Feeling bad

Hi ive been hypo for 6 years having regular blood tests. My Dr keeps telling me that results are OK. Recently I've been waking up feeling like I've got a really bad hangover ( I don't drink) does anybody else feel like this? I feel tired all the time, my hair is still coming out, my weight is still going up. I've put on 7 stone and can't shift it, and I'm not a big eater. I'm on 125 levothyroxine. I'm just wondering what people think. Thankyou

14 Replies

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  • Hi - you need to request copies of your blood results - ask your GPs receptionist - because what a GP calls ok is not necessarily so. When you have results post them including ranges - they should look something like TSH 3.8 (0.2-4.2), and we will be able to advise.

    If you are having blood tests taken they should be as early as possible, fasting having taken nothing but water and with at least 24hrs since last dose of levo. If you can get results also for vit D, vit B12, folate and ferritin. x

  • Thankyou. I will book appointment for blood test and will post results x

  • I think you may well be underdosed. Forget 'o.k. results'. That doesn't mean we are fighting fit - it means the opposite.

    Please get a print-out from the surgery of your most recent results, with the ranges and post for comments.

    Weight gain is a clinical symptom as well as many others but because our metabolism is too slow (due to hypo) we can gain weight when levothyroxine isn't optimum.

    When you have a blood test it should be the very earliest possible, fasting (you can drink water) and allow 24 hour gap between last dose of levo and the test and take it afterwards. This gives a truer reading that taking it before a blood test.

    Doctor should also check B12, Vit D, iron, ferritin and folate and if you've not had a blood test for a while make a new one.

  • Thankyou for reply. I will ring surgery tomorrow for blood test appointment and will post results. I've no energy and sometimes feel really weak. I have lots of other symptoms that other people are having on here too. Thankyou x

  • Make sure the ranges are stated on your print-out. I am not medically qualified and have hypothyroidism which was undiagnosed.

    thyroiduk.org.uk/tuk/about_...

  • Thankyou I will call Dr's tomorrow x

  • If we are on replacement levothyroxine the aim is sufficient dose to relieve all symptoms - not to get the TSH somewhere in range and still have symptoms or even develop more.

  • So many GP's in the U.K. are simply useless. I was told by my doctor that I was normal and within range with a TSH of 17.5 and on 25mcg of levo. Fought for three years to get upped dose to 50mcg and it made me feel so much better but I from now will be getting private bloods done and simply buying T4. NHS should be scrapped. How angry I feel over how we are all treated.

  • Hi just a quick update and wanting some more advice please. I phoned surgery for blood test results (test last Thursday) and was told by receptionist that all normal no action required. But I feel so I'll with so many symptoms. I have Dr's appointment Friday and I know she will say the same all normal Is there anything that I can say to her that might help her change my dose of levothyroxine currently at 125Mcg? Thankyou x

  • Please make sure to get a printout of your results what's "normal" to a receptionist (who by the way isn't qualified to read your results) might actually not be optimal for your treatment. Just being within range isn't good enough for most thyroid patients. If you can get your results and post them here we can really help you.

    When you see your doctor on Friday please ask for your results, if they ask you can just say you'd like to keep records it's completely within your right

  • Thanks for your reply. I will post results. I'm feeling really ill so many symptoms much more than when I was first diagnosed 6 years or so ago . I just really hope Dr will do something for me. I'm even having silly thoughts that I'm dying that's how Ill I'm feeling.

  • Interesting that you mention hangover. Have you been tested for Histamine Intolerance? Do you eat many tomatoes, bananas, avocados maybe? Any alcohol? How about coffee?

    The reason I ask is because there are foods that are high in histamine, and foods that block our bodies from breaking it down well, and some people have low DAO (diamine oxidase enzyme) so are hindered in breaking down histamines. On top of that Levothyroxine also lowers the ability of the body to break down histamine. The symptoms are that of migraines, digestive problems, feeling crap in general, also some experience allergy like symptoms that come and go and often the individual can't figure out why one day they are "allergic" yet another day they aren't.

    To make the point: red wine is high in histamine and alcohol blocks your DAO enzyme, so it creates temporary histamine intolerance in otherwise healthy people and the end result is a bad hangover! I'm histamine intolerant and I get these "hangovers" just from eating the wrong foods.

  • Hi thanks for your reply. I don't drink alcohol. I eat lots of fruit and vegetables. I drink tea vary rarely have coffee. I will ask Dr about being tested for this x

  • Good idea, some fruits vegetables are very high in Histamine, so it depends which. Tea lowers the amount of DAO enzyme in the gut. Here is a simple PDF that shows which foods are mainly safe or unsafe for those with histamine intolerance: histaminintoleranz.ch/downl...

    Maybe you'll notice some things you often eat there and start seeing patterns, ie: when I eat Tomatoes I get migraines, etc...

    Your doctor may be unaware of how to test for it since the understanding of DAO deficiency is a very new thing, if he/she doesn't know just ask them to test "Diamine Oxidase Enzyme" it is a simple blood test (not sure if GPs can order it, I had it done at the Gastroenterologist).

    It could be a long shot but if you do get diagnosed deficient then please come back and post on this forum (tag me in the post so I'm notified or send me a PM) and I and another member who also has this can help you. Good luck!

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