Update #8 Endo or Endon’t : hello 👋 Here is my... - Thyroid UK

Thyroid UK

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Update #8 Endo or Endon’t

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hello 👋

Here is my next update re. Adrenal ~ thyroid ~ sex hormone journey back to health. My previous post is here: healthunlocked.com/thyroidu...

I decided to write this update a little early because I wanted to share a little hope with everyone… today I had possibly the best doctor’s appt. I’ve ever had, and it was with an NHS ENDOCRINOLOGIST!!

As I’ve already written about, I failed my synacthen test back in February and subsequently decided to self-source hydrocortisone (HC). My default position is always to avoid NHS where I can as historically I find it nothing but traumatic dealing with their incompetence and ignorance. However, my private endo I saw for the synacthen wrote to my GP surgery who subsequently referred me to an NHS endo. As I am already self-sourcing, I didn’t see much harm in attending and actually being honest about what I have been doing because the worst they could say is “we don’t agree to help you” and I simply continue as I already am doing. I took a print out of all my measurable metrics (RHR, HRV, BP etc.) that I have been tracking as well as a list of improvements and symptoms that remain unchanged. I was mentally armed with all my best arguments to justify T3, adrenal fatigue, widespread ill effects of thyroid disease in general etc.

The conversation went like this -

“I think I am remaining hypothyroid in spite of taking thyroid medication because of my poor adrenal function”

“Yes” with nodding “makes sense.”

… slightly surprised I don’t have to fight to explain why this theory checks out…

“And in fact, I think most of my health issues are stemming from my thyroid”

“Yes” with nodding “makes sense.”

… very confused by this extremely reasonable doctor…

”have you been taking the hydrocortisone recommended by the doctor who gave you the synacthen?”

“Yes, I got my own and I’ve been taking 25mg a day”

“25mg is quite a lot. I’ll prescribe you 20mg.”

… stunned silence. Omg. I don’t have to fight for this…

“What else do you take?”

“I take T4 and T3”

“OK. I can ask your GP to give you the T3 but they will refuse because it’s very political. But you can buy your own from this website” *proceeds to show me the website I’d bought my HC from* “Tiromel is very affordable. I wouldn’t usually show this to patients but I can see you are very responsible.”

… more stunned silence with faint maniacal smiling and nodding from me…

”I’d like to test you for adrenal antibodies, coeliac disease, electrolytes, liver function and TSH.”

“OK.”

“In three months we need to retest your adrenals to see if they have recovered. Bye”

I didn’t even have time to think to ask… Ok, does this mean that you recognize adrenal fatigue as a legitimate condition then?

God knows I have done my fair share of complaining about the utter futility and sometimes outright harm of doctors when it comes to treating thyroid disease, but this experience was just so wonderful. There was no judgement, just a complete acceptance and trust in me as a patient who is advocating for themself. I will, ofc, take their name to my grave as they are an NHS doctor and I would never risk getting them in trouble. But my gosh it’s restored some of my faith… there are some good ones out there.

—————————

Update on my symptoms -

I was settled best on 5mg HC for a good few weeks, but then I introduced T4 75mcg, and T3 5mcg and immediately saw my demand for HC increase, so I am on 25mg HC daily at the moment. As for the Florinef, I am using Licorice Root at the moment courtesy of a Kinesiologist I am using to help guide me with supplements and medication dosing. Something about this mixture has improved my light sensitivity enormously, as well as my blood pressure (which is almost a little too high now so must monitor that). Periods have become regular again too! Happy with all this steady improvement although it is slow and I remain extremely fatigued and quite stubbornly low in mood as usual for me. Weight loss has been up and down, I have lost around 3/4 of a stone so far but anticipate much more of a loss once thyroid hormone is optimized.

Unconditional love to those blighted by this terrible disease,

Relentless x

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12 Replies
Alanna012 profile image
Alanna012

So happy for you finding such a good endo and actually receiving some acknowledgement and getting some real help within the NHS!

Lol... I am shocked though! I think I'd actually become paradoxically annoyed at the lack of challenge. 'Did you hear what I said? I said I'm taking cortisol! What do you mean it's alright to take T3? what kind of doctor are you??!' 😂

in reply toAlanna012

I know, I wanted to say “who do I shout at now??” I always have to brace myself SO hard before going into any medical setting, so much trauma and frustration… it was almost salt in the wound to have someone be so obliging after I’ve spent god knows how much money and 18 years chronically unwell! It was so simple. He made it feel like it was SO simple to get better too, just like “yeah, makes sense.” And then when he got out the website that I used to buy my T3 and HC, I almost keeled over completely 😂

Alanna012 profile image
Alanna012 in reply to

🤣🤣

TiggerMe profile image
TiggerMeAmbassador

😲👏👏👏🤗

Jaydee1507 profile image
Jaydee1507Administrator

Well blow me down with a feather! Thats just incrediblye amazing and good news in many ways. So much better to have a doctor on your side. Well done.

in reply toJaydee1507

I know… apart from anything else I can’t believe I’ll actually get the NHS to pay for something! 🤭🤭

seveneleven profile image
seveneleven

Amazing! How do we clone this unsettlingly reasonable person?

in reply toseveneleven

I’m seeing him again in 3 months… I’ll snatch a hair!

Regenallotment profile image
RegenallotmentAmbassador

woop! Get you and being a responsible patient! How validating for you! I am beyond thrilled 🎉

in reply toRegenallotment

yes! Good star for me ⭐️

ATVMWF profile image
ATVMWF

You brought a smile to my face and hope to my heart that things Thyroid will eventually improve....👍♥️👍

in reply toATVMWF

let’s hope so… he was a total gem ❤️

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