Help!

[Shanghai-Suki]

Can someone please tell me if sore , cracked & lips is an indication that my thyroxine levels are too low? I’m also so tired all the time even though I’m getting at least the recommended 8 hours?? So fed up with always feeling ‘ unwell ‘! Since being diagnosed 18yrs ago I’ve only seen an endo once, is this the norm? Help please!

[greygoose]

Sounds more like nutritional deficiencies of some sort, rather than a symptom of low thyroid. Have you had your vit D, vit B12, folate and ferritin tested?

I think it would be a good idea if you posted all your thyroid-relevatnt lab test results. Sounds like you're under-medicated.

[Shanghai-Suki in reply to greygoose]

Thanks for the reply & the advice. I’m going to try & ask my GP for the full gamut of tests & hopefully he’ll be agreeable!

[greygoose in reply to Shanghai-Suki]

You're welcome.

[fuchsia-pink]

In the UK it's quite common never to see an endo, as over 80% of patients take levo-only and are fine with that, It is usual/best practice, nonetheless, to have an annual blood test, and it's important to get the actual results, rather than rely on the GP to call you in if anything's amiss.That way you will get to see (a) what has been tested [probably not enough] and (b) what your actual results are [probably not high enough in terms of actual thyroid hormones]

It is likely that only TSH or if you're luck free T4 has been tested. After so long, you might reasonably ask for full testing - or if the GP won't, treat yourself to private tests ... you will see LOTS of posts on the forum about private testing. A full set of tests would comprise: TSH, free T4, free T3, thyroid antibodies (unless previously tested and you know them to be high) and key nutrients - ferritin, folate, vit D and B12 [your levo works best when these are good]. I have had some success with my GP by saying that these are the tests recommended by Thyroid UK.

Always have an early morning blood test (when TSH is highest) with a 24 hour gap from your previous dose of levo (to get a good representative level of thyroid hormone - take the next dose straight afterwards) and stop any supplements containing biotin a week before (biotin distorts the results).

As regards results, far too often we are told these are "normal" or "in range" - but this isn't good enough. Ranges vary from lab to lab but a common free T4 range is 12 - 22. If your result is 12.5 you will probably feel dreadful. If it's 19.5 you will likely feel much better. But both are "in range" - so you need real numbers.

You are legally entitled to your blood results without giving a reason (although it's usually easiest to say "for my records" or to get them via on-line access). If you post your latest results [in a new post] the lovely people here will help you to understand them

[Shanghai-Suki in reply to fuchsia-pink]

I’m rapidly coming to the conclusion that it would be much more beneficial to go privately for the full & comprehensive list of tests that, it would appear, will help to give me the answers I need! Thank you all for the help, it’s wonderful to know that there are others who may have experienced some of the same problems & can offer constructive advice!! Hope you all stay safe & have the best Xmas possible under the current restrictions!!

[fuchsia-pink in reply to Shanghai-Suki]

If you do go private make sure you see an endo with a real interest in thyroid, rather than just another diabetes man .. you can get a list of recommended private endos from Dionne at Thyroid UK - [e-mail] - or as for recommendations near-ish to you. Have a full range of blood tests done first to make the most of the appointment.

Personally, I get my bloods and meds from the NHS (I'm very lucky in that I have been able to get both done properly) - but I get the expertise I need from this forum

[Shanghai-Suki in reply to fuchsia-pink]

Thank you so much for all your help, I’ll follow up on the advice & hopefully get some positive help for a change!

[Jenny309]

Hi I get really dry cracked lips all year round some weeks there fine then it starts cracked and dry I’ve just been diagnosed with hyperthyroidism.