low body temperature connection underactive thy... - Thyroid UK

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low body temperature connection underactive thyroid

Sharynh profile image
28 Replies

I've been reading fascinating book The Low Body Temp Cure by Denis Wilson MD, free e.book PDF, anyone read it/found it helpful

28 Replies
MaisieGray profile image
MaisieGray

The Florida Board of Medicine didn’t look kindly on Wilson and his syndrome. In 1992 it reviewed the cases of eight of his patients (one that died after thyroid treatment). Following its review it suspended Wilson's medical licence, fined him $10,000 and ordered him to undergo psychological testing.

The basis of his syndrome is predicated on there being a single body temperature for all which belief came about by a faulty study 150 yrs ago, and which was disproved in the early 90's and subsequently again by a study sample of nearly 18,000 subjects a few years ago.

Sharynh profile image
Sharynh in reply to MaisieGray

ahh, thank you, had you already heard all that or did you know about it at the time

MaisieGray profile image
MaisieGray in reply to Sharynh

I think Dr Wilson and his "syndrome" are fairly well-known in thyroid circles, especially him being investigated etc. The body temperature issue is one that crops up in different thyroid protocols and despite evidence to the contrary, people seem still, to be urged to chase a single temperature.

Sharynh profile image
Sharynh in reply to MaisieGray

Ive had a look at that history and he seems to still be working and has a huge following loads on youtube in 2017, so I am not put off by the reaction in the 90's and am always very skeptical about mainstream rubbishing of anything different, so I wonder if anyone has anything more recent.

bookish profile image
bookish in reply to Sharynh

Hi Sharynh, not terribly recent but Dr Peatfield's book (Ist edition Great Thyroid Scandal 2002 and updated version Your Thyroid and how to keep it healthy 2006 (I have the 2017 reprint)) has a brief section on Dr Wilson (2 pages) and in Dr P's usual measured and gentle way, he is not keen. He basically says no-one would disagree with Wilson's symptoms and signs but there is no reliable evidence to support his mechanism theory and that his treatment with high doses of T3 may cause a number of hyperthyroid side effects which may be most uncomfortable if not actually dangerous. He summarises "I, along with others, am far from convinced that his approach brings any useful advantages in the treatment of hypothyroidism." Dr P can most definitely not be classed as mainstream rubbishing! I hadn't heard about the Florida Board stuff before.

Sharynh profile image
Sharynh in reply to bookish

Thank you, trying to keep an open mind, so desperate, want it to be true when all else fails, but I will read Dr P, appreciate your help

ShootingStars profile image
ShootingStars

I have not read that book. Low body temperature and not sweating can be one of the many symptoms of low thyroid hormones, just as higher body temperature and over sweating can mean high thyroid hormones.

I did not sweat much at all for years. I pointed this out to every doctor that I saw, but not one was concerned. Then I started getting sick and went through many doctors trying to find the cause. I was eventually diagnosed with Hashimoto's. However, I wasn't bad enough yet to warrant thyroid meds, or so I was told. In reality, it was the common case of the doctor focusing on TSH only and not understanding Hashimoto's, thyroid disease, optimal hormone levels, and the cause of all of my symptoms. I started getting really, really sick. I was freezing cold despite being in the middle of a heat wave that lasted off and on for two months. All of my muscles were very, very sore. My limbs did not work. My body temperature was just above hypothermia. I wanted to sleep all of the time because I could not stay awake at all due to my very slow metabolism. I felt like my body was shutting down. For all intensive purposes, it was, but I did not know it. All of this, and I was still told it was not my thyroid.

I got a new primary care doctor, got new lab tests, and had some startling lab results. My FT3 and FT4 were at the bottom. Cause: not being medicated for Hashimoto's. Levothyroxine was prescribed, but I knew this was not enough. I knew I needed to add T3 because of my low temp, not sweating and my muscle problems. I found a second doctor who prescribed T3. I've been on T4 and T3 for years. Any time my levels go down too low and I do not catch it quick enough and increase my meds, I become very cold. As long as I keep my levels in what is the optimal range for me, I am warm, don't have Raynaud's in my feet, I sweat fairly normally, and I either minimal or no hypo symptoms.

Sharynh profile image
Sharynh in reply to ShootingStars

ahhh, thank you, what a journey, glad you got some help at last, so many dr's ignore or just don't know about crucial basics

ShootingStars profile image
ShootingStars in reply to Sharynh

Thank you. I know. It's astounding sometimes!

rjb112 profile image
rjb112 in reply to ShootingStars

ShootingStars, where in the free T3 range and free T4 do you need to be to not feel cold? I'm cold very often, so want to compare notes with you. My Free T3 is within the lab reference range, but close to the bottom of the lab reference range. Thanks

ShootingStars profile image
ShootingStars in reply to rjb112

Optimal for me is about 65-70% of range on both. I either have no hypo symptoms, or barely detectable ones, so I make sure I maintain my levels in that range at all times. If I have a new symptom develop, this means that there is a problem developing. I immediately run tests and increase my meds if necessary.

At 50%, I am much too cold. My feet go numb with Raynaud’s, even in my house. 55%, I am still too cold. At 60%, I’m feeling better, no Raynaud’s, I can sweat a bit at the gym this level, but it’s 65-70% where my temperature is just right and is consistent. I still don’t sweat much. I never really have. It’s rather strange when your arm pits barely have a scent even after sweating a little at the gym, or when sitting in my personal pod-like sauna. ;-)

At my sickest, my FT4 was just one number above the lowest number of range. At that time, my FT3 was actually a little higher. 75% is way too high on both. Gives me some fatigue, heart palps and I just feel wrong.

Oh, that’s not good. If your FT3 is at bottom range, this is much too low. No wonder you are cold. Do you have other hypo symptoms, too?

rjb112 profile image
rjb112 in reply to ShootingStars

OK, let's make this more specific, more clear, and put some numbers to it:

FREE2.4pg/mL(lab reference range 2.3-4.2)

FREE T-41.1ng/dl(lab reference range .67-1.52)

TSH1.66uIntUnt/mL(lab reference range 0.55-4.78)

TRIIODOTHYRONINE75ng/dL(lab reference range 60-181)

I am assuming the last test is probably "total T3", although the lab slip only says "Triiodothyronine"

Yes, I am cold. Not all the time, but often.

But sometimes in my apartment I am cold even if the inside temperature is 72 degrees F.

"Do you have other hypo symptoms, too?"

Tiredness. Low energy.

But I don't sleep very well, so maybe the tiredness/low energy is due to that?

I told my primary care doctor about being cold, but she doesn't seem to pay attention to that. She seems to only pay attention to the TSH level. I doubt she even looks at the free T3 level.....she only ordered it because I persisted and asked her nurse to order it, a few times.

I am only on 50 mcg Synthroid. I was on 75 mcg Synthroid about 6 months ago, but the doctor lowered my dose because my TSH was below the lab reference range.......even though I told her I was cold.

I tried unsuccessfully a few years ago to get a prescription for T3, liothyronine/Cytomel. The doctor told me that she could not do that, and sent me to endocrinology to address that issue. Endocrinology refused to put me on any Cytomel. I was only asking to be on Synthroid plus a small dose of Cytomel.

All my medical care has to be at the VA.....the Veterans Administration.

rjb112 profile image
rjb112 in reply to ShootingStars

I had copied and pasted lab results from a document, but when it posted the numbers didn't come out that well. Let me fix that:

OK, let's make this more specific, more clear, and put some numbers to it:

FREE T3: 2.4pg/mL (lab reference range 2.3-4.2)

FREE T-4: 1.1ng/dl (lab reference range .67-1.52)

TSH 1.66uIntUnt/mL (lab reference range 0.55-4.78)

TRIIODOTHYRONINE 75ng/dL (lab reference range 60-181)

I am assuming the last test is probably "total T3", although the lab slip only says "Triiodothyronine"

rjb112 profile image
rjb112 in reply to ShootingStars

One more try to improve it further:

FREE T3: 2.4 pg/mL (lab reference range 2.3-4.2)

FREE T-4: 1.1 ng/dl (lab reference range .67-1.52)

TSH: 1.66 uIntUnt/mL (lab reference range 0.55-4.78)

TRIIODOTHYRONINE: 75 ng/dL (lab reference range 60-181)

ShootingStars profile image
ShootingStars in reply to rjb112

You can edit your posts. Even delete them. It’s to the right. “...”

ShootingStars profile image
ShootingStars in reply to rjb112

So yeah, your free levels are way too low and your TSH is too high for someone who is properly medicated. You are very under medicated. Your doctor is confused, but hey, that’s pretty common these days. ;-) TSH will almost always be suppresses when on the right meds that raise your Free’s to where they should be. Mine is always under range. When it actually rises enough to be in the range, I get concerned because I know that something is probably going on. I’ll then monitor my levels and symptoms and might increase meds. He she should not have lowered your meds but should have possibly increased them and added T3. What were your labs when he she thought your TSH was too low?

rjb112 profile image
rjb112 in reply to ShootingStars

"What were your labs when he she thought your TSH was too low?"

I'll look for them online right now.

"TSH will almost always be suppressed when on the right meds that raise your Free’s to where they should be"

That's the issue. My doctor thinks TSH should not be suppressed. Even a second doctor at the VA was quite concerned when my TSH was below the lab reference range.

I'm not concerned when TSH is below the lab reference range.....but they are.....and they are in control.

I have an article by Dr. Toth saying that low TSH is not a problem if free T3 is unequivocally not high....but my doctor is not going to care about this article, as she feels TSH must not be below reference range.

So is your best advice is for me to have free T3 and free T4 about 65-70% above the bottom of the lab reference range??

Also: are you just referring to "feeling cold", or to actual objective, thermometer temperature measurements?

I don't take my temp with a thermometer. I just go by how I feel.....and I feel cold, not always, but a lot. Also my fingers get cold a lot, and also my feet and toes get cold a lot.

I'm not sure I could even find my thermometer that I used to have.

I'll check now to try and find my labs when my TSH was below range.

But I don't have a free T3 from that time, because even though I asked three times, I was never able to get a free T3 test. But I do have a free T4 and TSH which I'll try to post in the next 30 minutes

ShootingStars profile image
ShootingStars in reply to rjb112

Can you find another doctor? If your current ones won’t prescribe the correct meds, then you either need to find another doctor who will, or buy your own meds. I have no idea where you’d buy some in the US.

You are correct. If TSH is suppressed, and your hormones are not high, then there is no real problem.

No. That is my optimal range. Yours might be different. Both of your free’s should be at at least 50% but not higher than 75%, especially if you start having symptoms when it’s this high.

When I feel cold, I always take my temp and record the time, date, symptoms and my results. Sometimes I also feel achy if my temp is too low. I usually test my temp multiple times a day as symptoms come and go and over several days.

All of your symptoms and your blood results reflect that you are under medicated.

rjb112 profile image
rjb112 in reply to ShootingStars

OK, I found my blood work/lab results from December 2017, the ones that two doctors became concerned about and said I need to lower my Synthroid from 75 ug to 50 ug:

TSH: 0.09 Low (lab reference range: uIntUnt/mL0.55-4.78"

FREE T-4: 1.4 ng/dl (lab reference range: .67-1.52)

I'm going to find my thermometer or get a new one, and start recording my body temp a few times a day.

So, on 75 ug Synthroid, TSH was 0.09 per above; the primary care doctor did not like that, so lowered my Synthroid from 75 ug to 50 ug, even though I told her I was cold. Now, on 50 ug Synthroid, my TSH is 1.66

Free T4, on 75 ug Synthroid, Dec 2017, was 1.4

After lowering Synthroid to 50 ug, the free T4 is now 1.1

"Can you find another doctor? If your current ones won’t prescribe the correct meds, then you either need to find another doctor who will, or buy your own meds. I have no idea where you’d buy some in the US."

In the VA system, Veteran's Administration, it is difficult to switch to a new doctor. There are not many primary care doctors, and even if I could switch to a new one, it is extremely doubtful the new doctor would accept a TSH below the lab reference range either........and definitely not be willing to prescribe Cytomel/liothyronine to go along w/the Synthroid. So I don't think I would gain anything at all.......and things might be worse.

I cannot buy my own meds without a doctor's prescription.

"You are correct. If TSH is suppressed, and your hormones are not high, then there is no real problem."

I don't think I can convince any doctor of this, even if I show them Dr. Toth's article.

These doctors have firm convictions that TSH should not be below range, and that TSH is more important than the free T3 level in determining the dosage of thyroid hormone to prescribe.....and also firm convictions about not prescribing Cytomel/liothyronine along with Synthroid.

They tend to follow the standard practice patterns of their profession. Unfortunately, written practice guidelines are what they follow.

"Both of your free’s should be at at least 50% but not higher than 75%"

OK, that is a VERY helpful guideline for me. Especially the first part......"should be at least 50%". My free T4 is about 50%, but my free T3 is only roughly about 5% above the bottom of the range, just by a rough calculation in my head.

I'm thinking I could approach my doctor and suggest that I take 62.5 ug rather than 50 ug. I think the dosages come in 12.5 ug increments. At least that would be a start in the right direction. Especially if I could present her with some objective body temp readings from a thermometer....

"TSH will almost always be suppresses when on the right meds that raise your Free’s to where they should be. Mine is always under range."

Do you live in the UK?

How did you convince your doctor to accept your TSH levels below the lab reference range? Most docs will not accept that

Lovecake profile image
Lovecake in reply to rjb112

Why can’t you take 75mcg 5 days a week and 50mcg on 2?

I did similar (for me was 100 and 75) and it got the TSH to where the GP was happy. Might suit you and you could be warmer.

(I’ve since changed to adding T3, via an endocrinologist. GP now freaking as she doesn’t understand the suppressed TSH. But she’ll get the hang of it one day).

rjb112 profile image
rjb112 in reply to Lovecake

Not a bad idea at all.

My current Synthroid prescription is for 50 ug, so i would have to talk to my doctor about getting a prescription for 75 ug, also, a do a dosing similar to what you described.

"Might suit you and you could be warmer."

That would be nice.

I'm even much more interested in having more energy and less fatigue. To me that is more important than being cold.

How did you find an endocrinologist that doesn't mind you having a suppressed TSH? I've even read on this forum about some endocrinologists who don't want to see suppressed TSH in their patients.

Lovecake profile image
Lovecake in reply to rjb112

My cousin found him. But he is on the list of endos on thyroid uk website.

The nhs endo I saw was ok with TSH of 0.15 when I was on T4 only.

But I now have some T3 and as per many comments from the wiser people on here, if you are on any T3, your TSH will be suppressed.

I don’t think the TSH is particularly relevant for me now. It’s making sure the T3 is not over range. (Prob T4 too). Mine are not.

All rather complicated and very frustrating.

You could always cut/break a tablet in half to make the 75 till you get to see your doctor?

bookish profile image
bookish in reply to ShootingStars

Hi, interesting about the sweating - I have stopped virtually completely (having been really quite overly sweaty my whole life!) and Dr Peatfield has been the only person to show any interest. It is on his list of signs and symptoms. I am ridiculously cold for most of the year (and heat intolerant, to add to the insult). I am in the process of being diagnosed with APS (Antiphospholipid antibody syndrome, also known as Hughes' Syndrome Sticky Blood) which adds to the coldness and seems to be closely linked with Raynaud's, Sjogren's, Hypothyroid & Hashimoto's. Good to know that you have got some normal function back.

Simba1992 profile image
Simba1992

Here is some useful info and help on calculating your basal body temp.

functionalps.com/blog/2012/...

diogenes profile image
diogenes

The accepted normal range for healthy people is 97-99F or 36.1-37.2C. Above this can be fever, and below, thyroid function could be looked at as a possible cause, but other things can cause lower temp.

ShootingStars profile image
ShootingStars in reply to diogenes

Except people with thyroid disease aren’t healthy. Those ranges are accepted but a person might still feel cold and sick at 97.

When I was so cold, I’d start the day between 97.1 and 97.6. It would go down sometimes within 1/2 hr of rising. Then all day long it would swing between 97.1 and 95.8. The lower my temperature was, the more aches and pains I felt.

During this time, at doctors office it would be 97.8. That was after the hustle and bustle of getting myself to the appointment, so that activity possibly increased my circulation and increased my temperature. Even so, I was still cold at that temperature.

rjb112 profile image
rjb112 in reply to ShootingStars

Thanks. Good to know about this. Interesting that you were still cold at 97.8 F

rjb112 profile image
rjb112 in reply to diogenes

Thanks.

I just ordered 2 different body temp thermometers on Amazon.com, so I'll be able to check body temp once I receive them. Good to know the normal range is 97-99 F.

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