Still can't tolerate thyroid medication, housebound 26 F, very hypo and hypo adrenals, on HC 25mg

[ratqueenxo]

Hi guys..does anyone have any advice. I am house bound 26 year old female for over a year now. I was put on HC 25 mg by an endo because he suspects non classical congenital adrenal hyperplasia. My adrenals are completley exhausted. I no longer make enough catecholamines also confirmed by a neurotransmitter test. I have also had an HTMA done that showed my adrenals are completley tanked.

I struggle to get through the day. My endo prescribed me l-tyrosine, bcomplex, and dopatropic to help increase dopamine and Norepinephrine, Epinephrine. Is there anything else I can do? I am a mess. I have sibo and severe hypothyroidism also but can't seem to tolerate thyroid meds well now. I have hashis also, any help - please. I thought the HC was so I could take thyroid, does this mean I may need a bigger dose? I am excessively urinating, constantly crave salt, constantly thirsty, nauseous, dizzy, acute anxiety. Thank you

[Forestgarden]

Hi there, can you post your results and ranges for adrenals and thyroid? I'm not an adrenals expert but I'm sure someone on here will be x

[ratqueenxo in reply to Forestgarden]

Hi thanks for ur reply. I only have a morning cortisol test from almost a year ago...yeah my current Endo didn't do anymore testing and used this to diagnose me problem along with suspected NCAH. I am getting a thyroid test soon but haven't been requested for cortisol

[McPammy]

Request a short synacthen test to check your adrenals are functioning properly. Do you have a full thyroid test result T4, T3 and TSH. You may be a poor converter of T4 to T3. Can you go private to get better help. Why has your Dr put you on steroids with only having a 9am cortisol test. A synacthen test must be done. Have you been diagnosed with Addisons?

[ratqueenxo in reply to McPammy]

no i have not had a synacthen test. And no i haven't been diagnosed with addisons. He prescribed it very liberally now im aware of it i feel so stupid!! I will do that today I am going to my GP thank u for ur help

[Blissful in reply to ratqueenxo]

Please don't feel stupid, it happens all the time to most of us i.e. we TRUST what an EXPERT tells us to do - I was a few years older than you when the pennies started to drop (you won't remember pounds, shillings and pence :))

I've just seen your location - was this Endo a public health system person, or private?

Regardless, you absolutely must getting proper testing for your adrenal function and if it turns out your adrenals have gone completely to sleep (for whatever reasons) as far as I remember, HC replacement should include e.g. Florinef (trade name for fludrocortisone). The latter is to replace the aldosterone that your adrenals don't produce.

(random link)

drugs.com/drug-class/minera...

"Mineralocorticoids

What are Mineralocorticoids?

Mineralocorticoid is a corticosteroid hormone, which is synthesized by the adrenal cortex. Aldosterone, the main mineralocorticoid, is necessary for regulation of salt and water in the body. It increases sodium re-absorption by an action on the distal tubules of the kidney."

I am excessively urinating, constantly crave salt, constantly thirsty, nauseous, dizzy, acute anxiety.

I'm not surprised and feel for you however, courage mon brave, you are now on the case as it were. You need to test Aldosterone AND Rennin at the same time - too often rennin doesn't get done.

Something else to bear in mind is whether the HC replacement is actual HC or e.g. Prednisilone - the latter does not mimic our natural steroid hormone production but it is a lot easier to dose. As far as I remember, HC needs a regular X dose every X hours.

[ratqueenxo in reply to Blissful]

He was private. He did get aldosterone listed for my blood test after i bugged him on it, but I will ask for rennin also. I am not compromising anymore it's been ridiculous, bed bound for a year now. Thank u for ur support and encouraging words

[ratqueenxo in reply to McPammy]

I am making an appointment with a new endo I'm disgusted after my last visit. He does not even know my physiological dose

[McPammy in reply to ratqueenxo]

If you’d like details of my brilliant private only endocrinologist please just private message me. He does telephone and zoom if you can’t travel. Hope you’re ok xx

[heathermr]

The Hc is a strange dose, far too small to help you and all together. A usual dose is 10,10 and 5mg spread throughout the day. As the others have said you need to have a short synacthen test to find out whats happening properly. Heather

[ratqueenxo in reply to heathermr]

Hi, thanks so much. I am on 25mg so isnt that a usual dose?

[heathermr in reply to ratqueenxo]

Yes but it needs to be spread out during the day rather than one dose. It interacts with other things during the day so the one dose won't be as effective. Try spreading it out 10 first thing in the morning, 10 at lunch time and 5 at 5 to 6 pm and see if that works. You might instead need a higher dose, I an taking 15,10,5 as that is what I seem to need. You should also be wearing a medic alert bracelet to warn medics you are on Hc as effectively you are adrenally insufficient and should have an emergency injection pack too.Heather

[ratqueenxo in reply to heathermr]

ah ok, thank you. I am only taking 15 in the morning, and 10 in the noon. I was told to not take any after 1pm. I will discuss this with my doctor as he didn't emphasise timings

[SilverAvocado]

Ratqueenxo,

You mentioned you can't tolerate thyroid hormone. When you come back with new blood tests, could you describe a bit more what happens when you try to take thyroid hormone, and what doses or forms of hormone you've tried?

I suggest when you've got some more blood tests as members have mentioned you make a brand new post to put it all in. This one now won't be seen by many people.

[ratqueenxo in reply to SilverAvocado]

Hi I am also seeing a new endo, but I will do that once I have my updated results, should be tomorrow. Thank you so much

[CarolineAnne]

I was bedbound for two years years ago as I could not tolerate Levothyroxine. Swelled up, body and joint pains, extreme fatigue. I could not walk or function. I could not believe that thyroid could do this much damage. I thought it was my adrenals so I ordered Hydrocortisone from USA and took it. I went to see Dr Peatfield, who helped me to try Armour natural dedicated thyroid hormone. It had both t4 and t3 in it. I couldn’t tolerate it still. Same symptoms.

I watched people come and go on the thyroid forums, getting better. I read a couple of success stories about T3 but was scared to try it. I started to research Dr John Lowe’s work. I went to see Dr Gordon Skinner who said that he could prescribe T3 and he was horrified that I was self treating with Hydrocortisone. I don’t advise self treating but I was ready to go to a clinic and had no quality of life. Dr Skinner said that if you treat the Hypothyroidism with enough thyroid hormone, the adrenals usually pick up.

On trying the T3 for the first time, the difference was night and day. I didn’t get the same symptoms as I did on t4. I did get a bit hyper but Dr S said that it was stimulating the metabolism which had been in the dirt for years. I lowered the dose and basically started off with a crumb. I felt well and I continued to improve. I was able to get out of that bed that had become my life and I became me again and got my life back. I didn’t think it would ever happen. I could paint and decorate my house and became a foster carer to my godson, with special needs and challenging behaviours and later became his special guardian.

When Dr Skinner passed away, I bought my own t3 and self treated. I never wanted to self treat, I really wanted a doctor to monitor me. I had a private appointment with an Endocrinologist in my home town and he said it sounded like I was intolerant to thyroxine. He said that he would prescribe t3 for me and still does. I am on 50 mcg daily and don’t have any hyper effects. I feel good and I probably get a bit fatigued if I over do it.

I spent my days researching and reading everything I could to get well. I was cautious and took my vitals daily- every three hours at some times. Other thyroid patients who went before me helped me so much. There is hope and you will find your solution. Wishing you well x

[Snqanq in reply to CarolineAnne]

Hi CarolineAnne

Thanks for sharing your story, just stumbled your cmt here & Omg very much similar to my case that I also can't tolerate thyroxine.. suffering..feeling ill.. many years 😞

Can I pm you and ask for your experiences.. sound like you got a real great previous endo..what he said is simply short but really make sense who is unfortunately passed away so I have no chance..but at least we got a clue..how to treat it..

Im very so happy for you to already get better and well 😇

Im exciting right now thats yes there's always hopes and brighter sides ahead

Im also thankful to ne here on this forum which Im gaining much helped recently and believing thats Im on the ways to my healthy recovery

Bless us all 🙏

[ratqueenxo in reply to CarolineAnne]

I''ve Pmd you, sorry I did not see this until now