Very disappointed with the endocrinologist I've... - Thyroid UK

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Very disappointed with the endocrinologist I've just seen :(

Shazy-B profile image
14 Replies

So after 3 months of waiting I finally got to see the Endo....pointless!

There's is no such thing as Adrenal fatigue it's not a medically recognised condition "your adrenals either work or they don't" he doesn't think my problems are thyroid related as my results are all "normal" he does think my symptoms relate to hypoglycemia as my anxiety symptoms happen in the morning and evening so is testing me for type 2 diebetes.

Feel flat and fed up :(

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Shazy-B profile image
Shazy-B
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14 Replies

I could have told u the nhs does not recognise adrenal fatigue. Been there, done that

Shazy-B profile image
Shazy-B in reply to

How have you dealt with adrenal fatigue Bluedaffodil? Do you have anxiety with adrenalin surges?

tarotreader profile image
tarotreader

Hi Bellaboo, As Blue Daffodil stated been there done that too :(

I have just requested a Genova test kit as my cortosol (?) tested very low in a pm blood test . Test redone in the morning and that was okay so that was that.

Under Dr P, who tested me and confirmed that my adrenal is stressed , I am on 5 Nutri Adrena Max , 4000 mg Vit C, 100mg co-enzyme to help repair mine .....plus B12 , Vit D3 .

long process afraid. Not sure if I need prescription meds so decided to do the test.

I was told I did not have a thyroid problem by the hospital, based purely on a TSH of 0.42 (0.4- 4.0) turns out I have and I have been hypothyroid for a long time. I take Armour NDT for mine, still in early stages.

Hope you get sorted , don't give up :)

Shazy-B profile image
Shazy-B

My TSH has come down from 11.2 (Feb) to 1.1 my FT3 is 4.2 (3.2-6.4)

I think it has come down so much because I was taking HRT at the same time as my Levothyroxine every morning I am now taking them separately the Dr pulled a face when I queried HRT interfering with Thyroid meds! Don't get me wrong I feel much better Hypo wise than I did back in Jan/Feb but I can't accept the anxiety is not related to my thyroid issues

Angel_of_the_North profile image
Angel_of_the_North

Of course hypo- and hyper-adrenalism must exist - it's not as though a gland has read the lab ranges and when the cortisol levels rises by one point it ups and screams "Yippee! Now I have Cushings, let's get a dowager's hump and put some weight on NOW!" Ridiculous. It'll have been creeping to that point, probably for years. GPs should admit that it's an arbitrary decision to treat at one point and not before. OK, it's true up tot a point. If my car engine is knackered, the car may still go - for a bit, so either it goes or it doesn't, but that doesn't mean that the garage couldn't fix it before it fails or that it isn't knackered.

ukangell profile image
ukangell

there is no adrenal fatigue. it's not in any medical books. you have either primary, secondary or terchiary adrenal insufficiency. these are the only 3 words they understand. i would say that if you think you've got adrenal fatigue then you've most likely got secondary adrenal insuffiiency.

i've seen an endo about this, had an SST test and although i'm border line (low normal they'll calling it) they won't treat. i think all they're interested in is when your adrenal glands pack in altogether (primary). it will happen if left long enough. i've gone from 199nmol to 195nmol in 3 months. so looking at it like that to get under the 185nmol range (185-700 nmol is the range they're interested in) you're probably not looking at a very long time. something like 9 to 10 months.

part of the NHS constitution i've been looking at lately is all about working with the patient and looking at how patients feel in conjunction with lab results.

i'm afraid that all drs are interested in are numbers numbers numbers. it's so annoying.

as i've said on other posts here..... had i been 184nmol and my SST 30min result was 539 (mine was 545) something would have been done. more tests. however, nope they weren't so i got 'discharged'! not even a lets review in 6 months or a year.

i have PCOS, i have B12 deficiency, anaemia, vit D deficiency, TSH is up and down like a yoyo and cortisol problems.

i'm on iron tablets, 12 weekly injections for B12 (very laughable as after a few weeks you feel rubbish again), Vit D tablets, metformin (for PCOS), that's it.

i was diagnosed with PCOS because my prolactin level was very high and my androgens were high (i suffer with facial hair :( ), i had an MRI to look at my pituratary gland..... the drs thought i had hyperprolactanemia, but as nothing was found on the MRI i got a diagnosis of PCOS.

it was funny the other day as i saw a physio and she wanted to know what tablets i was on. B12 injections, iron so she was typing away. "so anaemic, and you've pernicious anaemia too." i said the drs won't tell me PA. she wanted to know why not, it was so simple in her mind so why can't it be the same with drs?!?!?!

behappy1 profile image
behappy1

I suffer from secondary adrenal insufficiency. Way to know if you do too is to get a short synacthen test done. My start reading was 220. After 30 mins it only rose to. 320. Should have been up to 550 or above. Had the test done again 6 months later and no change. So now I'm on hydrcortisone. Go back to drs and ask to get tested. Best of luck.

Charlie3055 profile image
Charlie3055

The reason you have hypoglycemia is because of your adrenal problem. I recommend you read Stop the Thyroid Madness book which is excellent. Best of luck x

Kitten-whiskers profile image
Kitten-whiskers

Hello Bellaboo1,

I can completely relate to your problems with the endocrinologist,

Have you had the ASI test done (Privately) by Genova Diagnostics to check your adrenal function? and also a book that might be of interest is Are you Tired and Wired? Your Proven 30-day Program for overcoming Adrenal Fatigue by Marcelle Pick - I have just started reading this and it does look promising, It can be hired from the Library.

I wish you luck and hope things pick up for you.

Best wishes

LouiseRoberts profile image
LouiseRoberts

Sorry to hear that you had a disappointing experience.. :(

Please can you email me with the name of the Endo - thanks..

L

x

carolr profile image
carolr

I took the Red Apple adrenal test

About 18 years ago.

NHS doctors made an excuse that it was just a one off that my morning cortisol was low.

I had the test done twice on 11 Hydroxcortisol and 17 Hydroxcortisol. The NHS had not a clue what DHEA was a and that was low.

I also had 2 24 hr urines with high total cortisol done by the NHS.

at the same time. My consultant

ignored the test results as far as looking for other conditions other than cushings. I said why is 11 Hydroxcortisol missing I got a blank from the consultant.

I asked other consultants they just ignored it or said it was a fluke. Genovea did a cortisol test in 08 it came out the same.

So I had 3 urine tests and 2 saliva. The NHS say the saliva is not accurate.

That's because the blood test is a chemical test and the saliva is a antigen test.

That means the up take is not being measured.

My private doctor and I came to the conclusion it was CAH.

But then another NHS consultant

Said my DHEA was low. So it was not CAH.

Only it does not tell if my DHEA was high as child and young adult. As I had high prolactin then. I had the same growth pattern as a CAH child.

That being the child is muscular

Their growth spurt is much sooner that the class average.

but they end up being smaller than you might think.

This stuffs in books.

You go to any medical library.

Some where most consultants GP don't go. Only students then I think they burn their note books.

And refuse to learn any more. It's much the same with computers.

They only read NHS sites.

If the NHS has not got it right you

Don't get.

Like they say too much salt is bad for you. It's not in some instances it can lower blood pressure. It's other elements like

magnesium missing.

That take it out of solution.

A myth has been built around it.

Basic chemistry GCSE says if there is a lack of a substance other chemicals precipitate out of solution.

If the biochemists within the NHS can't get this right.

But it's not so much the biochemists it's the doctors not understanding the test results.

It's not correct protocol for a doctor to be told the answer by a biochemist.

A biochemist told me once he was told to keep his noise out.

So what we need is a biochemist

not a doctor. They are doctors anyway.. But they don't work in the same closed shop as the medical Doctors.

Jobs for the boy's if you don't have the right hand shake and all that.

It's a Doctor of Neurochemistry we need and genetics.

Carol

.

ellendeaton profile image
ellendeaton

Sorry to say this, but I think your Endo is right. Try eating 4 small meals a day. Don't punch up your sugar so fast in the morning. Most fruits of high fructose content should be eaten at lunch. Forget sugar other three meals...just meat, cheeses, vegies. See if that helps. Also, don't forget to take b12 & magnesium. (sublingual b12 mortared and pestlled in 1 tsp olive oil...apply a bit of this on wrist close to veins at night before you sleep...helps sleep) (put 2 tbspns of epson salts (magnesium) in a water bottle. Fill with warm water. Shake. Put under arms at night before you go to bed...keep the solution by your shower) B12 and magnesium should be taken like this to get directly into blood stream as stomach is a poor conductor of both. Both are needed for so many things and directly affect mood (they kill anxiety, nerves, etc)

acuramom profile image
acuramom

I too went to endo 1st time left crying cuz he said to see a nutritionist only believes tsh as indicator even tho my t3 is low and have many hypo symptoms I work out 5x week and count calories. U woulda thought I asked him to prescribe me crack when I asked for t3

sharonjarvis profile image
sharonjarvis

I've just been to see an Endo today for the first time. I was the same as Acuramom, I left crying because he's told me everything on my list of symptoms is caused by the grief of losing my brother 2 years ago. Sometimes you really feel like giving up! but being on this site and reading other peoples stories has helped me immensely (I hope it's helping you as well) and I realise that we need to help ourselves, because the doctors aren't going to help us. (To the people who have got wonderful doctors and consultants "You lucky buggers!!)

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