I sent a this earlier to the post and received some helpful feed back.
I was diagnosed with hypo three years ago, crohns 30 years ago and m.e. three years ago.
My main symptoms now are fatigue but not tiredness, weakness, feeling faint when i am walking, muscle weakness.
The worse symptom is very difficult to describe.. i have episodes where i seem to crash causing brain fog,nausea dry mouth and a feeling of being really ill where i feel like i am dying. When i am not having an episode i have the same symptoms on a lesser level i often feel like my organs are shutting down. The fatigue and weakness are not like when you have flu or a virus.
I am going to see Dr.P very soon but just wondered if anyone else felt like this and did they get a diagnosis.
My symptoms are not the same as before my thyroid diagnosis,,where tiredness and falling asleep was my main symptom.
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yorkshiregirl44
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You've kind of described me there. Turns out my main problem is adrenal issues. I suspect secondary hypothyroidism and secondary adrenal issues, possibly due to pituitary problems. I can't prove that and I'm not sure it's necessary to. I have seen Dr P.
Also check your kidney function.
I could sleep for England until I had the menopause. I would sleep for 10 hours at night and often for 2 or 3 hours in the day. That stopped suddenly 6 years ago when I totally collapsed for the first time. I was too ill to even sit up in bed, but I stopped sleeping. Now I sleep for 8 hours at night and never during the day.
No idea what changed. I'm still trying to work out what happened 6 years ago. I've told my doctor that I will work it out. At the time the doctor on duty that day refused to come and see me, so no tests were done.
Thanks for that its very interesting. Before i was diagnosed with hypo i could not stay awake and was kind of drowsy. This is not like that i am not taking naps as often and sometimes cant sleep. Energy is low but its different a kind of weakness. Like you i have gone through the menopause so maybe that explains the exsessive sleeping at that time. I have Hashimotos so do you know if its possible to have pituritary problems with that as i know its more likely with secondary hypthyroidism.
Yes. I've seen dr P twice. First in April and then again a couple of months ago in Sept. Shaws advice below sounds good too. Parathyroids are located on your thyroid (I think) but I don't know much about what they do. Maybe I need to find out.
Yes. I still have a long way to go, but to give you an idea: This time last year I was bed bound virtually, every inch of me was shaking. I'd almost lost my voice because I was too weak to talk and I couldn't breathe properly. For the last two weeks I have been spring cleaning in my kitchen. I'm laid up on the sofa, self inflicted, for over doing it on Friday, but I'm confident I'll be better again after a couple of day's rest.
Thats good to know. when your feeling so ill you think the worst and getting better seems impossible Im new to this so just finding my way about. i get a little confused with different conditions... i have looked at addisons and cushings before either though they are either ends of the spectrum. Is is possible to have pituitry problems without it being cushings. The reason i am asking is that when i sent this post before peituitry problems came back as a possibility
Is your Crohns under control ? Are you taking medication for it ? I too have Crohns and was diagnosed some 40 years ago after Ileo-caecal TB as well. As you probably know from reading this site that auto-immune illnesses rarely come alone ! Healing and calming the gut is so important for everyone but especially for us gals with Crohns and Hashimotos. Of course the above advice is excellent and should be adhered to - but with Crohns possibly being the root cause of the Hashi's then it is important to look at what we eat.
I should have read your other posts before I started to type - you probably are aware of the importance of gut health - so apologies ! Have you found the website if Izabella Wentz - she too has Hashimotos. Her Newsletters are informative as is her book. I'm sorry they think you have ME - I know over the years of struggling with my health I too was told I had FM ( As Dr P states in his book - its ME and CFS in the UK and FM in the States....) I think you probably know that many on this site feel that it is a metabolic condition caused by the Hypothyroidism....me included !
I realise you are in crisis at the moment and the comments I am making are of course more long-term . Just hope you soon feel better - it is all so confusing - but best to start at the beginning when you were diagnosed with the Crohns some 30 years ago and work forwards. If you have any questions I am more than happy to help.....
Hi and thanks for that. When i became ill with crohns i had a bowel resection and not put on meds. Mr. Lyndon was my consultant and amazing, he wanted to avoid putting me on steroids and i didnt need them. I Went on to have three normal pregnacies ad was very well. I agree that the M.E. was probably thyroid related. What is happening now i feel is very different and as ill as i was with crohns and a perferated bowel i didnt feel like this. Im going to see Dr. P. on tuesday so maybe i will get some answers.
I too have seen Dr P. Hope your appointment brings you the answers you are seeking - but at the end of the day we mostly have to do the work ourselves to get better. Have you seen the article on the Vitamin D Council website about Crohns and VitD - it is worth reading. .Also your levels of B12 Iron Ferritin and Folates may be faltering due to mal-absorption - and they really need to be near the top of their ranges. Have you gone gluten free ? Izabella Wentz has a great website and book - take a peep - The Root Cause of Hashimotos - a great read....
Sounds similar to the sort of symptoms I've had recently. I became so concerned that I had my adrenals and thyroid re-tested. It turns out that my adrenals are at rock-bottom - I produce about one-third of the amount of cortisol that I should. My TSH is up very slightly ( as you might expect with the adrenals clapped-out), but my thyroid is otherwise OK. Whilst I was diagnosed with adrenal fatigue a couple of years ago, the test results were nothing like as bad as the most recent one. I was very very poorly with a virus about 5 months ago and I also had treatment with steroids (prednisolone) a couple of months ago. I'm guessing that either or both of these are responsible - the illness perhaps for over-taxing my adrenals and the steroids for suppressing them. I'm seeing Dr P soon. He will be able to check your adrenals in his surgery.
Hi, Iv had a 24 hour urine cortisol test which came back at 34, reference range 10-175, while it was at the lower end of that range i believe my cortisol levels dip when i am having a crash. My GP wont let me have the saliva test. How did you get steroids with an adrenal fatigue diagnosis?
During the virus which made me very poorly I lost half the sight (permanently) in one eye. The eye specialist admitted that it was experimental but he felt that there was a small chance that steroids might help (they didn't). I was so devastated by this partial loss of sight that I agreed to try them although I did query the possibility of adrenal suppression. He thought it unlikely, ditto my GP, but I've read since that 3 weeks on an average of 15mg prednisolone could suppress things. (Prednisolone is about 4 times more powerful than cortisone). However the suppressed adrenals can be dealt with, and that's what I'm exploring now.
I lost my hearing in one ear years ago with no medical explanation maybe could be related to autoimmune diseases i dont know. You sound like you have to fight for where you are today..thats what im getting from this site that we really do have to persue every avenue.
I have been recently diagnosed hypo, and the gp put me on 50mg levo, i feel horrible on this , and also still feel very tired and no energy but everything aches and my blood feels like its racing through me giving me the shakes,,
However I have too experiences the feeling like one is dying and everything is shutting down its really quite unpleasant, but one does keep falling asleep and sometimes in the middle of a conversation,
I just dont like this rushy feeling now im on 50 mg levo and i really wish my thyroid hadnt done this,,so i empathise
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