Addisons and Hashi with Fibro :((

[Miriam22]

So the doctor in Belgium confirmed that I have ADDISONS and i am honestly shook that my own body si attacking my adrenals on top of my body attacking my thyroid :((..I have asked my Gp to do further tests before i take cortisol for life. The diagnosis just seems alot more sinister than hashis or maybe because i know of thyroid for past 5 6 years but the Addison is just killing me quite literally PLEASE tell me if anyone knows or suffers from Addisons and hashi? :(( how are ug uys managing and coping?

[Jeannie77]

I have both, and a lot more autoimmune conditions, like coeliac disease which makes my absorption of cortisol problematic. Addisons itself is much easier to manage than Hashi, You are simply replacing what your adrenal gland normally makes and the vast majority of people more or less forget they have the condition. I am assuming you have had the full test, which takes forever. This will show the right amount of medication for you. Not that long ago both were killers. My endo said I would be dead 6 years ago if not for modern medicine. Be happy and thankful that an Addisonian can live a normal lifespan thanks to the replacement meds. All the best.

[posthinking01 in reply to Jeannie77]

Hi there - I have adrenal insufficiency - can I ask if you have to updose when you have a stressful situation including emotional situation - I find not only just illness you have to adjust - I have to sometimes consider hot weather or even cold as a stressor.

[Jeannie77 in reply to posthinking01]

I am not sure about insufficiency, as you can damage the adrenal gland by overdosing. The guidance for Addisons from my endo is clear, but they know my levels. Mine were apparently two weeks from death. That minute the doc phoned the endo as I wouldn’t have made his appointment alive. I had great dreams, but no energy, slept most of the time. I had no energy to get stressed latterly, but going off food was great for the figure.The reason was found when I collapsed face first on the pavement. The people who diagnosed you will know your levels, and be able to best advise.

[posthinking01 in reply to Jeannie77]

May I ask do you not need to updose when stressed or for illness. 'Stress' can mean almost anything hot weather cold weather etc.

[Hedgeree in reply to Jeannie77]

Hi Jeannie77,

You refer to 'the full test, which takes forever'

Do you know the name of this test? I'm asking as I'm currently getting lots of tests done by an NHS endo and hoping to get diagnosed with something? possible underactive thyroid and pituitary issues but it's taking a long time and I just feel sicker and sicker each day.

Best wishes.

[jade_s in reply to Hedgeree]

See tattybogle's post above and the nhs link: nhs.uk/conditions/addisons-...

It is a Synacthen stimulation test.

Good luck x

[Hedgeree in reply to jade_s]

Thanks jade_s,

Yes I've had that test. Wasn't sure if there was another test that I could get done. Though trying to get the results is proving to be quite a challenge despite emailing and ringing the endo's secretary; no news is good news I'm assuming.

I'll have a look at the link, thank you.

[jade_s in reply to Hedgeree]

Oh sorry to hear that! There might be other tests for pituary but I know nothing about it. For adrenal I believe the stim test is the gold standard. Hope you get your results soon! Scandalous it's taking this long. Take care and good luck!

[posthinking01 in reply to Hedgeree]

short senacten test where they inject you with a hormone called ACTH to see the response from the adrenal glands.

[Hedgeree in reply to posthinking01]

Thanks posthinking01,

Yes I've had a synacthen test done I wasn't sure if there were other tests I could also get done which might help.

[posthinking01 in reply to Hedgeree]

Well obviously the 24 hour urine test - and blood tests.

[Miriam22 in reply to Jeannie77]

I have been prescribed

10 mg hydro cortisone

15 mg NDT EFRA which i have upgraded to 30

I am also prescribed progesterone but havent started yet coz ofcourse fue to all this ny hormones are affected

I will ask more about updosing and how to take cortisol

[Brewtime1]

Hi Miriam22,I have both Addison's and hashi,Iam 47 and have had Addison's for 20 years,once you start your hydrocortisone/fludrocortisone you will feel a lot better than you do know and can lead a perfectly normal life.If you google Addison's self help group you will find some good information and guidance.

[Miriam22 in reply to Brewtime1]

I have been prescribed 10 mg hydrocortisone a day .... i was very weary to take it ...so doing more research hopefully will get soke further tests done on nhs...if anyonr knows any better tests for addisons that can be done in uk please let me know

[posthinking01]

Hi Miriam - I too have Addison's - may I ask who you saw in Belgium - are you the lady who lives in Belgium?

[Miriam22 in reply to posthinking01]

Hey no im in london butbthere is a famous doctor who runs a hormone clinic so i had my bloods done from there and 24 hour urine ...in that it was evident that my cortisol was very low..all kinds of coritsol was low.. ill post my result some time... so when i got to know about addisons from this forum and i asked her she said yes she has prescribed 10 mg a day which im scared to start but reading everything gives me hope i guess ill have to do more testing to know whats the rigt amount for me

[tattybogle in reply to Miriam22]

What tests have been done to confirm Addisons ?

Here is the list of NHS tests:

nhs.uk/conditions/addisons-... NHS tests for Addisons disease diagnosis.

presumably it would be a good idea to see an NHS GP and get a referral to endocrinology before you start to take cortisol, if you are concerned that the tests/ diagnosis from this Doctor were not thorough enough to diagnose Addisons correctly.

NHS will need to know anyway ,as it's vital it goes on your records.. and presumably they would not just accept a private diagnosis of Addisons unless all relevent test were done ,. (and once you've started to take cortisol i assume that would make it difficult for them to do their own tests for it)

and by the looks of it , if Addison's is confirmed you have to inform DVLA (if you have driving licence ).

[Miriam22 in reply to tattybogle]

thats soo trueee tattyboggle !!!! private tests are never considered anything even if they are done so much better ... oh how does the driving thing connected with addison....what else am i supposed to know...is ti a disability.... ? Absolutely I have a one to one with my GP this friday so will try get that sorted ...im not taking any cortisol for now so i can have true tests when they do ! i just took it for 2 days and stopped because i wasnt sure and rightly so as i got to know from all of you guys!

[tattybogle in reply to Miriam22]

i was wrong ..it's just if you drive a lorry / bus . gov.uk/addisons-disease-dri...

you don't need to tell them for cars /motorbikes

i don't know enough to comment on those test results , but presumably there must be a good reason why NHS also do antibody tests and short synacthen tests for diagnosis and don't just rely on blood / 24hr urine.. or else they wouldn't bother .

[Miriam22 in reply to tattybogle]

These are the tests done that indicate addisons

no syncathen or stim test

Urine 24 hour

Cortisol libre 43 μg/g créat. 40 - 88

17 hydroxysteroids

17 Hydroxystéroïdes totaux 7.03 mg/g créat. 5.97 - 11.25

17 ketosteroids

17 Cétostéroïdes totaux 8.44 mg/g créat. 5.5 - 6.6

Androstérone 2.79 mg/g créat. 1.11 - 1.44

Etiocholanolone 2.40 mg/g créat. 1.77 - 1.88

DHEA 0.57

Aldostérone 7.1 mg/g créat. 9.9 - 21.8

Hormone de

Blood

ADRENAL HORMONES

Total cortisol (TC) 264 nmol/L 276 - 689

9.6 μg/dL 10.0 - 25.0

Transcortin (CBG) 18.1 mg/L 24.0 - 50.0

Bioavailable cortisol (TC/CBG) 73 ratio 27 - 143

Free cortisol 33 nmol/L 28 - 83

1.2 μg/dL 1.0 - 3.0

[jade_s in reply to Miriam22]

Hi Miriam like I mentioned on the other thread, you really should get the full testing first, as per tattbogle's link. That clinic's docs will say things like that without investigating further, doesn't make it true. I know you're in a shock about it, and it could very well be Addison's, but just get the tests done first. I promise you we will all be here to support you regardless of the results.

[Miriam22 in reply to jade_s]

thank you soooo much jade ❤️❤️❤️.... it seems so with the blood and urine results i have for now.... but I have asked my GP for the syncathen test ..she said half the tests are not done in NHS but she will refer me to endo ...meanwhile i asked the Belgian doctor given such low levels of cortisol as i had understood from the forum...that it is addisons and i am like 😞😞😞😞

[posthinking01 in reply to Miriam22]

Hi was it Dr. H in Brussels if so I was under his direction for over 7 years.

I would be interested to see your results - I had to do the 24 hour urine and take on the Eurostar to see him was a nightmare. You still will need a short senacten test in my opinion.

[Miriam22 in reply to posthinking01]

yes indeed it is his clininc but unfortunately i coudlnt afford him as his fees was 3400 euros so got some woman... yes the same urine and blood

I am posting my rather bleak results here:

Urine 24 hour

Cortisol libre 43 μg/g créat. 40 - 88

17 hydroxysteroids

17 Hydroxystéroïdes totaux 7.03 mg/g créat. 5.97 - 11.25

17 ketosteroids

17 Cétostéroïdes totaux 8.44 mg/g créat. 5.5 - 6.6

Androstérone 2.79 mg/g créat. 1.11 - 1.44

Etiocholanolone 2.40 mg/g créat. 1.77 - 1.88

DHEA 0.57

Aldostérone 7.1 mg/g créat. 9.9 - 21.8

Hormone de

Blood

ADRENAL HORMONES

Total cortisol (TC) 264 nmol/L 276 - 689

9.6 μg/dL 10.0 - 25.0

Transcortin (CBG) 18.1 mg/L 24.0 - 50.0

Bioavailable cortisol (TC/CBG) 73 ratio 27 - 143

Free cortisol 33 nmol/L 28 - 83

1.2 μg/dL 1.0 - 3.0

just getthing that women to respond to me or give me answers is a nightmare...due to covid it was an online assesment... but i can i think go now and do this sencaten test ??

[posthinking01 in reply to Miriam22]

Hi yes I was one of the last people he saw - he went off to write books - he will see people but it will be expensive as he doesn't really want to do clinic any longer. They are terrible to get in touch with the Drs, - I had many a row about it and once when I had to see a different Dr. as Dr. H was away ill - I found out that the Drs. in clinic are actually Drs. in Brussels who just did clinics for Dr. H. trained in his methods. I wouldn't panic just yet - but get into the NHS system via your GP as soon as possible. However, you must impress on your Dr. that you could have a problem and need help. Ask the Belgium office to translate your results into English so you can show to the GP etc.

[Miriam22 in reply to posthinking01]

Omg yes.... they are so s$@*!( to.contact in the end i was the like CAPS LOCK typing coz she is just not helpful at all and the reception is im shambles....i thinking with so kuch kerfuffle i should have paid 3400 euros and seen Dr H. I have an appointment with GP ill try my best that she takes me serious...

[posthinking01 in reply to Miriam22]

Hi there - you wouldn't have got much better treatment - can't say any more in print here - but contact the secretaries by phone if you can and ask them to send you a translated copy - it isn't that difficult to do yourself - I could have done it for you but no time at moment. I used to have to contact Belgium so many times that my hubby got me a special deal on BT for calling Belgium numbers otherwise it would have been so expensive. Let me know if there is anything else I can help with. Is it Natalie still in reception.

[Miriam22 in reply to posthinking01]

Yes Natalie is one of them but for the past 2 3 months apparently their reception has been so bad... they didnt even give ny blood test iver to the doctor although i sent it so many times and then she studided it while in the time of appointment when i personally emailed her .....and i had to chase them to take my payment even lol .... and u r right im now using ny cousin International exchange thst he uses for work to call them anyway yeahhh

[posthinking01 in reply to Miriam22]

When we were part of the EU they had to accept a Dr's diagnosis and test results from say Belgium because they were the rules - so hope you don't hit a problem with the EU nonsense as they continue to be so unhelpful shall we say. If you get someone fobbing you off and offering no testing at all then my usual retort when I was so ill and no-one was helping me - well I will hold you personally responsible if anything happens to me.

[radd]

Miriam22,

Have you had elevated adrenocortical antibodies confirmed?

Do you have any labs (complete with ranges) to share?

[Miriam22 in reply to radd]

Urine 24 hour

Cortisol libre 43 μg/g créat. 40 - 88

17 hydroxysteroids

17 Hydroxystéroïdes totaux 7.03 mg/g créat. 5.97 - 11.25

17 ketosteroids

17 Cétostéroïdes totaux 8.44 mg/g créat. 5.5 - 6.6

Androstérone 2.79 mg/g créat. 1.11 - 1.44

Etiocholanolone 2.40 mg/g créat. 1.77 - 1.88

DHEA 0.57

Aldostérone 7.1 mg/g créat. 9.9 - 21.8

Hormone de

Blood

ADRENAL HORMONES

Total cortisol (TC) 264 nmol/L 276 - 689

9.6 μg/dL 10.0 - 25.0

Transcortin (CBG) 18.1 mg/L 24.0 - 50.0

Bioavailable cortisol (TC/CBG) 73 ratio 27 - 143

Free cortisol 33 nmol/L 28 - 83

1.2 μg/dL 1.0 - 3.0

I think the story is rather bleaker than what i think it to be

[radd in reply to Miriam22]

Miriam22,

Ok, these are in French, not my strongest point but ……

Both total & free serum cortisol are low & CBG (cortisol transporter) is correspondingly low. Aldosterone is low, presumably DHEA is low but there is no given range?

The rest are adrenal hormone metabolites that I can’t translate but understand enough to know there are no adrenal antibody results here. The common ones are 21-hydroxy autoantibodies, 21 – OH autoantibodies, and less tested are 17 – alpha hydroxylase and P450scc autoantibodies.

On what basis did your specialist determine auto-immune Addisons Disease?

Your results are low but no lower than mine before I optimised thyroid hormone and started HRT, all of which helped to improve adrenal function. Read my profile for further info.

[Miriam22 in reply to radd]

yeah sorry I just about made do with the french as well .... it was done in belgium hence why...

I think based on the low cortisol values she determined it and yes no antibodies so I will or can request her to get my antibodies done as well the test everyone is suggesting but I have had adddison symptoms of increased thrist and always craving salty food and mad ...totally crazy tiredness and fatigue .... i am not diabetic so i attributed it to thyroid

do you take just T3 or NDT? My `t4 is normal towards the higher range ....what thyroid do u take?

[radd in reply to Miriam22]

Miriam22,

I take NDT, and at present have added some Levo after finding Armour too T3 potent for myself.

You said in your opening statement “So the doctor in Belgium confirmed that I have ADDISONS and i am honestly shook that my own body si attacking my adrenals on top of my body attacking my thyroid’. Where did this come from if adrenal antibodies haven’t been confirmed?

Adrenal insufficiency can be primary (usually known as Addisons), Secondary (lack of pituitary ACTH/tumour/etc), or Tertiary (hypothalamus issues). Apart from an immune system attacking adrenal glands, other causes of Addisons may include TB, genetic variants. fungal infections, etc.

Or excessively low cortisol levels could be due to a lack of thyroid hormone dictating compromised adrenal function to such any extent that hormones are now deficient. I had this, complete with ongoing thirst, cravings for salty foods, etc, and you really need a stim test to establish if adrenals full capacity is attainable. Don’t take the Belgium prescribed HC if you are planning on further UK investigations or results will be skewed.

Do you have a thyroid issue?

Are you medicating? (If so what & how much)

Have you labs (including ranges) for recent ferritin, folate, Vit B12 & Vit D?

[Miriam22 in reply to radd]

Hi Radd excellent questions unraised and information given.

So im taking belgium orescribed

Folate

B12

Magnesium

Omega

Borage oil

Vitamin d

Will be starting selenium

Vitamin A

Pregnolone

Need ro start progestrone but havent yet

I was also prescribed iodine and when i asked the doctor she said small amount is okay big amount is bad but im still not taking it

Yes HC im not taking at all. I have qn appointment with GP this friday so will beg her to get me tested for addisons .

I.have a chronic hashi issue that has been going on untreated for years so that could also be a factor. Most of all i have a pitautry tumor that makes alot of prplactin but thats been dormant and normal for years .