New to this

Hi all,

I always had hypothyroidism symptoms, except weight gain (i have opposite), so i was never tested, until a year ago, and I had TSH 7,40 then.

Doc sent me to some ultrasound(?) test that captured imaged of my neck but everything looked fine so I wasn't put on any meds.

One year since (this month) i got tested again by another doc, and now my TSH is 15. I saw another, third doc with results and he put me on Levothyroxine 25mcg a day.

I took it for 6 days, felt ok and maybe even a little better (could be placebo effect), so i decided to try 50mcg for the last 2 days, because i read that 25 is super low and you should normally up you dose by 25/week. However, I immediately started feeling bad - I cannot concentrate on anything, it's extremely hard to get out of bed and I just feel really tired.

Questions:

- Is this reaction to higher dose normal and 25 mcg is not too low for 15 TSH?

- Could it be that my iron deficiency interferes with Levothyroxine? Or any other deficiencies?

- Does anyone here also have the PCOS? Could this condition affect the Thyroid treatment?

Many thanks!!

16 Replies

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  • Ahhh! Don't do what you did!

    It takes 2 months to adjust to a dose of Levo, there's a reason we start low and build up. Levo stores in the body for 7 days and gets used as your body needs it, you won't even start feeling the effects for 2 weeks or so. You're expecting immediate results but you won't get them I'm sorry to say.

    Please don't randomly change your medication doses, you are playing with your hormones and metabolism. It's very important to build up slowly and adjust your body to the new doses, you could end up in the hospital if you increase too quickly.

  • Also TSH isn't related directly to dosage. Dosage is more based on body weight and how much activity is left in your thyroid.

    I have a family member who takes 50 mcg to bring them from a TSH of 2 down to 1. When I was given 50 mcg it brought my TSH from 20 down to 6. So it's not so cut and dry, we're not machines, it takes a lot of trial and error.

  • Thanks! I see!

    Should i conpensate by not taking any Levothyroxine for 2 days now? Or just go back to 1 a day right away?

  • Just go back to your regular dosage. You might feel low and tired this is normal as your body adjusts, you won't feel "normal" until you get to the right dose.

    Do you have a follow up with your doctor? Normally you'd get another blood test in 6-8 weeks to see if you need another increase (which you most likely will).

    Do you have any heart conditions or other health conditions? Doctors usually start at 50mcg, but 25 is recommended as starter dosage for some individuals. Also some doctors are overly cautious.

  • I do have a test sheduled in 8 weeks for TSH again.

    I'm going to my doc tonight to update him about taking Levothyroxine (i've only seen his replacements so far).

    I don't have any hearth or other "serious" conditions, i'm healthy like that... I just cannot function in society like a normal person heh.

    I think the replacement doc was very cautious, because he didn't even wanna give me a prescription at first, saying i have to see my normal doc first. But then he changed his mind...

    Also i just got my test results for TPO and, like, autoimmune stuff, and it looks completely fine. Don't know what that means.

  • If the antibody results came back under range it means you don't have Hashimoto's (an auto-immune condition that causes hypothyroidism). However there are cases where people actually do have Hashimoto's without testing high for antibodies, in this case an ultrasound would diagnose the Hashi's.

    So then the 50 mcg dose would probably be fine for you as starter. Your reaction is not likely due to the extra dosage you gave yourself, but rather you're feeling the effects of hypothyroidism.

    When you start medication, your TSH goes down, causing your thyroid to take it easy and not produce as much. So you can actually feel even more sluggish until you find the right balance, for some people that means completely suppressing the TSH response, for most it means having a TSH around 1 and FT3 and FT4 around 75% in their range (on Levo alone). It's possible that Levo might not suit you and you would need to try other options. But Levo works well for many people and you won't know until you get your TSH down.

  • I see! :O What are the alternatives to Levo?

  • Levo is a hormone called T4, our thyroids make mostly T4, which gets converted to T3 in our bodies. T3 is what we actually need to metabolize and feel healthy. Some people can't convert t4 to t3, so they require alternatives.

    So the alternatives are to take T3, a combination of t3/t4, or something called NDT which is thyroid hormone from pigs this has a combination of t3 and t4 along with some other hormones.

    But if you are a good converter Levo is the easiest treatment. You take it once a day and you're good to go. With the other options often you have to split doses throughout the day as T3 is a very fast acting hormone and doesn't store in your body the way t4 does.

    Don't worry about these alternatives just yet. The first step is to get your TSH down to 1. If you experience any reactions on the way there bring them up with your doctor as some people do react from the fillers of certain brands.

    If you get your TSH down to 1 and your still don't feel good it's time to investigate further. Whenever you get your blood tests done make sure you do them as early as possible in the morning, fasting (water is ok but nothing else) and don't take your medication until after your test as taking medication too soon before blood test can skew your results.

  • Alright, i will wait then. :)

    I actually was never tested for T3 and T4 levels, so maybe I should ask for that tonight.

    You said ultrasound should reveal Hashimoto's. I had an ultrasound a year ago and they said everything looked fine. That's why I guess they didn't put me on Levo then. What could possibly be causing my high TSH if it's not autoimmune though... Should I do a B12 test? Any other test I should ask my doctor for?

  • Personally I have Hashimoto's and I don't know so much about the other causes of hypothyroidism or high TSH. It might not be easy to convince your doctor right away to get t3 and t4 tested. I was able to get those when I didn't do well on Levo alone and my TSH was 1. By the way just in case, the F in FT3/4 stands for "free" which means how much of it is roaming around your blood waiting to be used. If this number is low it indicates that there isn't enough of it there for your body, normally if you do well on Levo you shouldn't have that problem.

    But definitely try to ask for the extra tests from your doctor.

    It would be a good idea to test B12, vitD, ferritin, iron, folate. As these are often deficient in hypos, and also an optimal level of these nutrients is required for your body to convert to t3 well. Notice the word "optimal" doctors won't treat you until you are desperately deficient, but that's not good enough for hypos. If you can get these tests, please ask you see your results and post them here and we can help.

    If your doctor gives you a hard time when you ask for your results, no need to fight them or argue, I always say I prefer to keep records of my health in case if I move or have to see a specialist. It's your right to have the results.

  • I'll ask tonight for all these to be tested then.

    I always get results of any tests first, before my doctor actually. Because I get them directly from the laboratory where I get tested and then need to bring the results to the doctor myself.

    Thank you!

  • Convinced my doc to add T3 to the test :) (apparently it's not recommended to test T3) However, he said I should do this test in 6 weeks, so we see how TSH is doing compared to before Levo.

    Doing a little better now I think on 25 mcg...

  • 50mcg is the usual starting dose with increments of 25mcg around every six to eight weeks until symptoms are relieved. We can also feel bad when starting levothyroxine, in fact I felt far worse than before I was diagnosd.

    I didn't put on weight either although it is common amongst many.

    PCOS is also a clinical symptom and I'll copy and paste an article and I don't have a link:

    Multiple Ovarian Cysts as

    a Major Symptom of Hypothyroidism

    The case I describe below is of importance to women with polycystic ovaries. If

    they have evidence, such as a high TSH, that conventional clinicians accept as evidence of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman't tissue thyroid status. Because of this, she may fair best by adopting self-directed are. At any rate, for women with ovarian cysts, this case is one of extreme importance.

    In 2008, doctors at the gynecology department in Gunma, Japan reported the case

    of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the

    gynecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.

    At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These

    imaging procedures showed multiple cysts on both her right and her left ovary.

    The woman's cholesterol level and liver function were increased. She also had a

    high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism. Blood testing also showed that the woman had primary hypothyroidism from autoimmune thyroiditis.

    It is noteworthy that the young woman's ovarian cysts completely disappeared soon

    after she began thyroid hormone therapy. Other researchers have reported girls with

    primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.

    The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an

    ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve the ovarian cysts."[1]

    Reference:

    1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

    multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

    24(10):586-589, 2008.

  • Whoa, yeah, I've heard that these 2 can be connected, but didn't hear anything like this.

    My high TSH/thyroid issue are apparently not connected to anything autoimmune though. I just got test results and it looks good. :0

  • Thanks for this, Shaws, as I know someone else who may find it useful.

  • UPDATE (and a question)

    I've had a miraculous recovery, I just saw my test results and I'm down to 3.56 mUI/L :O (TSH)

    I've stopped taking Levo about a month ago after I decided to try some alternative treatment for my depression and anxiety. I guess my thyroid problem was mainly triggered my those 2! Because now that the treatment worked, the thyroid is much better too. I've also included much more Iodine and selenium in my diet, so that might have something to do with it..

    I'm still low on Iron/folate/B12/D tho... Does anybody know if it's best to get supplements or try get them from diet? I'm mostly vegetarian, with occasional mussles...

    My stats are: D - 19 ng/mL, Iron - 44, Folate - 9 ng/ml, B12 - 308 pg/mL

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