Please Help Me Understand My TSH Levels and Why I Feel Bad All The Time
My levels were:
Well 3 months ago I went to my Endocrinologist and told him that im not feeling much better I have been on Synthroid (100 MCG) for about the past 3 years and have not really felt “good”. I am a 26 year old female who is very healthy. I run 3 miles a day and eat very healthy. I have lost 45 lbs since beginning running 4 years ago. I now weigh 160 lbs. My weight fluctuates so horrible. I can easily gain 10 lbs in a week as well as lose 10 lbs in a week! I used to have beautiful healthy hair, nails until being on Synthroid. I have lost a lot of my hair and it is very thin now. During my visit in November 2010 (3 months ago) my Endocrinologist did lab work.
He said since they were level and I was still feeling bad, that we would try “Levoxyl 100 MCG”
Well I have been on it for 3 months. At first I didnt feel much difference. I suddenly saw my anxiety pretty much go away and did not have chest pains or high heart rate after eating meals. I also noticed I could tolerate alcohol a lot better and would barely have hangovers. I also noticed that I did not have an increase in heart rate after eating meals. I did not have much of a dry mouth on levoxyl. The only bad side effects I had were that I began to have sharp pains in my lower abdomen because I became very constipated. I felt very bloated on this medicine. I gained 10 lbs in 3 months on Levoxyl. Even with me dieting and running 3 miles a day, I still felt bloated and horrible about myself. I then began to feel moody. I never am moody and it seemed like the littlest things would upset me and was never like that before.
Have you been going to the same endo all this time? I would get a second opinion from a doctor with success among their patients. It seems like a very long time to wait for your body to adjust and find something that works. I could be wrong but I think you need a new doctor. Good luck.
Have you heard of Armour Thyroid? If you want to get info on it first, read Stop The Thyroid Madness. The book has helped me so much I'm telling everyone about it. I was on Synthroid for 2 years and ended up with bald spots, scalp acne, horrid mood swings and irritability, weight gain, fatigue, itchy skin, foggy brain, fuzzy spot off and on in my eye, cold toes and fingers, can't stand on my feet for long, blah blah blah.... the list of hypo symptoms is loooong and I've been increasingly experiencing more and more of them. I just started on Armour 2 weeks ago. After reading that book, I have high hopes that it'll give me better success that the Synthroid.
Yvih, yes I have heard about that site and book and am extremely anxious to read it. Synthroid made me feel absolutely horrible. I think they are treating me sometimes as if I have a thyroid left. Thanks for the advice. You feel better on Armour? Do you have energy? Did the cold spells go away? Let me know how it goes for you. Thanks again!
Hi - I'm seeing the doc again tomorrow. Think I'll ask about checking my adrenals. Just feels like the med not doing much - BUT it's only been 2 weeks. So far I might have a little more energy off and on. He also increased my vit d from 50000iu a week to 10000iu a day. I think it's too high and is making me have weird dreams and wake up all night. Lots of people on this community have comments about feeling worse before better. We'll see. Good Luck with your fight!
hi - does the range from the lab matter? i didn't think the range mattered but that everyone's levels would be the same no matter the lab. am i misinformed? so for example - if my free t3 is at 2.38 and yours is at 2.1 can we compare like that or do we need to know the ranges?
I just have a question about the labs - if we understand that the "normal" range for blood tests is not accurate since every one of us has a different normal - why do we need to know the lab ranges? Are you referencing just to have an idea? My doc told me he prefers to go by my symptoms and only does lab work to satisfy the medical board because the typical medical field doesn't like not looking at the numbers. ??? Am I missing something? Lately my brain is mush so maybe I'm way off base. ??
Thanks for clarifying it for me if I'm confused.......
Yes, you are missing something!! No, we aren't referencing "just to have an idea". Ranges vary from lab to lab, depending on how the test is run, as well as other variables. The idea is see where a person's levels fall within the range used by THEIR lab. No, you can't necessarily compare your 2.38 to someone elses 2.1, because if the lab ranges aren't the same, the levels will fall differently within the ranges. Not to mention that some labs use different units of measurement.
oooo ok. i never knew that the ways of measuring could be different. when i first got diagnosed people would ask me what my levels are so i understood that to mean levels are similar no matter what lab did the test. so it's not like grades where you get an A in labs and i get a D and we know what that means.
You said: "I think they are treating me sometimes as if I have a thyroid left". You don't have a thyroid, so that leaves you in the same boat as those of us who have a thyroid that doesn't work....... hypo!! Your hypothyroidism will be treated the same as ours.
Both your FT3 and FT4 are pretty low in their ranges, particularly, your FT3. It could be that you aren't converting FT4 to FT3 properly. Is there any way you might get your doctor to add a small trial dose of T3 med (cytomel or generic liiothyronine)?
You might also want to check out the newest T4 med, which is Tirosint. Tirosint came out in May of last year; it's a gelcap and is more completely dissolved and absorbed, not to mention it's as hypoallergenic as anything can get. While there have been a very few who did not do well on it, most who have tried it, see a difference rather quickly.
I've been on Tirosint since Aug 2010, and it only took a couple of weeks to begin seeing a huge difference, even though my FT3 is not where I'd like it to be yet.
No, you can't compare results from different labs, unless the ranges are the same (or at least quite similar). Yes, the ranges are flawed, in fact the whole bottom half of the range probably shouldn't be there. That's because the "normal" population that made up the ranges contained people with Hashi's and people with hypo symptoms who were not yet being treated. This is part of the reason that we always add the caution that just being "in" range is seldom sufficient to relieve symptoms and that midrange or above is where most of us want to be. However, we DO need the range to see where the midpoint is. Although the ranges are not exact to say the least, they do give us some framework within which to work.
I'll PM you something I wrote a while back about the proper use of reference ranges. It goes into more detail.
Once we establish our own personal comfort range within the reference range, we can compare ourselves to ourselves, and use the levels where WE felt good individually instead of the population range. (Sometime that can be a rather drawn-out process.)
i guess the fact that there are "normal" ranges posted for general use led me to believe we could all compare - even though the "normal" isn't really normal. so bascially my labs would have been different if i'd had another lab do them? got it........
Right, and in fact, there are times when a lab will assay it's methodology and change it's reference range. So, even if you keep going to the same lab, things can change. In fact, the FT4 range my lab uses has been adjusted the last two times I had labs.
So, yes, we never type "normal" without the quotes; we don't really consider anything in the bottom half of the range as "normal", and what's "normal" for me, isn't for you! Makes you wonder how it ever got to be called "normal", doesn't it? BUT, the ranges do still have their uses. Unfortunately, very, very few of us have baseline levels from when our thyoids were healthy. So, we are forced to use the population range until we establish our own. Once we know where we feel our best, we can adjust meds and shoot for those levels, using them as a guide to symptom relief.
Thank you Goolarra for your help. The Endo sent me a prescription for Cytomel I will begin taking those tomorrow along with my Levoxyl. I feel so much better on Levoxyl than Synthroid. Synthroid made me feel HORRIBLE. I have not heard of Tirosint. Thats for the great advice. If I am not sucessful adding Cytomel, I will recoment Tirosint.
Seems like there is so much more for me to learn about this disorder. I am anxious to learn all there is.
I am a 66 year old female who had her thyroid and parathyroid glands completely removed a year ago. I take levothyroxine 125mg. daily. My recent labs were horrible and I feel horrible. I am exhausted all of the time, sleepy all the time, my brain feels like mush(I am a college teacher).
My results were as follows:
TSH third generation 6.44 range 0.40 - 4.50
T3 total 69 range 76-181
Does anyone have any suggestions. My endo just raised me from 115 to 125. It hasn't made a difference. The sleepy problem is getting worse every day. I am even afraid to drive. What is Trysolar? Do you think it would help?
I had seen a reference on here to Trysolar. What is Tirosint? When you say that total T3 is obsolete, do you mean that they have developed a better test? If so, I am going to insist that my endo send me to a better lab. What is cytomel?
Tirosint is a new product (within the past year). It's the same medicine as Synthroid or generic levo, but rather than a pill, it's a gelcap...hypoallergenic and more absorbable than the tablets.
Rather than total T3, you should ask for free T3. Total T3 tells the total amount of T3 in your blood, but much of that is chemically bound by protein and thus unavailable to your cells. FT3 tells what's available. Any lab will do it, your doctor just has to order it that way.
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