SlowDragonAdministrator5 years ago

It’s over 4 months since you started on 25mcg levothyroxine

Have you had blood retested recently

You may need dose increase

Testing TSH, FT4 and FT3

Essential to test vitamin D, folate, ferritin and B12 too

All thyroid tests should ideally be as early as possible in morning and fasting and don’t take any Levo in the 24 hours prior to test (delay and take straight after)

If under medicated (and 25.mcg is tiny dose) then adrenals can be over compensating for lack of thyroid hormones through the day

riariariaria in reply to SlowDragon5 years ago

Thanks for this, I will bear that in mind. I last had my thyroid levels checked on 18 September. TSH, FT4 and FT3 were all in range. However, I am now very symptomatic. I need my levels checked again but I can't get in to even see my GP for two weeks!

Reply (0)Report

SlowDragonAdministrator in reply to riariariaria5 years ago

Perhaps ring surgery and ask if possible to have blood test form to get Thyroid levels bloods tested first

Or test privately

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Reply (2)Report

Hidden5 years ago

What symptoms are you experiencing? With Cushing's you will have rapid weight gain, especially on your tummy, insomnia, possibly stretch marks, acne, high blood pressure,hair loss. With Addisons/adrenal insufficiency you may be sleeping a lot, weight loss, low blood pressure, both will give fatigue. it is possible to have cyclical Cushing's but you don't usually cycle within a day. I have had Cushing's & now have adrenal insufficiency so understand both conditions. It would be worth showing these results to your GP & ask him to do an early morning blood cortisol test to see what that shows. (between 8-9am). If they are outside of normal range - they should be around 500 nmol/Ls at that time of day. The results form will state that the reference range is between 180-600nmol/Ls however that reference range is for the whole day, cortisol is high first thing in the morning but drops throughout the day. If you need a referral to an Endo then you need to find one who is conversant in pituitary/adrenal issues. The Pituitary Foundation will be able to tell you which one to go to.

riariariaria in reply to Hidden5 years ago

Thank you! I am probably going to pay to see someone privately because I'm tired of being fobbed off by my GP. I don't think I can have cushings or Addison's because the results don't make sense for those conditions. The results do make sense for my symptoms - I find it extremely difficult to wake up every morning. I am fatigued all day, I experience various aches and pains (I have been diagnosed with fibromyalgia and am waiting for an investigation into possible endometriosis). The fatigue is extreme to the point where I can't keep my eyes open. Then bedtime - wide awake and sometimes wired and quite anxious. I am tense all the time. I just think something is so off with my endocrine system. Thanks for the information

Reply (0)Report

Swanagegirl in reply to riariariaria5 years ago

Sounds like could be Addison's - There are 3 of us with Addison's here.

Addison's is linked with Hashimoto's, pernicious anaemia, coeliac disease & Type One Diabetes - We have all of them.

Salvia tests are not accepted by doctors as being accurate. You need a 9am cortisol test as first port of call which can be done at home with Medichecks - happy to chat once you have your 9am cortisol text done - also get sodium & potassium checked.

Worth buying blood sugar monitor & checking your blood sugar with washed hands - particularly when you say you are wired & anxious as you could be hypo - Low cortisol causes low blood glucose levels.

Reply (0)Report

riariariaria in reply to Swanagegirl5 years ago

Thanks so much for all the info. There is so little information about Addison's on the internet. I highly doubt I have it because my bedtime cortisol is so high, but I will do the blood test.

Weirdly I have been wondering along diabetes lines lately, purely because of how dreadful I've been feeling. I do have thyroid antibodies and am hypothyroid and although I tested negative for coeliac, I definitely have a gluten issue and have cut it out of my diet. Thanks again.

Reply (0)Report

Swanagegirl in reply to riariariaria5 years ago

If you are on Facebook there are are lots of great addison groups. I would recommend you join the UK one as they will talk you through the testing process. Endocrinologists are sadly really rubbish at diagnosing unless you are at the point of dying. And even then they miss it - people do die still from lack of diagnosis.

As I said salvia tests are not accurate - only guidance - they are not looking looking at cortisol circulating in the blood which is what you need. NB you must do test at 9am NO other time of day at this point. you also must be in a Zen like state when you do the test otherwise you will spike your own cortisol up to an untrue level facebook.com/groups/1759489...

Do you crave salt at all or salty foods ?

Reply (0)Report

riariariaria in reply to Swanagegirl5 years ago

Yeah that's what worries me, I'll literally have to roll out of bed and get the test done immediately. When you order on Medichecks I can't see the booking process for someone to come to your home - have you done this at all? Yes I've always craved salty foods. My bf looks in disgust at me adding salt to everything.

Reply (0)Report

Swanagegirl in reply to riariariaria5 years ago

Hmmm salty food cravings is a sign of Addison's - however don't stop the salt - but bear in mind that your results may be screwed (i.e. the sodium levels).

Nausea ? Headaches ? feeling off your head ? like jet lag ?

Pains aches ?

With the tests from medicheck most of them you can do at home which involved stabbing your finger & dripping blood into tiny test tube. Results super quick. Filling test tube is easier with someone to help you.

Reply (0)Report

riariariaria in reply to Swanagegirl5 years ago

I've tried doing the finger prick tests and only managed to squeeze out about a ml of blood. That's a sure way to stress myself out. I'll have to have a phlebotomist come over. Yes I have a lot of nausea, a lot of what I call brain fog - like a fuzzy head full of cotton wool. I have been getting lots of headaches lately. I have various aches and pains which have been put down to fibromyalgia and severe abdomen pain (hence endometriosis investigations). I've requested to join an Addison's FB group - thank you!

Reply (0)Report

riariariaria in reply to riariariaria5 years ago

By the way I also have vitiligo - I've just read that it can be related.

Reply (0)Report

Pam20174 years ago

Where did you get your tests done as I have probs aswell

humanbean in reply to Pam20174 years ago

I don't know who the OP got tested with. But if I was getting a saliva cortisol test done this is the one I would use :

thyroiduk.org.uk/tuk/testin...

Reply (0)Report

Pam20174 years ago

Where did you get these tests done and will a GP accept them

SeasideSusieAdministrator in reply to Pam20174 years ago

Pam2017

Don't do the one that the OP has done, do the one linked to by Humanbean in the post just above yours (Regenerus), it is a better test as it tests both cortisol plus DHEA, and it has proper reference intervals rather than starting at zero for some samples.

Reply (0)Report

Pam20174 years ago

Thanks for update - soz where is Humanbean ..... don’t quite know what I’am looking for - is there a contact number

Is your thyriod and adrenal all sorted now - whondid you see

Pam20174 years ago

What test to I ask for please