I'd welcome your advice please

Has anyone had their levels checked and been told that they are fine, but still have symptoms of an underactive thyroid? Has anyone ever tried a therapeutic dose of Thyroxine and it has made a difference? My understanding is that no two people are the same, so why should everyone's levels be the same? Thanks for taking the time to read this post xx

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  • Loads of people on this forum.

    And btw hello and welcome.

    The first thing to do is to get your test results with their RANGES from your GP . If you are in the UK you simply ask the receptionist for them. You may have to do a written request but if you were tested in the last month getting the figures should be free, so go to the doctors with a notepad and pen. Though it can take 3-5 days as they have to confirm with a GP they can give them to you. Don't be surprised if they ask you to make the request in writing as they have to legally ensure they are giving the results to the right individual and the GPs at the practice are legally responsible for this.

    Once you have the test results and ranges start a new thread and post them on the forum for further specific advice.

  • My doctor on leave so,

    I went new doctor he said it's normal.. his the doctor right.. he said i can stop medicin. I was so relief its been like more than 6yrs.. but i don't know much about it until now.. so i stop its get worse..I don't know how to explain it after 4 or 5months again im start medicine 😐😒

  • Please do not stop your medication. My Mum was told by her GP that her levels where too high & to stop her Thyroxine for 6 weeks. My mum ended up in a coma & on a ventilator for 5 1\2 weeks due to her Thyroxine being stopped, so I would advise against it.

  • Your previous, shocking post about this was here:

    healthunlocked.com/thyroidu...

  • Yeah, and my Mum still isn't right over a year down the line. I fully expected things to take a while to settle, but just feel as though I'm banging my head against a brick wall! January last year, my Mum was taking 100mg of Thyroxine and I could see she was starting to make progress, but when she had her levels checked, they said her levels where too high, she's now down to 50mg and has no energy at all, I feel that as my mum is 73, they are trying to put it down to her age!

  • 'struth - have they not mis-managed her enough already?

    I hope she is not having the blood drawn after taking her levothyroxine? You need to wait until after the blood draw.

  • Do you know, that is something I never thought of! My Mum always has to go in the am to get bloods taken and takes her Thyroxine in the morning too. So I'd say her bloods where taken a couple of hours after shed taken her Thyroxine. My mum will have to wait 6 weeks until they are able to be done again. But thanks for the top tip!

  • That would be precisely when the level of T4 would be at a maximum - and would mislead any doctor who does not understand and ask the right questions.

    That description clearly seems to apply to your mum's doctor(s).

    Just take the tablet afterwards!

  • My mum has the Endocrine clinic in a couple of weeks, I'll mention it to him, tho you'd think they would advise you of this. I was of the understanding that you should never just go with the results. You should always listen to what the patient is telling you too.

  • Mags_23, Don't be surprised if the doctor is not aware of the significance of taking thyroxine before the blood draw. Most don't think it matters at all. But it absolutely does matter. There is plenty of research etc out there to prove it. Doctors really have no idea what they're doing to their patients. Your mum's story makes me so angry. It's criminal.

  • It's just so hard seeing her with no energy & sleeping all the time. My mum loves being out & about and we make plans to do thing and when it comes to it, she just hasn't got the energy to do it.

  • I totally understand. So many of us have been in your mum's situation of wanting to get on and live a full life, but lack the wherewithal to actually do so. Keeping patients under-medicated is such a common issue with this disease. Their ignorance is unforgivable.

  • Totally! I feel so frustrated as I don't always know what they are talking about with T3 & T4 levels! And know where her levels are on the range. It all just goes over my head!

  • Endocrinologists and doctors appear to be the last people to know anything about treating and diagnosing except if we are way out or how the patient feels with disabling symptoms. That includes me as no-one took a blood test.

  • Thank you for continuing to share this information.

  • I only read half the post and was horrified. It reminded me of my Mum, with P.A. her GP told her bloods were now fine (after 30 years) she no longer needed B12 injections. She died due to stomach cancer and doctor's advice.

  • I think I'd be apt to take charge of Mum's medication as they don't know what they're doing. Dr Skinner was always on to the BTA and RCoP about the miserable levels we're given nowadays which can cause more harm than good.

  • My mum has an appointment with her Endocrine doc a week on Thursday. I'm gonna mention to him about her having her T3 tested, as far as I know, this has never been done. Before my Mum was hospitalised with this, she was one of the lucky ones, in that she never had any probs with her meds or as many symptoms as she does now! Her only complaint was that she was cold all the time. I feel after what her GP did to her, it has only aggravated her condition.

  • I really hope that the Endocrinologist is sympathetic and knowledgeable.

    You can tell the Endo that you are with your Mother as her levothyroxine was stopped for so many weeks that she has become very unwell and you are worried of the consequences and you know what they are (I hope he does).

    You can, if you wish, email louise.roberts@thyroiduk.org.uk for a copy of the Pulse online article by dr Toft. He was President of the British Thyroid Association and highlight parts of question 6 (just in case you don't think he is doing the right thing by your Mum) so you can discuss how low the TSH should be.

    Ask him if he could do a Full Thyroid Function Tests (that should include everything).

  • Thanks for your advice. I'll defo send her an email.

  • "Normal" is an opinion. You are legally entitled to the results of your blood tests if you are in the UK, so insist on getting them.

  • Mags,

    There are many differing reasons for an under active thyroid and for some an accommodating dose of thyroxine will be sufficient to replace those missing hormones.

    However for others, medicating only T4 (thyroxine mono therapy) may not prove sufficient as other hormones are required to replace the deficiencies caused directly or indirectly by the under active thyroid or other causes.

    A deficiency of thyroxine may be caused by hypothalamus, pituitary or thyroid deficiencies but also conversion problems and problems in the cells receiving the thyroxine.

    Also, an excess of one hormone can cause imbalances in other hormones so without comprehensive testing which is not usually unavailable on the National health, it is impossible to say.

    The RCP (Royal Collage of Physicians) and the BTA (British Thyroid Association) only provide guidance on identifying and treating one cause of hypothyroidism (defined by the RCP as ‘under-activity of the thyroid gland’) and recognise the treatment by only one of its hormones - thyroxine (T4).

    Many members use private labs and post results complete with ranges (numbers in brackets) for other members to comment on.

    .

    Private labs testing

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

    .

    Hypothyroidism

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

  • Hi yes I was first told my levels were normal. Thought I must be going crazy and it must be something else but just trusted my doctor. Had no clue about ranges, what hormones were what. Then within a year symptoms got a lot worse and I declined but the doctor I had then refused to retest me. I went for years and got really ill then got a private test. I've recently found out my t4 was at the very bottom of the range on that first test and my tsh wasn't raised but I still felt rubbish and it got worse. I eventually self medicated but by then my levels were almost non existent.

  • And do you feel better with self medicating? I take it you just go on how you are feeling? How long does it take before you start to see a difference?

  • It's very quick, Mags. I would order some NDT for your mum and see how she is on it. After the endo visit.

  • Can I ask what & where is the best place to order?

  • I will send a pm

  • Been taking Levothyroxine for 10 years and my levels are apparently now normal. Still have original symptoms. Has made very little difference.

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