Consultation with 'Top Endo'

[Yennn]

After posting my two failed acth test, and gtn loads of advice on this forum. I decided to seek a private endo, the BEST in my area. (Name removed as per Admin Guidelines) his reputation on adrenals and thyriod are exceptional. I’m 18 months out of a job due to sickness, due to my nhs doctors not following endocrine guidelines I forked out 200 pound for half and hour apt, plus traveling to this city and back. My results to remind:

First acth baseline 251(240-600) rise 395 >430 acth 4 <20

Second baseline 377 rise 423 acth 6

NHS docs quoted borderline fail only to take 10mg HC. On sick days.

Following the advise here I was told there is no borderline it’s a pass or a fail and I have secondary adrenal insufficiency and to contact endocrine society to notify these docs aren’t following guidelines.

I had my private apt with ***** today.

Showed all my labs, letters to him

And his answer was : yes I agree you don’t need HC, and also your thyroid function is 100% normal. Then I questioned how can u say this when I failed two acth test. His Answer: these test are done on 100 ppl and u might just be the small % that didn’t quiet make it in. It’s a range it’s not accurate. There’s nothing alarming

Especially if u have a normal basil line cortisol you are fine.

If u however had a baseline cortisol of 80 for say and it rised to 110 then HC would be needed. I then said even if baseline cortisol is within range it doesn’t rule out adrenal dysfunction as said on my lab paper. His reply honestly was: these quotes that are written on labs, sound as if they were written by lawyers they are nonsense and to just ignore them.

You don’t have adrenal problems and I will write a note to ur GP stopping hc on sick days. Stopping all prescription of HC now. I feel like I have shot myself in the foot.

When asked how do I feel taking 10mg a day I said around 80% he said if I had said 100% then it would have made the difference to him encouraging me to continue to take it. What??

This is word for word my consultation.

I’m sick sad and even more than confused.

This is now a team of endos saying the same thing and now the best doctor in my country. I’m in Scotland.

I will also post my thyroid function which I was advise my ft4 ft3 was on the low level of range by this forum and ***** said 100% thyroid function.

Also said all other test are normal too. Even when u questioned a hormonal imbalance.. my progrestrone is 0.5nmol I am 32 year old girl 🙈 are these test normal?

I am at my wits end on brink of tears trying to figure all this out.

tsh 2.01 (0.27-4.20) ft4 16.3 (12-22) Ft3 4.22(3.10-6.80)

Aldosterone 130 (130-800)

Renin 41.01 <52

IGF1 196 (72-259)

Fsh 2.6 (3-8)

Lh 4.7 (2-13)

Estrodial 582 (100-2000)

Testerone 0.7 <15

Androstenedione 2.3 <5.5

Progesterone 0.5 <6

I don’t think i am going to get help form my docs or Private ones now that I’m 200 pound down, and feeling as helpless and hopeless as ever. Could someone have a look at these results and even advise what I can do?

I will not be bedridden and housebound and accept no treatment even if that means being my own advocate and self medicating. I will do whatever it takes. If anyone could point me in right directions how to up these levels

Drop me a PM or comment.

Would be so grateful.

Yen x

[Cooper27]

Have you ever had antibodies tested?

The only other thing I could suggest is seeing a nutritionist. I can recommend someone in Glasgow if you're near there. If not, make sure to check the BANT register to find someone qualified in nutritional therapy: bant.org.uk/bant/jsp/practi...

Unfortunately nutritionist isn't a protected title, so the BANT register helps you to pick out only the practitioners who have a proper degree, as opposed to someone with a 2 hour internet qualification.

[Yennn in reply to Cooper27]

Hey thanks, I seen a nutrionist, naturopath in Napier in Glasgow west end, see jan de vries in Glasgow too

also see a bio chemist functional doctor in London, a herbalist in Edinburgh.

But I am open to suggestions, where is this nutrionist in Glasgow and how do u think she could help me regarding thyroid and failed acth test? Thank you

[Cooper27 in reply to Yennn]

If you've already seen a nutritionist, I don't know if mine would be able to recommend anything you haven't already looked into.

Three things I'd consider are: have you any family history of autoimmune disease, have you been tested for any other autoimmune diseases, and have you looked at any dietary issues?

[Yennn]

Yes had antibodies was normal too x

[greygoose in reply to Yennn]

Just one antibody test? Which one was it, TPO? You cannot rule out Hashi's on the basis of one negative test. Antibodies fluctuate, and it's even possible to have Hashi's without having raised antibodies. But, you would need a lot of testing of TSH/FT4/FT3 to catch the Hashi's swings, to prove it.

[Yennn in reply to greygoose]

TG 33.9 <115.00 AND TPO <9.0 <34.00

so far I have had three readings in one year

Nhs readings tsh 0.65 (0.35-5.00)

Ft4 13 (9-21) tt3 1.1 (0.9-2.5)

Then

Tsh 0.54 ft4 13.5

The above results were private labs with medichecks.

[FancyPants54]

I wouldn't worry too much about your progesterone level. You are young so you are having a cycle. At some points in the cycle progesterone levels will be very low and others high. Same with oestrogen. So blood tests won't be accurate unless taken on the right day of the month.

[SlowDragon Administrator]

What are your most recent vitamin results and ranges ?

Vitamin D, folate, ferritin and B12.

Your FT3 and FT4 are low in the range

Did you discuss Lyme disease at appointment?

Have you had ultrasound scan of thyroid?

[Nicant]

Hi there. I had the same problem. Nothing really helped but I celery juiced religiously, as well as taking supplements and the implementation of the ‘medical medium’ protocol. Aka as Anthony Williams. It literally saved me and my health really improved. The mineral salts in celery juice cannot be found anywhere else and is healing for so many illnesses, including such things as lupus and ms. If interested, you juice a whole bunch (16 oz) of celery juice on an empty stomach each morning. Don’t consume anything else for 15 mins to a half hour afterwards. If you don’t like the taste, add an apple and then gradually decrease apple until you’re drinking celery juice alone. Really helped me 2 friends with hypothyroidism and another with fibromyalgia. His books are great but you’ll also find info online. Hope you feel better soon x x x