Hi, I have realised since joining I have been too trusting and didn't ask my GP's or consultants enough questions over the years. I just thought that Thyroid was just a blood test and a taking pills inconvenience, at worse being cold and a bit tired. When I questioned my increasing symptoms they were always put down to my neurological health and told they were mostly incurable and I would have to adapt.
Anyway to get to the point now I realise that I need to be more proactive and take charge of my health and log things to compare treatments, progress or decline. I need to look for my own answers or know what questions to ask. I do have a slow resting heart rate below 60 and my oxygen is around 92. It does rise when I get up and move but I do get breathless a lot and feel dizzy and faint. My testing is just on the finger thing I bought during covid so when I mentioned it to the doctor he said they are not very good and of course my finger readings are OK when I visit the GP. (They were a bit low at my a hospital visit but not mentioned and I did not know about them until I got a copy of the consultant's letter and some of the blood tests.)
Anyway I want to do some of my own health monitoring like heart beats or oxygen levels like a watch or armband with a recording app to my phone but I don't know what to look for, what's the best, or if they are really any use.
Any suggestions or advice would be greatly appreciated.
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I do have a slow resting heart rate below 60 and my oxygen is around 92
The slow heart rate is called bradycardia and is common in people who are hypothyroid and untreated or under-treated.
Having an O2 saturation of only 92% is appalling! It could be caused by anaemia. I don't know if hypothyroidism causes low O2.
My testing is just on the finger thing I bought during covid so when I mentioned it to the doctor he said they are not very good and of course my finger readings are OK when I visit the GP.
Yes, doctors always have an excuse why gadgets they use aren't reliable when patients use them. Funny that, isn't it.
Are you a smoker or ex-smoker? Do you have asthma? Frequent bronchitis? Frequent pneumonia? Do you have COPD? Heart disease?
"Normal" for O2 Saturation is usually quoted as 95 - 100, so yours is far too low.
Thanks for your reply. I did smoke in my youth but stopped 4 times when pregnant, then started again after each birth. I finally gave up when I was about 30, so I haven't smoked for over 30 years. I was a premature twin and had bronchitis at 6 weeks. This left me prone to coughs and such as a child but I became a long distance runner at school so not too bad.
Now I get out of breath easily when doing things but can manage if I take things easy and pace myself. I did think it was caused by taking beta blockers so stopped taking them about 3 years ago. But it didn't really improve things.
I did try to do some exercise going walking with my husband 2 years ago but got chest pains and breathless everytime there was a bit of a incline. The doctor sent me for a heart test with dye into a vein but it didn't show a blockage so it was ok.
Things haven't improved and I've been so weak over the last few years and my brain is so foggy.
I need better or clearer answers from my doctors. With the help on here, I'm learning what to ask and what to check on.
If you have iron deficiency anaemia, that can cause chest pain, although it is usually associated in that situation with a fast heart rate, rather than a slow one.
Thanks, I don't know anything in detail but my red blood count was low at 3.95 (range 4.0-5.8). My red blood cell distribut width was high at 16.2 (range 11.6-13.7) I don't understand the last one but think it maybe a B12 deficiency. All the other results looked within range.
I will look at the info you have sent me and hopefully have the right questions to ask my GP I will make an appointment next week because its a few weeks since seeing the consultant.
what were the results of your most recent blood test for thyroid?
When my levels are too low, I have a low heart rate and get out of breath easily.
Have you had a chest X-ray or breathing tests?
I use a Fitbit sense which I love, and use my resting heart rate data to help judge my thyroid levels but I think you have to subscribe to get it to measure oxygen levels. You’d have to check that one.
Did the consultant offer you liothyronine (this is T3) to bring your level up? I take 75mcg levothyroxine and 10mcg liothyronine per day as my FT3 level was 3.9 and I felt depressed and generally awful.
I presume you are on levothyroxine as your FT4 is so high?
Yes the consultant said I needed T3 but he didn't prescribe it just said he will tell my GP. Its been 2 weeks on Tuesday since I saw the consultant so I will make an appointment to talk about it with my GP and my other results. I see a list in the making......
Welcome to the group it’s a good community and there is always someone on here who will be able to answer your questions. See above😉
It’s really good that you’ve realised that you have to be proactive and help yourself. It does doctors good to realise that you are going to take part in your diagnosis. It’s a bit if a cheek to put all your symptoms down to your neurological health and tell you that you will just have to adapt. What a nerve! The thyroid gland affects every single part of your body.
When I had Graves’ disease back in 2012 I started jotting down how I felt each day, not a long essay, just a bullet point or two. It was very helpful to be able to relate how my body felt as my doses increased. I used to keep all that information in a little notebook along with any questions I wanted to ask when I saw my consultant. It showed them I meant business and I was taking an active part in my treatment.
You could do the same and also add in your oxygen levels, your heart rate, your blood pressure if you do that, well anything that you can record. Jot down when you feel dizzy etc.
I found it very useful for hospital / doctor visits because I could relate how I felt to what I was taking at the time and I was able to use my figures to get an increase in my drugs when my body needed them not necessarily when my doctor thought I should have them, I know hyper is different to how you are with hypo but I’m sure you know what I mean.
I have one of the finger oximeters and although it is smaller than the one my doctor uses it was still accurate - or accurate enough. One thing I did find out was that it couldn’t read through nail varnish - and that I can increase my oxygen levels by taking lots of deep breaths.
A couple of years ago I bought an AppleWatch which has a Health ❤️ app on it. I really like it, but it was expensive. It records your oxygen, your sleep, the number of steps you take and all sorts of other things -/it has an SOS button.
First day I got the watch I dropped it on the kitchen floor and a man spoke to me to ask if I had fallen! Gave me the fright if my life. I switched the sound off at that point then really did fall one day I could feel it buzzing on my wrist when I answered it it was asking if I had fallen then it gave me some options. I chose ‘fallen but OK’ but basically it knows if you need assistance or you can press the button yourself and get help if you ever need it.
It doesn’t take your temperature or blood pressure though, I get ‘white coat syndrome’ so I use a regular cuff and take my own recordings to the doctor every now and again.
I will look for something like your watch it sounds great. I don't have Apple my phone and laptop is Android would it still be able to work.
My husband is getting more helpful and understanding. He is less trusting of doctors now and not as dismissive of this group and other research I'm trying to do to help myself. This helps I'm not worrying myself ill reading thing. I feel relieved that by reading I know I'm not going mad or a hypochondriac.
I’m not sure but I’m sure there are similar watches that work with android phones.
This group is amazing. My husband talks jokingly about *your militant thyroid group*. He means it in a nice way though and realises what we are up against and how valuable it is because I regularly read out some of the really awful posts you read on here. It’s great that yours is getting there too. 😊
Hi there, we've all been too trusting of our doctors in the past. It took me nearly 10 years to find this forum and 'see the light'. The replies above are really useful and you most definitely should take control. Monitoring yourself, writing down symptoms, recording all results in a spreadsheet, getting private blood tests if the doc won't do them, optimising diet, vitamins, minerals, and read, read, read to educate yourself about everything thyroid. You'll end up knowing more than your gp, so be prepared to be firm and tell them what you need. Good luck!
I will have to be much firmer with my doctors. I did write a very short bullet point list to remind me of what questions to ask my GP about 6 words. His first comment was "I don't know if we will get through all those in the time we have. I would change GP but its not an option where I live he's one of the good ones, there others much worse in the group practice.
I will keep a note of symptoms and my heart rate and oxygen levels. I have bought a blood pressure cuff after seeing a high reading on a hospital letter and my blood pressure is mostly ok but I now have a record of results. I just think a 24 hour monitor would be better. I will look for something like a Fitbit.
🤣 Honestly! Hope you managed to get a good way through your bullet points.
When I was taking part in a medical study I discovered there is a correct way to take your blood pressure, my results came back and were so low I thought they must belong to someone else but it was only because they were taken properly.
It’s pretty much the same as the link below I wait five minutes between each reading because that was what they did for the study - I always read a book, I take three readings and don’t talk while I’m doing it. Then I take an average of the three readings.
When you think about it doctors slap the cuff on your arm then carry on talking to you 🤔 I once told a doctor I didn’t want to talk while it was happening but sitting there in silence when I knew he only had ten minutes was probably as bad if not worse than talking while it was happening. Three readings with five minute intervals (I set the timer on my watch) reading a good book is the way to go - very relaxing and someone at my surgery sends me a message every now and again asking me to drop my readings in to reception.
You have had a lot of good advice on here so I’m not going to repeat it. What I will say is that I recognise a lot of your symptoms and many of them have now been helped by a) getting the proper thyroid and vitamin tests and b) knowing exactly what to take to remedy any deficiencies. Most of this has been done with help from the people on here plus private blood tests, the results of which are then “advised” to GP and Consultant, who can then chose to repeat or accept them.
In my case it was a case of having combination T3 and T4, which it sounds like you need so I’d advice getting your own tests done with the two thyroid antibodies too.
Secondly, you need, B12,Folate, Ferritin and Vit D tests as deficiencies in any or all of these (likely in people with thyroid issues) will make you have symptoms such as you describe and what I had. I bought one of those finger monitors and then saw my Gp had the exact same one, so he couldn’t argue with me! I now use an Apple Watch which measures everything and even warns you if things are not going to plan. I’ve shown my GP the reports they give you which he’s happy to accept.
If you need info on where to get tests then just let us know but you can go on the Thyroid Uk website where the companies are listed and there are some that do all of them in one test.
Your T4 looks too high and T3 far too low. Probably low T3 is causing lots of your problems. NHS doesn’t as a rule check T3 levels as they don’t want to prescribe due to its cost. However, you can get it inexpensively privately. You’ll need to seek private endocrinologist help really. TUK have a list of pro T3 Endo’s that may be able to support you.
Just after covid a bought a Checkme 02 max monitor for the hubby. I knew he had severe sleep apnea but because of covid no appointments were going ahead. This device records constantly both oxygen levels and pulse along with episodes of apneas. It can also be worn during the day. It gives detailed reports that can be shared. This information was shared by his surgery with hospital apnea team and they couldn't ignore it. He got an appointment straightaway.
There is also a ring device made by this company too. I know it's not sleep apnea you are needing for but has all the information you need. It's a lot more expensive than an oximeter, I think I paid about £150
Thanks I will look at these, £150 isn't too bad, if it helps.
My sleep apnea is monitored on a chip in my CPAP machine but I don't think its done in any great detail. When they checked it they just said that it showed I used it for an average of 4+ hours. This made no sense as I get up frequently during the night due to pain or for a pee. I haven't seen my sleep nurse for over 5 years. I just ring for new masks or filters.
You download an app with it so you have all the information stored.
Just looked on a reading and it looks like it logs every 4 seconds. Here's a photo I took. You can expand the timeline to show all the readings within the minute.
There's a lot more information given.
My hubby has ResMed machine and I can see his readings on my phone for time use of machine, leakage of mask and events/ apneas per hour
Hi my machine is a ResMed H5i with climate control. It does have a bit at the back that looks like you can plug a lead into it. I cant remember if I used one of these machines when I did my home sleep test, I had a lead and some pads plugged into the machine that the nurses could read showing all the things like your husbands machine.
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