Adrenal/ Thyroid issues :Advice needed please.

[KatieTattie]

I am a 29 year old woman who has been ill for approx 7 years.

After becoming extremely ill 2 months postpartum last year I was diagnosed with Sub-acute Thyroiditis with a TSH of 0.08. Was advised to wait and ‘ride it out’ which I did for 3 more months. I was still symptomatic and requested another TFT, this showed a TSH of 17.0. I have been on T4 25mg for 6 weeks and have not felt any better and muscular weakness/pain has become worse even with TSH improving to around the 6.0 mark.
My last Endocrinologist insisted that this was caused by a viral infection even though I do not recall feeling unwell around the time this began. I am certain that I have the same medical condition for the past 7 years as I had the exact same symptoms in the past.
I have visited A&E on many occasions with no success in relieving any symptoms, I was admitted to the medical assessment unit and my serum cortisol level was checked.
The consultant on duty stated that ‘I think we have finally found out what is wrong with you’ My AM cortisol level was 200 nmol/l. He stated that he would not expect that level in a young healthy woman at that time of day and suspected Addison’s disease.
He ordered the stimulation test the next day, the result showed that there was an increase but no doubling. I am aware that this means there is not a primary problem with the adrenal glands but Secondary Adrenal Insufficiency was not investigated and I was sent home still feeling very ill.
Subsequent tests have shown consistently low AM cortisol levels these being 200 nmol/l and most recent 154nmol.
ACTH level was tested and this showed a level of 11.6
I have not had any of the other adrenal hormone levels checked so Aldosterone, DHEA etc are unknown at present.

From the research I have done my coritsol levels are not normal for someone of my age and health, I want to know why I am not being treated? It seems that I have a problem regarding my adrenal function. In the states for example I would have been treated!

I even found on the cks NHS website that 'if cortisol is below 200nmol/l Addisons/Adrenal insufficiency is strongly suspected'

I am at present bedridden, I cannot look after my baby. I need help and advice as to what to do. I feel like I am being left to slowly die, this is not only life but my entire families life on the line here.

What do I do? I'd like some constructive advice please.

Many Thanks

[Professor John Lazarus]

You are probably on too low a dose of thyroxine. Hypothyroidism can be associated with adrenal impairment which corrects itself when the T4 replacement is adequate.
Increase the T4 dose and recheck thyroid function in 1 month

[KatieTattie]

Thank you for your advice, ever since I have been on T4 I have felt worse. If I increase my dose I feel like I'm dying. Can I ask you do you think i have an adrenal problem? It seems dangerous for me to not be treated if so. I have heard from many people that if the adrenals are not treated that thyroid treatment is pointless. Is it also true that T4 lowers cortisol further? I can not increase my dose as I feel so unwell when I do. What should I do? Also I would like to know what the motivation could be for my low cortisol levels being ignored?

[Steve-H]

You are probably on too low a dose of thyroxine. Hypothyroidism can be associated with adrenal impairment which corrects itself when the T4 replacement is adequate.
Increase the T4 dose and recheck thyroid function in 1 month

Could you please prove this with a case study, or medical studies ?

I am led to believe that adrenal impairment will only improve itself if the T4 is actually being converted to the active hormone T3 as T4 is non biological. But people with adrenal impairment may struggle to convert T4 into T3 due to the actual impairment.

Steve

[KatieTattie]

I would also like to know this please? I have already had this suggested by my endo and it hasn't worked. I was asking about my low cortisol levels and what should be done about them. Being on T4 has not helped and has made the levels decrease. I am concerned at some point I may go into 'crisis' as the level is already so low. What do I have to do to get help? I've already sat in A&E many times for hours to be told 'see your GP' then to be told by GP 'see your endo' which I'm sure everyone on here know takes MONTHS. So I'm just sat in pain, not functioning and by baby boy suffering as well.
I came on here for advice as the treatment I am on is making me feel worse. Is that not what this site is for? I don't want an argument as to the structure or care in the NHS. I just want pro active help.

[KatieTattie]

Any feedback?

I decided to stop taking T4 yesterday and my muscle pains have eased considerably. What's your opinion on this professor? Do I need T3 rather than T4? Can I not tolerate T4? I have an appointment with an endo on Monday after kicking screaming on the phone yesterday and want to know what to ask and request. You could really change mine and my families lives if you give me something to go on.

If they won't change my medication I'll have no choice but to not take anything. Will this do me any harm? If my TSH remains high is there an increased risk of heart problems/ Is this a good enough reason to switch me onto something else as it can be made available to me?

Whats your opinion on a low dose HC trial? Due to the trials of low dose given to CFS patients who had no adverse effects from this and no disruption in the HPA Axis feedback?

Please respond.