Been abandoned

HI there, I have been dropped by my endo a while back as I queried T3 and ndt and she didnt like it. I got reported to my gp for buying "food supplements" off the internet. My gp has now freaked out at my low tsh level which I think is staying in and around 0.02. My T4 was 26 at last reading. My gp has contacted me to drop my levo down to 25 mcg and my repeat prescription is only for that amount. I have steadily gained weight this past year and am so miserable. I had tt nearly 2 years ago and still not feeling well. I want to lose weight but am truly lost with my dosage. Any help would be appreciated.

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  • Buying 'food supplements' on internet is not a crime. And your doctor is not your lord and master, he's your adviser. So, don't let them brow-beat you like that. If they gave you the correct treatment, you would not need to buy supplements on internet!

    The first thing you need to know is your FT3 level. It sounds as if you aren't converting very well. But best to be sure before doing anything. So, if you can get private tests, I would advise you to get :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    vit D

    vit B12

    folate

    ferritin

    If you're not converting well, it doesn't matter how low your TSH goes, nor how high your FT4, you're not going to feel well. And, it doesn't matter how low your TSH goes, anyway, it's not the problem doctors make it out to be. :)

  • Ariadne,

    What are your recent thyroid results and ranges and how much Levothyroxine, NDT or T3 are you taking?

    It's inconceivable that 25mcg Levothyroxine could be sufficient for a thyroidectomised patient.

  • They would only provide me with FT4 level of 26. It usually sits around 22. I am in a situation where I need gallbladder surgery and the surgeon also freaked out at my levels. They wont operate until my tsh level is "normal". I agreed to a lower dosage of 50 mcg and now my doc has insisted I drop to 25 mcg. Even i know this is wrong. I have stomach problems too so wondering if there are absorption issues. I havent been given my FT3 level in a while

  • Ariadne43,

    How much Levothyroxine, NDT or T3 have you been taking?

    Does the surgeon know you have had a thyroidectomy and that suppressed TSH and elevated FT4 are due to over medication not hyperthyroidism? It should only be necessary to make a small dose reduction to drop FT4 into range and there's no reason to be concerned about suppressed TSH if FT4 and FT3 are within range.

  • Ariadne43 Your surgery must provide you with your test results, with reference ranges, you are legally entitled to them under the Data Protection Act 1998, so you might like to ask them again and if they are difficult then simply state that you know you are legally entitled to them and you're sure that no-one there would be wanting to break the law.

    Better still, do as Greygoose suggests and get full testing done, most of which your GP can't do. You can do this with a home fingerprick test from Blue Horizon

    bluehorizonmedicals.co.uk/T...

    25mcg is a ridiculous dose.

  • Thank you everyone for your replies. Will try and sort out my own testing. Appreciate your help

  • Just a quick question. Can I do this at home myself

  • Ariadne43 Yes, it is a fingerprick test you do at home. This link tells you all about it and if you click on Paul's picture then you'll see instructions how to do it

    bluehorizonmedicals.co.uk/F...

  • I think we still aren't clear on how much thyroid meds you are taking.

    Do you take Levo? If yes, how much.

    Do you take T3? If yes, how much.

    Do you take NDT? If yes, how much.

    Something must be pushing your Free T4 up to 26 and I don't believe it is 25mcg of Levo per day, or even 50mcg Levo per day, since you have no thyroid.

  • I am still on levo, I refused to drop and had increased the dosage myself to 100 mcg what I was initially started on. I also admit to adding a small amount of t3 to the mix, very small dosage though (one quarter of a tablet per day). Before that I had tried ndt but had no clue what I was doing and got frightened as I had palpatations. Obviously I am doing something very wrong and I want to get back on the right path again. I have a poor relationship with my doctor. I am never able to get an appointment and we only correspond via telephone

  • Okay, there is still a puzzle. Your Free T4 of 26 is still surprisingly high despite the info you've given us.

    When you took NDT what dosage did you get up to, and how quickly did you get up to that dosage.

    Were you taking T3 or Levo with the NDT?

    How long ago did you stop taking NDT?

  • Assuming Ariadne43 was taking 100mcg levothyroxine, too little time between taking thyroid hormone and blood draw could cause this high FT4 reading.

  • Of course it could! Sorry, that never crossed my mind. Dementia is setting in!

  • I got up to 2 grains of thyroid s though has problems with palpitations. I worked my way up slowly to that level. I never took t3 or levo with the ndt. I havent taken ndt in about 6 months.

  • RedApple has made a comment about the timing of your dosage and your tests which could explain a lot.

    When you do tests how do you do them?

    Are the tests done first thing in the morning?

    How long is there between taking your previous dose of thyroid meds and getting blood taken?

    If you take any thyroid meds of any kind then get blood taken for a test within about 6 hours then your blood test results will be distorted by the thyroid hormones you've recently taken, and it could explain your very high Free T4 result.

    So can you remember the timing of things when you got that high result?

  • It was probably first thing in morning straight after meds

  • That would explain the high Free T4 then.

    In future, to reduce the risk of getting meds reduced or to increase the chance of getting a higher dose there are certain ways of being tested which help.

    1) First of all, make an appointment for getting blood taken as early in the morning as possible, before 9am if you can possibly wangle it.

    Let's suppose you make an appointment for Tuesday at 8.30am.

    2) On the Monday, the day before the test, take that day's Levo at 8.30am i.e. 24 hours before the blood is taken. If you don't normally take Levo at 8.30am it doesn't matter. Changing it for one day is not going to cause any harm.

    3) At about 10pm - midnight on the Monday evening the night before the test, stop eating and drinking. Water is allowed, and should be drunk freely to prevent dehydration.

    4) Don't take Levo or eat or drink (except water) when you get up on Tuesday morning.

    5) Get your blood taken. Then you are free to do what you like with dosing levo, eating and drinking.

    6) If you can't get an early morning blood draw, you shouldn't fast overnight or in the morning, but do try and leave a couple of hours not eating or drinking (except water) before the blood draw. I don't know what the effect of long-term denial of food does to thyroid function tests, and it isn't worth starving yourself for. But do keep a record of the conditions under which blood tests are done so you know whether you are comparing like with like.

    If you can't get an early morning blood draw do still keep a gap of 24 hours between previous dose of Levo and the blood draw.

  • Thank you for taking time to reply, duly noted

  • Presume you are on levo only? It is the medication that makes you feel ill and the fact that doctors insist on treating by TSH levels. All I can suggest is get a new GP and get them to refer you to an endo who knows what they are talking about!

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