Advice on getting to right level

Hi, I was diagnosed hypo 2 months ago, put on Levothyroxine but am struggling with severe fatigue, so much more than I did before I started medication. I was put on 50Mg for first 6 weeks and now been increased to 75mg. My latest results a week ago are:

TSH: 100 (0.27-4.20) (This hasn't moved since my diagnosis)

Free T4 = 10.2 (previous test had this at 5)

No other tests (T3 etc) have been done by the dr/lab. I'm due another blood test in 6 weeks.

I upped to 75mg this week and have been off work sleeping for up to 18 hours a day. My speech and thoughts are slow, I'm forgetful, and my head and limbs feel so heavy. I'm struggling to shuffle myself around the supermarket. I'm put on weight, have numb fingers (carpul tunnel, which is why I was diagnosed) and my palms are peeling.

My question is - is this how it will be for the next year or so until I get on the right dose? Is there anything I can do? Dr won't want to do anything (extra tests, vitamins etc) until I have TSH under control but that could be months... I can't live like this!

Any help much appreciated.

23 Replies

  • Hi lemonem . 100 is a high TSH reading you are no where near medicated enough yet. Unfortunately you can't push a load of hormones into your system at once. It needs to be gradual. Hopefully some one will reply and advise just how fast you can increase. But I wouldn't wait 2 months every time if I were you, I know you can increase faster than that ( depending on blood tests and symptoms ). You have my sympathy, you must feel awful. I hope you get the answers and feel better soon, as far as I know there isn't a lot you can do other than press towards being optimally medicated and I don't understand why your gp won't do any other testing until the TSH lowers. x

  • The TSH was .01 a couple of months ago and .02 most recently while my Free T3 West High because no one told me to refrain from taking my thyroid meds before my blood work in the morning. Dr added total cortisol test as we fear my adrenals may be affecting my allergies which seem to be triggered by extreme stressful situations. Thank you and everyone so much for the input and encouragement. Any changes have been made in small doses incrementally.

  • My posting was a mistake in reply to my own personal posting in error. My apologies

  • Hi lemonem, this is frightful. You may have some sort of resistance going on. That is ridiculous not to do more testing. I am in disbelief although I've been here for three years and thought I could never hear anything worse than I have already heard. You have to demand at least more thyroid testing to find out if you are making reverse T3 which slows down everything. You could also have severe adrenal problems that cause reverse T3. Low Cortisol, antidepressents and low iron will all stop your levo. First I would switch doctors. I think there is a list of decent ones but I'm in the U.S. so can't help you. If you can afford to do some of your own testing through Blue Horizon you can get the whole group of thyroid function tests including antibodies. If you cannot afford to do that I would go ahead and buy T3 to go along with your levo as it is the active form and see if it makes you better or worse. It's not expensive and people here can direct you. Are you menopausal? That could have something to do with it since sex hormones play a role. You should not have to beg for treatment. I'm offended for you.

    This is a bit scientific to sift through but you can see how involved this condition is.

  • Hey, Héloïse, she was only diagnosed two months ago. It's a bit early to start talking about hormone resistance. Give her a chance. lol

    rT3 is never tested on the NHS, so there's no point in her asking for that.

    Lemonem, all things hormone take time. You cannot rush it. You are only on a low dose yet, and you need to be tested every six weeks, and the dose increased by 25 mcg. You can't go any faster than that.

    However, your doctor is a nutter if he thinks you can't supplement vitamins etc until your TSH has come down. They could even help it come down! But, you can always count on a case of hyperthyroidism to bring out the insantiy in doctors!

    So, can you get them tested for yourself? vit D, vit B12, folate and ferritin. Then, if they are low, you can buy your own suppléments. The ones your doctor might prescribe would only be the cheap and nasty ones, anyway. Much better to buy your own.

    And, while you're at it, get your antibodies tested : TPOab and TgAB. Not much point in testing anything else at the moment, though. And, by the way, do you have a range for the FT4? We always need ranges to see where exactly the result is. :)

  • I suppose:( I'm trying to recall when I started on Synthroid, I can't remember how fast I made increases as he left it up to me. But I think it was every 4 or 5 days and I could tell a difference almost immediately. I do remember telling him that my urine was clear and all he said was "does that bother you"? He was a dud of an endo. I didn't even hear the word Hashimoto. I didn't have any tests for cofactors. My TSH was in the 30's and I was very symptomatic. I can't imagine this poor woman at 100. I guess that is why she isn't responding as quickly.

  • That was very quick. And that's the best way to over-shoot your sweet spot. You may have felt a difference, but you didn't feel the full difference because it takes six weeks for the dose - or dose increase - to make itself fully felt. It takes that time for the body to absorb the t4, convert it to T3 and for the T3 to be absorbed. Some of that had abviously happened in four days, but not completely, so you were increase whilst the old dose was still struggling to catch up. Finally, you find yourself on a dose of 200 or something, if you're dosing by symptoms, and when the full dose hits, you are vastly over-medicated. Unless your system doesn't work like everyone else's! lol :D

  • I felt that I was absorbing, converting and it was going to work very quickly because of physical changes I felt. No question about that. Maybe it is unusual. In my case, he probably gave me a stop limit since I'm sure I never got to 200. Even now I only take one and a half grain of Naturethroid.

    I was always a vitamin/supplement taker. I remember I was taking ginseng and licorice root before that probably due to reading medical books, the old ones and articles on health.

    STTM says that moving up too slowly is not good either so I still think she should have improved somewhat after 8 weeks.

  • Totally agree that moving up too slowly is not good. I think it should be every six weeks. But whether or not she would have improved after 8 weeks is debatable. Dépends how long shes been hypo, for one thing. We're all different.

  • I guess we have some controversy here but this is what STTM says:

    Sticking with too low a dose.

    8) Staying on a starting dose too long (same as #1 above).

    But if a necessary starting dose is held too long (from two weeks to several weeks) there’s a normal suppression of the feedback loop between the hypothalamus, pituitary and thyroid gland, i.e less messenger hormones are released, making you even more hypothyroid than you began (plus you may experience the results of extra adrenaline).

  • Yes, but aren't they talking about NDT, there? Lemonem is on Levo.

  • #8 says the same as #1 which is talking about Synthroid. I think the mechanism would be very similar for either, don't you?

  • It doesn't say the same thing at all. #1 is talking about staying on T4 only for a long time. #8 is talking about staying on a starter dose for too long. Too long for a starter dose of T4 is not the same as staying too long on a starter dose of NDT. It's the T3 that makes the difference.

  • I was 101 but the TSH came down in Six weeks and further down after another six weeks.50 and 75 mcg of levo are starting doses and you are going to need more to bring TSH down before thinking of more complex reasons for it not moving .Reverse T3 will be unheard of by many a GP.

    Unfortunately there is no quick fix, some symptoms may go fast others linger despite the dose.It took just over a year before i returned to something like normal still with socks in bed in summer!

  • My initial TSH was 240 and I started on 25 and went up to 50 and then 75 at 2 week intervals. After another 6 weeks I went up to 100 which was when I really started to feel better. About 3 months later I had a relapse and went up to 125, which I've been on ever since (18 months). After each increase in dose I felt much worse for a few days as my body adjusted, and then improved - could this be what's happening to you?

    However I was lucky with a very straightforward recovery, even though it took a year to feel completely OK. Take note what the others have said, that maybe something else is going on for you - I hope not though. Try to hang in there until your dosage is sorted out, but 6 weeks seems an unnecessarily long time before increasing.

  • The reason for 6 weeks is that is the length of time it takes to get up to that particular level then retest and start the process again if you have been given a rise. Levo has a half life so that is why it builds up gradually. If you increase before that time you could end up being hyper by taking too much as you won't be giving it a chance to reach its full potential. If you go hyper it can be differ cult to realise this as many of the symptoms are similar do you could easily keep talking more when in reality you need to drop down a little. Sadly everything in the thyroid world moves slowly and we have to be patient I'm afraid. Trying to speed things up does really work.

  • I'm only giving my experience - at first I increased my dose at 2 weeks intervals, and had a blood test every three weeks. Lemonem is obviously still on a starting dose, with her TSH still so very high - does she need to wait 6 weeks in order to feel better? If I had done that, I would have waited 18 weeks - 4 and a half months - before seeing any real improvement!

  • My comment was to explain why one needs to wait 6 weeks as the danger if you don't you do not get the true reading for that dose and if one doesn't wait to see what that is then they may miss the sweet spot and go hyper and not realise this and keep increasing ultimately have to start again from the beginning once got the extra amount out of the system. So I'm advocating being patience but in doing so being more likely to get it right.

  • I do agree - in the later stages. if you have a TSH of 100 you are going to need at least 75 if not 100, or more. You can move fairly quickly up to there, and then take it more slowly as your body adapts and you start to feel better.

  • Depends on your age and general health of course and some of the problems that could be dangerous may not be know so generally I thing any advice is to start low and build up. Once anyone reaches the 50 mark there should be improvement and so it doesn't take too long to know that it will get better. I just think without knowing individuals it better to be cautious but hopeful. Also when inexperienced it is difficult to know what your body is trying to tell you not to mention some GP's not being that experienced!

  • If they did not test you for T3, that's your problem and you are probably still hypothyroid. 150MG T4 levothyroxine did nothing for me till I was tested for T3 and TSH sensitivity and antibodies. Your body uses T3 so if you're taking T4 and it can't break down to T3 if your body is not absorbing the levo you're taking. Insist on seeing an endocrinologist or taking the T3 test. WARNING: no one remembers to tell you not to take your thyroid within a few hours of your blood work or your blood work will only show the medication and not your metabolism. Yesterday I had to retake all my blood work for that reason as my lab results were obviously off. The good news is that within one month of dating T3 my thyroid was nearly normal and I had the energy back. Also, B12 shots will boost your energy and also help you metabolize your other meds.

  • How do you test for TSH sensitivity?

    B12 supplementation of any kind should not be started until the B12 has been tested.

  • Hi again, I just learned that in acupuncture, the thyroid and kidney are on the same meridian since I looked back at your previous note.

    It seems as if your thyroid may be causing the kidney function problems. I also think you need to find your optimal dose sooner. Have you considered going on natural desiccated thyroid like Naturethroid? Levo is only T4 but NDT includes T3, 2,1 and calcitonin. There are NDTs available without prescription if you care to go that route since it's difficult to get GPs to cooperate. Are you beginning to feel any better?

You may also like...