Any advice for when i go and see the endo on tuesday

I am back at the endo on tue afternoon, Like lots of other people i struggle on a daily basis, I take levothyroxine 125 mcg, hydrocortisone, ddavp, growth hormone injection every day. By the way my pituitary gland doesnt work so therefore neither does my thyroid. A few months ago i was started on colecalciferol too. Does anyone know of anything else i should be taking, just so i can go in armed with info. I am always tired, struggling to keep my eyes open most of the time, Pretty much the same of lots of people on here, Any help would be appreciated June xx

10 Replies

  • Hi I cannot help a lot. However, have you had the tests for Pituitary gland.,or are you going by TSH.? My TSH is immeasurable so low. It does go with Pituitary but had mine tested lots of times and OK.I need T4 and T3 based on T4 and FT3 tests, I assume you have had all these vital tests?? I actually cannot take Levo so have armour and T3 as FT3 would be so low and I ,like lots of people need it very high in range.Always have your test for thyroid before taking Beta Blockers and thyroid drugs, of any sort.Otherwise a false result.

    I am see you are seeing an Endo, but are they any good?? Some,like people useless. If not happy have a new referral after your own careful research. Make sure you have been tested for B12+ Foliates, Vit D ( if low calcium for corrected calcium, before any treatment) ,diabetes and iron/ferritin. All , these are hormonal and some autoimmune so, go with thyroid disease often.there are other useful tests too but these a start.

    Make a list for yourself before you go.

    I hope this gives you a few ideas, I do not want to suggest anything that is outside my exact knowledge.

    Best wishes,


  • Should i take my levo early in the morning as my appointment is at 2.30pm. Thanks for advice i will mention all these tests you have said, June xx

  • Hi Tricky but I definitely would not, take it late, perfectly OK to do this. Above all you do not want a false result.

    Good luck!


  • Have you had any tests for the adrenal glands? NHS will give a standard cortisol test which may or may not show anything at all. Do a 7day temperature chart --- the 1st two taken before rising, 1st under the arm 2nd by mouth, (these are for the thyroid) the remaining 3 are for the adrenals lunch time, tea time (5-6pm ish) before bed (9- 10 ish). What you are looking for are the fluctuations in temperature.

    If you go into Dr Wilson's page on google you will find his book Adrenal Fatigue the 21st Century Syndrome. IN it are many tests including The Raglan Test & eye sensitivity test and the questionnaire. These cost nothing and will let you know how your adrenals are doing. If you are on thyroid meds your adrenals MUST be firing on cylinders and continue to be supported during thyroid treatment. If you are still not convinced then a saliva test will confirm one way or the other but this will have to be privately. Be warned NHS most likely will not accept it as in my case but that might depend on where you live.

    Saints, I hope this has been helpful.

    Best wishes Storm

  • Hi saints. How much hydrocortisone are you daily and how many times do you spread this daily ?, obviously you have had insulin tolerance test and the ACTH test for endo to give you hydrocortisone because you are not producing enough cortisol, how long have you been on this and has he done a re test to see if amount is correct. also I wonder if you have had an MRI scan on your piturity to see if any problems there, I had all these tests but only after a lot of pushing and crying as I felt so unwell for such a long time, I also take 125 of levo but endo has now agreed that with all my issues, the TSH test is pretty useless as not converting into cells and will now treat by symptonsI am having another insulin tolerance test as 'nice' guidline' is abnormal cut off at 3 and mine is 3.3 so still trying to get this red listed drug, Your condition is Hypopituritism which my endo says can take about a year of altering meds to get all deficient hormones in sync, so just wondered how long since your diagnosis ? I am 4 months in and feel a bit better on the hydrocortisone which i take a 25mg spread into 3 doses a day and have put my levo up to 150mg to see how I feel on higher dose (my TSH result is at suppressed at 0.01) but if thyroid is not working your dose seems a little low, just out of curiosity if you have had a MRI scan did it show empty sellar syndrome, they usually do this scan as looking for piturity tumour which normally is a cause of hypopituritism, my dad did have tumour but on mine it just showed empty piturity sellar, I do sometimes worry as my mum had a brain heamorrage at 59 and I am 56 and all my life have had bad migraines and lost my smell and taste 7 years ago at the same time as all these symptons begun but have had hashimotos for over 25 years. Keep us posted on your progress. Good luck

  • Thanks for the advice, Its over 20 years since i was diagnosed, Its thought a head injury when i was 9 caused the damage to my pituitary, 8 years ago i had a swelling on my pituitary and was very ill , in hospital for 4 weeks, was put down to inflamation/infection. I used to be on 150mcg levo but was reduced last year. Like yours mt TSH is 0.01. I havnt really had any tests apart from routine bloods for years,I have recently changed consultants as when i went to the old one i saw different people every time as it is a teaching hospital. The last time i went the junior dr went to see the main dr with the things i had said and he had already gone home so didnt see much point in going at all.I will ask next week if a scan is worth while as i havnt had one on my pituitary for years, Thanks again and i will repost on thursday when i have been . June xxx

  • There was a program, radio 4 a few weeks ago, describing exactly this. It is on the WEB, look at BBC. Radio 4, called "Inside Health".

    Also before the appointment, check the consultant will be there. When you check in and then to the nurse say that you want to see the consultant.


  • Thanks Jackie, I will have a look at the website now. Since changing my endo i now see same one every time, Only been twice but last time i went i had lost my dad a few weeks before so didnt really think straight to ask why i feel so rotten but will ask this time, will they give me a copy of my bloods if i ask, never thought to do this before, At least i will be able to see any changes for myself, June xx

  • So sorry for you loss, I remember long ago when my parents died. It takes a long while to get over it, So even more important to make yourself a list to take. I hope it all goes well Tuesday. best wishes,


  • Hi, have you always double dosed on your hydrocortisone when you are under a great deal of stress ? as the grief of losing your dad could have in impact on your adrenals if cortosone is low, have you been on this medication since you were 9. I really think its about time they did some re testing, good luck and let us know how you get on. Best wishes

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