Hi, I've had an underactive thyroid for nearly 30 years now and have only seen an endocrinologist once in all that time, and that was after being newly diagnosed. For years I've been plodding along pretty much exhausted all the time but putting that down to my chronic iron deficiency anaemia as my TSH, apart from a couple of times when it was high (and levothyroxine dosage was subsequently increased), was always within normal limits.
The thing is I have all of the signs of an underactive thyroid, but surely if I was well controlled I wouldn't have any symptons. My temperature is always low, I'm intolerant to cold but strangely even more intolerant of heat, (I hate the Summer because of this). I'm always tired, but not just tired, bone tired, I have no energy for anything. My skin and hair are dry, my brain is foggy and getting worse, trying to have a conversation can be difficult when I sometimes struggle for simple words. My partner gets fed up of me substituting the word 'thing' while I am trying to come up with the word I want, but it's either that or stop talking.
Just lately my already thin hair has been shedding more than ever, so much so that you can easily see my scalp. This is what took me to my GP as I hate going there and so rarely do. Having read on here about T3 and how it can be as important to replace it as well as the T4, I thought I would ask her to check my free T3 and T4. She said she couldn't check it if my TSH was okay. She's given me a form for this to be tested but that's it. She also said my hair loss was more likely due to my age as I'm perimenopausal. Do you think it is worth asking if I can see an endocrinologist, or can she refuse if my TSH is within normal limits? Sorry for the long post.
I look forward to receiving any advice you can give me.
GP has stopped my T3 and increased my T4,suppressed tsh and suppressed t4
Encrinologist Ignores Free T4 and Free T3 OMG!!
Welcome to the forum, Jaspersas.
There are some GPs who won't test FT4 if TSH is within range. There appears to be an assumption that normal TSH=normal FT4 and FT3 which is often rubbish. Even if the GP/endo orders a FT3 test labs usually decline to test it unless TSH is suppressed.
You can order private FT4 and FT3 tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...
Hi Clutter, thank you for the welcome and for that information. When I told my partner that she wouldn't do the tests he said we should just pay to have it done. I will do this, but as I haven't done it before, does the lab send the test results to me or my GP and if the tests do show I am low in t3, can she still refuse to prescribe it?
Jaspersas, the results will be mailed to you. The link will explain the process.
Some GPs will prescribe but many won't prescribe T3 without direction from an endo so you may need a referral. Email louise.warvill@thyroiduk.org.uk for a list of recommended endos in your area and ask to be referred to one of them.
Thanks again Clutter. I've just read the link and I don't know if I'm being daft but how do I get the blood sample to the lab, can it just be sent through the post?
If you order from Genova they send you a kit out with all the instructions and all the packaging materials you need to return your samples. It can be returned in the post if you choose "guaranteed next day delivery", or by courier (which is more expensive). If you use the Genova automated kit ordering line you are not asked to provide payment details when you order. You have to give "Thyroid UK" as the practitioner when asked. Payment details must be provided when the samples are returned by post or courier.
Hi humanbean, lots of good info there, thank you.
Genova run a courier service for samples. I had to pay £12 to get saliva samples collected to be taken for the lab. I'm assuming it's the same for blood.
Good luck with the testing!
Hi Helcaster, do you know if the couriers deliver the same day? I'm in the West Midlands, if that makes a difference.
Hi Jasperas, I'm classed as the West Midlands, right in the sticks on the Shropshire/Powys border. The courier came to me around 5 pm, for delivery to the lab by 9.00 am the next morning. You will receive an instruction booklet on all this and how to do the tests with the pack they send out. I have only used Genova, so it's all I can comment on. With the saliva tests for instance I froze my samples until collection. All will be explained to you, and they're really helpful and reply promptly if you email.
Jas[ersas, yes, instructions will be sent with the kits.