Report letter from dodo🙄

[birkie]

Hi everyone ❤️

Finally getting round to posting this lovely letter from endo 🙄

Firstly I feel by the contents of said letter, I wasn't even in the room with this endo😂

She as put... problems:

1,..total thyroidectomy for graves thyrotoxicosis 2019

2,..history of intolerance to both thyroid medication T4, T3

3,..hypercalcemia being investigated by surgeon in Liverpool

4,..on liothyronine as presumably intolerance to levothyroxin (look at number 2 above, you noted both)

(I'm stopping the T3 medication prescription due to side effects)

1, correct

2, correct

3, actually got a diagnosis of primary hyperparathyroidism by Liverpool surgeon who is looking for a rouge parathyroid gland, I inform her of this🙄

4, intolerant to both T4, T3 as she mentioned above 🙄

Does this next paragraph make any sense to any members

I have previously seen Mrs [name edited][ (it's Ms and this was changed in 2009) on multiple occasions due to her ongoing symptoms and side effects related to both levothyroxin and liothyronine hormones.

Mrs [name edited]has been on liothyronine due to intolerance to levothyroxin despite our advice to change it to levothyroxin(im intolorent to both u nut) 🤦‍♀️

She informed us that it is her wish to be on liothyronine as monotherapy.

Mrs [name edited] complains of side effects related to liothyronine as well. When her thyroid function was tested in Liverpool in June 23 it was noted that her T3 was elevated at 11.9 which indicated over medicated with liothyronine.

Mrs [name edited] is not keen to change liothyronine to levothyroxin and she informed me that she as been experiencing side effects with both levothyroxin and liothyronine.

She is asking for natural thyroid extract, and I advised her that I would not recommend natural thyroid extract.

Recommended treatment for primary hypothyroidism is levothyroxin, and I previously advised you to change to levothyroxin oral solution to see if she could tolerate it. 🤦‍♀️

It is difficult for me to convince Mrs [name edited] that the safety data for liothyronine monotherapy is limited.

I had previously advised you to refer her to another endocrinologist out of the region, as she as been referred to me on multiple occasions, and I am unable to advise her on alternative treatments.

So she wants to put me back on T4 a hormone medication she herself as noted I'm intolorent to

She prescribed T4 oral liquid 15 months ago, and I informed my gp to tell this endo that I was still having gut issues with the T4 liquid solution (she obviously hasn't looked over my records)

I wished to stay on T3 because eventho it gives me the same gut issues as the T4, the t3 does at least restore my T3 a bit, where as T4 never did!

This endocrinologist saw the photos of what I'm passing on both thyroid medications, so I'm not making this stuff up.

The t3 of 11.9 in Liverpool) .. As I told her, I took my T3 (10micr) medication At 4.45am not knowing I was having a thyroid blood test, but the bloods were done some 5 and a half hours later at 10.45.

The surgeon in Liverpool noted, she would not have expected to see such a high T3 after 5 and a half hours, T3 is a fast acting medication, and it drops fast in the body she advised me to see an endocrinologist, I am you!

Obviously this endo as totally ignored what I told her.

And as for the multiple visits to her, 2 were for parathyroid, for which on the last visit in 2022 she told me I definitely don't have a parathyroid problem.

I go to Liverpool in 2023 and get the diagnosis of phpt through the very bloods she herself ignored, as I say not a good endocrinologist 😡

Sorry for the long post🤦‍♀️

[Jaydee1507 Administrator]

Just to let you know that I have edited your name out so that you can be more anonymous.

[birkie in reply to Jaydee1507]

🤦‍♀️ Thank you.... I was concentrating on typing what was in the letter🤦‍♀️🤦‍♀️🤦‍♀️

[Charlie-Farley]

How much do they get paid????

[birkie in reply to Charlie-Farley]

To b****y much... And she no doubt got paid for my appointment and did nowt.... 😡😡😡

[serenfach]

We all knew they dont listen, but now it has been confirmed that they cannot read and cannot retain information.

Its a wonder they find their way home.

[sarahstevenson]

Hi Birkie, HU have invited me to reply to you. Hmmmm intolerance to both levo and lio would suggest to me there may be a adrenal element going on, so some adrenal support might be helpful before any thyroid meds. It would be interesting to see if NDT would help. I wonder whether the gut issues on both levo and lio are dietary eg big culprit can be gluten for many thyroid folk, but not for all. Sometimes it's best to step away from NHS as part of the journey for a while with a view to returning once you know more. Good luck with your journey. Hope you find solutions. 🤞

[birkie in reply to sarahstevenson]

I think it could be adrenal, as my cortisol was low in 2020, had that short test in hospital, just said responded, no futher action required not had my cortisol done since.

[sarahstevenson in reply to birkie]

Hi yes the synacthen test is really for Addisons but doesn't show adrenal fatigue etc. Check out James L Wilson book Adrenal Fatigue.... Also look at gluten effects, could be worth looking at Coeliac UK website for info. Gluten sensitivity can be a significant contributor to thyroid symptoms and resistance to improvement. Izabella Wentz, online and books, helped me to realise how much autoimmune factors are key for many thyroid patients, so working out triggers can be helpful.

[Espeegee]

That honestly sounds as though she used a previous letter as a template to reply and inserted text where she thought it relevant but then forgot to remove the previous bits so it just contradicts itself and confuses everything. Send it back with corrections lol.