In range :(: Hello good people, need some advice... - Thyroid UK

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In range :(

Jacquid profile image
13 Replies

Hello good people, need some advice. I had a Graves attack in 2007 when I discovered I had the condition, had successful block and replace but never felt fully recovered since then (block and replace period in blue on chart). I was taken off the medication and have had nothing since. Symptoms since 2007, sore legs and pressure in my knees, but I was ok, Consultant adamant those symptoms nothing to do with Graves.

Two years ago I started to feel unwell, anxiety, palpitations, sore roof of my mouth, not sleeping, knees swelling up...various visits to the GP for tests came back no arthritis and ECG said my heart was ok, blood tests for all sorts ok. For a year I've felt increasingly more unwell, terrible fatigue, palpitations really bad and painful, acne spots, swollen knees, anxiety, depression, hissing ears, and terrible brain fog, I just can't think straight! Attempts to get more than a TSH test have taken a year, so finally saw consultant yesterday, results below.

I was fully expecting the FT4 to be around 8. I know I am in range but from reading this site I am wondering if since treatment my FT4 has been too low for optimal health? I queried this with the consultant and he was vague about it, but said had the FT4 been one point lower he would treat. I'm not feeling the cold but I've been taking my temperature in the morning from advice given here and it's never been up to 37, ranges 35.5 to 36.5. I think I need a small amount of thyroxine to nip something that's developing in the bud but the consultant obviously does not agree, and when I suggested I could buy some from the internet he said do!

I'm 58 and feel like I'm crawling through my life, my 81 year old mother runs rings around me! What do you think? Also if I do decide to self medicate, where do I get it from and how much do I take? Sorry the post is so long and apologies to those of you with readings much worse than mine, I can't imagine how you feel if I feel this bad.

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Jacquid
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13 Replies
HarryE profile image
HarryE

Don't apologise, it's not a competition about who feels worst! My results never got out of the blessed ranges either but I felt terrible! If you are going to buy your own meds anyway, I would go for natural thyroid (NDT). I did and was totally restored to normal, until I was persuaded to try thyroxine.... Never again, I felt awful. Lots of advice on here, but I would recommend Dr Barry Peatfield's book, on kindle or hard copy, Your Thyroid and how to keep it healthy. It tells you everything you need to know about treating yourself, but basically you start low and increase until you feel better. Good luck x :-)

Jacquid profile image
Jacquid in reply toHarryE

Thank you for the reply...I'll buy that book now x

galathea profile image
galathea

The sore legs... Not the shins which are sore is it? As in pre tibial mxeodema which is definitely linked to thyroid problems.

Sore roof of the mouth.. Check out lichen sclerosus and lichen planus. Casio linked to lw b vits.

gabkad profile image
gabkad in reply togalathea

galathea, what does 'casio' mean?

galathea profile image
galathea in reply togabkad

Sorry, it means my iPad auto correct has sneaked in without me noticing. :-(. I meant "also". Sore mouth is also linked to low b vits.

Xx

gabkad profile image
gabkad

Go for it. Then get bloods taken. T4 is cheap, so I don't understand why the endo wouldn't pull his pencil out (sorry) and write a script. Maybe if you have a longterm relationship with this specialist, you could just say, "here's the pen, write. I want 50 mcg T4. If it's not going to make me feel better, then I'm willing to take that chance. We are supposed to be a team. There is no 'I' in Team.'

This forum needs 'Endo Terrrorist' courses.

gabkad profile image
gabkad

Oh yes, I forgot the Clutter Master List: get your Vitamin D, ferritin, folate and vitamin B12 checked. Post the results here. She's got her 'cut and paste' paragraph about how any of these being deficient can adversely affect thyroid function and how you feel.

in reply togabkad

Hi Gabkad, off topic but thought you might like to know I have got an amazing med for my restless legs, Its called Neupro patch -very expensive but working miracles! Just got to get out of habit of being semi -nocturnal now! How you doing? ?.pipps

gabkad profile image
gabkad in reply to

Wow! I'm really happy for you p1pps. That is great news. Finally. The movement disorder specialist was useful. Imagine. We keep searching and searching and at long last you have something that works for you.

I need to check on this stuff and see what it is. Who cares about how much it costs, it works. Not sleeping is a killer.

Doing alright. Hair is growing back. Very interesting: some are about 3 inches long, some only over 1 inch. I have to pluck my eyebrows! LOL! Energy is better. Will get bloods taken this week. Then duke it out with endo because I'm not on what she prescribed. Why mess with success?

in reply togabkad

Glad you feeling better and hair growing back too! Dont want to highjack Jacquids post so will just say dont see Specialist till Saturday! I researched my butt off and eventually got in contact with one of worlds if not the worlds expert on this.We exchanged emails(all free )and it was his suggestion .

gabkad profile image
gabkad in reply to

Congratulations. May you have many many delicious sleeps. May you wake up in the morning feeling like, 'this is so comfortable, let me stay in bed for an extra half hour just to enjoy the wonderment of it all'. Luxury. Roll over, snuggle into the duvet, close your eyes and thrill to the sensation of total relaxation. (Get hubby to bring the tea.....snicker... what with maybe it increases sex drive, hey, he will be motivated.....:) yumyum.) This is a modified version of the Irish Blessing. :)

in reply togabkad

Thankyou!

gabkad profile image
gabkad in reply to

Heh, heh, it can increase sex drive..... can't be all bad, eh? LOL! Double bonus points.

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