Low T4 level & Adrenal Adenomas & Levothyroxine instructions?

[ghana60]

2 adrenal ademonas were found a few years ago when being scaned after treatment for bowel cancer. I have suffered very low energy, increasingly weak limbs, feeling cold easily, poor wound healing, thinning hair etc for many, many years. Last week was found to have very low (2.5) T4 level. GP ordered blood tests and thyroid scan after feeling swollen glands on neck. I had been at work and felt faint slurring words, tongue felt swollen and tingly, weak limbs, sluggish movements.

For over a year strange surges of what feels like a fight of flight hormone go through me and can just come from nowhere and are not related to situation. GP had prescribed anti depressant and anti anxiety meds but they didn't help stop them.

Despite being cold much of the time I have recently noticed strange sweating just on face - could this be a sign of adrenal crisis?

Recently read on the levothyroxine pack (have been taking 100mg for a week now)

Do not take Levothyroxine Tablets:

• if you have any condition that affects your adrenal glands

(your doctor will be able to advise you if you are not sure). If any of these apply to you, do not take this med

Really grateful to hear some thoughts or hear from others who have eperienced similar symptoms and found out more than I have so far!

Thank you

[Molly77]

I have two ademonas on my adrenals and was told many people do that they do not cause problems. But, my adrenals are flat line. I have to take hydrocortisone 5 mg am and 5 mg pm. I didn’t have cancer put my colon ruptured. But, I also was hyperthyroidism and had radiation Iodine to kill them now hypo. When your hands and feet are cold means you are hypo. When your hot flash in the face you are hyper. When you feel faint you are hyper could be right when you take your meds. But, I got past it you will too! But I believe 100 mcg is not enough. Plus, you need to be taking time released VitC. You need to be taking time released B complex and Vit K and Vit D3 this will help you greatly as you get your dosing regulated. You may want to talk to your endocrinologist about armor it’s a natural hormone and it has t3 and t4 both in it. T3 works amazing does not have to covert and relief immediately. Saved me. Just study and learn. It’s a journey but, you will service. I did pass out many times. I lost my hair. But, today everything is back. You have to find your balance. Even Doctors can’t find it. You have to know your body and know the signs. Google everything. Be smarter than your Doctor. You got this. Good lock! Prayers!

[ghana60 in reply to Molly77]

Thank you so much Molly - that's really kind and very much appreciated. So glad to hear you have recovered your health after a long struggle.

My sister is a year older and was diagnosed hypothyroid 20 years ago. She started out on 175 mcg. My poor niece got thyroid cancer (only 19) which thank goodness was cured.

Sorry to ask more questions but . . . Wondering what tests were used to find out that your adrenals were flatline - had they stopped functioning altogether? Wondering if people have to take hydrocorisone if they lack cortisol?

The endo I as refered to a few years ago was quite arrogant, doubt read notes thoroughly nor seemed to be able to count (!) eg: said only one adenoma shouldn't be a problem when there are 2 listed on notes/seen on scan! Could be wrong, but got the impression that they didn't want to deal with anything which might add to workload.

Recently was shown a diagram of a person with cushings disease, it was like looking in the mirror! Wondered if you were tested for Cushings Disease caused by adenomas? I heard the saliva test was the most accurate but again would need to doucble check.

Will keep on investigating and in the meantime will order some: Vit C (time released), Vit D3/K2 and B Complex. I will definitely ask about Armour - would you be able to let me know which brand or does it make no difference?

Thank you so much for your time and experience which is very much appreciated

[Hidden]

Hi Ghana60, Were you given any tests for the adrenal adenomas when they were found? Many endocrinologists don't have a lot of experience of people with adrenal problems or Cushing's. You say that you saw a poster of someone with Cushing's & felt that you had similar symptoms; adrenal adenomas are know to be the cause of Cushing's syndrome, so you possibly need to be tested for that. However you need to find an Endo who is used to treating people with Cushing's. If you are on Facebook then there is a group called Cushing's UK where you will get some help & support. I've had Cushing's although mine was caused by a pituitary adenoma.

[ghana60]

Thank you very much Pauline - glad it sounds as though you've been successfully treated which is wonderful! As far as I'm aware no rests were carried out for possibility of Cushings disease. I have very weak forearms and thighs, belly is huge compared to the rest, face is getting increasingly round with swollen neck area - family and friends have commented on this, my bones make creaking noises, my skin is dry and feels papery (could be hypothyroid recently diagnosed very low T4) They just said the size of the adenomas would be monitored and that they thought they were benigh (although how could know this without a biopsy I don't know?!) I will try and ask the FB Cushing's UK group THANK YOU THANK YOU

[Shellian]

Hi

I am just wondering if you have been tested for MEN2a. This is a genetic condition which always affects the thyroid, but can also affect adrenal and parathyroid. Please look on the Amend support website for more details.

Good luck