I am mid forties now and I have had ME/CFS since my teens. 8 years ago I had deQuervains. My blood tests returned to normal but I have continued to suffer disabling sleepiness, and sleeping at unpredictable times of the day. This chaotic sleep changed more than a year ago to a 24hour plus day. That is, I go to bed later and later each day. It has resulted in me going ‘ round the clock ‘ once every 3 months and now twice in the last three months.
I call it a rollercoaster because when I get a virus it seems to kick the whole cycle off again, with overactive symptoms followed by underactive. But all with normal GP blood tests.
Now I have high blood pressure and I am prediabetic.
I saw two different endos privately some years ago but no treatment was offered.
Any thoughts please ?
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First step is to get FULL Thyroid and vitamin testing done
do you have recent blood test results?
if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Many thanks for your reply. I will need to go away and digest all that ! Bear with me as my energy levels are nonexistent.
I have certainly had GP blood test printouts previously, in order to see a private endo, and my results - the ones they did at least - were well within range.
Diet wise I have long had digestive problems which mean I basically exist on plain yoghurt with fruit , as I find I can eat very little meat. Plus brown bread but not much veg.
Re the initial diagnosis, again that was done by a private endo including antibody test ( from memory ) and I went over those test results and satisfied myself that the deQuervains diagnosis was correct. Interestingly, a different private endo I saw perhaps four years in , did no blood tests. I have asked for the list of thyroid specialists. Can you explain to me about the blood tests… would the endo do these for me ? Why go to these testing companies ?
A disturbed circadian pattern, blood glucose issues and high BP all point to adrenal issues. The adrenals can overly compensate to support other hormone deficiencies and elevations, and will have been severely stressed during your periods of De Quervian’s thyroiditis.
It's all very well getting a diagnosis but it can blinker future doctors assessments. No one knows why De Quervian's happens but some think those same reasons that may initiate Hashimotos.
Have you had cortisol levels tested either by conventional methods (blood serum or stim) or by using a saliva stress test? Have you since been tested for autoimmune thyroid disease?
The sleep issues sound like a circadian rhythm disorder, possibly non-24. I have been as bad as that in the past but it righted itself in the end. I do have depayed sleep phase disorder though, was seen in a sleep clinic and now take melatonin which has been nothing short of a miracle. I also use light 'glasses' within an hour of waking to stimulate my own melatonin. An Endo won't know how to help you with this.
Private blood tests are more comprehensive than what is on offer via the NHS, also likely cheaper than doing them via a private Endo. You really need to know where your FT3 is as well as key vitamins.
To establish a regular sleep cycle it’s advisable to always get up at the same time each day, no matter how tired you are or how much sleep you’ve had. Not easy to do I know. Get out in daylight early in the day, avoid bright lights in the evening before going to bed. If you have deficiency in vitamin D or magnesium, correcting these may help. 12 hour fast each night may help. Using blackout blinds also may be helpful. Obviously hormone imbalances play havoc with sleep cycles but the solution is often multi-factorial.
Before hypothyroidism diagnosis, I would fall asleep but wake after a short time. Then be unable to get back to sleep - sometimes not at all.
With levothyroxine, many years now, I usually fall asleep and sleep soundly right through.
My point is that this goes against what all too many believe - including many medics. The all-too-common idea that being hypothyroid means you sleep a lot. And levothyroxine will tend to stimulate you and wake you up.
Interesting. I put on weight when I have more energy, and lose weight when I am lethargic. This would also seem the wrong way round. It’s because my stomach seems to wake up with the rest of my body, and I get quite hungry, and then when I wind down again, so does my appetite.
- Should I have replied to individuals like this, instead of replying to the thread previously ? I’m new to social media so any tips would help. Thank you. -
THANKYOU. It sounds like non-24. My GP was baffled - so I refused her referral to a sleep clinic. I also expected only behavioural interventions. Unfortunately with my ME/CFS, getting up before I’ve had all my sleep would only make me more ill.
I’ve not had cortisol tests - would a one off blood test be sufficient or would I need to see the pattern throughout the day ? Is this the kind of thing sleep clinics look at ?
How would I time the blood tests if I am getting up at 3am ?
I also initially refused the sleep clinic referral as I had been spoken to so badly previously by GP's etc about sleep issues. They really don't have a clue. So thats when I ordered some melatonin and discovered the light 'glasses' and began treating myself which only took a few weeks to see results.
Then I decided I'd like to see what the sleep clinic had to offer. I was already under them anyway for sleep apnea and another sleep disorder. It was actually the sleep clinic who picked up on my circadian issue due to the data from my CPAP machine.
I was surprised at their attitude which was different to what I had experienced before. I would recommend getting referred if possible to one of the regional sleep centres which are larger and better staffed, more experienced than local district general hospitals. narcolepsy.org.uk/sites/nar...
If you go and they only offer behavioural interventions then just discharge yourself but they might surprise you.
You may have other sleep issues that you're not aware of such as sleep apnoea that are making the non-24 worse. They might offer an over night sleep study.
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