Disappointing endo visit.: Well my endo visit... - Thyroid UK

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Disappointing endo visit.

JellyJac profile image
11 Replies

Well my endo visit didn't go too well. Firstly, I didn't see the consultant, I saw a registrar. Although She was quite sympathetic, she did not know what NDT was and when u explained it was a natural desiccated thyroid hormone that contained all the thyroid hormones, she looked blank and asked if I had the tablet so she could see it. (I didn't have it with me) I told her how exhausted I always was, and how I have gained 8 stone in 7 years despite a healthy lifestyle. She was shocked by my swollen and mottled ankles. Whilst being examined my face neck and chest had an angry rash, and she was very concerned about this. I told her this happened if I felt nervous or stressed and she said she would refer me to a dermatologist. I have since looked up the rash and have seen that it is similar to Addison crisis as it is a rush of cortisol. ( I haven't been diagnosed with Addisons but I do have stage 3 kidney disease)

I have also gained 6 kilos since xmas after losing 11 kilos since September. (I added t3 in September and swapped to thyroid s in the beginning of December.

Anyway, at the end of the appointment she said I looked depressed and said the weight gain was down to depression. I said that even if I am depressed (which I am not) I certainly haven't been depressed for 8 years and there is no physical reason for the weight gain. She obviously didn't believe that I eat healthy and walk 5 miles a day. Anyway she has asked me to go back in the morning for a fasting blood test for full thyroid, hormones and diabetes.

Does anyone have any thoughts? Particularly regarding the rash and adrenal crisis?

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JellyJac profile image
JellyJac
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11 Replies
shaws profile image
shawsAdministrator

Your experience is very common. Unfortunatley, they are apt to excuse the clinical symptoms as being due to something not connected to the medication.

Research has been done and you can send her a copy. Modern Endocrinologists are ignorant about NDT. The British Thyroid Association have made False Statements About it as well as they are determined only to prescribe levothyroxine, the poorest product.

web.archive.org/web/2010032...

web.archive.org/web/2010103...

You TSH is either being kept within the TSH 'range' or you need something other than levothyroxine.

Don't take your levothyroxine before your blood test, take it afterwards. If you have your breakfast, leave 2 hours each side of taking levo after your blood test/

I forgot this link too, very important:

thyroidscience.com/Criticis...

JellyJac profile image
JellyJac in reply to shaws

Yeah I stopped taking levothyroxine in September. I have not taken NDT or any supplements today and won't take them tomorrow. My TSH at last count was 3.9. Unfortunately after she blamed depression I switched off and just wanted to get out of there.

shaws profile image
shawsAdministrator in reply to JellyJac

Your TSH at 3.9 is/was far too high. We have to have a low, very low or suppressed TSH but they have been taught that suppressed is 'problematic'. Not as problematic as not having sufficient, which your TSH was at 3.9

JellyJac profile image
JellyJac

Just looking at my blood forms, she has requested b 12 and folate, crp (not sure what that is) liver function test, iron studies, lipid profile, calcium profile, glucose fasting, urea and electrolytes and glycated HB and full blood count.

shaws profile image
shawsAdministrator in reply to JellyJac

The problem is if diagnosed hypo and you stop taking medication, you could cause more harm than good as every major organ can suffer damage. We don't want heart attacks, etc. Because it is very insidious. we don't feel significant changes for quite some time.

Mitchem profile image
Mitchem

Hi, you just reminded me that I ger a red rash that spreads down my neck and chest when I get upset or stressed too. I never really thought about it before really. Do you know what caused it yet? Sorry I cannot help with your question but I'm clueless about most things thyroid still. Take care.

cjrsquared profile image
cjrsquared

CRP is c reactive protein which is an inflammatory marker. If raised it shows that your body has an inflammatory response which may be due to infection, auto immune disease, allergy or other causes. On its own it doesn't convey much and needs to be intepretted in context with other blood results AND CLINICAL symptoms (the thing modern doctors are not taught about) good luck.

JellyJac profile image
JellyJac

Thanks really fed up. I have been having the rash for a good few years, in fact I have a photo that shows it even before I had hypo. Although it was much more dramatic today it looked like bad sunburn and i even had a white ring around my neck as though it were from the sUn.

jellynpain profile image
jellynpain

Hi Jacqui,

I have rushing across my neck & white patching..oh & lots of other hormonal/thyroid type problems (I have half a thyroid gland & micro pituitary adenoma.

I'm in your area of UK by the way.

I've given up on my Endo and team, waste of time. They don't have the expertise tbh.

Lab refused to do my vit d and TPO. Such hard work. My Folate is below range but nothing offered. They didn't even report correctly to my gp and didn't send the bloods either.

Don't like to complain but sick, literally, of it all.

X

JellyJac profile image
JellyJac

Hi jelly, did you go to the royal hospital?

JellyJac profile image
JellyJac

Has anyone else been to the Royal hospital in Liverpool to see Endochrinology?

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