Recommendations Urgently Needed: I'm extremely... - Thyroid UK

Thyroid UK
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Recommendations Urgently Needed

I'm extremely ill with untreated hypothyroidism and exceptionally low cortisol. I'm desperate to start taking thyroid medication but I've been warned that I may have Addison's which would make it dangerous for me to take thyroid medication. I need a doctor who can help me safely navigate my adrenal and thyroid problems. I have Thyroid UK's list of doctors but have no idea who to choose?

If you can recommend a doctor, please send me a private message.

Thanks so much!

X

18 Replies
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Did you start taking the T3 you said you sent for?

It would help members to recommend a doctor if you mentioned the area you are looking in maybe edit your title to include the area.

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I have the T3 med but I'm scared of taking it, as it could send me into adrenal crisis.

I'm mostly housebound by severe physical weakness so I can't travel to doctors appointments. If I receive recommendations of doctors I will ask them if they are willing to do skype or phone consultations.

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Do they not know if ur thyroid goes untreated could make u worse.

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My health is indeed deteriorating, presumably because I'm not on the right treatment for my adrenal disorder and I'm not on ANY treatment for my thyroid disorder. This is why I urgently need a new doctor who can help me with all of this.

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Wow i wish i could help with a doctor. I live in u.s.a. so i cant. I hope u can get the help that u need and i will keep u in my prayers.

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Thank you so much for your well wishes! Your kindness lifts my spirits! :)

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Iam also sick with hyper/graves for 22 years also have high blood pressure. I have alot of compassion for people near and far. If i can help u in any way please feel free to contact me. May god bless u and keep u safe!!

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I'm so sorry that you're suffering with Graves and hypertension. That's awful! I hope, so much, that you find a great doctor who can help you! Wishing you the best of luck on your health journey X

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Yes i have a good doctor. Thank u for ur well wishes.

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Are you in the UK? Is your GP running tests or referred you to an endocrinologist? It sounds like you need to be properly investigated.

My daughter was originally diagnosed as hypothyroid at 19yrs and within 2-4wks of treatment with levothyroxine she became more unwell (because it was speeding up the use of cortisol). Tiredness, vomiting, dizziness, unable to eat, aching muscles etc. She was admitted to hospital via A&E and within 20hrs it was discovered she had Addison's. When treated with steroids for Addisons (which she takes for life) her thyroid recovered with no more need for levothyroxine. However, her hypothyroidism may return as she gets older, quite a few Addisonians have a dual diagnosis with another autoimmune condition such as Hashimotos or diabetes.

Your GP should be cautious (it is recommended to be careful with hypo treatment because it can be secondary to Addisons) but if they think you have Addison's they need to get you properly assessed and treated. If you tell people what part of the UK you are in they may be able to recommend consultants.

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Thank you loads for your reply which is hugely helpful in confirming my suspicions about Addison's! I'm very sorry to hear that your daughter was dreadfully ill and really glad she is better now! Yes, I live in the UK and hope to find a doctor who can help me.

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I was treated for hypothyrodism in November 2016, by March 2017 i was admitted tp hospital with an adrenal crisis. Low cortisol must be sorted asap as can be very dangerous. My thyroid is now recovering and my levothyroxine is being gradually reduced.

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Thank you so much for responding and sharing your story! You have confirmed my fears about taking thyroid med before dealing with low cortisol so I'm thankful for your warning. I'm extremely sorry that you suffered through such a terrible ordeal and so glad your health is improving! :)

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Hi do you mind me asking what level your cortisol is and did you have a blood test/synacthen test. I’ve got low cortisol but wondered how low before Addison’s is suspected.

I hope you find someone to help. If you get any recommendations please can you let me know. I’m always interested to hear of good endos Thanks x

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I'm presently taking pregnenolone so I can't currently accurately test my cortisol level. However, last June (when having a break from supplemental hormones) my metabolised cortisol (total cortisol production) was 1388 (normal range is 2750 - 6500). I have not had the synacthen test done.

Sadly, I've read that Addison's is usually not diagnosed until at least 90% of the adrenal cortex has been destroyed by autoimmune attack.

Very sorry to hear that you have low cortisol. I will indeed let you know if I find a doctor who can help. Likewise, if you discover a practitioner who is good at treating adrenal issues then please let me know! Wishing you the best of luck on your health journey :) X

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THANk you. Did you have the pregnenolone prescribed or is it a self help medicine? I’ve read a little about it but don’t know much.

Can your GP refer you for the synacthen test? I was referred by my GP. I presume the test is pretty straight forward so it wouldn’t matter who did it, I’ve heard some GPs will do the test at the surgery. In the meantime you could find a specialist to help you further, but it’s my understanding that will confirm the disease. I’m having the test soon.

My cortisol was 200 ish at 9am bloods, so can’t relate that to your readings. Have you had 9am bloods?

What supplements are you taking? I’ve read ashwaghanda reduces cortisol, although liquorice increases it. You sound like you need something stronger than this though and I really hope you get help soon because it’s pretty serious condition. All the best.

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Pregnenolone and DHEA were prescribed by a functional med practitioner to, supposedly, treat severe HPA axis dysregulation. This protocol (known as The Kalish Method) has not helped me. More recently, a forum member suggested I may have Addison's so I've been considering that as an alternative explanation for my low hormone levels. I'm now tapering off of the supplemental hormones so I can re-test my cortisol etc. My recent 10 am blood cortisol test result was skewed by the supplemental pregnenolone.

I've heard the same as you regarding ashwaghanda and licorice. I'm not taking any herbs for my cortisol.

I hope your GP will uncover the cause of your low cortisol! X

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I’m sorry to hear they didn’t work, so annoying when you’ve paid for good advice!

Have you had an adrenal saliva test? I’ve just ordered one from Regenerus. At least I can see what’s happening.

I’ve just read that pregnenolone reduces cortisol, and if you have low cortisol, this is presumably not good for you.

I take it you know about Dr P? I understand he’s sadly unwell though. Someone has messaged me with an endo recommendation. I’ll PM you and you can research.

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