Home testing.. Worthwhile or not??

Hi, just looking for some advice. 

I have been having hypo symptoms for around 3 years. Hair loss, puffy neck and face, dry skin/scalp, massive weight gain (around 4 stone ) EXTREME fatigue, cold intolerance ect ect. I have had my tsh tested once 7 years ago and it was 1.8 then I had my son then it was tested again in 2014 it was 3.5 my symptoms have worsened and 2 weeks ago after moving gp my tsh was 4.3 and my t4 was 17.9 (all normal range) during my pregnancy I was sleeping almost round the clock and I just put I down to being pregnant then I put my tiredness down to having a new baby and a 6 year old. But I have never felt well since I'm currently on 3 monthly b12 injections and folic acid tablets I've been tested for celiac I've had numerous blood tests done I've had cameras into every orofes imaginable and nothing has came back. I have found out recently that there are thyroid issues on both sides of my family my point is that I feel genuinely ill and my doctor just dismisses this and tries to give me anti depressants as they say they have exhausted all tests ( but they refuse a thyroid panel) so it must be in my head!! I have ordered a home testing kit  has anybody used these? And if they show anything up on them will my gp take the results seriously?? Or will I just need to wait on my tsh possibly coming up again? Thanks in advance 

16 Replies

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  • Hi you will find a lot of people on here have done private tests because doctors don't do the ones we need. Your tsh is thought to be at 1 or less to feel well, with your t3/4 in the top of the range or above. Doctors don't really understand this or how vitamin b12, vitamin d, folate, ferritin and thyroid anti bodies are needed to be tested too. If you go on thyroiduk.org and go to testing blue horizon medical do all these tests and you'll find out the true function of your thyroid. They give a donation to thyroid uk too. 

    A lot of doctors don't accept them but at least you'll know! But your gp just might surprise you. You may need b12 injections more frequently, most do. :-)

  • Thanks, it was blue horizon I ordered from.

  • ccl, 

    Welcome to our forum and sorry to hear you are not feeling well.

    Your increase in TSH during pregnancy could have been due to your body's//baby's need for additional thyroid hormone during gestation..

    Low thyroid hormone can cause low gastric acid which results in malabsorption of B12 and folate.

    Testing the active hormone T3 will give you a clearer picture of your thyroid hormone function but GP's are often not able to perform this test. Therefore members use private labs - link below.

    Post results complete with ranges (numbers in brackets) for members to comment.

    .

    Private labs testing

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

  • SorryI've not been very clear my tsh was 1.8 before I was pregnant in 2008 had my son in 2009 and wasn't tested again til 2014 it was 3.5 and now it's 4.3. The test I've ordered includes tsh, t4, ft3/4 thyroglobulin, thyroid peroxidase, ferritin, folate, b12 vit c and reactive protein and I will post the results as all advice is welcome as I'm not 100% sure on all the normal ranges 

  • At 4.3 you are hypothyroid.

  • First thing for you to do is make an appointment with your GP. The boot is now on the other foot.

    Ask for a full thyroid blood test (probably wont do them all but members shall advise afterwards if they've not been done). Your testing kit from Blue Horizon is good make sure you are well hydrated to make taking blood easier. 

    Your GP will be completely unaware that, with symptoms,  TSH above 2, can be hypothyroid (ignore the fact they've been instructed to wait to TSH is 10). In particular you want a Free T4 and Free T4 as well as the usual TSH, T4.

    Draw blood at the very earliest possible and don't eat before it. You can drink water though.

    Also ask your GP to test B12, Vit D, iron, ferritin and folate as we are usually deficient which can cause problems too.

    For your info the link below will surprise you. I, too, am another who was not diagnosed - not one of the ten specialists/doctors etc. even thought of thyroid, I myself knew no-one who had hypo so, eventually, a first-aider suggested it and 'what do you know' my TSH was 100 - definitely hypo..

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

  • My gp says 0.5-5 is normal range, I did say to her but if you look it is slowly creeping up her response was "and your point is? It's still normal" once I have the results from my home test I will post and discuss before I go back to her with what I hope will be solid proof that she needs to acknowledge these are real symptoms that need treatment, I really don't know how people survive years and years of the ignorance of "medical professionals" I'm slowly losing the will to live and it's only been 3 years

  • Before the blood tests were introduced along with levothyroxine we were prescribed upon our clinical symptoms which all doctors knew without even thinking about it and also took note of the patients' appearance, i.e. puffiness and other signs, slow heartbeat, reflexes and pulse.

    Some other countries prescribe around 3. The UK, in their enlightenment, the guidelines are to wait until the TSH is 10. which is beyond belief as in some people the TSH doesn't rise (it is from the pituitary gland) and symptoms are awful.

    As far as I'm concerned a range up to 5 would be if someone hadn't been diagnosed at all with hypothyroidism.

  • The good old days when doctors where actually real doctors? Lol, if I'm handed one more prescription for fluoxetine I think I will scream!! im anxious to get this test done and get the results now to see what I'm actually dealing with

  • What blood tests do they do for 'anti-depressants? None, they go by our symptoms alone. Yest for the thyroid gland there are over 300 symptoms and they don't know one. Depression for instance can be due to low T3 (or being undiagnosed hypo because you feel so unwell and due to low T3).

  • One of my friends is a newly qualified clinical phsycologist and I asked for her opinion on my mood and she agrees that my low mood is due to the symptoms I'm having and not clinical depression or as my last gp even tried to fob me off with physical depression (that's not even a real illness)  

  • So instead of a decent dose of hormones they will prescribe anything else but hormones. It just doesn't make sense.

  • Yip because they're stuck on their "gold standard tsh range"  with maybe t4 if you're lucky but no t3 and definitely no full panel unless you find holy grail of gps but plenty "happy pills" to go round 

  • When you next see her and she says 'normal' you present her with the 'Interpretation' above together with the symptom list ticked and say "but that test doesn't include clinical symptoms of hypothyroidism which aren't normal". 

    You know more than her now. She cannot help that is what she's been told by the 'Powers that Be' (I wonder if I could think of another more descriptive word?)

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

    together with the Interpretation from TUK.

  • Be aware though that even if your home test show that your T3 is out of range, your GP still may not act on it. My GP refused me a T3 test because she said the results wouldn't change my treatment. Once you have the results though and post them on here, you will be able to find out what supplements to take and get help with self medicating if your GP won't help x

  • Yeah to be honest I'm not holding out any real hope that my gp will do anything about my results if they come back showing anything so self medicating was my next step anyway and I will just order more home tests when required to keep an eye on my blood work 

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