Looking for feedback on results and names of Doctors willing to look at Reverse T3

Hello everyone.

I'm getting to my wits end over this Thyroid issue. It's now ruling my life and causing me so many problems. Diagnosed just over 4 years ago, given a pill, patted on my head and sent on my way with the good news that I no longer need to pay for prescriptions. I kid you not, that was the only input I received and i have fought for the rest every day since.

Massively under dose, it took over a year to get from 50 to175mcg. Symptoms finally improved but my bloods told the doctor I was fully fit and healthy. My TSH was average and the Free T4 was a little high. I still wasn't right so I took the calculated decision to over medicate to between 225 and 250mcg per day due to a fortuitous error by the doctors and pharmacy on a new dosage. For 12 glorious weeks I was on top of the world. Symptoms were gone, head was clear, stomach issues that created limited food options cleared up and I even dropped a couple of lbs.

I monitored my heart rate, never had palpitations and my resting beat was normal. I actually perspired when exercising, the fact that I could do both was amazing.

Anyway I told my doctor what I had done, as expected they hit the roof but I finally negotiated referral to an endocrinologist. Over the past 20 months they have found I was deficient in Vit D and despite supliments I'm still insufficient. That's where I am 4 years on , I take Vit D supplements and 175 thyroxine per day.

Still not right, I decided to pay out and get my own tests for my thyroid and testosterone levels and the results were:

* out of range.

TSH 0.761mIU/L Range 0.27-4.20

Free Thyroxine 20.99 pmol/L Range 12 - 22.00

Total T4 115.4 nmol/L Range 59 - 154.00

Free T3 4.17 pmol/L Range 3.10-6.80

*Reverse T3 31ng/dL Range 10.00 -24.00

* Reverse T3 Ratio *8.76 Range 15.01 - 75.00

*Thyroglobulin Antibody 157.5 Iu/mL Range 0.00 - 115.00

* Thyroid Peroxidase Antibodies 337.1 Range 0.00 - 34.00

Vit B12 405.2 pmol/L Range 140 - 724

Folate Serum 9.5ug/L Range 3.89 - 26.80

* 25OH Vitamin D 42.91 nmol/L 50.00 - 200.00

*Testosterone 8.38. Range 7.6 - 31.4 ( I'm under 40 years of age.)

Anyone have any idea what I should be expecting from the Endocrinologist as the GP has washed their hands of me whilst I am under them but I'm waiting between 6 and 10 months between appointments.

Finally, I'm happy to go private to another consultation if I don't get any further support in the hospital here, Can someone pass any recommendations of who will be open to reading my reverse T3 readings along with the other out of range issues????

Any guidance is hugely appreciated.

Monnty.

8 Replies

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  • what should you be expecting from the Endocrinologist!!! my experience was they made me seriously ill, i was doing better self medicating. I have a good one now, within certain parameters but i still sort myself. I had RT3 and it was awful, i had been well on ndt, endo bullied me onto levo and it all went wrong from there, i am on t3 only to get rid of rt3 and pooling.

    Results are difficult as no matter what they say, if you still feel ill then you are not optimal, no endo is comfotable with us being optimal because in their eyes that means over medicated.

    For me it has been a minefield, i have great days, good days and bloomin awful days, i do wonder if i will ever get back to being me again. I had most my thyroid removed and they forgot to tell me i would need thyroid replacement, i was seriously ill and mostly house bound. My trust in drs and consultants has been broken beyond repair.

    I do better following advice from people in my support group and taking dr advice with a pinch of salt. I have to take care of myself and not leave it to a dr.

    Someone who knows reading results better than me will answer each test more appropriately. Hope you get the answers you need.

  • Thanks. What's pooling? I've lost faith in the Dr's I'm just hoping I can find an alternative who is open to the more detailed blood results as neither my doctor or endo have even requested me than the tsh and t4.

  • pooling was from the levo T4 i was not converting it to T3 so it was building up and swishing around in my blood, so i became very hypo again. I went back to NDT and the T4 part was still not converting which caused my reverse T3 that then blocks you absorbing anything, that is my understanding, i had a thyroid panel done and my RT3 was very high and i felt awful. So it went onto T3 only to clear it up :)

  • Thank you. This is a huge help. 👍

  • Hopefully admin will be along to comment soon but looking at bloods I'd say free t3 is slightly low. Have you got hashis? High anti bodies?

    Folate is low too needs to be in top quarter of range.

    B12 in range but could do with being nearer the top.

    Vit d very low.

    There has been debate regarding causes of rt3. As you are only on Levo it does seem that you are not converting and may possibly do better on combo of t4/3 or NDT .

    Admin please correct me if I'm wrong as I'm usually the one asking for help with interpreting bloods.

  • Thank you. I've not been diagnosed with hashis but I'm concerned that my anti bodies are way over. Thyroid Peroxidase antibodies are 10 times out of the range..

    My doctor won't even discuss it and had just sent it in to the endo.

  • If you do have Hashi ( which it looks like from raised anti bodies) I do know that going gluten free helps. Re the original question about DRS - I've given up so no advice on that front. I took matters into my own hands ditched Levo started NDT after getting my b12, vit d ferritin and folate at optimal levels though. And I haven't looked back. I too had some rt3 in the bloods I had done after a holding dose of NDT but no symptoms so I'm not too concerned.

  • They don't recognise or treat Hashimoto's. For that you have to look elsewhere. Change in diet will bring antibodies down

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten & diet connection to autoimmune Hashimoto's

    If you have not tried gluten free yet, then try that first. Soya (including soya lecithin) best avoided in too.

    Some with Hashimoto's have to try dairy free and/or nightshades free - that's potatoes, tomatoes, peppers

    thyroidpharmacist.com

    chriskresser.com/the-gluten...

    hypothyroidmom.com/92-of-ha...

    amymyersmd.com

    drknews.com

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