I don't think I know what to do anymore. I feel like in some way I have messed up my treatment plan but I am trying my best not to blame myself as I know that’s not healthy and circumstances are really difficult for me at the moment. I have been ill at this level for a long time and I am struggling to get through the basic daily routine so diaries and self monitoring have not been completed for some time which is frustrating as they are useful to reflect on though I am still managing temp and pulse. I have been wanting to post for a while but it always takes forever for me to get the words down and I always end up suffering afterwards and then can't reply. However needs must today as I could do with some support if anyone keeps reading. If you do, thank you.
I don’t want this to be a long post but feel it may be as I’m not sure what else to do today as I’m feeling quite frustrated and, well I guess sad about things for whatever reason. I was already taking 4 nutri adrenals when I first saw Dr P in Dec who said I needed to build up my exhausted adrenals and then introduce T3 for my damaged thyroid. He said we weren’t to mess around any longer with little tablets as I had been left untreated for so long and have become so ill. I managed to build up the nutri adrenals to 11 a day and then tried to introduce a little T3. At the very same time my mum (who had been helping me out) had a heart attack so reflecting back I think I had found it quite hard to make an accurate judgement on the true effects of the T3 and am now wondering if I just panicked as just too much was going on. A couple of weeks later I stopped the nutri adrenal as felt I was getting a bit toxic with tablets as had increased severity of symptoms. I spoke to Dr P a few wks afterwards but when I did speak to him I was having a particularly bad day, was very unwell struggled to talk and pretty much confused by everything and just stared blankly at the diary sheets in front of me not making any sense of anything. Although shocked I wasn’t taking anything, he was the true gentleman and said it was understandable I would be worried by certain symptoms and even more so now that my mum has had a heart attack. It was decided Hydrocortisone cream or CT3 method as next thing to try for a few wks though it was me who suggested ct3 and he wasn’t entirely against it just unsure if my adrenals could handle it.
Everything was then delayed even more as more stressors came my way which I will spare you the details of but in the end I eventually managed to get some hydrocortisone cream. I only took it for 3 days and each day my average daily temp dropped ( I’m using Dr Rinds temp chart) and at one point I ended up shaking and shivering so much I struggled to speak. No stress there then for me or my exhausted adrenals! Follow that with horrific pains in left arm and chest pain and eventually a trip to A&E. Hey ho! Given all clear in A&E, offered pain killers and suggested my GP send me to a neurologist to be checked as often people with M.E need to see neurologist! Not treating the cause then but he was a nice Dr and did listen and chat with me about my thyroid and the fact that it was a shame I was having to pay for treatment and that an NHS endocrinologist had not been able to help and look ‘outside the box’ as such, especially as I have a lot of the awful symptoms that we endure.
Anyway surprisingly I have not used any hydrocortisone cream since and I’m wondering what next? Do I try cream again or cortef or CT3? Has anyone been in a similar position? Do I try the NA again? My body just seems to refuse things at the moment although I feel it’s crying out for something………probably T3. I know I have high RT3 and in one respect think just try a tiny bit of T3 again but don’t want to tank my adrenals any further so I have stayed away. I hate not doing anything though. As I had a few wks without any adrenal support I did the ASI again just so I could see where things are exactly at.
I have a phone consultation booked with Dr P but that’s not for a few wks and I am still waiting to hear back from a letter I wrote him asking several questions. I really like Dr P and have the utmost respect for him but naturally because he is in such demand and so busy I do feel quite isolated knowing it can be a few wks before things can be discussed and am wondering if this is the right thing for me. I’m trying to read and learn as much as I can but it’s hard as my brain just won’t function like it used to. I’m so tired of being ill but determined to get better as I want my life back but am conscious of recent anxiety levels and the fact that I am housebound and have been for too long and the affect this is having on my overall wellbeing. I have to move for a number of reasons including financial and relationship problems which are becoming quite stressful but I can’t even begin to think about that one but need to if that makes sense.
Gosh this really is a rambling post and I'm not even sure if it makes sense. To anyone who has stayed until the end sorry but thank you. I guess I just needed to ramble it off my chest!
Pink lily x
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I feel so sorry for you today. I'm sorry I don't have any answers for you re HC cream/cortef or your medication, it gets so complcated doesn't it. I hope someone comes on that can offer some advice.
Oooh, you poor thing. That's a lot to be coping with and obviously puts huge stress on the body.
I gave up on Nutri Adrenal due to side effects and instead took Isocort alongside T3. Tried the CT3M but ended up being exhausted setting the alarm for the first dose then not being able to get back to sleep. Figured I would be better off taking it when I woke up anytime from 4.00 am onwards.
Have your adrenals been tested? Some people just don't get on with Nutri Adrenal and may be that means you too.
Also found that pretty much eliminating gluten and lactose has helped enormously although am not yet on the optimum dose of T3.
Food for thought anyway and hope you find the solution.
Yes I have had my adrenals tested with ASI test. In Sept last year I was at cyclic stage and just within daily cortisol range but new results from beginning of this month state exhaustion stage with cortisol just below range and DHEA low out of range.
I often wake from 4 onwards so was thinking of CT3m but don't fancy setting alarm any earlier as I don't sleep too great as it is. What state were your adrenals in? How do you take your T3 now? Are u taking anything for adrenals or bringing everything back in line with t3?
I eliminated wheat 5 months ago and most gluten but 2weeks ago completely eliminated it. Thinking of dairy next as I only have live bio yoghurt and cottage cheese.
It's encouraging to hear you are doing so well and I hope you reach your optimum soon
It is good to get things off your chest and by the fact of writing them down it puts things in a better perspective. I am really sorry you are suffering so much at present. It is difficult to cope with.
With a thyroid gland problem, it is a problem as the medical profession, in general, seem unable to help us. Particularly if you also have personal problems as well to cope with.
Dr P will get round to answering but, as you say, he is only one person trying to sort quite a few people out.
I, too, couldn't get on with Nutri but I now believe the real cause was the levothyroxine. In the end I began to improve when I went onto T3 and in a couple of weeks a bigger improvement. I have now gone on to a dessicated product and feel well.
I believe Nobodysdriving had reverse T3, so you could private message her as she may be at work at present and she may be able to give some advice. This is a link
I was certainly having a confused and fed up day when I wrote that post wasn't I but your right it did put it into perspective writing it down. So complex this thyroid business! I hope when I have more energy and less symptoms to be able to use healthunlocked more and that's not just to ask questions but also to try and support and help others
Dr P has written back and confused me that bit more! Lol! as now wants me to take only 4 NA and then start T3 with no mention of hyrdocortisone. Also told me not to worry about my serum iron results as it's the ferrritin that counts. I am hopefully seeing him on Sunday so will have a chance to ask him some questions in person.
And your right I have spent the last how many wks thinking how detrimental it is not taking any thyroid hormone but hard when adrenals need building up. Thanks for the suggestion to contact Nobodysdriving about reverse T3.
It's good to hear you are doing well and moving in the right direction
Thanks again
Pink lily
From what you write and the way you write, you sound depressed.
It is not surprising that you have gone for the 'practical solution to an emotional problem.'
Living with any chronic illness has, by the very nature of our wellbeing, has to have an impact on our bodies and the way it responds to it.
I know this as I suffer from mental illness, as well as hypothyroidism and have found that it is so important to recognise how our bodies and minds respond to the challenges placed upon it.
There is no shame in admitting that sometimes we need to change our treatment plan to include some sort of psychiatric support, whether that be writing it down, talking to someone or medication.
I would encourage you to go to your GP and explore these as an option and seek their opinion as, in my experience; I am in a much stronger position for recognising this is a part of my make up as well.
We are, after all held by many different people who meet our needs in many different ways.
Your physical illness is only a part of your whole being and perhaps, it is time to take care of the other parts as well, and you need someone or something else to help you do that.
It does seem as if you do need to change your treatment plan. You have already taken the steps to help your recovery by recognising the fact that you need additional help. More importantly in your recovery though, is the fact that you are able to ask. Try to be open to the changes you are experiencing and your recovery, although not instant, can be actioned
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