This happens to me almost everyday since more than 3 years now. After sleeping 4 hours, I will wake up and will not be able to go back to sleep and gradually my heart rate and oxygen will fall as you can see! Of course this will make me short of breath and exhausted to go to my work. Most symptoms will improve starting afternoon except the oxygen will not even reach 97-98 level. At night I go to sleep normal.
I got some improvement from Levothyroxine but still experience this issue. My doctor thinks I have secondary hypothyroid due to suppressed TSH from pituitary!
I have seen so many doctors non of them helped me! I hope some can advise me, at least what tests should I ask the doctors for?
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Ali1101
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Hi Leverette ... My T4/T3 are in normal range, when I increased T4 I didn't gain any benefits, I didn't try T3, I tried to import it from Greece but it didn't pass the customs!!
This may be just a wild guess but something maybe worth checking out? Have you had a sleep study done to ck for sleep apnea? Sleep apnea can be very dangerous and is notoriously overlooked. But is can be so easily and inexpensively corrected with a CPAP breathing machine.
good guess, I spent a year thinking this is my issue. slow heart rate, low oxygen and slow breathing = sleep apnea and also wake apnea .. yes I did sleep study where they found my oxygen goes as low as 84% and heart rate as low as 47 or 45 pbm ... however, this is not the cause of my symptoms but is a result from something else! may be a suppressed pituitary or another unknown issue in my endocrine system.
The sleep study didn't find you waking up multiple times during the night? If not, I guess that can be ruled out but it sure is a strange situation.
I was also going to mention high cortisol at night. That often wakes folks up at 2 - 3 am but I don't think it lowers oxygen or heart beat levels. So, don't think that is it either. This is a real head scratcher. Good luck.
Yes, they found me stop breathing around 15 times per hour but I don't have any obstruction, so this is a secondary sleep apnea where something else causes it.
High cortisol after sleep onset can be a strong possibility, my symptoms is clearly associated with cortisol (I feel well afternoons and nights as cortisol level starts to fall).
It is known that cortisol start rising 4 hours after sleep, this might give a negative feedback to pituitary and then affect my thyroid hence; heart rate and breathing ... to me this fits in all of my symptoms. But I don't know how to explain to my doctors! They don't like me to explain or teach them, but may be can suggest to them a test!
You might order your own 24 hour saliva cortisol test and see what is going on if your doctor won't order it. I've never had the problem so can't expand on it much but I do know that struggling adrenals can be a problem when we are trying to stabilize thyroid meds dosage.
Here is a link that includes some self-tests that can help you to know if this might be a problem?
I have taken it for 2 years or so now, 1/4 grain at 5pm. Any later or anymore keeps me awake but that amount & time stops the nightmares & the walking with a pounding heart & gasping for breath. I used to see Dr Skinner before he sadly died & he recommended it. I don't always sleep right through the night but definitely a much better night's sleep.
Yes my GP prescribes it. It was suggested by a consultant physician at my local hospital originally after my disastrous response to T4 only & I saw Dr Skinner for advice as my GP had not prescribed it before.
One more thing.... here in the states, we have doctors who are designated as 'internists' or Doctors of Internal Medicine. They are NOT family doctors or pediatricians. And they have a reputation of being excellent, expert diagnosticians. I don't know if you have their equal in the UK but maybe worth checking out?
I notice you say your thyroid results were in the normal range. Do you actually have the results ? Where they are in the range is important. Normal is an opinion and not a result as I have learned over the years
How do you know your thyroid readings or what ever results are I was just put on levothorxin now on 100mg can it be serious ? If so might explain a lot of symptoms ,as I have ckd & heart failure with really painful artheritist/ osteoartirits also anemic Question is if anyone has the patience with me want to know about thyroid .
You are entitled to have copies of ALL your blood test results. This is laid down as law - Data Protection. It is after all your own blood ! When you have copies you can post here in a new post - with the ranges - and then people can guide in a more positive way. You need to know if the Levo is converting into the ACTIVE T3.
So next time you are at the surgery ask them to print out your results - there may be a small charge for printing. You need to know what sort of anaemia you have - so ensure you have Folate - Ferritin - B12 - VitD are tested. They all need to be OPTIMAL rather than just in range for the Levo to work properly and for you to feel well.
Ask if you have been tested for FT4 - FT3 - Anti-TPO - Anti-TG - ( the last two are thyroid anti-bodies ) - and the following - Ferritin - Folate - B12 - VitD - Iron. If not then politely insist they test you asap. If not - are you able to go privately through Thyroid UK with a discount ?
Hi.......saw my GP yesterday & asked about my thyroid results & could I have a read out , she said I was fine right in the centre ?? When I asked why I'm on thyroxine ...was told that's why it's OK still none the wiser ,what does it mean right in the middle, so many other issues dident want to press her,hopefully the Kidney specialist & cardiologist will be more i formative . Once again thanks for replying have a good day all.
OK Peggy - what was in the middle ? I gave you all the details of what should have been tested in my detailed post above. Did you make a note of them and take them with you ?
Your GP probably only tested the TSH which if in the middle - is too high if you are on Levo. It needs to be 1 or under and not around 2-3.
I doubt the cardiologist and kidney specialist will be any the wiser sadly. I have learned about the thyroid by following good articles/wesbsites/books and from the posts here.
You must press your GP - after all she works for YOU and it is YOUR body. You must not be concerned about that. Take someone with you that can fight your corner. I gave you the link that explains you are entitled to have copies of your test results.
I suggest you ask for copies of all recent blood tests and then ask for advice here in a new post. If you have been following this forum you will know that many people have been very poorly neglected by their GP's - and have found results were very bad and they were not told. Please make a shopping list for your next visit to your GP - for the sake of your health.
Please read my edited profile - by clicking onto my name. You read of my struggle to find wellness - it has been a tough ride
Hi thank you ....I think she was more offended that I had the cheek to question her !! I'm sure my age 78 has something to do with it...I MUST LOOK UP MY OLD LETTERS FROM HOSPITAL AS THEY ALWAYS SEND ME A COPY OF THE ONE SENT TO DR. WE HAD TO CHANGE GPS IN DEC. THE PREVIOUS ONE WAS WITH OVER 30 Years so nice to have a contact to express my worries to .
Might you have sleep apnoea? I have been recently diagnosed because of similar symptoms to you. I was stopping breathing 78 times per hour. I have a machine and mask now and it's cut it down to 2 times per hour.
Marz suggestion is good. What are your latest thyroid hormone blood test results with the ranges. If you've not had a recent one make the earliest appointment and fast (you can drink water). Also ask for Vit B12, Vit D, iron, ferritin and folate.
Low heart rate and low temps are clinical symptoms of hypothyroidism and our metabolism slows down too. It's when we don't have sufficient hormones to regulate them.
Hi Shaws ... Vit B12, Vit D, iron, ferritin and T4/T3 are all normal (I supplanted Vid D and Vit B12 to rise them ) I also increased the dose of T4 to 150 mcg to rise T4/T3 close to upper range, still no benefits while they were in the upper range, I dropped back to 100 mcg. I'm very healthy young man (34yrs) except what I described above!!
'Normal' doesn't always mean optimal. It is optimal we need so you always need to get a print-out of results for your own records and post for comments.
I think your over-riding problem is sleep apnea which I hope they can solve. I've read that Vitamin C can help with high cortisol levels.
If you have a blood test for thyroid hormone it should be the earliest possible appointment and fast (you can drink water). Leave approx 24 hours between last dose of levo and the test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day. Ask for Free T4 and Free T3 to be included and the FT3 in particular will show what's circulating in your blood. This is a link and cursor to FT3
Even if the sleep study showed no obstruction the machine is designed to know when the body stops breathing and forces the air into your mouth and nose. This could help you. My husband has the machine and he's a lot better on it. I have a mandibular device which fits over the teeth and then locks together holding my mouth open. I feel I am getting a better quality of sleep now my jaw isn't falling back and blocking some of the airways however I get pain in my teeth and now have a lovely big ulcer on my top lip. If I were you I'd ask to try the machine to see if it helps. You need something because your brain cells start to die off every time you stop breathing. You should ask for more tests at least.
After my sleep study, I believed the doctor and tried the cpap machine or the automatic one I forgot what it is called. What various changes and adjustments I didn't feel any better. After 4 hours of sleep I will wake up short of breath while the machine on me and the seem symptoms. I tries different devices on my nose and my tongue. The machine report tells me it is a secondary or central sleep apnea meaning something else other than obstruction is causing it.
Your mandibular device adoesn't sound so good, particularly if you've now got what sounds a blister on your lip. If it isn't one things it's something else. I hope you feel better quite soon with better sleep and the blister hearling.
Thanks. I went to bet at 1:30 tonight/this morning and my knee pain woke me up at 3:30 so am up trying to get the pain to stop. I rarely sleep right through. Sigh!
Painful joints can also be a hypo symptom. Hopefully when you're dose increases it will improve. This is an excerpt:-
You said your thyroid lab tests were within range. Because of that, were I you, I wouldn’t waste time undergoing more of the conventional tests. Instead, I would look for a clinician who’ll listen to me, look at me, physically examine me, and do physiological (such as your Achilles reflex speed and the voltage of your ECG/EKG) and limited, meaningful lab tests.
You’ve apparently tried to get an accurate diagnosis from physicians who lack skills at what’s called “pathognomy” (pa thog’ no mē). This term means the study and knowledge of the symptoms and all other characteristics of a disease. The term comes from the Greek for “skilled in judging disease.”
When you find a competent physician, he or she will practice pathognomy. Years ago, I invented the term “extremist medical technocrat” during an interview with Mary Shomon. What I meant by this term is that most conventional physicians don’t practice pathognomy; instead, they practice a extreme medical technocracy. That is, they focus solely on lab test results, stair into their computers screens rather than you without giving you so much as a glance or permitting you to express yourself. In my view, for a physician to fail to embrace and practice pathognomy is to forsake his or her patients, such as you.
My specialist said my thyroid condition could mean my thyroid was swollen inside and causing problems in the throat. have you had your thyroid/throat scanned?
Other than that I don't know what to suggest other than keep banging on to the doctors. Saying what it isn't does not help you.
Hi Ali, very typical of low thyroid saturation. It's too bad you didn't get your T3. I would bet that an increase of either T4, T3 or NDT would definitely stop these symptoms. If you cannot do anything at all right now (although I understand you can acquire several types of NDT), try taking your levo at bedtime. Try taking your normal dose for a few nights and if you can get your doctor to give you a bit more if you tell him you feel better, that might help. Your test results could very well look fine even though you aren't fine.
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