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[Wrensong]

Furyan, it's always good to hear a thyroid patient has found a doctor they can work well with & I think what you said here is great advice

I’d just want to echo the reassurance that whatever unbalance we’re uniquely facing with the thyroid and other hormones, don’t lose hope that you will reach a sweet spot that is good enough for you. If you can please work with someone who understands this stuff, if only to get that reassurance and to save you the hassle and isolation of doing it alone.

Wx

[Floral]

Wrensong, I decided to stick with the 75 for now as I’m having fluctuations and I’m afraid of rocking this unsteady boat any more!!. I have so many symptoms of low thyroid in my case FT3, early 2022 it was near 6 (no treatment) last 2 results 4 and 3.9 and I’m feeling worse.
  Yes I put a meditation tape on when I go to bed but it’s like I’m knocked out and don’t sometimes even rem taking off my head phones, that part is good BUT to feel like iv never slept when I arise is the not so good part😬  I managed to pop out today but my legs are now weak and I felt yuk.  Better times are ahead, I’m grateful for the small achievements.
Thank you, you are always helping others x

[Wrensong]

That's kind of you Floral, but it's what we're all here for, though tbh I often feel I've not been able to help much.  Just I know how hard menopause can be for women with a thyroid condition & how isolating if we feel we're not being heard.

FT3, early 2022 it was near 6 (no treatment) last 2 results 4 and 3.9 and I’m feeling worse

That's a big difference & if you felt well at 6, I'm not surprised you've felt low at 3.9.  What a pain you have so long to wait for your appt.  If you're in a position to take a short notice cancellation could you perhaps ask them to let you know if they have a slot they need to fill?
Wx

[AmandaJR]

This is all so confusing, I’ve no idea whether strange thyroid results are due to peri fluctuations, aging, a reaction to HRT or a faulty thyroid that was always going to happen. 

Am trying to not over think this whilst waiting for an Endo / Consultant apt. The waiting is hard, trying to keep the lid on my anxiety box is testing!

[joziel]

What strange thyroid results would they be, Amanda?

I would say though that strange thyroid results, in terms of results/tests are... thyroid related! (Not peri fluctuations, aging, HRT etc.)

By the way, endos don't really know much about thyroid stuff so don't get your hopes up. They often refuse to prescribe T3, don't want to prescribe much of it, and won't prescribe NDT either. Frankly, what I've found about thyroid stuff is even worse than menopause care. And it doesn't have the big ground swell Louise-Newson and Nigella-Lawson effect behind it to rectify things.

I recommend the book 'Stop the Thyroid Madness' and Dr Conway at The Thyroid Clinic. I think I lucked out, finding these resources...

[Floral]

Wrensong, yes it is a big jump in terms of T3, iv had these episodes and I’m sure with each hit my thyroid has been affected and also I’m that bit more symptomatic each time.  My first apt is a longer one so it’s not as easy to get a cancellation but 🤞 I’m a bit better past week just ticking along and I’m very grateful for that!
Amanda I wish you luck with your apt.

[AmandaJR]

What strange thyroid results would they be, Amanda?

I would say though that strange thyroid results, in terms of results/tests are... thyroid related! (Not peri fluctuations, aging, HRT etc.)

By the way, endos don't really know much about thyroid stuff so don't get your hopes up. They often refuse to prescribe T3, don't want to prescribe much of it, and won't prescribe NDT either. Frankly, what I've found about thyroid stuff is even worse than menopause care. And it doesn't have the big ground swell Louise-Newson and Nigella-Lawson effect behind it to rectify things.

I recommend the book 'Stop the Thyroid Madness' and Dr Conway at The Thyroid Clinic. I think I lucked out, finding these resources...

Thanks for the recommendations, i was looking at both over the weekend during yet another hormone research session. Sadly I too came across lots of stories of bad experiences with thyroid related endocrinology care. I’ve no experience, never needed to see an endocrinologist but need to know why my TSH & T4 are very low yet T3 is far too high. My GP has been brilliant so I’m going ahead with the NHS for now.

Just re-read this thread, I don’t have the same symptoms as other posters which is making me nervous! I also noticed that my TFT a year ago was extremely similar to yours and Floral’s and nothing has happened this year to explain the change now. I am pleased to see that you’re feeling a bit better, I really hope it continues to improve.

Floral - I’m so pleased your week has been a bit better too, I hope this continues and that this appointment comes around quickly.

[Floral]

Hi Amanda, I totally get your worry, doubt, frustration etc.  As u may have seen my FT3 is low and most of my life is on hold atm plus although my hrt also not optimised or working right. I don’t want to touch it as it may be thyroid throwing it off🤷‍♀️roll on apt!
Have you posted your results on HEALTHUNLOCKED forum?  They are v knowledgable.  I echo all that Joziel said.  There is also a v good FB forum ‘THE THYROID PATIENTS MANUAL’. run by Paul Robinson uk author - v knowledgable. 
Thank you for good wishes🌻

[joziel]

I'm also doing rubbish at the moment. I am finally able to sleep rather than lying awake for hours, but my body doesn't want to let me go into deep sleep still. So I just do light dreamy-sleep... and wake up feeling still tired.

Every time I start to fall into the proper deep sleep I so much need, I'm instantly awake. This isn't happening as violently as before when I was having hypnic jerks, now is just just a psychological thing where my mind is instantly alert. And after that's happened a few times, I just stop trying to go into the deep sleep because I guess my brain has decided that's not safe.

This is all thyroid crap, I'm sure of it now. Because it's only when I start or raise thyroid doses that these symptoms are affected. It is much better than before but I know I need an increase desperately and I have to get bloods done at the start of Jan and then wait an entire month for an appointment (because it takes 21 *working* days to get the rT3 result back). 

Floral, I've requested to join that FB group...

[AmandaJR]

Hi Ladies.

Floral, thanks for replying. I hope you’re still on a good / better week. Yes the frustration, confusion and trying to not let anxiety heighten is  tough going, I agree with you there! I totally understand your aprehension around HRT too, I believe thyroid, HRT and our own hormone state are entwined but I don’t understand enough yet. Hopefully professionals will set up a treatment plan and get us feeling great again soon.
Thanks for the FB recommendation, I joined yesterday and haven’t heard back yet but I’ve read quite a bit about the author. I can’t book The Thyroid Clinic yet as they can’t refer me to an Endo and I need scanning, possibly a biopsy etc but she does sound good.
Healthunlocked have been amazing, they advised me to see a private endo to get seen faster, I am trying to find one as I’m losing weight rapidly.
I hope you continue to feel a bit better and get a decent weekend.

Joziel, sorry you’re not feeling great. Sleep deprivation is awful and makes getting through just basic days really hard work. I really sympathize as I have a well worn insomnia T shirt! I hope you can get rest over the weekend.
Did your doctor advise you of how long it’ll take the new meds to settle in? It’s great that you’re seeing good improvements for the symptoms that nothing else has affected before, that’s a great indication that you’re on the right track.

Looks like we’re all in the frustrating waiting game    

[Floral]

Joziel, it will take time to regulate from what I read and I for one am not looking fwd to trying!  Patients are unique AND specialist views vary too, it’s crazy!
Good you have joined Paul’s forum hope it helps.
Amanda, thanks for good wishes, I’m just about plush for now.
Are you hyper, as you are losing weight? X

[AmandaJR]

Hi Floral, great that you’re feeling good! I’m on a good day too so far!
Not sure about weight loss yet, I’m eating loads yet hunger is constant. Endo apt is this week so hopefully I’ll get some answers.

[AmandaJR]

Finaly got Endo referral, please excuse typos as I’m half asleep.
Got told to come off HRT because of tests they need to do, cortisol was one of the, Iodine deficiency another.

I’ll be amazed if it’s Iodine deficiency since I eat a lot of fish. But I’ll find out on Friday.

[joziel]

Yeah... sadly I wouldn't put much stock in the vast majority of endos from what I've read.

I'd be refusing to come off HRT for one. I bet it was a male doctor.... Since our bodies produce these hormones anyway, there's no real reason to come off them for the majority of other tests to be run. They're not going to give a pre-menopausal woman a chemical menopause to run cortisol and iodine tests on her.

[Floral]

Amanda, I really hope your Endo apt goes well, do let us know.  Do you feel energetic?  as high appetite etc goes with hyper rather than hypo though I’m sure you know that.
I wouldn’t say I feel good it’s more ‘better’ than I was, it’s these crashes iv been getting and now my energy is limited.  Think I have a conversion issue as in my T4 not converting to main T hormone FT3.  It’s been horrible I just want to be ME again🙏🏻
Best wishes for now x