Hypo/cortisol IGNORED NEW MUM!

[KatieTattie]

I am really really hoping to have one of you experts give me constructive guidance.

I have posted a few times about my issue and have not had any real help this is my last attempt.

I have been ill for 7 years on and off. My thyroid was overactive 0.08 now underactive highest TSH was 17.0 now 6.95. I do not have antibodies. I have low cortisol levels and stim test results showed no doubling and resulted in a rise to 560nmol/l (cut off point for addisons 550nmol/l).

I have symptoms of both hypo but more so adrenal insuffiency. I have had a what I believe 'crisis' where I collapsed was taken to A&E and put on IV and steroids. I made a good recovery and had 5 days of steroids and felt like me again. After this all symptoms returned.

I have stopped taking T4 as I cannot tolerate it, muscles pain, internal shaking, GI upsets etc.

So I went to see the NHS endo, what a complete waste of time that was.
I went armed with information and he completely ignored my test results, he said that a TSH of 6.95 was normal and I could complain if my TSH was 50-60?!! I told him I have stopped taking thyroxine due to feeling like I was going to die on it and he said 'thats ok'?!! I still feel horrendous! He said that my low cortisol results 'don't mean anything, cortisol results are useless and meaningless'.

He ignored all of my symptoms and my results. I explained that I wanted to be trialed on a different medication for the thyroid and to have a trial of adrenal replacement. He said no.

So I am now left unable to cope with my baby. I am shaking, dizzy, GI pains, nausea, terrible pressure behind my eyes. Seriously if it wasn't for my baby I would do away with myself.

CAN I PLEASE ASK AN EXPERT!! WHAT DO I DO ABOUT THIS? I don't know how the Drs that have not helped me can live with themselves. I am so tired and weak part of me feels like giving up but then the old part of me is saying 'make them pay'. Drs have a moral duty to the public, god forbid this happens to one of their daughters! (I'm sure they would be treated straight away)

Should I start buying/finding drugs that are not issued by a Dr and self medicate? I am truly being left with no option as I am not being treated for my illness.
Will they be held responsible if something happens to me or my baby because I collapse or something? I am aware that legal action is useless due to the monster that is the NHS so I am seriously considering going to the papers.

Please understand my frustration and anger, they is not aimed at you. I am desperate. Please help!

[lindcal]

katietattie i no how you feel, i,m in the same position, for the last 10yrs !!
if u need some support, feel free to contact me, only just started on here,so not sure if or how you can PM me.
reading your post was like reading about myself, for the last 3yrs i've been almost housebound and been researching this illness for 5/6 .

[KatieTattie]

Hi Lindcal, I'm so sorry to hear that you are in the same situation as myself. Are you on Thyroid UK? I can't figure out how to do PM's on this site but I have the same user name on Thyroid UK so we could talk on there? I would be really interested to hear your story, maybe we will be able to help each other out? share labs etc? And figure out our s****y health problems out!

Katie x

[lindcal]

Hi katie,
yes would be good to chat to someone who understands, not on thyroid uk but i will join today with same user name, but you will have to bare with me as i,m vy slow at typing and have bad eye symptoms.
and i've got to tell you your post moved me to tears.
lindcal x

[Dr David Kerbel]

Hi there
I am sorry you appear to be having such a rough time.
Your situation is complex - probably beyond my ability to comment on this forum.
I would suggest starting again by checking our TFTs.

Postpartum thyroiditis is common & temporary - generally settles in 3 months.
This would account for negative antibodies.
This doesnt probably need treatment (but may lead to confusion in diagnosis).

I would probably go back to your GP & monitor your TFTs