Very scared. Possible Tumour?

[olga67]

My Endo is looking into my adrenals and requested 5-HIAA and metanefrine from 24H urine and Tryptase from a blood sample. According to Google 5-HIAA is a biomarker for GI tract tumour (I have PA and Hashi) and metanefrine a biomarker for an adrenal tumour. I am scared. Is there anyone knowledgeable about these things?

[sbadd]

I have just had this test but was a 24hr urine im still awaiting results, what are your symptoms, i think mine is been done because i was having sweats and increased heart rate, i dont know much about the test but i too googled it and got the same

[sbadd]

I think its done to rule out, pretty sure most adrenal tumors are benign and they remove them, dont stress too much, i gave my results in a week ago today but im in Australia but surely they have results by now

[olga67 in reply to sbadd]

Thanks sbadd, very kind of you :). The most bothersome are the night sweats and hot flashes, then shakiness. I am on HRT for about two month but it isn’t controlling my sweats even after a dose increase. My thyroid bloods are pretty good on NDT but I still feel very ill. I am going to the lab today and have an appointment with the endo in four weeks to discuss the results and in the mean time I am freaking out.

[Lora7again in reply to olga67]

I had this test when I was first hyperthyroid 10 years ago (Graves' disease) because I had lost weight and had night sweats. Mine turned out to be my thyroid. I hated collecting the urine in a big plastic bottle but I did it. I think they have to rule to out other things because of the symptoms. I also had a short synacthen test to check for adrenal insuffiency and that was also ruled out.

[sbadd in reply to Lora7again]

Yes the bottle thing is not nice but best to rule everything out

[olga67 in reply to Lora7again]

Hi Lora, thank you for sharing. On one hand I am hoping that they will find something that can explain my persisting symptoms and fix it. I did the cortisol saliva test last summer and it came back high two of four . Late afternoon and PM. The lab commented that there is risk of developing Cushing’s. I was hoping that a proper thyroid levels will restore my adrenals

[sbadd in reply to olga67]

Has he checked calcium as my mother in law is on hrt and was very unwell, sweats, shaking etc turns out was her parathyroid glands dumping too much calcium into her body because of benign tumors, either way it can be treated, she is nearly back to her old self now, had surgery in jan, but she was at the point where wasnt getting out of bed and was constantly shaking and not right in head mentally.

[olga67 in reply to sbadd]

Good point. I had high calcium on two occasions (before HRT), went to GP for bloods. My parathyroid was normal and Ca one point over range. GP said no action needed. The Endo did not do Ca, maybe I should mention it next time I see her.

[sbadd in reply to olga67]

Yes i would my mother in law was sick for around 2 years before this was diagnosed and had regulary been seeing her doct, when at hospital when we forced her to go calcium levels were through the roof, she had to have IV stuff for night and day and scans then surgery

[Lora7again in reply to sbadd]

I am pleased to hear she is a lot better and I hope you pursue your complaint with her Doctor btw.

[sbadd in reply to Lora7again]

Yes well he has now changed her antidepressant which she had been on for over 10 years??? I will ask her if she has made complaint parathyroid could have put her in coma if left untreated, absolutely shocking.

[Lora7again in reply to sbadd]

He needs to be investigated to find out why he let her get so ill. Is there a regulation body like the GMC where you are so you can report him? You need to make sure he doesn't do this to anyone else imho.

[sbadd in reply to Lora7again]

Im not sure have never had to go there but will speak to mother in law when i see her

[Lora7again in reply to sbadd]

She might not want to do anything but you need to persuade her because her Doctor is incompetent and should have spotted there was something wrong. The reason I feel strongly about this is because my own mother was told she was suffering with her nerves because she kept getting breathless when infact it was lung cancer. She had breast cancer 6 years before and it came back in her lungs. We didn't complain about the GP because we were too upset but the Doctor concerned visited my mother once a week until she died. My mother said to me that she feels guilty and that is why she keeps visiting me. She never apologised to us about her mistake btw.

[sbadd in reply to Lora7again]

Yes i know i have lost faith in all doctors now with my own health issues and now even more so with hers, second opinion always for me now

[Lora7again in reply to sbadd]

Not all Doctors are bad but I always question them if they tell me something I don't agree with. Recently I had to have a chest x-ray and the Doctor in A & E said the x-ray will help your thyroid. I at once told him I wasn't going to chance it and asked for a thyroid guard.

[sbadd in reply to Lora7again]

Yep i always question now

[olga67 in reply to sbadd]

I don’t trust them either. Always double check them, read a lot, do my own research. And I listen to my gut feeling.

[sbadd in reply to Lora7again]

So sorry to hear that about your mum xx

[Lalatoot]

I had these tests because of night sweats and feeling very poorly despite my thyroid bloods being good according to the doctors.

Results for those tests were fine. What was wrong was that my Ft3 was low and they did not test that. I had to point out the poor conversion in the end and get onto a combo treatment.

What are you thyroid blood results? Post them so we can see if there is an improvement to suggest.

[olga67 in reply to Lalatoot]

3 grains before HRT

TSH <0.01(0.3-4.2)

FT4 18.1(12-22)

FT3 6.2(3.1-6.8)

3 weeks after starting HRT and feeling very poor and still sweating profusely

TSH 0.6(0.3-4.2)

FT4 9.56(12-22)

FT3 3.89(3.1-6.8)

3.5 grains

TSH <0.01(0.3-4.2)

FT4 14.53(12-22)

FT3 5.31(3.1-6.8)

I am on 4 grains now. SI B12 and taking folate. I don’t take vit D now because of high Ca.

2-01-2020

PTH 4.6(2-9.3)

calcium is 2.61 (2.15-2.60)

albumin 45 (34-50)

[SlowDragon Administrator in reply to olga67]

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

when on NDT make sure to take last 1/2 or 1/3rd of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

If HRT isn’t helping....perhaps it’s complicating things

NDT doesn’t suit everyone....sometimes Levo plus small dose of T3 is more easily tolerated

At my most unwell, I was tested for pituitary tumour, adrenal tumours, MS, MND etc etc

It was ALL due to Hashimoto’s, gluten intolerance, vitamin deficiencies and heterozygous DiO2 gene variation

[olga67 in reply to SlowDragon]

I am able to take venous blood myself . I taking NDT once a day as it suits me best and always take my blood at 24 hour gap first thing in the morning. I watch the trend and how I feel comparing to the blood levels. Initially, when I started ND I felt better with each dose increase, then sweats started. I’ve lowered my dose but felt worse and the sweats did not ease. So, I went on HRT and increased NDT. Now, according to my bloods, as I interpret them, I should feel much better. HRT is starting to work, so I shall keep it for now.

I am at lost right now. I could go T3 only route or a different T4/T3 combination, but first I”ll do cortisol saliva test and may be go from there?