Advise

Hi everyone,

I feel silly asking these questions but after reading this blog realise theres so much i dont know.

My thyroids were removed 7 yr ago and gradualy my leverthyroxine has gone up. Im currently on 250 a day.

Ive never really been told when to take my meds, what effect they have on me and so on, so i just take them every morning. I suffer with anxiety/depression and have just been told to take meds for high blood pressure, on top of this im fighting to loose weight!

I see alot of people talking about t3 and t4 and i guess im just wanting to know does anyone have any advise on loosing weight on this medication doos/donts

Any advice is better than the zero ive recieved

13 Replies

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  • Hi Jojo, It would be safer for us to help you if you would post your blood test results. 250 mcg is a whopping high dose of Levo and it leads me to believe you are not being managed very well. There is a lot to managing your own thyroid problem and the first thing I suggest you do, without delay, is to get your TSH, Free T4 and Free T3 measured. These are quantities which you should be able to get on the NHS (i.e., free). You must then start to read up on how the thyroid system works. Start with simple explanations on the internet and by asking questions here. If you start to regulate your weight via thyroid meds with no knowledge on the topic you will be wading into very dangerous territory. You have to go somewhat manic on this subject for about six months, then you can tell your doctor what it is you need.

    Just a couple of little factoids which may or may not be applicable: As your weight increases you need more medication, was this your problem? If you were not given clear instructions on how to take your medication I would suggest changing doctors, one of you has to understand this topic, otherwise you will have problems. If you are taking such a high dose of Levo and you are showing hypothyroidic symptoms then you might be a poor converter of T4 to T3 - the meds supply the T4 and your liver makes the T3. It's T3 you need for energy and well being, maybe your T3 is low.

    But look, get those basic blood tests so that we have a starting point.

  • its vital that you are tested for

    TSH

    free t4

    freet3

    ferritin

    folate

    b12

    vit d3

    when all those results are available its easier for us to help you thru the maze

    start a file of results ...your legally entitled to them so stand no nonsense from the GP

    what you will not have been told is always arrange blood tests for early moring

    fasting and only water

    and above all never never take your thyroid meds / levo in the 24 hours before a test

  • Look at the site of Thyroid Uk. They run is forum and have loads of information that will help you and shout out if anything you don't understand! We have all been in your position so understand.

  • You're not silly you're just one of thousands of us not getting answers from our GPs

    Right. You have no thyroid production at all because they took your thyroid gland out.

    So, normally , a hormone called TSH Thyroid Stimulating Hormone would tell your body you need more T4 to be made, the thyroid would respond to the TSH signal, make the T4, until the TSH signal stopped alarming.

    The T4 would be converted into T3 and used as required to regulate temperature, metabolism, etc.

    You can't make T4 so you need to take it.

    You're struggling with weight (important to know here whether you're actually fat or a barely coveted stick because we all know is weight is subjective)

    Anyway, if you're fatter than you should be, your metabolism isn't working brilliantly

    Did you have high blood pressure before? Because that could also be caused by this

    Sounds like the medication is not quite enough or you're not doing too well on it,

    So step one, tell your Endo that you're now on high blood pressure drugs a d you still can't lose the weight. Ask for a plan. Try 3 months of more levo and if it doesn't work can you try NDT. Natural Desiccated Thyroid from pigs (unless you have an issue with that)

    Most people get on with the natural stuff better. Rumours abound that the measurements aren't accurate but you can't patent a pig so the drug companies can't make money. If your Endo says Anything to suggest that NDT isn't safe you're a bit stuffed, they are in big pharma"s pocket and lost to reason.

    You should avoid taking your meds with calcium leave a four hour gap

    Some people say not with food, I feel sick if I don't so I take mine with breakfast.

    Some people take it at night, mine is NDT which contains T3 so I feel I need it in the morning, unfortunately we're all different.

    BUT... I tell you this for sure.

    If you are genuinely overweight and getting fatter

    If you never had high blood pressure before

    You are Not on enough drugs. Need more and maybe need a change.

    Good luck

  • Hi Jojo

    There are some great replies here.

    Just to add to take control yourself and start to manage your health yourself as doctors won't very much unless you get a good one who knows alot about it. We have to educate ourselves so we have the information to get results from the gp. You may need to see a rheumatologist or endocrinologist fir expert help. Mostly GPS have fobbed me off Til I learnt more.

    Getting the blood tests as listed in your replies below and print outs of them and asking if they are high or low or if you need treatment like tablets for something you are deficient in.

    Weight loss is hard when you are not managed very well on tablets/vitamins your body needs.

    LAHS is right that bloods is a good start. Insist the doctor checks them. Only water and no thyroxine on the morning of your blood test. Take them after.

    Best wishes.

  • This starts today. Some brilliant experts. Pick the ones you want to listen to.

    thethyroidsecret.com/traile...

  • Well, let's start with basics, shall we. :)

    1) Take your levo on an empty stomach, with just a glass of water, and wait an hour before eating or drinking anything other than water. Leave at least two hours before taking any other medication or supplements; and four hours before taking iron, calcium, vit D3 or estrogen.

    2) Ask your doctor for a print out of your results - get into the habit of doing that after every blood test - you need to know exactly what was tested, and exactly what the results were. When you get the results, post them on here, with the ranges, and we'll be able to discuss the next steps.

    Your doctor probably hasn't told you much because he has no idea himself. Doctors know very little about thyroid. He probably doesn't know himself when and how you should take it, nor how it is supposed to affect you.

    So, how is it supposed to affect you? Well, to begin with, levo is not a drug, it is a hormone, the hormone we call T4 (levothyroxine). It's a storage hormone, and is supposed to build up in your body, and convert to the active hormone, T3. Unfortunately, we're not all very good at converting T4 to T3 - and I think that the fact you are taking such a high dose of T4, and not feeling any better, means that you aren't very good at converting T4 to T3. But, only blood tests will tell us that.

    If your T3 level is still low, you will not be able to lose weight. And, all attempts to lose it will probably make things worse. So, forget your weight for the time being - easier said than done, I know, but it's the best possible thing you can do for yourself at this point. No low-calorie diets! You will make your conversion even worse. Your body needs nourishing right now - lots of good protein and good fat; fresh fruit and veg; some carbs, not too much fibre, and don't skimp on the salt. It's even possible that if you start eating more, you will start to lose weight. No strenuous exercise, either. Just gentle walking, swimming or yoga.

    It is also possible that you have an absorption problem. How is your digestion? Do you have stomach acid problem? Are you on any other medication of any sort, apart from the levo and the blood pressure meds? (And, your high blood pressure is more than likely due to your hypo, so if we get the hypo fixed, you probably won't need the blood pressure meds anymore!)

    So, that's a start. When you get your blood test results, we will talk further. But, take heart. It's not all doom and gloom. :)

  • On top of the great advice above.. list your symptoms that you may not think relevant e.g. the reason your thyroid was removed - was it Graves' disease? Do you have food intolerances or gastric symptoms like constipation or bloating?

    If you have any hidden allergies, chronic infections, or autoimmune issues this can hamper your absorption of certain vitamins and minerals which makes the conversion of your Levo into t3 very difficult, or, in some cases, impossible.

    Having the t3 tested with B12, ferritin and folate will highlight any conversion issues you have. Bear in mind that what doctors say is 'normal' is often the very low side of normal and requires supplementation. Frankly, I've given up on their interpretation of blood results, because they're generally not very good at it and I supplement until I feel vaguely normal, but take care not to overdo it - especially with the iron which is better to do under medical supervision. Once you know what's not working, that will hopefully be the start to recovery (and losing weight if that's necessary).

  • Please note that it's best not to supplement at all prior to doing the blood tests as it can give a false impression of what's going on in your cells. Some people who take cheap multivitamins don't realise that they're actually doing themselves more harm than good because they contain too much of some vitamins and too little / or the wrong sort of others.

    The wrong sort of vitamins can look 'normal' on a blood test, but be of very little use and clog up the system as it requires a good metabolism to convert these chemicals into usable form. Food manufacturers continue to put the cheaper versions of vitamins into our food chain which makes the problem worse.

  • Hi Jojobev,

    Not silly at all. I was born with only a partial non working gland, so have been on thyroxine all my life. My highest was 250 mcg. It is a high dose but if needed, so be it. I have always taken my medication in the morning before breakfast and on its own. If mixed with other medication, it does not absorb well.

    I am currently on 200 mcg T4 thyroxine and 20 mcg T3 Lithyronine (Controversial in the UK because the Endo's will not endorse it due to price only, but they give other excuses).

    Like you I also have problem with my weight, but that only came about when they started messing me around when I was 32 (long long story)

    If you have your results and ranges, it would be good to see. GP's and the like tend to go on TSH levels only, but if your thyroid is not working, or in your case has been removed, then the TSH will not give an accurate reading and will be naturally suppressed.

    Have you been checked for B12 deficiency, anaemia and vitamin D deficiency. Unfortunately, they can (not always) go hand in hand with thyroid conditions and have similar symptoms.

    Regarding your weight, it might be that you are not converting with T4 thyroxine, only - The GP/Dr's will say your results are fine, but sometimes, as I did, you need a happy balance between the T4 and T3 hormones.

    From my own experience, I know that people who do not have a thyroid condition, will judge you and raise their eyebrows and saying that the weight gain, is just an excuse. It is obviously not, although sometimes we do comfort eat, but not to the extent of big gains. The anxiety and depression follow out of pure frustration. I am at a low point now, as I am adjusting to my new medication and my weight is up and down. I know I can do it and I just have to focus on that.

    Majority of people hear, will understand what you are going through and you must never be afraid to ask for help. When your blood is tested, always ask for your results and ranges so you can compare and question. Above all else, it keeps the so called "professionals" on their toes.

    You are not on your own :) xx

  • Thankyou so much, was starting to feel like a bit of a strange one because of the dose! Im in the process of getting my results and will post every thing when i have them xx

  • Unless you weigh a lot, 250mcg T4 (levo) is a red flag. Your unknowledgeable doc doesn't understand that an amount of levo over your full replacement dose, and/or an FT4 which is at range top or over, does not mean all that T4 is going to convert to enough T3 to make you feel well. Furthermore, too much T4 can end up converting to rT3 (reverse T3), a right-hand version of T3 which inhibits the desirable effects of T3. What you need to do is reduce your levo and add in some T3, or use NDT (Natural Dessicated Thyroid). Anxiety, depression, and high blood pressure can all be caused by insufficient T3 (active thyroid hormone) in your body. If your doc knew what he/she is doing, he/she would take the full thyroid panel TSH/FT3/FT4/rT3/TPOAb/TGBAb, then go from there.

    If you want more info on T3 and NDT, and their effects on patients who cannot be successfully treated with T4, take a look at StopTheThyroidMadness.com. That site also discusses nutritional deficiencies that lower effectiveness of thyroid treatment.

  • Hi eddie, im currently 166 kilos. I have put 50 kilos on since 2011 when my thyroids were removed. X

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