Desperate now

Does anyone take more Levothyroxine than they should to try to feel better? After hitting a brick wall again at the endo clinic yesterday I am now getting desperate! Since having radioactive iodine treatment I have felt ill and just want to try to feel better again. I have done lots of research which actually has been quite depressing but determined not to give up and sleep the rest of my life away. The person I saw yesterday didn't even know what I was talking about. I am also thinking about buying on line T 3 to try. Any thoughts or help on this would be appreciated .

23 Replies

  • Hi Weeble1

    Welcome to the forum. If you can post a little of history someone will be along to help you. Also, if you can post your latest test results complete with ranges (the numbers in brackets) that would help people of point you in the right direction.


  • Sorry about that I was trying not to make my post too lengthy .

    April 2015 - TSH 0.07, T4 29.4, T3 4.3 Taking 100mcg Levothyroxine . Increased to 112.5mcg. November 2015 TSH 0.66. Unfortunately not given the other reading on that blood test.

    I had more tests done yesterday and I insisted on reverse T 3 and Free T 3 test as well as possibly not converting T 4 to T 3. All my other blood tests for vitamins etc etc are fine.

  • Well, you definately weren't converting in april. Even without the ranges. But, in future, it really would be helpful if you could put the ranges next to the results.

    When you say your blood tests for vitamins are fine, who's opinion is that? Because doctors are even less clued up about nutrients than they are about hormones! :)

  • They made me reduce my Levothyroxine when the results from April came through Greygoose as said I was too high. This was the endo clinic . Rheumatologist did other tests and said the same. No wonder I feel so ill. The vitamins etc have been done Gp because I have been telling him that I still feel ill and also done by rheumatologist. Both said they are fine. My visit to endo clinic this week I was told I must have something else wrong with me as it is definitely not my thyroid. Do I believe them? No!!

  • And you are right. You shouldn't believe them. I agree with Greygoose, you aren't converting very well. And bodies don't work well with too little Free T3.

  • You are so right humanbean. I feel like my body is packing up.

  • Hmmmm... They were just looking at the TSH and ignoring the FT3 - probably Don't know what it is! If I were you, I would get some T3 and treat myself! They're useless!

  • Yes once I have had tests done in February and seen gp on the 12th Feb if I have no joy with him I am going to try that. Only four weeks to go. Not that I am counting lol!

  • Go for it is what i would say. Many here have been forced to manage their own health thanks to nhs incompetence. You can get your own tests to monitor your levels and determine your own dose based on symptoms. NDT is more affordable than you think to buy online without a prescription. I have never looked back. You don't get the years of your life the nhs steals and no one is ever held accountable: no time to waste! You CAN get your health back.

  • Thanks for that. I am going to wait until I have more blood tests done in February and seeing my GP on the 12th Feb before I start doing things myself. Since I had the treatment done I have had a problem with my leg. My doctor has found that I have got hardly any pulse on my right side which is pointing to blockage in the arteries - hence all the blood tests he wants me to have. I have since found out that this can be a complication of low levels of thyroxine . This info was on a link on NHS website but when I told endo numpty she said not possible as she had never come across this. I told her that maybe she ought to study the info herself! This started about 4 months after treatment so more than just coincidence I feel. Before this I used to do lots of walking as it helps with my back problem but now can't manage more than 5minutes without stopping as get pain in leg and numbness in my foot. This is the other reason I am now getting desperate . Did my results mean much to you? So grateful for this help.

  • Cant comment on blood tests as you have not given the ref ranges

  • That is all I have got. The April one was a print out sent to me from endo clinic and the other one was in the letter from rheumatologist to my doctor. What are the ref ranges? Sorry I keep asking you different questions.

  • Reference ranges are the levels of a substance that doctors insist are "normal". For example :

    You might be told that ferritin is normal, you're happy and you go away. But then you think there must be something else wrong, or that you're a hypochondriac, because everything is normal and you feel terrible, so you stop being happy.

    You might be told your ferritin is normal at 14 mcg/L, you're happy and you go away, but have the same thoughts as above.

    You might be told that your ferritin is normal at 14mcg/L, and the reference range is (13 - 150). That's when you realise that your "normal" ferritin is rock bottom of the "normal" range and you would benefit from taking iron supplements. When you go away you aren't happy to have been fobbed off and left to suffer when the solution to your problems is so simple and so cheap and you can buy what you need without a prescription at your local pharmacy or online.

    By the way, describing reference ranges as the "normal" range, as many doctors do, drives me nuts. It isn't a normal range. What they do is, they do lots of tests, then knock off the bottom 2.5% of the results and the top 2.5% of the results and declare the middle 95% as the reference range. Just because 95% of people fall within the reference range doesn't make it normal.

    A proper reference range should be based on the results of people who have been proven to be healthy after thorough testing and interviews about their own and their family history. But as far as I can tell the reference ranges are based on the results of the sick people who the doctor has sent for blood tests.

  • On the subject of supplementing iron (sorry, I know I'm going off-topic) ...

    Supplementing with anything shouldn't be done without knowing what you are doing.

    Iron is one of those things that people absorb at very different rates. So, someone who is low or deficient, who then takes supplements, may get up to optimal in 2 - 3 months. Other people may absorb so poorly they take several years. (It took me nearly two years to get my ferritin up to mid-range, which is where I was aiming for).

    The problem with iron is that having too much is very dangerous. The body has no obvious way of getting rid of iron. If you take too much it deposits itself in tissues it shouldn't be deposited in - like the heart for example. The only known way the body loses iron is through faeces - there is a tiny amount of blood in the faeces of everyone, even healthy people. And blood contains iron.

    So, people supplementing iron need to test regularly to be sure of not overshooting where they want their levels to be. And if conditions change, then test more frequently to find out whether it has affected your iron absorption. I struggled to get my ferritin levels up. Then I went gluten-free and my absorption improved a lot. I hadn't been aware of this until I tested and discovered I had overshot my target. Luckily I caught it before it became dangerous, otherwise I could have been in deep trouble.

  • Hi Where would you buy T3 for online(at reputable webiste)?

  • I don't know yet ClareP81 but I am sure we will get help with that from all these lovely people. I am also going to spend time researching to try and find out.

  • Many many patients who have had RAI or surgury for Graves find that they simply cannot function on the so called normal levels of thyroid meds

    They also find they are better on NDT than even a combo of t4 and t3

    Theres very old swedish research which cant be traced which proved that after Graves the body is so sensitised to high levels of thyroid hormones it cannot cope later on normal levels

    My husband had surgury for Graves 30years ago and he is total proof of the above and is now fit and well age 73 on 5 grains of NDT a day

  • Thanks for that. It gives me hope.

  • Is this the swedish study? Krassas GE, Laron Z. A questionnaire survey concerning the most favourable treatment for Graves’ disease in children and adolescents. Eur J Endocrinol. 2004;151:155–156.


  • not seen that one

    the research I was told about will be at least 30 yrs old

  • Would you be able to let me know where your husband gets his from or does he get it on prescription? Maybe send me a p m . Thanks

  • Weeble, people do top up their Levothyroxine or add T3 to improve symptoms. If you can post your recent thyroid results with ranges (figures in brackets after results) in a new question members will advise whether a little more Levothyroxine or T3 to raise FT3 will be helpful.

    It's a good idea to have ferritin, vitamin D, B12 and folate tested as low/deficient levels are common in hypothyroid patents and symptoms may be similar to hypothyroid symptoms. Re the numbness in your leg this may be due to B12 deficiency and B12 and folate should be checked out.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Thanks clutter. I have had all of these checked quite often over the last 18 months as I have osteoporosis and been complaining so much about how ill I feel since thyroid treatment. They are all good so they say. With regards thyroid blood tests I have never seen the figures in brackets that you refer to. Now the next battle is to try and get copies of all these results from doctor/hospital! It is no wonder we all get worn down with this isn't it but I am not going to give in. Thanks for your patience and help.

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