Still feeling very unwell

[Emyloulou]

I made a post a few days ago due to the fact I had recently become more unwell and wondered if anyone can help regarding my appointment tomorrow

So I had more bloods taken yesterday and my tsh has now risen to 1.6 from 1.1. This is despite an increase 4 weeks ago.

I also had a 9am cortisol taken and that came back at 402 but I had to rush between a couple of clinics due to the million people waiting so I don't know if that's raised it at all.

I'm back to the gp in the morning who as I've said before is great but is being told no by the labs regarding getting T3 tested. He also requested pth, calcium, crp, bnp, hba1c and a FBI and I'll get the results of them when I see him as it was hard enough work getting the cortisol and tsh from the receptionist!

I asked about private T3 testing and while he was ok with me having it done he asked me to hold off until I got the other results back which is fair enough. He also said even though he agrees that some people do better with T3 than just levothyroxine the local pct won't allow him to prescribe it 😡

I still feel genuinely awful and have lost 9lbs in a week as I have Zero appetite so only eating a little bit. I'm very overweight though so there's a silver lining to every cloud😉

Is there anything I should be asking him tomorrow?

[Clutter]

Emma2312,

Will your GP order FT4 in addition to TSH? TSH doesn't tell us much once you have a diagnosis and are taking Levothyroxine.

You could ask for ferritin, vitamin D, B12 and folate in addition.

FT3 is rarely tested in primary care. You can order private thyroid, vitamin and mineral blood tests via thyroiduk.org.uk/tuk/testin... Medicheck offer #ThyroidThursday discounts.

[Emyloulou in reply to Clutter]

Thanks for the reply,

The hospital will only test FT4 if the tsh is out of range, seems like instead of fighting the gp like everyone else I have to fight hospital lab policy!!!!! It was about midway through the range last time it was tested and I've had a few increases since then.

My Vit D, B12, follate and ferritin are all at the top end of normal now. They weren't but I've managed to increase them all over the past 6 months. I still supplement but at a maintenance dose.

[rachs79]

emma2312

I apologise..I didn't mean to hijack your post...good luck at the doctors tommorrow...I too share alot of your symptoms loss of appetite and loss of weight ...I will post tomorrow what my dr says let me know what your dr says

rach79

[Emyloulou in reply to rachs79]

No problem 😃

[Hidden]

Forgive me, I may be misunderstanding but you said 'tsh has now risen to 1.6 from 1.1' that looks to me more like it's gone down rather than up?

[Emyloulou in reply to Hidden]

It has gone up yes despite my gp increasing my levothyroxine to 150mcg as I was still symptomatic at 1.1.

It doesn't make sense to me as I thought it would have gone down not up x

[Angel_of_the_North in reply to Hidden]

No, 1.6 is higher than 1.1 so it has risen FROM 1.1 TO 1.6.

[Hidden in reply to Angel_of_the_North]

Apologies, had a moment of brain fog and read it the wrong way around

[Hidden]

Have you had antibodies tested for Hashi's? Hashi's can cause swings in our levels (approx 90% of hypo thyroid test positive for Hashi's). It's not uncommon for this to occur in test results.

[Emyloulou in reply to Hidden]

Hi, yes I have Hashi's and originally had very high antibodies, I have been totally gluten free for 2 months now.

[Hidden in reply to Emyloulou]

It may help to do more reading on Hashi's and why it causes fluctuating levels (like your TSH) At least you will know what is happening and can speak knowledgeably with your GP when they don't have a clue.

hypothyroidmom.com/hashimot...

thyroidpharmacist.com/artic...

tiredthyroid.com/tsh.html

[Emyloulou in reply to Hidden]

Thank you, I've done lots of reading over the last 6 months and understand that my tsh will go up and down however I went downhill very quickly to the point where I have had to take time off work, something I haven't done in a long time. I have a wonderful GP who is very knowledgeable regarding my condition and also frustrated that he can't treat me in a way that he feels would be better.

I'm not sure if the problem is adrenal related as over the last couple of years I have had considerable amounts of stress in my life. The Gp was amazed that I'd managed to cope with everything I'd coped with(hubby has tried on more than 1 occasion to take his own life 🙁) when I was originally diagnosed as I was in his words "a very poorly lady"

[Hidden in reply to Emyloulou]

I'm really glad you have a supportive GP considering what you've had to cope with Emma. But if your GP is unable to prescribe T3 meds you may or may not know that many here self medicate by ordering their own T3. Should you want to go that route eventually you can create a new post asking for members to PM you with reliable sources. X rusty

[Emyloulou in reply to Hidden]

That's something I have discussed with him and he would support me if I chose to do it. I definitely makes a huge difference having a supportive Gp judging by what I read on here. I had to see a locum while he was away last week and realised just how good he is 😳

I'll see what he says tomorrow