Unsettled thyroid results

I congenital hypothyroidism. I am 38 yrs old. My T4 levels have been very unsettled for the last 10 years or so and had 3 monthly blood tests throughout. My GPs kept saying that my t4 levels are abnormal and kept altering my levothyroxine dosage. I am now taking 175mcg. I have never been offered t3 medication. Last year I finally won the argument with my GP to refer me to an endocrinologist. I had an appointment last year and the endocrinologist said I had to have the same brand of medication as strengths vary between brands. He also said that the GP's have been looking at the wrong result of the blood tests. They should be looking at the TSH not the t4. I am very confused as to what should be happening as I feel no better on the dosage and brand I'm on. The endocrinologist also tested me for low cortisol levels but it wasn't low enough for medication. I have another endo appointment next Tuesday (25th April). Any advice would be much appreciated.

17 Replies

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  • helen28 Can you post your test results, with reference ranges, then members will be able to comment.

    If you've had any vitamins and minerals tested then post those also.

    Generally, the aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be at the upper end of their respective reference ranges if that is where you feel well.

  • Hi Seaside Susie,

    I don't have any results, the gp never actually give them to me. I have asked for vitamin and mineral checks but gp refuses cos its apparently not necessary. She thinks my tiredness is 'a weakness' of mine.

  • Go to the surgery and ask for a copy of your latest ones. We are entitled by Law to have them. The members can then advise.

    First, my own personal opinion is, that anyone who has congenital hypothyroidism should always be prescribed T3 along with T4. There is also a natural dessicated thyroid hormone which they no longer prescribe but it contains all of the hormones that our healthy gland would have produced. It is made from pigs or cows thyroid gland and has been in use in various forms since 1892.

    So, at the very least you should be given T4 and T3.

    T4 is inactive and has to convert to T3. T3 is Active and is the only active hormone required in our receptor cells to enable our body to function normally. We have billions of receptor cells in our body.

    Blood tests should always be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards.

    Tell GP you've taken advice from the NHS Choices for help with dysfunctions of the thyroid gland and you need.

    TSH, T4, T3, Free T4, Free t3.

    You can highlight on this link about FT4 FT3.:

    thyroiduk.org.uk/tuk/testin...

    Also ask GP to test B12, Vit D, iron, ferritin and folate. Get copy of results and post and make sure the ranges are shown.

    The only way we can get an improvement is to 'Do It Ourselves'. We are suffering and doctors/endocrinologists are seemingly completely unaware of this and with the correct dose and the correct thyroid hormone we can get well and relief of symptoms.

    (I am not medically qualified and have hypothyroidism which was undiagnosed/untreated) I am now well :)

  • Hi, thank you. I have an endocrinologist appointment tomorrow. I will ask him about the T3 and the vitamin and mineral tests.

  • I hope he is a nice, sympathetic Endocrinologist. Remember that T3 is the only Active Hormone which drives our metabolism. T4 is inactive and is only good if you're on an optimum that converts to T3. However, new Research by several research departments have said that T4/T3 is best. One of our Advisers and his team did Research:-

    healthunlocked.com/thyroidu...

  • He was nice last time (assuming I get the same one) He said that my GP had been reading the wrong part of the result all this time. She had been concentrating on the T4 part when she should have been concentrating on the TSH. He also said that I should have the same brand as the levothyroxine I had been taking was two different brands. It was an uphill battle to get the GP and pharmacist to change it. I now have the TEVA brand. I will definitely ask about T3 medication. I was also tested for low cortisol levels.

  • I doubt he will prescribe T3 but what you want to know is your Free T4 and Free T3 to be tested. He will leave any testing to the GP I believe or tell you that neither of these tests are of value.

    I am glad you've got a levo which suits.

  • He has discharged me back to the GP for annual testing as my levels are stable. He has advised me to take Vit D.

  • I'd ask the GP for a print-out of your blood test results with the ranges (as I assume he's had a coopy). Post them on a new question for helpful answers.

    If he's not done all of them, ask GP to do ones which have been missed or you can get a recommended lab to do tests for you.

  • Helen the first thing to do is get a print-out from your surgery with the ranges and post them on a new question.

    We have to read and learn as most doctors just haven't a clue.

    It is the LAW that we can get our results. Some charge a nominal sum for ink/paper 50p and some take nothing. Always do this from now on as we have to take care of ourselves with the help of others on the forum.

  • My TSH 1.74 and FT4 29 from the test I had last week.

  • You always need the ranges - the reason being that labs differ in their machines, so ranges different.

    Your TSH is nearly 2 should be 1 or lower. It's difficult to remark on FT4 as you don't have FT3 to see how you convert.

    I have just looked at your past post and you are congenital hypo, so you wont really know how 'normal health feels'.

    Do you know that all blood draws should be at the very earliest possible, fasting and don't take thyroid hormones for around 24 hours from last dose and take after test. You also need B12, Vit D, iron, ferritin and folate tested.

  • My endo said the other day that they don't bother testing for those anymore they just advise people to take the supplements. Yes, I was diagnosed with it at 3 months old and always been unwell with it but as a child I didn't understand anything about it but now am constantly conscious of it. Now that I have been discharged and he has informed the GP's to only test me annually they will refuse more tests. I got a copy of the letter today.

  • Well you can be your own doctor. One year testing isn't sufficient unless you are really fit and well with no clinical symptoms.

  • helen28

    "She thinks my tiredness is 'a weakness' of mine."

    Oooh, that's a new one!!! We've heard some utter guff on here but that takes the biscuit!

    Ask your GP for the tests that Shaws has recommended. If you can't get them done then​ do a private private fingerprick test at home.

    Full thyroid tests plus all vitamins and minerals from Blue Horizon or Medichecks costs £99, sometimes on special offer

    bluehorizonmedicals.co.uk/T...

    medichecks.com/thyroid-func...

  • Hi,

    Thanks, I will talk to my Endocrinologist tomorrow and then look into the other bits

    Helen

  • They have absolutely no idea about any clinical symptoms. So, you have to continue on 'tired' instead of them knowing that it is a clinical symptom!

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