Low temperature

I'm posting this in here because it looks like the most likely candidate may be thyroid related, although I am not wedded to the idea, by any means.

I had a digital thermometer turn up earlier today, ordered because my temperature seemed seriously high during a recent lurgi attack, which I have still not cleared - my head was like a radiator, I could feel the heat coming off it without touching it.

So this thing arrives, put the batteries in, give at test - 35.0C - okay, let it reach the same temperature as the room, give it 30 minutes - 35.1C

So I go out to empty the rubbish, which involves going down some stairs, and coming back up - you'd think that would make me hotter - nope - first attempt says "Lo" and the next 33.1C, now it wasn't particularly warm outside but I could breath fine and my tablets weather thingie says it was 12C - so not hot but also not terrifically cold either.

30 minutes later back up to 35.1C.

I've been checking it all day, every hour or so and by and large it's been climbing, possibly related to food intake, as when it's approaching a meal time it starts dropping again, or so it seems - it's now up to 36.2C - but it's pretty much bedtime so it's going to be interesting to see what it is in the morning.

Now what I read online is that relatively small drops from the "normal" temperature could indicate hypothyroidism, a condition I thought I'd ruled out, but the temperatures I've seen today, barely above hypothermic. Even if I allow for a whole C error (reviews suggest it may be 0.1C out) my temperature is still pretty low.

So...erm.....

 

Morning! I'm not the only insomniac tonight then @Wonko ,

It sounds like maybe something that should be checked.

Hypothyroidism can cause low temperatures. My temperature is generally slightly low even on medication. I don't bother checking my temp regularly anymore but when I suddenly found myself being undermedicated earlier this year I happened to be wearing my HR monitor.

I discovered that when asleep my HR was dipping as low as 46 or 47 bpm. I also had a couple of episodes where walking slowly upstairs triggered palpitations & although it felt like my heart was beating very fast my HR had dropped to below 50. Needless to say I am not a fit person so that is very low for me.

There are a wide range of symptoms that are very ME like such as feeling the cold, aches and pains, and also others:gaining weight, hair loss ( esp. noticeable when washing the hair).....The list goes on.

You probably already know that there is a "range" and if your test results fall within this you generally won't be treated. What's normal for you isn't necessarily within the normal range.

Thyroid UK are a good source of info:
http://thyroiduk.org.uk

It may not be thyroid but it's certainly worth investigating. Be warned tho that iif you are not already on some sort of thyroid medication most labs will only check your thyroid stimulating hormone levels (TSH). Even if your doc requests more tests

 

My temp varies from 35.2 to 37.2. 33 C seems vey low. I would buy another thermometer and redo the whole thing.

When my kids were young, I used digital thermometers often and lots of them were just not accurate.

 

35.6C, shortly after getting up.

@Dechi - as it's a forehead thermometer, presumably using some form of program to arrive at a core temp based on what it sees on the surface, I would think even slight surface cooling, such as from being in a cold environment or sweating, could significantly alter it's calculations, and lead to a low result. So far I'm not seeing stuff that suggests it's defective, unfortunately I have no heat sources with a definite known temperature within this things range, or at all for that matter (apparently kettles don't boil at precisely 100C for some reason).

So it's either a case of buy a mercury thermometer to check it against (Yum yum) or test it on someone else next time I meet someone whose both healthy and non ancient, at around 3pm, (fairly sure these days just wandering up to someone and measuring their temperature is assault lol)

 

Most people with ME have a low body temperature - see http://forums.phoenixrising.me/index.php?threads/what-is-your-body-temperature-rethinking-98-6.1454/

 

Years ago my integrative functional doctor had me take my temperature 3 times a day for one month to see if I had "Wilson temperature syndrome".
https://www.mayoclinic.org/diseases.../expert-answers/wilsons-syndrome/faq-20058414

I wish I had kept the chart so I could post here because I also included my activity level. On days when my temperature dropped to 35.2 it was usually the day (and second day) after I went over my energy limits.

My free T3 was below normal and hair was falling out so I experimented with compounded triiodothyronine to see if it would help. I took it for 6 months, and although my free T3 normalized and TSH went down to 2, I felt exactly the same and continued to lose hair.

I stopped taking triiodothyronine after 6 months and eventually my T3 normalized on it's own, my temperature still remains on the low side and feel that (for me) the issue has to do with HPA dysfunction that we hear about all the time related to this illness.

The M.E doctor I saw 26 years ago told me that low body temperature is very common for us and that when we feel 'feverish', it's the bodies natural mechanism trying to raise our temperature.

Have you had a thyroid panel done?

 

No, I was going to get one done privately a couple of years ago but NDT seemed to do the job nicely, the effects really were remarkable, didn't scratch the ME but it resolved a whole host of other issues that had built up over the decades that I had assumed were just part of ME. I had difficulty coming off NDT (which I deemed sensible before getting a thyroid screen done) until I didn't, one day the "withdrawal" effects just disappeared, as well as the benefits, after probably 9 months to a year of taking NDT.

NDT no longer making a noticeable difference suggested that it wasn't a thyroid issue to me, so I never got around to having a screen/panel done.

 

Demand for thyroid hormone and thyroid output fluctuate. Nowhere near as rapidly and as markedly as insulin demand and production, but a similar idea.

It could be the NDT was no longer making a noticeable difference because you were no longer taking a therapeutic dose-possibly because of reduced thyroid output or an increased demand that the thyroid couldn't meet.

It's all speculation without the test though. If you do get a test done, make sure you get a copy of the results with the actual values. That way if you ever need to repeat it you can compare results later on.

Forgive the comparison, but in my dog's case we were fairly sure he had subclinical hypothyroidism. So he was tested every six months and we could see his results were going downhill and started him off low and slow on doggie thyroxin. If course the standard of care at the vets was higher than your typical GP surgery

 

@Wonko

1) Body temperature normally rises throughout the day then drops as sleep approaches. The normal way of measuring temperature for people with thyroid issues is to measure it as soon as you wake up, but before you get out of bed, or eat or drink.

2) A forehead thermometer is not the most accurate method of measuring temperature. I think a rectal temperature is considered the most accurate but few people use this as far as I know. Whichever method you use there are different "normal" temperature ranges depending on whether it is taken in the rectum, the armpit, the mouth or the ear.

Sorry to tell you this, but you did everything in completely the wrong order. You should have done a proper thyroid panel blood test before taking thyroid meds for the first time, to give yourself a baseline. Once you started taking NDT and were getting benefits from it then coming off it was completely the wrong thing to do. The body doesn't like massive changes in hormone levels. Also, taking thyroid meds changes your baseline, possibly for ever. So, for example, your TSH might never rise as high again, as it did before you took the NDT. And since doctors ignore symptoms, don't really know what symptoms hypothyroidism causes, and only treat the numbers for thyroid (rather than treating the actual patient), it may delay you getting "official" treatment, possibly for years, or even for ever - it depends on whether you have thyroid antibodies destroying your thyroid or not, which will worsen the results over time.

Another point - people who are hypothyroid don't come off their meds for weeks or months before testing. They get tested while taking their meds to see if they are adequately treated. It is a good idea to stick to testing with a specific routine so that results can be compared from one test to the next. The thyroid forums I read always suggest :

a) Stop taking Levo 24 hours before a planned test. Stop taking NDT and T3 12 hours before a planned test.

b) Arrange testing for first thing in the morning - say, 7am - 9am or 6am - 9am. Whatever time you choose, stick to it as closely as possible for future tests.

c) Fast overnight before the blood is taken for testing (except for water).

The reasons for the above rules is to return results which maximise TSH and minimise Free T4 and Free T3. Doctors base treatment on the numbers, as I said, so you want to produce results that minimise the risk of getting meds reduced and/or maximise the chance of getting a raise in meds if necessary. Doctors frequently under-treat people with hypothyroidism, and they usually only test TSH, which isn't even a thyroid hormone - it is produced by the pituitary.

Knowledgeable patients have found that the most accurate test for thyroid is the Free T3 - generally speaking, Free T3 is over the range when people are being over-treated for hypothyroidism, or under-treated for hyperthyroidism. And conversely, when Free T3 is low in range or under the range then they might be under-treated for hypothyroidism or over-treated for hyperthyroidism. And guess what? Free T3 is hardly ever tested because doctors are trained to believe it is irrelevant. In fact, T3 is the active hormone. T4 is mainly just a prohormone.

Doctors always assume that reference ranges for any test tell them the perfect levels for everyone. So someone with a result which is 5% of the way through the range and someone with a result which is 95% of the way through the range will, allegedly, both be feeling wonderful because both results are "normal". But in the case of thyroid, and probably many other tests as well, where your result lies in the reference range is the vital thing, not just if it lies in the reference range.

 

@Wonko

If you were interested in private testing of the thyroid (no doctor required) you could try these two companies which have good reputations :

https://www.medichecks.com/thyroid-health

https://bluehorizonmedicals.co.uk/test-catalogue/thyroid-blood-tests

Note that people with hypothyroidism often produce insufficient stomach acid and as a result they end up with low nutrient levels because their food is poorly digested. So, several of the tests listed in the above links will also include testing of several basic nutrients. On thyroid forums the test bundles containing 11 tests are the most popular for people who can afford them :

https://www.medichecks.com/thyroid-function-tests/thyroid-check-ultravit

https://bluehorizonmedicals.co.uk/thyroid-check-plus-eleven.html

 

@Arnie Pye

Thank you - I will look into them and compare then with the one I was looking at, if I can find it.

edit - in fact why bother, it looks like the test recommended covers all the bases so, assuming I don't forget, I'll probably go for that in a week or two, I've got a couple of other things to do first and I'm hopeless with plates containing more than one thing.

 

My spontaneous thought was a little similar to @Arnie Pye's about the thermometer. It took some experience to understand how measuring in the mouth works. It's not simple, I need a certain position which hurts, and I repeat measurements several times and take the highest, plus 0.5° (it's cooler in the mouth than inside the body). I don't like rectal measurements, and measurements in the ear or forehead are said to be imprecise.

If you should go for checking hypothyroidism it's important to have ft3 and ft4 measured, as @Arnie Pye said. My temperature started increasing with taking T3. Before, only ft4 got up, TSH near to zero, and nothing else.

Best wishes!

 

@Wonko, I've not read the whole thread, I had low temperature and felt kind of dry all over. This was couple of years ago. Prior to this I had many thyroid panels with normal results. Except the antibodies were always high. After this temperature drop episode in my next panel everything was abnormal. I was hypothyroid and I was put on thyroxine replacement medicine.

 

I agree forehead thermometers are definitely the least accurate method of taking your temperature. Get a good mouth thermometer. Simple and fast.

 

My forehead thermometer gun is reliable, but has two settings which I accidentally found out one time. I don't remember what they are, but one shows very low temperatures, and the other shows "normal" temperatures (still low for me, but average for the fiance) when shooting ourselves in the head with it. I had accidentally hit some button, and hitting again put it back on the right setting.

 

@Arnie Pye I want to get your wonderful explanatory post printed out and shoved down the damn idiot throats of all the damn idiot doctors we've endured.

 

Okay, it looks like to get any comprehensive test collection/package done they really need a venous blood sample. The nearest place I can have that done is on the other side of town, apparently in an industrial park, a trip that using public transport, according to google, would require 17 minutes walking, for a healthy person, each way.

This is not doable, so it'd be taxi's, probably around £10-12 each way + £25 for the blood draw.

I am interested in seeing the rT3, and ratio, results, given I've been ill for quite a while and my previous reading suggests that chronic illness can affect these things, which in turn could alter any treatment plan, so that means a more expensive test (£169). Also given the inconvenience it might be best to get all of the info I can in one hit, as it's unlikely I will do it again for quite a while. Depending on results any future test would probably be more specific (i.e. cheaper).

Fortunately there is a 20% off code running ATM (INSIDEOUT4) at medichecks, which brings down the price, not including taxis, to "only" £160 (including the blood draw). Money isn't a major issue ATM, given I cut my Christmas budget so savagely (not really to save money, just because I didn't have the energy needed for the whole Christmas thing), inconvenience/effort is.

......and it may, possibly, answer the thyroid question once and for all, no more niggling.....

So, unless anyone has any better idea's I'll probably order it next Monday (not for next Monday, but that's when I'll click buy it now)

 

@Wonko It is possible that your nearest NHS hospital with a phlebotomy department might take blood for you for private tests for a fee. Some do, some don't. When I've done private testing with a test kit sent through the post and a venous blood sample was required I was sent all the needles, syringes, and test tubes I needed, plus all the instructions the phlebotomist needs, and I just handed over the whole lot.

Phone up the phlebotomy department at the hospital, ask if they will take blood samples for private testing, ask how much it will cost, tell them you will be supplying the needles and tests tubes etc. Take all the paperwork and packaging you need with you and package up the blood samples in the waiting room, then take it to a Post Office immediately if you can.

The very first time I got blood taken for private testing in an NHS hospital (several years ago now) it cost £7. The next time it cost £18. I've heard of some people who've been quoted £35 or £45, so it is absolutely essential to know in advance before going to the effort of going to the hospital, because it may end up being more expensive than a private blood draw. Some hospitals allegedly do it for free, but I imagine they must be as rare as hen's teeth now. Some hospitals that used to take blood won't do it any more. It's all in the lap of the gods.

Always get blood samples taken on a Monday or Tuesday or Wednesday to reduce the chance of the sample getting stuck in the mail or delivered when the lab has no staff to test. (They don't work weekends as far as I know, and I think they start work at 9am.) If you pay for guaranteed next day delivery by 1pm (not 9am because the office/lab might be empty) then it increases the chances of the sample not being delayed and the blood being in the best possible condition.

Medichecks do have frequent money-off offers but they don't last long - a few days at the most. Be careful you don't miss the special offer.

 

You're welcome!

 

@Wonko my GP here in the UK gave me all these tests (full thyroid panel) at my local surgery. Initial thyroid investigation they don't mind giving; all the tests, but later they don't want to measure everything unfortunately. Can you not go to your GP and mention all your problems. They are usually very keen in the hope that one doesn't have ME, that it is a misdiagnosis of thyroid problem. So they go for all the tests initially if you moan a bit.

Then, it usually that transpires one has the thyroid problem on top of ME...

Worth a try? I think £160 is worth keeping in your pocket?