At my wits end! Should I just get NDT to try?

[Rainbownut]

Hi all,

For 2 & a half years now I have been chronically ill, after suffering a 3 month chest infection & battling PTSD from childhood abuse. Exhaustion, muscle & joint point and major brain fog being the most debilitating symptoms, but I tick many of the usual thyroid symptoms for both hyper & hypo. My poor kids are losing their mother.

Before Christmas I thought I was finally going to get a diagnosis, as my TSH was 0.04, but went back up when they retested before sending me to see the endo. So it was written off as just a blip & they keep muttering about CFS or Fibromyalgia.

Results since then have been all over the place. We went to a private endo in desperation, but he has only tested a few things, despite saying he would test everything. He seemed to be focussed on the hyper side of things & dismissed me when I asked about Hashimotos. We travelled 2 & half hours to see him, as he is on the Thyroid UK list & is supportive of NDT, but he seems to want to dismiss me as anxious.

Could anyone look at my various results please? I'm at the point I almost feel like just ordering some NDT & just trying to treat myself, but that feels wrong when I do not yet have a thyroid diagnosis.

- 4/8/16

TSH 1.66 (0.27- 4.20)

Serum B12 327 (191-663

Serum folate 5.7 (3.70-18.7)

Serum ferritin 43 (13-150)

-23/10/17

TSH 0.04 (0.27-4.20)

Free T3 5.1 (3.10-6.80)

Free T4 18.7 (12-22)

Serum B12 531 (191-663)

Serum folate 6.5 (3.7-18.7)

Serum cortisol 432 (>420 usually excludes adrenal insufficiency)

- 24/11/17

TSH 0.05 (0.27-4.20)

Free T3 4.7 (3.1-6.8)

Free T4 15.7 (12-22)

- 29/12/17

TSH 2.21 (0.27-4.20

- 6/2/18

TSH 2.32 (0.27-4.2)

- 1/3/18

TSH 1.62 (0.27-4.2)

Free T4 10.8 (12-22)

Se thyroid peroxidase Ab 11 (0-34)

Tests from private endo

20/4/18

Free T3 3.5 (3.1-6.8)

Free T4 14.5 (12-22)

TSH Receptor ABS <0.3 (0-0.9)

Cortisol 229 (171-536)

Total 25-Hydroxy Vit D 111 (>75 adequate Vit D)

25-hydroxy vit D2 <6.0

25-hydroxy Vit D3 110.6

-25/5/18

Short Synacthen Test done- normal

The night after the short synacthen test, I felt GOOD & didn't have any pain for 2 days, then crashed afterwards badly! The endo has said that it is interesting, but my results are not serious enough to warrant steroid medication.

He wants to see me again soon to look at other things, but it feels like the various odd thyroid results I get now & then are being ignored, let alone my actual symptoms.

I have been gluten free for 4 moths (as I get pain & very boated on gluten, but celiacs test was negative) & did 2 months of the AIP diet, but saw no real improvements on this...... & broke in a big time on holiday last month & have not got back to it!

Any help or advice gratefully recieved as I can feel major depression nipping at my heals. Each time I get yet another 'normal' test result, just kills another part of my soul. I NEED to get better for myself & my families sake!

Lisa

To

[Judithdalston]

Just to clarify...you have had no thyroid diagnosis, and never been on any thyroid meds e.g. Levothyroxin? Who has ordered the thyroid blood tests, and why so frequently?

[Rainbownut in reply to Judithdalston]

I was sub-clinically hyperthyroid in Oct & Nov, then my TSH went back up. The tests after that were to keep an eye on it (& I had low T4 in March) but as my symptoms are still getting worse, then we saw the private endo recently.

So no diagnosis yet & no drugs. From the way my symptoms swing from hyper to hypo, then I suspect hashi’s, but because my current results are normal then no diagnosis. I feel like I’m 2 completely separate people, depending on what my symptoms are doing. Neither are fun though!

[Angel_of_the_North in reply to Rainbownut]

Not hyper by any means - could be secondary hypo, but free T4 has been a bit high for that. Did you get TG and TPO antibodies tested? Sounds more like a pituitary problem (although I had abnormal short synacthen test and a different reaction from yours.)

[Rainbownut in reply to Angel_of_the_North]

Thank you.

My GP only did the TPO antibodies & the private endo only did the TSH Receptor antibodies! 🤪

I thought going private I stood a chance of getting everything checked & was quite gobsmacked when he had hardly tested anything, despite mentioning lots of tests he was going to do. 😔

[greygoose]

Well, you're definitely not hyper! My money would be on Hashi's, but doctors don't understand it so dismiss it. One negative blood test does not prove you don't have it, for three reasons :

1) Hashi's antibodies fluctuate all the time.

2) there are two types of Hashi's antibodies - TPO and Tg - but the NHS only tests TPO.

3) some Hashi's people never develop high antibodies and are diagnosed with an ultrasound.

Hashi's would certainly explain your up and down results. So, if you found gluten-free helped you at all, it would be best to go back to it.

Your B12, folate and ferritin are all too low. And, you really should have your vit d tested. And, I would suggest a 24 hour saliva cortisol test, because a slightly over-range serum cortisol does not rule out adrenal fatigue.

[Rainbownut in reply to greygoose]

Thank you!!

What are the ideal ranges for B12, folate & ferritin then?

The private endo checked my Vit D levels (after I was told by a GP 2 years ago that you couldn’t get Vit D checked on the NHS!! 🙄). The results are towards the bottom of my list....the hydroxy-25 bits!

I have stuck at gluten free for months & months. It’s the full AIP diet that I broke on a camping holiday last month, as it was just too easy to buy the expensive gluten free breads & snacks while away. Then the chocolate & alcohol snuck back in too! Ooopps! Trying to get my head in gear to try again though.....but it’s hard when I didn’t really see a huge benefit after 7 weeks of a really strict diet, and it does take quite a lot of physical & mental energy to eat so healthily!

[greygoose in reply to Rainbownut]

B12 should be at least over 500, folate at least mid-range, and ferritin around 100.

Perhaps the AIP diet just isn't for you, if you didn't feel any benefit from it. Did you feel worse after going off it?

OK, your vit d is fine.