where would I begin?
I'm laid in bed once again feeling absolutely shocking. My results - posted on here recently - are 'normal'. My GP agreed to let me try an increase of levo anyway to 175ng. This was over a couple of weeks ago but I still feel dreadful.
I am seriously considering trying another way of medicating - NDT or T3. I don't know where to start though.
If anyone can help, I would really appreciate it.
Did you do the saliva adrenal test?
I'm doing it today - I got it last week but needed to be able to do the 4pm one. Can that make you feel more hypo?
Adrenals and thyroid work together so adrenals need to be good. If not any problem should be addressed.
You won't feel the full effect of your increased dose of Levo yet, it can take 6 weeks to be fully effective.
So I need to be patient. It's teally hard when I feel like I've got nowhere in the past two years. I'm just going steadily downhill with no respite.
I did however have a decade of monumental stress - my daughter had cancer then I became unwell. I've lost my career and I'm struggling with my new job. A whole heap of worry certainly doesn't help. It's catch 22 - I worry causing stress and illness; I'm ill causing me to miss work leading to stress. It's relentless.
Yes, patience is key, unfortunately. Whenever I have a dose change I seem to need 8 weeks for things to stabilise.
All that stress will very likely have affected your adrenals. When I first did the test my cortisol was at the top of the range all day, my practioner said stress would cause this. I am the least stressy person so I couldn't understand it but apparently poor sleep is a cause of stress and mine was (and still is) poor.
Thank you. I'll see what the cortisol tests show and go from there. I'm in a minefield of reading everything and I keep seeing people saying you'll never be well on levothyroxine. I never know what to do for the best! Thanks again.
People are very cruel to say thing like that! Just because it doesn't suit them, doesn't mean that it doesn't suit anyone. They should think more about the effects that statement has on other people.
The best thing to do is give it time, I'm afraid.
I agree it’s mean to say that and I don’t think it is true. Some people do very well on levothyroxine - some people don’t - have an American friend who stopped NDT and went back onto thyroxine because it suited her better. My sister in law has taken thyroxine for over forty years and is slim as a rake abe very fit and active. I was terrified that the thyroxine I was given when I was being treated for my Graves wouldn’t work. It did, I know it’s not the same as for you but I was very worried and it wasn’t necessary, it just took time and it took time every time I had my dose increased. So I know with everything you’ve got on your plate - and boy you’ve got a lot on your plate! - it’s a ridiculous thing to say but try to relax, be kind to yourself and give yourself time.
Like I’m always saying on here - your results might be normal for your doctor’s receptionist or for her dog or her granny but it sounds like they might not be optimal for you. Good luck and hope things improve for you soon.
Thank you. I need to work on patience. It feels like a long time already, but in fairness I have faffed around with sort-of gluten free and sort-of supplements; I've only recently adjusted everything properly. Hopefully I will see change soon. Thanks again!
I would definitely recommend going totally gluten free if you have any sort of autoimmune condition. I did it about three years ago and in that time I have watched my thyroid antibodies plummet. Join Coeliac UK and get their handbook plus you have access to their online site and a magazine. You have to be totally gluten free or it isn’t worth doing it but I think it’s worth the effort and once you get in the swing of it it isn’t difficult or expensive. I found having a quick snack to be the most difficult but in an emergency a pack of precookedchicken or unsalted nuts used to do for me.
I've been back on it 100% for about a month now and plan to stay that way. Suspect lapsing over Christmas is what's made me decline so fast.
Millions appear to be well on levothyroxine but few will be on this forum. Usually, it is those who are trying to recover their health, like you, or are not improving so would like advice or the newly diagnosed who want to know more and maybe not getting support from doctors or endocrinologists.
Which saliva test are you doing? The 4 x samples don't have a 4pm one.
Medichecks:
Waking
12pm
4pm
Bedtime
Oh that's a shame. If you had used Regenerus or Genova Diagnostics then you would have DHEA measured as well as cortisol for the full picture.
I'll see what comes back and possibly look at getting the DHEA one too.
Its a long hard road,but we are travelling it together,thanks to this forum.I started looking in to self-medicating in 2011,in the middle of a 2 year mental breakdown.I'd been on thyroxine since 1997.Thank goodness for the internet & Thyroid UK,though the brain fog made it a mammoth task.
Scroll forward through thyroxine with T3;T3-only;another breakdown(depression with acute daily anxiety)Now on NDT.All done through self-medication apart from some NHS T3 which was withdrawn.
I no longer rely on the NHS for knowledge or help,when it comes to hypothyroid disease.
It feels so overwhelming,especially when stressed & not optimally medicated.
With the help of this forum of fellow-travellers,what seems impossible now, can be done.I still have days when it feels too much,but then I have days like today,when I can see how far I've come,which gives me hope.
I wish you well on your journey.
Thank you for replying. I'm going to do my cortisol test, give my increase a chance then have a serious review around summertime and see where I am. I am certainly being far more proactive in sorting myself out now, which will be for the good.
I'm so pleased to read things are improving for you.
I was in a similar situation. The starting point for self medicating is to read the forum regularly! I was too sick to research and study myself, so I just kept reading the forum over and over until they sunk in.
Make up your mind whether you want to add some T3 to your prescription Levo, or go for NDT. I think adding T3 is the simplest option, and I like to be systematic - start on the simplest thing. If it doesn't go well, you can try NDT or T3-only.
Although I agree with others that the absolute simplest thing is to do well on Levo. The largest number of people do do well on it. Get your dose optimised, get your vitamins optimised, get adrenals under control, and then see how you feel. Hopefully you will be a lot better, and not need to look into self medicating.
Thank you for this - it's really helpful.
Partially Self-medicating?
Am I over self-medicating?
Self medicating hydrocortisone
Self-medicating with hydrocortisone 
