday what the doctor will do and what my bloodwork is.

     
    Old 09-24-2005, 05:55 PM   #4
    pixiek
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    Re: dosage question

    Yes, I found that slow is best, HOWEVER, I understand you upping when you are not feeling well, and personally, I think it is possible for some to adjust more quickly...I did and had the blood work to prove it...another HOWEVER, the blood work does not always tell the whole story as it can look great but the meds still have not had time to get into the cells.

    I like to say always trust your doctor, but doctors do not know everything and they do not live in your body. I would say a combination of the two. Yes, do come clean, but let him know also what happened as the result of your "experiment" and how you felt...felt better! Then you might want to promise together with him, both of you in agreement, how long you will remain at a certain dose....Does this help? Hope so! Pixiek

     
    Old 09-25-2005, 08:05 AM   #5
    glo81
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    Re: dosage question

    Yes Pixie this helps alot. Thank you so much for the advice. Another thing that happens when my my dosage is too low I look terribe and everyone sees it. People ask me am I alright. They tell me you look so tired and ever tell me you look terrible you should get some rest. Yes I have mirrors in work. But the mirrors are people. When I increased everyone noticed how much better I look and told me you must be feeling better you look great.I just have a couple questions I hope you can answer. Is 125 a really high dose? Why did I need to go so high? Is my thyroid completey not working? Also is there a dosage comes between 100 and 125? Believe me I would love go on a lower dosage if I did feel so bad. Will this happen? Will I feel better and be able to decrease my dosage?

    Thanx, Glo

    Last edited by glo81; 09-25-2005 at 08:13 AM.

     
    Old 09-25-2005, 08:13 AM   #6
    merrillin
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    Re: dosage question

    glo,
    It is so hard to wait. I didn't mean to imply I have not tweaked my own dose too. Listen if one dr won't listen I just go to another one of mine who I know always will up the dose. I am taking 175 every other day and then 150 on the others. Sometimes you just need a high dose. The 125 is a very common dose and not too high at all. It comes in up to 300 mcgs. Also, there is a dose of 112 that would be between the 100 and 125.

    I also am on the Cytomel and I take that differently than prescribed. Sometimes these dr's just don't get how bad a person feels and when you have those meds it is VERY hard to not just go ahead and tweak things, especially if you can keep a check on yourself. Just keep track of your pulse and bp if you can and it should be ok. I check mine daily and keep a record, that way if I am messing with things, I know to back off. The real way to get into big trouble is to start having hyper symptoms and to ignore them, but since you are feeling well, you probably need these increases. It takes a looooong time for a dr to get you from 50 to 150 if you need it and it seems like they expect you to put your life on hold while you up your dose 25mcgs at a time. Keep me posted on how you are doing.'
    Karen

     
    Old 09-25-2005, 08:31 AM   #7
    glo81
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    Re: dosage question

    Thank you Karen for understanding. It's nice to talk to people who really understand what your going through. You've taught me so much. I love this board. One question what is Cytomel? Should I be on this?

    Thanx again,

    Glo

     
    Old 09-25-2005, 09:37 AM   #8
    merrillin
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    Re: dosage question

    glo,
    Cytomel is t3. The synthroid is only t4. That is like when you see folks talking about being on Armour it is because it has both t3 and t4 in it. You might need some t3, alot of people do with thyroid issues, the thing is alot of dr's just don't seem to understand this and think that synthroid is the answer to all the problems. I don't know, I happened to luck out with an endo. He wasn't really interested in any of my labs and was more interested in my symptoms. I am so glad because I think after a TT you need more focus on symptoms rather than those labs. You labs can be an absolute mess after a TT so it helps to have a dr who listens to symptoms.

    You can ask about adding some t3. My endo told me that adding some t3 is good when you are upping your t4 but still are fighting some bloating and tiredness. That is why he added it for me. I don't really have any hypo symptoms and am feeling really good on the t4 so I just asked if I could try some t3 and he was fine with it. Have you ever had a free t3 test run ? Actually, if your main symptom is the tiredness you might really need a little t3. I am taking just 5 mcgs a day. I am allowed to take up to 25mcgs a day and am just kind of playing with it right now to see how much I need. That is one reason it really helps to go from dr to dr til you find one who REALLY gets it that your symptoms are what matters and not those tests. It is emotionally and financially draining changing drs alot, but, in the end it sure as heck is worth it.

    How long have you been on meds at all?

    Karen

     
    Old 09-25-2005, 12:16 PM   #9
    glo81
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    Re: dosage question

    I've been on medications since May. I will ask my doctor about cytomel. Right now I'm feeling great on 125. I don't know how my doctors gonna take it. Me upping my dosage by 50mcg. I haven't seen him since July 18th. It's been too long. My main symptoms are Bloating, irritable bowel, Drained feeling, Horseness in my voice, depression, a little weight gain, acid reflux, sleep problems, then when I wake up I'm groggy and can't get out of bed and last but not least memory problems. When I increase my dosage tall the symptoms miraculiously disappear. Isn't this amazing. I have no hypo symptoms now but after 2-3 wks. this usually changes. Hopefully this will be the correct dosage and I'll be able to go the whole 6 weeks and feel as I do now. I'll keep my fingers crossed. I hope my doctor does not have a fit tommorrow when he sees me and I tell him what I've been doing.

     
    Old 09-25-2005, 12:23 PM   #10
    glo81
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    Re: dosage question

    Sorry forgot to add night sweats.

     
    Old 09-25-2005, 12:31 PM   #11
    merrillin
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    Re: dosage question

    glo,
    those are all symptoms of hypo so really as I see it, he has made you wait WAAAY too long from July to be seen again. He should have given you a dose and then see how you were doing in 4-6 weeks, not wait so long if you are having symptoms. I know it is hard to get a dr to see that though. Let me know if he has a fit.

    I had to come clean last week. My endo's nurse had called and wanted me to go to 150 for a quick boost ( this was a few weeks ago) and then go back to 100. Well, I took the 150 and felt really good and noticed a difference so I went to see the surgeon in the meantime and told him and I got a script out of him for the 150's. When I went in to get my bloodwork this week at the endo's office I just called and told the nurse upfront that "Oh, by the way I am still on 150", they never said a word and what could they say because my tsh was still high and I am not having problems. Hopefully yours will treat you well. I think the most important thing about tweaking your own dose is to make sure you always let the dr know what is going on.

    Good luck and let me know how you make out when you fess up

    Karen

     
    Old 09-25-2005, 04:42 PM   #12
    glo81
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    Re: dosage question

    Thanks soo much for all the support. I'll let you know how I make out.

     
    Old 09-25-2005, 06:24 PM   #13
    pixiek
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    Re: dosage question

    Hi Glo81: Yes, I agree with Karen, and she is giving great advice in my opinion! Also, about the night sweats...can't remember, have you gone though or are going through menopause or perimenopause? If so a trip to the GYN for some blood work may clear up the other hormonal issues. When I posted on the meno board I found so many similar symptoms of meno and hypo. On that board, some folks get relief from night sweats with low dose birth contol pills and or other hormonal help...meds or natural type,...I am heading that route now as no matter what I try with the thyroid meds, some symptoms just don't go away and they may be perimeno related rather than thyroid related...so confusing! Hope my experience may help...Pixiek

     
    Old 09-25-2005, 08:15 PM   #14
    2smiles
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    Smile Re: dosage question

    Depending on why you are on Synthroid, 125 mcg is not a high dose. I don't know what current guidelines are, but it used to be 100 mcg per 100 lbs of body weight for women. But guess what! The studies that were done to determine this used postmenopausal women (in the early 20th century!). As I told my doctors years ago, there is a huge difference between a postmenopausal woman and a 20-something or even 30-something)-year old!

    After trial and error, we discovered that 300 mcg makes my blood work come out "right" for total suppression. However, I still have significant hypo symptoms. Accidental double dosing and some experimentation showed that at 500 mcg I don't have any hypo symptoms, except the weight thing. I feel good, and I don't have any hyper symptoms. After 200 mcg, we worked in 100 mcg increments. It has been suggested that I am resistant to Synthroid... Through trial and error, we also determined that for me there is a significant serum difference between Synthroid and generic.

    And I know some other people that are on the same and larger doses than me...

    Good luck!

     
    Old 09-26-2005, 04:20 AM   #15
    glo81
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    Re: dosage question

    Hi again, First let me tell you I've already been to obgyn a few weeks again. She told me she dosen't think I'm menopausal yet. I am also already on a low dose birth control pill (loestrin). She did the bloodwork even did a pregnacy test because I missed a period. She assured me that being on the birth control so long (20 yrs) would cause missed periods. I am 42 5'6" 138 lbs. There is no history of early menopause in my family. I got my results yesterday and the bloodwork came out normal. When I increased my own dosage the nightsweats and all the other horrible symptons went away. Also went to GP for colonosophy and they didn't find anything either. When my dosage was increase by myself the irritable bow went away also. So if the amount of 100mcgs go by weight I guess I'm close to being there. Just thought I'd give that info. so everyone has a better view of my situation and we can narrow it down to one thing.

    Thanx, Glo

     
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