Please help

Hi, I am new and feel a bit of a fraud. I have found your forum because have been desperately looking for help to work out what is happening to my body. I have been unwell for nearly a year and have a lot of symptoms of under active thyroid - weight gain, constipation, hair loss, tiredness, muscle pain, heavy periods, to name a few. However, having had several blood test, the only thing that has come back is that my calcium levels are low. My t4 is within normal parameters and because of this I cannot have a t3 test. Can anyone help on how to push for a t3 test or would this not be something I need? Also, does any of this seem familiar and how did you find out about your under active thyroid? Thank you for taking time to read this and I appreciate any help you can offer.

10 Replies

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  • Hi Nannieof1, I'm sure most of us on here would say your story is very familiar. It's good that you have found this forum, you can now be advised and get on the right track. People more knowledgeable than me will advise you, I'm sure. The first thing to do though, is to get a copy of your blood results with the ranges. You are legally allowed to have a copy so the surgery cannot refuse. If they ask you why you want it, you do not have to give a reason, but in the past I've just said that I want it for my records.

    As far as blood tests go it will probably be easier if you do your own. Medichecks and Blue Horizon are the two I've used and most tests can be done at home with a finger prick. Even if you were to persuade your GP to do the FT3 test, the lab may still not do it, don't ask me why!

    You're not a fraud, you know you're body better than the Dr.

    😀

  • As Sewnsew says, you can request a copy of your results and you might find it useful to post them (along with their reference ranges) so that some experienced members can cast an eye over them for you.

    You can read about private testing on TUK: thyroiduk.org.uk/tuk/testin...

    Private testing would allow you to test your T3 alongside the other indicators. In many areas, even if a GP requests the T3 the lab. will refuse the request in the absence of an out of range T4 reading. (In some areas, endocrinologists will have T3 requests refused within their own hospital and can be over-ruled by the labs.)

    Just to say that some of the private testing companies are having special offers for the testing at present (until Sunday for Medichecks and some people have been able to obtain a price match from Blue Horizon).

  • Do you know your TSH result, Nannie? Those symptoms definitely sound like one who is hypothyroid. Did you have any other tests? If you can manage it, rather than wait and feel worse go ahead with those tests and post them here because where they fall in the range is important. Your FT4 was probably at the low end but they discount that. It's going to be a chore and your doctors will not be apt to assist you. In fact they seem to resist hypothyroid patients, it's disgraceful.

  • Welcome to our forum,

    The first thing to do is to get a print-out of your blood test results, with the ranges (these are in brackets after the result) and post on a new question if you don't have them at present.

    I was undiagnosed for quite a number of years and I'd never heard or knew anyone who had a problem with their thyroid gland. I don't think any of the doctors/consultants I saw knew about it either as none did a blood test but gave me different diagnosis for my symptoms.

    So, it is a learning curve for us if we have a problem/or suspect a problem.

    Before the blood tests were introduced, we were all diagnosed upon our clinical symptoms only. Nowadays, being modern, doctors have lost this knack of diagnosing and it all rests upon a blood test and many don't know how to interpret them properly and also time of day changes the TSH itself, i.e. highest early a.m. and drops throughout the day.

    You can have a full thyroid function test from one of our recommended labs and one in particular have special discount on Thursdays, and they are also home tests which is relatively easy but you have to be well hydrated and a few days before drink plenty of water.

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

    Tests should be TSH, T4, T3 Free T4, Free T3 and thyroid antibodies.

    Doctor should test B12, Vit D, iron, ferritin and folate.

    Tests should be at the earliest possible, fasting (you can drink water), and if you were taking thyroid hormones you'd allow a gap of approx 24 hours between last dose and test and take them afterwards.

    There is a link below re hypo and on the main site, Thyroiduk.org.uk there is also details of hyperthyroidism plus other information.

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

    Always get a print-out of your results with the ranges for your own records. If you have a query you can post for members to comment.

  • I agree with all of the above. Doctors these days are being dictated to by people less qualified than they are to diagnose illness and are intimidated by know-it-all haematologists. This strains our relationship with our GPs who see themselves as a go-between (and dislike this position intensely as it's not what they signed up for). Many doctors are not confident and analytical enough to question a result and the lab's interpretation of it and say, for example, 'Despite the lab's recommendations, I'm a little suspicious of this because it's right at the bottom of the normal range, which correlates with these symptoms you're experiencing, that supplement you've been on may be skewing the blood results and you have family history of autoimmune illnesses and heart disease...'

  • Unfortunately there are lots of reasons why you can be hypothyroid and have all the symptoms but still be in the norm for blood tests !! Can be a terrible time to be not understood and or treated ! My oestrogen levels were out of whack during peri menapause and the high levels blocked my thyroid! Doctors simply didn't believe me how bad I felt and it took years to get the right help !

    I eventually went to a intergrated therapist whom will think outside of the box so to speak?

    There are things you can do which I found helpful ie take iodine supp or thyroid supplements !

    Try really hard to get the right help as it can be a long long road if you allow it to go on for too long !

    Being hypothyroid is such a awful feeling as you no doubt are learning !

    Best of luck !

  • Hi Nannieof1 the only fraud that could be happening is being told your normal when you know you're far from it! I was told for 10 years I was normal even though I knew I wasn't well. With hindsight I wish I'd looked into it more instead of just of taking what the doctor told me. I probably could have had less (possibly unnecessary due to undiagnosed) operations, saved friendships, and a better quality of life at this point. I can now see the clues my body has been trying to tell me for years but now I have a longer road to recovery due to plodding on ignoring symptoms because I was "normal". I'm glad you've found this forum you can learn alot from reading posts and asking advice. If I was you now I would definitely get a private thyroid test done and take it from there one step at a time. I have learnt that you have to be your own detective, it is your life and health after all, just wish I'd done that sooner! I didn't know you could get blood tests done until I found this forum!

    Jo

  • Don't feel you're a fraud, it's the doctos that let us down that are fraudulent!

    I've had symptoms for 40 years, all thyroid blood tests were normal. despite most symptoms. I did a lot of research after finding I had a pituitary adenoma 4 years ago, & diagnosing my own secondary hypothyroidism. I have to self-treat, too, but at least I feel better.

    Try doing th Barnes basal body temperature test: stopthethyroidmadness.com/t...

    Your doctors won't take any notice, but at least you'll know!

    It's also important to make sure you're getting the right nutrients.

    Mel

  • Hi my doctor found mine initially but since then I've had to get educated on the subject and help my doctor help me via tests etc

    Point is with your question if he doesn't do the ft3 as well he cannot tell how well or bad you are converting t4 to T3

    Because if your not converting properly you will have something else going on, as simple as a Nutrient deficiency to adrenal fatigue. A high rt3 would suggest these need looking into.

    The ideal range in the ranges are as follows tsh 1or below, FT4 55-60% FT3@75_80% of the lab ranges so a ft4 with a lab range of 12-22 would be 55-60% so about 17

    Hope this helps you

  • Thank you so much everyone for your replies and advice. I had wondered about private blood tests but was concerned that the results wouldn't be accurate. I will order some from medichecks and go from there. Although I am sorry to hear of problems others are experiencing, it makes me feel better that I am not going completely mad. I will contact my doctor too for a read out , I wasn't aware I could do this. Really helpful information, thank you.

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