Hi finally got diagnosed with hypopituitarism put on 20mg hydrocortisone and 50 micrograms levothyroxine,I feel fatigued all the time,cold intolerace big time, no sex drive, feel generally lousy, now hands have started going numb,got a phone call with consultant 29th DEC but all I every get is we will have to do more blood tests any help would be greatly appreciated
Thxs
This link may be helpful and am sorry you don't feel well at present:
hormone.org/diseases-and-co...
When we are diagnosed with a condition that we've never heard of before, it does come as a surprise.
Any member who has knowledge of this condition will also respond when they read your post.
We always need to start on levothyroxine slowly........but this is especially true of anyone who has low adrenal output
Suddenly increasing metabolism with levothyroxine can make adrenal levels worse
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Which brand of levothyroxine are you currently taking
What vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
Hi taking accord levothyroxine, taking vitamin d that's off my own backThere were taking 13 checks on last bloods about 2 months ago, slowly gone downhill, last month, tablets don't even seem seem to do anything anymore,taking levothyroxine when I get up then 10mg hydrocortisone an hour later then 10mg about 3oclock pm
Thxs for your help
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,
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
Come back with new post once you get results
Likely to need further doses increases in levothyroxine
I'm sorry you've been diagnosed with Hypopituitarism, are you just deficient in ACTH or are you low on other hormones? ACTH is the hormone that stiulates the adrenal glands to produce cortisol. You'll need to educate yourself as much as you can about the condition as many doctors are not very aware of it. Have a look on the Pituitary Foundation website & also The Addison's Disease website too, both have lots of information on their website . If you are on Facebook then join the UK Addison's & AI info & support group, you will get lots of support from people who are on steroids. I see that you have been prescribed 20 mgs of Hydrocortisone, it's best to split you dose into at least 3 doses rather than 2 so that you get better cover. HC (Hydrocortisone) only lasts between 4-6 hours i the body, so by taking your last dose at 3pm means you are going a very long time without any cover. Your first dose should be the biggest dose top mimic the usual cortisol cycle. You should also take it 30 mins to an hour BEFORE you get up, as cortisol is at it's highest first thing in the morning. So take 10mgs around 7am, then 5mgs at lunchtime & then 5mgs at teatime, this will help you to feel better. Have you been given an emergency injection kit of Hydrocortisone, if not you need one in case of accident or illness. Do you know the sick days rules about increasing your HC when you have a temperature or are on antibiotics? Have you got a medical alert bracelet stating that you are steroid dependent? I also have hypopituitarism due to removal of a pituitary tumour, so am happy to help if I can.
Hi PaulineLow on thyroid plus adrenal and testerorone, Consultant said he was going to up certain doses like levothyroxine, And start on testerorone injections but nothing has happened for last two months due to pandemic I think
Just feel so fatigued this is completely effecting my life
Know about sick day rules but haven't got emergency kit even after contacting doctors said to talk to consultant about one
Thxs for help
Don't be afraid of taking a bit extra HC if you feel low in cortisol, you can't overdose on HC. The id band company do some good medical alert bracelets, I use the silicone ones which can have wording on them, they are easy to wear. Which hospital are you under? Not all of the Endo's are "up" on secondary adrenal insufficiency as they are more used to dealing with diabetes. You also need to make sure you have at least 2-3 months extra of Hydrocortisone so you have plenty to take extra when you need to.
Hi PaulineHow long did it take to get meds right
Do you every feel right again with hypopituitarism
Been feeling so fatigued lately and so cold
Thxs
It can take some time to get the right dose of HC & the best times to take it. Personally I found that I do far better by taking smaller doses but more frequently as I metabolise HC quickly. I feel that if you stay within the amount prescribed by your Endo then its worth working out what suits you best, it took some time & confidence to work out what worked for me. The Endo's go by the textbook, however we are not all textbooks - we are the ones who live with it. The Pituitary Foundation is another good source of help & advice. You will work out what your low cortisol symptoms are & when you need to take a bit extra.
Thank you Pauline I really appreciate your help
Out of curiousity, what made you suspect you had hypopituitarism? Was it your symptoms or do you just have a good doctor?
Symptoms, Dr was brilliant she thought it was due to adrenal glands and thyroid
Please help!!
Please help 
Help/ support please
Please help!
Help please
