Yes it was really scary experience for taking 100 mcg of synthoroid for a month by trusting my doctor and basically I became like hyperthyroid instead of hypothyroid. My TSH dropped as 0.01!!
(I really wished I could start the medication as a small dosage as many books or internet says...)
Please reply if you know....
1.What is your best healthy TSH and what dosage of synthoroid made you so?
2.Did your doctor start as small dosage as...?
3.Does anyone know those dosages are based on your TSH or your weigh..or else.?
Unfortunately, there are as many answers to question #1 as there are people with thyroid problems. The ideal "TSH" does not exist...we all have to experiment by trial and error and find where we are most comfortable. Likewise, the dose of Synthroid that will make you feel well is dependent on many things. Other people's experiences will not be the same as yours.
My doctor started me on a much too high dose also. I didn't know it at the time, but the dosing instructions for Synthroid (which are available at their website) state that if you are over 50 OR you have been hypo for more than a few months OR you have a history of a heart arrhythmia, the starting dose should be 12.5-25 mcg, increasing as tolerated. I fit all three categories, and I was started on 88 mcg...not a pretty sight!
Initial dosage is usually based on your weight. I believe the formula is 2.4 mcg per pound (this may not be exact). Once on meds, dosage adjustments should be made on the basis of free T3, free T4 and TSH. These are listed in the order of their importance. If your doctor is not testing FT3 and FT4, you need to either convince him to or find another doctor. Diagnosis and dosage adjustment by TSH alone is a prescription for misery.
After being on 88 mcg for a couple of weeks and having my arrhythmia go wild, I had to back off to 44 mcg and eventually 25 mcg and then start building very, very slowly. It took me over a year to get to 75 mcg where I've been stable since January...doubt I'll ever get to 88!
Goolarra is correct in her posting and also correct in the 'time frame'.
Synthroid and stabilisation of levels dont just happen overnight or in a few months.
That is why I get angry when a Doctor tells you "Take one pill a day and all will be well".
That is the biggest load of garbage going!
Levels can take a year, maybe even more for them to stabilise but it is also the patient who has to work hard at it.
You have to recognise your symptoms, use your own judgement, have your Doc work with you through this.If you feel hyper/hypo..tell the Doctor and ask if its possibel to increase/decrease. But always have levels done before a change in dosage.
Just by swallowing your Synthroid every morning, not getting regular testing, not logging down symptoms, not researching everything....you will get nowhere and be where you were when you first started the T4 med.
It takes hard work and determination to get there, to feel well again and YES, sometimes there are hiccups and bumpy roads but if you really want it bad enough, you wont stop until you do get answers and learn all there is to know about your condition as we are all different in our 'comfort levels'.
Then comes the 'tweaking' of meds where one day you may be on 75mcg then the next day 62.5mcg or you may be on a dose for 5 days a week and another dose for 2 days a week.
This all takes time and if the person has no patience going through this..then they sure learn patience as its not a simple cut and dried case of swallowing a pill each day and feeling wonderful.
Some people work on this for years...it all depends on the individual themselves.
Research as much as you can, ask questions, find out all you can about thyroid issues, conditions and symptoms.
I too had my T4 med increased too fast when I first became Hypo after RAI and had to start again from scratch.
I got to 75mcg and this was too much.
I am presently on 62.5mcg.
It is YOU that succeeds at wellness...not the T4 med alone.
I write this posting because so many dont know the 'ins and outs' of thyroid issues and I advise them to learn it.
Be proactive in your recovery and you will succeed.
Ask questions (as you are doing now) and you will find a lot of the answers you are looking for.
Good luck on your journey to wellness :)
Thank you so much for sharing your experiences and all the great comments you have posted in here. You don't know how happy I am to read your reply!
During the last six months, I have been talking/seeking advice from several family practice doctors, two endocrinologists, and three OB/GYN docs and no one ever explained things as you have...they only said things partially and one doctor even told me that 100mcg was just because COMMON dosage for patients (No explanation on TSH or weigh or any...)...and I was very furious to find out later on....
Your comments made much more sense and I really appreciate. Also to think about your shoe, you must had some rough time with your several dosage adjustments as well....I am so glad you found the right dosage for you so far..and
I wish you the best health!
Yes, my new journey began as I am pregnant (just found out as two weeks ago!) without knowing the right dosage and I must take some by bring my TSH down as many doctors recommended.
It is scary, but I must try to see.....
I continuously will seek my answers to hypothyroid!! Again, thank you so much.
I totally agree with what you said about Synthoroid type of medication. It would not work just overnight by taking a pill.
It is a long journey (sometime even lonely and miserable..) to deal with....
Also you are soooo right about watching our own health condition and keeping the record to meet the right dosage one day!!
We got to do it!!
Yes, I heard about that some doctors request patients to take those different dosages on depending on the day. That sounds so hard, but it may really necessary to maintain the one's health in the best way...? (I am assuming you did not have to go through by different dosage..right...?)
I really wish we have some good doctors around us. What I mean is be able to explain things better and assure the patients in a different way.....at least I could not meet a good one yet....
I even thought about having my own TSH checker machine!!, so I don't have to wait a week to find out my TSH, T4, T3 and everything. I know other countries do not have to wait a week, but over night to know TSH.
How come those checkers are not available as much as other medical machine?! Mmm.
Anyway thank you so much for posting your comments. I know that I am not alone to deal with this health issues.
You too, please take care of yourself and wish you well in health!!
I really appreciate.
I did have to go through every step of different doses and it wasnt easy but you do what you have too.
I would start week one on 50mcg
week 2 - 6 x 50mcg, 1 x 62.5mcg
week 4 - 5 x 50mcg , 2 x 62.5mcg
etc , etc, etc.
Not easy but you do it.
And Congrats to the news of a new bubs on the way!
Congratulations on the baby on the way---- yay for you...
I'm another who's gone through a series of dosage changes over the past year and 1/2. I have one whole shelf in my medicine cabinet full of various sized doses of med. I, too was started out on synthroid, but the ONE thing my doctor did right, was start me on a low dose (25 mcg) and work up at the rate of 25 mcg/week until I hit 125 mcg. THEN he really started messing up.
I'm currently at the "tweaking" stage. I've been on 75 mcg levothyroxin + 5 mcg cytomel and at my appt last week with my endo, we changed it to 75 mcg and 88 mcg on alternating days + the 5 mcg cytomel each day. The problem I'm having is trying to remember if "today is the day for 75 mcg or 88 mcg?" and am trying to figure out an easy way to keep up with it.
You mentioned a "TSH checker" - please don't try to manage your meds based only on TSH - that would be a recipe for disaster. MY TSH is very low and my pcp keeps wanting to lowers my med, but my FT4 and FT3 are not yet at the right levels and I'm still hypo in spite of the low TSH. Fortunately, that is not the doctor who is currently in charge of treating my thyroid issue.
Deb and goolarra gave some excellent advice. This can be a very long journey and it requires diligence and patience. Everyone is different and what's right for me, might not be right for you, so you can read the suggestions and comments from everyone here, which are extremely helpful for learning what may or may not work, but the bottom line is going to be what really works for YOU --------
For me, just knowing that I wasn't in this alone was the one thing that made a huge difference for me. Having such knowledgeable people to learn from was a huge bonus because I got so many ideas of what I could try. Without these people, I would not be anywhere near the point I am today.
Thank you so much to share your situation too!
I really appreciate.
Yes..I hope I can meet my baby....but right now I am still worrying about my untreated TSH condition may harmful to my tiny one...I will start my med (new dosage as 0.25mcg) from tomorrow. We will see...
I am glad your doctor was a good one to start you from a small dosage..
I think at least he/she knows what to do to patients..
I really hope you have right amount for yourself and being well.
Yes, thank you for sharing the story of your situation as taking different kind of med and dosages too! I heard about that. At least your endo doc know what he/she is doing..
yea? Wow...yes it sounds very complicated as what is today's dosage..? or which med I need to take at this moment and all that...I think you are doing great to take care of your health. I was wondering do you have any targeted number of TSH by those dosages? Could you eventually off those meds? I must check out Cytomel. I want to know what Cytomel does to our body..
Oh, so you think having TSH checker is not so great idea, ha?
Well...I think you are right too. Those checkers may not do well to figure out of
all kind of TSH, T4, T3, and all the other necessary reading by myself...
Maybe I should write a letter to OMRON or even Nintendo DS!! Ha!! Hey give us a better reading machine and when we press a button, it will tell us what we need for our thyroid health!! hahahaha.
So you said your FT4 and FT3 were not low (sorry my assumption..) yet and your doc wants to lower dosage...? Have you considered about lowering your dosage? Oh you said that is not the doctor in charge for your current dosages..
Well, the reason was....with my horrible one month experiences with 100mcg, that was the only time my FT4 went to high from normal range, so I thought bring down TSH (5.8 to 0.01..)from high to low may be work, but at the same time synthroid may do bring up FT4..? That was just I felt...that is why....
I was just really surprised about that because my FT4 were always stayed around 1 although my TSH went higher than normal range with no medication. I was wondering why my TSH went down with medication made my FT4 brought up....?
(Forgive me, but I am a still beginner, so just talking...)
Anyway more and more we learn about our health, things get better!
It is amazing that we all learn about our health so much! Until I was told as hypothyroid, I never even thought about thyroid in my life till this year!
Again you are so right...what works for one may not be work for another.
All we can do is share the information, view, and final decision is always in our own hands..
My goal is to not use any medication if I don't have to.
Again I have to see how I do with my second dosage trial and it would do me a good or not.
I may eventually have to have different dosages or meds or I will find out.
Well, wish you the best in health. Again thank you so much for sharing your story.
I feel really great to know that there are people like you and other folks that I am not alone to deal with this health issue!
I have a good Doctor who saw me first off on a weekly basis then fortnightly then each visit, the time difference was further aprt.
With each increase ...for example.....
If I found I was ok (symptom wise which I logged in a notebook)I would increase the T4 med by 12.5mcg fortnightly.
So one fortnight I would be on ...
Mon, Wed, Fri, Sun 62.5mcg
Tues, thurs, sat 50mcg.
Then if I felt ok and my FT4 and FT3 levels were still a little low I would change my dosage to...
Mon, Wed, Fri, Sat, Sun, 62.5mcg
Tues, Thurs 50mcg.
Get the idea?
Many think that the 12.5mcg doesnt make much difference but believe me , it does.
I kept a log of all my daily symptoms so that if the symptom came up again, I would look in the book and see the last time I ached ..I was Hypo or the last time my pulse was up to 120, I took beta blockers.
A notebook is an excellent way of recognising your symptoms.
But because of severe medical sensitivity, I had fortnightly blood tests after until I was stable with my labs.
The thing with the low TSH - it sounds like you are trying to adjust your med based on TSH alone. Synthroid is a T4 med, so it should raise your FT4 as it brings your TSH down, but what about Free T3? Have you had that done? That is the primary thyroid hormone that is used by the body and is the most important one to check on a regular basis. Your body has to convert T4 to T3 in order to use it, so T3 is the actual hormone your body uses. That's why I take cytomel - because I don't convert properly; cytomel is a T3 med, so does not need to be converted in the body - it's ready to be used as soon as it enters the body, so it's fast acting and leaves the body within a short period of time. Cytomel is a very potent med (about 4 times more potent than T4 med) and should taken only if necessary and then in smaller doses. It's always important to test for Free T3, but when taking a T3 med, it's even more critical to test Free T3 levels regularly, along with Free T4 and TSH.
I don't worry about my TSH as long as my free T3 and free T4 are where they should be and I'm feeling good.
Once you have a hypothyroid condition, you will most likely not be able to stop taking meds. Have you been tested for antibodies yet, to determine if you have Hashimoto's Disease? Or an ultra sound to check for nodules, etc?
Keep reading and learning - it's not easy to determine how best to treat hypothyroidism. Good luck and I hope you'll keep posting.
That makes a sense! Different dosages and different meds are the great results of doctors and patients' hard work and wonderful inputs!! Ah ha.
I noticed that many doctors around me said TSH or other blood work should not be checked weekly or even daily but we the patients do know there are differences in our daily body condition!
My case is I have no luck in meeting a great endo or experienced doctor who understands what is going on with patient...
I feel like I became like a crazy patient with too many questions and tell them some new information and demands all the time. I really am tired sometimes that primary care doctors don't know what we go through....
Just having the medication does not mean anything to us....we need support from doctors to walk with us this long hard road....I hope I can meet someone who cares and understand one day. At least I am glad to read people like you all in here this community. You guys are so educated people!
Until then I will continuously seek the answers and will try my best!
To be honest, my doctors don't even know what to look at it to begin with.
Fortunately one endo doc mentioned that I need to have antibody check and
They don't think I have Hashimoto diseases. I thought about that in the very beginning.
You know it is funny thing is...I have T4 is in normal range, but went to odd number because I took the Synthroid. T4 will go high and bring down TSH, ha? Great to know and it makes sense..
I don't think they really have checked my T3 unless Triiodothyronine Free is T3 then 2.7.
Ah ha. So Cytomel is the med for T3. Thank you.
Thyroid Ab Panel is the antibody right?
I have never done to check the nodules. Is it for more likely to find out thyroid itself may have significant cause or so?
I really wished I would have been managed the dosage and all my thyroid condition
stable before I get pregnant. I have been waited for so long to conceive and suddenly my dream came true and now I am panicked everyday for my development of fetus to be....
I only could felt really moment of happiness and other days are so miserable of worrying about my thyroid medication. Doctors are easy to say "Just take it. Increase the dosage!" but how could I? Without knowing what is right for my body and how could I increase...you know?
Anyway you all's comments really have been helpful and I feel like you guys are next to me and I feel all right.
Yes, I keep researching...I better go to the lab to get my med.
I found out with my doc that i have thyroid problem. she took my blood and gave me Synthroid without educating me and i started yesterday taking one tab every day. the strength is 100MGC on the bottle. I am not sure whether this is consider to be high or low. Could you please explain it to me what is this? could you also tell me if my body is producing more iodine or less iodine considering I am on 100MGC.
I dont understand the whole story about thyroid and started taking med.... is there any nutural med for this instead of taking this un-natural med
thanks in advance for your valuable time and sharing.
There is no magical TSH number. When my TSH was at 4.9 I wanted to sleep all the time. I would become exhausted walking my dog around the bIock. I have been on 100mcg for two months now and my TSH is 0.01, but this is the best I have felt in a long time. I have NO hyperthyroidism signs or symptoms at this level. I have plenty of energy during the day and can sleep soundly at night.
On the other hand, I have a friend who feels best when her TSH is between 2.0 and 3.0. My son feels fine with his TSH level at 5.7. It is just a number and everyone is different. It's a "guideline". I hope you all find your best level and feel well!
Thanks for joining us here on the Forum. I hope you will continue to do so.
I totally agree that TSH should not be used as a diagnostic by which to medicate a hypo patient. Even though TSH is supposed to accurately reflect levels of the thyroid hormones, it cannot be shown to correlate well with either Free T3 or Free T4. After starting on thyroid meds, TSH is basically a useless test. When taking thyroid meds, a suppressed TSH does not mean you are hyper unless you do have hyper symptoms, due to excessive levels of Free T3 and Free T4.
In fact, you might be interested to know that there are numerous studies showing that no thyroid related tests are adequate to determine when medication dosage is adequate. As you said, ranges should only be considered guidelines. Further to that they should only be used as guidelines within which to treat a hypo patient clinically, by adjusting Free T3 and Free T4 as necessary to relieve symptoms.
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