Not well on NDT, test results / Dr advice conflicted!

[Miniliz]

Hi everyone, it's been a while since I posted because while I understood what was happening I didn't need to. Now I am in a position where I don't know what's going on! :/

Some background:

I was diagnosed with Hashimoto's in 2016. Initially on Levo but didn't get much better so Dr P suggested I switch to NDT which I did in March 2017 (I'm on Thyroid S).

Felt better straight away, but initially not everything was in range (adrenals, vit D etc) so I was patient as these improved. All are now in range (latest results below). NDT dose varied as they came into range, typically 4 grains.

But I still don't feel well. I am currently on a low dose (1.5 grains) as when I take more I suffer a very strange but debilitating 'ache' in the evenings, after a few days of the new dose. Ache isn't the right word, but I can't describe it any other way! It feels like all of the cells in my body are being stretched. I have energy (presumably as I have increased the NDT dose) but the sensation is so encompassing that all I can do is curl up in a ball until it's passed (usually over night). To get rid of the ache I reduce the dose, but then feel so hypo I can't function.

I thought that this was related to rt3, so I got this tested with Medichecks and it's not that after all (see results below). The Medichecks Dr reckons I'm on too much NDT but I know I'm not - I currently feel like I did before I was diagnosed and was on nothing! The mantra on here is about judging the amount by how you feel, and I know for sure that 1.5 isn't enough. I've emailed the Medichecks Dr to put this to him, we'll see what he says.

I do also have an ovarian cyst, this is 5cm+ and I am having it removed on 7 July. I am hoping that this 'ache' and the inability to increase NDT is related to the OAT Axis and that once the cyst is gone things will settle. I expected that the cyst was causing raised rT3 but it seems it isn't specifically that.

I've been experiencing the ache since just before Christmas, but the cyst will have been developing for well over a year (it was first seen on an ultrasound last August).

Am I going mad? What am I doing wrong? Has anyone else had a cyst affect their dose on NDT? Thank you in advance for any advice

Blood Test results 16 May 2019:

TSH: <0.005 (0.27 - 4.2 mIU/L)

T4: 10.5 (12-22 pmo/L)

FT3: 4.78 (3.1 - 6.8 pmo/L)

rT3: 15 (10-24 ng/dL)

RT3 ratio: 20.75

VitD: 136.5 (50-150)

Folate: 14.6 (3-12)

Ferritin: 701 (10-120)

B12: >2000 (200-900)

Ferritin is high - I've stopped supplementing as a result. This was always one that was only just in range so I'm assuming that this high result is related to the cyst / inflammation etc. I've also reduced the B12 and folate intake but maintaining the Vit D supplements as this also has typically been low previously.

Cortisol saliva test: 23 April 2019

Waking: 7.75 (6-21)

12: 5.26 (1.5 - 7.6)

4pm: 2.93 (0-5.5)

Before bed: <1.5 (0-2)

I am doing CT3M for adrenals.

EDIT: to add that I am also Coeliac so already gluten free, so that won't make a difference

Also that the blood tests above were taken at the earliest possible time slot, I had not taken my NDT that morning nor had I eaten or drank anything other than water

[serenfach]

I am sorry you feel so ill. The only thing I can suggest is that the cyst may be making your oestrogen levels affect the uptake of the NDT. I think if your body is telling you to up the NDT a bit, then do it. There is room in your results for that.

I am sorry I am no expert, not like many on here, but I hope you feel better soon, and good luck with the op. Hug.

[Miniliz in reply to serenfach]

Thank you

My body is crying out for more, but as I said: when I do, the debilitating ache arrives. I'm going to try and out do it tonight by taking an extra 1/4 as I go to sleep - so if I get the ache it's not while I'm awake!

Sure you're right, the OAT Axis has a lot to answer to I think. I'm also concerned about the high ferritin now, and wondering if it's a bit of both at play. Can't wait to lose the cyst either way!