Hypothyroidism

[Ruthie]

One of the many gifts you get for free as a peri-, inter- or post-menopausal woman, is hypothyroidism apparently. Along with a standard-issue grey cardigan, droopy Everythings, and a low tolerance for bullshit.

So I have hypothyroidism, which has made me the fattest I’ve ever been, and taken another Summer’s cycling off me because I’ve been SO tired, and anxious enough to have proper fainting episodes which made me scared to ride a bike.

I just got formally diagnosed and will be starting levothyroxine imminently.

Has anyone else got this condition? Any tips, especially for cycling, energy management? How long did it take you to feel normal?

[DuncanM]

It lives in my family. My grandma, mum, sister, myself, and my daughter all have thyroid issues.
My experience was of hyper, which meant I had a resting heart rate of 122, and was hot and starving the whole time. I eventually had my thyroid removed, so now I take levothyroxine every day. My levels are pretty consistent, so I only have blood tests every couple of years (though if I feel like I need it, or if I change dose then it can be every 3 months).
My daughter started experiencing hypo at around the age of 5 - it meant that she didn't grow very much for a couple of years, so has a bone age a couple of years less than her chronological age - aside from making her uncompetitive in any sort of physical activity, it doesn't seem to bother her. It does mean she has to have blood tests every 3-6 months, and regular appointments at the childrens hospital.

I think it took a couple of months for my levels to get sorted when coming down from hyper, and a similar sort of time for my daughter to go up. Once you get somewhere near then you can fine-tune (maybe taking different doses on different days so the total across the week works out).
They will probably take bloods every 3 months or so until your dose is settled. It's useful if they have T3, T4 and TSH levels so you can keep a record longer term, sometimes they don't do all of them so it's harder to keep track. Don't set too much store by the numbers though - the range of normal is pretty wide, so try to keep an eye on how you feel and if you think you are not feeling normal then get re-tested.

It sucks to feel hypo (or hyper TBH), but once things are settled then it's not a big deal to keep on top of it so long as you remember to take your pills.

[Ruthie]

Thanks, DuncanM.

[morbihan]

Hi Ruthie,
I was diagnosed via annual blood work 6 or 7 years or so ago. I was late 40's at the time.
I have been taking 175ml of Synthroid a day since. It took a little while to dial in the right dosage, slowly upped until my readings were good and I have annual blood work done to check everything is okay.
I was super tired and falling asleep in the early evenings  prior to the meds. It's much better now.
As it pertains to cycling, I have been able to compete in ultra races and very long rides with no ill effects as long as I take my meds.

As a side issue, but I think related, I have more recently been on a HFLC diet. Its had eye opening results for some other related health/age issues and Im suspicious that the hypothyroidism was as a result of a heavy carb/sugar intake.  There are schools of thought out there who believe this to be the case.
I know keto based diets are contentious and tend to put people in one camp or the other, but thought it was well worth mentioning.
I'm debating about cutting down my Synthroid to see if the new different nutrition has taken care of the issue. I'll do that under the guidance of my doc of course.
Long story short though, once you have your meds measured right, you will feel great, have more energy, and cycling will be a breeze once more

[chrisbainbridge]

Hi Ruthie,
I was diagnosed via annual blood work 6 or 7 years or so ago. I was late 40's at the time.
I have been taking 175ml of Synthroid a day since. It took a little while to dial in the right dosage, slowly upped until my readings were good and I have annual blood work done to check everything is okay.
I was super tired and falling asleep in the early evenings  prior to the meds. It's much better now.
As it pertains to cycling, I have been able to compete in ultra races and very long rides with no ill effects as long as I take my meds.

As a side issue, but I think related, I have more recently been on a HFLC diet. Its had eye opening results for some other related health/age issues and Im suspicious that the hypothyroidism was as a result of a heavy carb/sugar intake.  There are schools of thought out there who believe this to be the case.
I know keto based diets are contentious and tend to put people in one camp or the other, but thought it was well worth mentioning.
I'm debating about cutting down my Synthroid to see if the new different nutrition has taken care of the issue. I'll do that under the guidance of my doc of course.
Long story short though, once you have your meds measured right, you will feel great, have more energy, and cycling will be a breeze once more

There is an interesting podcast on Primal Blueprint podcast on 7 June with Cynthia Thurlow who is an American "recognised expert in nutrition and intermittent fasting" However she talks about hypothyroidism and menopause quite interestingly.  I would not accept everything she  says but on this subject quite useful for adding to your thinking.

[Beardy]

I’ve been on the thyroxin since 2000, long before I’d be eligible for the menopause if I’d been a woman. 

Seriously, I don’t think it’s ever been an issue. Yes, I’m tired, but I’m also on antidepressants and I think it’s much more likely to be the source of my fatigue. It’s an easy drug to take because it take so long to impact anything and missing a dose has never to my knowledge had any impact. I do take it at bedtime though mainly because it’s recommended that you don’t eat for an hour either side of taking them. The only issue I have with being on thyroxin is not being allowed grapefruit which I really enjoy. I do sneak a glass or two of juice ,if I’m staying in a hotel, but we never buy grapefruit or it’s juice at home.
The bonus of hypothyroidism is free prescriptions, though is a pretty poor consolation prize.

[DuncanM]

Last time we were at the consultants, we asked about taking it in the evening, and they said so long as you were consistent it didn't matter when you took it. (Routine is your friend - my daughter takes hers before bed, I take mine when I get up). We also asked about missing doses, and they said that if you remembered within the day then you could still take that day's pill, but if you only discovered when you were close to taking the next days pill then you should just leave it and skip a dose. The pills only come in 25 microgram increments, so if you are in between then you can take different doses on different days, but they don't seem super strict about which days you take it (my daughter takes one dose Mon-Thurs and a slightly lower dose Fri-Sun).

[rafletcher]

My wife's been on it for around 10 years now, as a result of intial hyperthyroidism (at 66, likely as a result of a 40 year Lithuim habit), followed by radio-iodine treatment (she didn't want surgery).  I think the dose has been adjusted (lowered) once in that time - she gets regular blood checks, and monitiors her weight (she's very fortunate in having a metabolism that meand she's been the same within a couple of pounds for the last 25 years, so fluctuations are readily noticed) The only pain is that her dose is such that we now have to split the tablets as the manufacturer has stopped making the lower dose ones (seems to be a trend, it's the same with her Lithium), it's easier for her to manage than varying doses in different days.  Once stabilised she was just the same as before.

[Regulator]

My little sister has similar thyroid problems.  It took her and the thyroid nurse about 6 months to fine tune her dosing but she been fine (as much as a little sister can be) since they got it sorted...

[T42]

No humans in the family have had it, but one of our dogs developed it when he was 5.  He didn't put weight on that we noticed, but he became very sluggish and lost a lot of hair.  A month on levothyroxine and he was bounding round the place again. All the hair grew back, too.

The pills were expensive, BTW - around 100 euros for a month.  Curiously enough, his insurance premium soon matched that.

[morbihan]

I concur with the conundrum of when to take the pill.  I do mornings first thing, then wait at least half an hour before my coffee. With the recent keto shift I'm not chomping at the bit for a bowl of oatmeal etc as I was prior which is good, but the coffee wait is, lets say, noticeable.
During TCR's and big training rides pre keto and I was wanting to fuel up at stupid O clock it was a bit hit and miss. Next race should be okay as without the hangry cravings I can eat the pill, then ride for a few hours before fueling up.

[Ruthie]

Thank you so much ch everyone. This is all really good stuff. I so much want to be bounding around like a puppy!

[arabella]

Interestingly they don't seem to have checked iodine when I had menopause bloods done recently. Unless they just forgot to tell me.  I'll ask when I see the doc on Monday about my one-sided tinnitus (unrelated to menopause)

I didn't realise it was a menopause thing and my dad had some sort of iodine supplement for years iirc

[IJL]

i've never seen iodine tested on blood results
It doesnt seem to be an available request on the computer system we use in the surgery.
i believe there is a 24 urine iodine excretion test but ive never seen it done, certainly not a commmon test in general practice

[Kim]

Shirley the test would be for thyroid hormones, not iodine?

[MikeFromLFE]

A short history of thyroid blood testing (from someone who spent 40 years doing just that)
Once Basal Metabolic Rate tests were abandoned (can't remember all the details, but involved putting the patient in a box and measuring oxygen in and CO2 out) the first worthwhile blood test looking at thyroid metabolism was Protein Bound Iodine, or PBI, this was time consuming to do, expensive and subject to lots of interference from other substances. But, for the patients it was 'just a blood test' and when used alongside other parameters, gave a pretty good diagnostic indication. It measured the iodine that was bound to proteins - that is to say, the 'useful' iodine.
Along came radio-isotopic testing and we could now measure (by about 1979) a 'good approximation' of Thyroxine (T4) using a test kit developed in Amersham in the UK - this became a worldwide standard diagnostic test for a while. But it was labour intensive, horridly expensive and required special precautions for the scientists (me) doing the tests.
At some point in the early 80s advanced immunological radioisotopuc assays were developing which permitted smaller sample sizes, and more importantly these tests to be done on automated analysers - bringing costs down, and improving safety.
Now that the technology and science had improved it became easier to develop the (previously frankly rubbish) tests for Tri-iodothyrine (T3) and these became as good as, and as cheap as T4 tests. Clinicians loved this because it was the days of 'Clinical Bingo' - get lots of numbers and hope to fit a diagnosis round them. Fueled by this assays for 'Reverse T3' & 'Reverse T4' (rT3 & rT4) were marketed to measure analogues of the stuff.
All this was helping research into the best ways of diagnosing the multiple forms of thyroid illness (which are fascinating in themselves) - the limitations of JUST measuring T3 & T4 as both diagnostic and treatment monitoring tools were becoming apparent. This lead to the push to measure (with a marketable test) the hormone that actually controls the thyroid's metabolism - the clinically active stuff - Welcome Thyroid Stimulating Hormone (TSH) to the party!
TSH is present in the blood in tiny, miniscule quantities, but can be detected using immunological (immunoassay ) methods, and today it is quick, easy, and fairly cheap to measure.
I'm not a clinician, and never was, but my understanding is that measuring TSH tells you all you need to know about the functioning of the thyroid and is an excellent diagnostic and monitoring tool. Measuring T3 & T4 is becoming quite uncommon except for diagnosis of unusual conditions (except where patients are being charged per test!). T3 & T4 assays really add very little to the information that doctors get /need from TSH measurement.
Here endeth the lesson.

[MikeFromLFE]

Ps
I've never known of a test (blood or urine) for pure Iodine, nor do I ever recall seeing a request for such an assay.
I can only think it would be useful as a measure of excess excretion over measured intake, but can't think of a diagnostic purpose.
I suppose it could be assayed using old school Atomic Absorption Spectrometry.

[DuncanM]

After Mike's really interesting history lesson, here's what I understand from the perspective of 15 years as a patient:

The usual test is for Thyroid Stimulating Hormone (TSH) and the T3 and T4 version of thyroxine. TSH is produced by the pituitary gland and the level of it tells the thyroid how much thyroxine to produce.
For diagnostic purposes, the comparison between TSH and T3/T4 is the important one - if you have loads of TSH and no T3/T4 then your thyroid isn't responding to the instruction to produce more and you are hypo and may need to take levothyroxine (I guess if you were deficient in iodine this might also be the case). On the other hand, if you have undetectable TSH, but loads of T3/T4 then your thyroid is responding to something other than TSH, and you need to take drugs to return it to normal function (or have it blasted/removed).

The reason for testing T3/T4 is that the range for TSH is quite large, so you can be within "normal" for TSH and still not have T3/T4 in the "normal" ranges. Once you know what level of TSH is normal for you, you can use this to base your decisions from, because TSH is your body's response to the level of T3/T4 you have.

More specifics here: https://www.endocrineweb.com/thyroid-what-are-t3-t4-tsh

[T42]

Thank you so much ch everyone. This is all really good stuff. I so much want to be bounding around like a puppy!

Take too much and you will be.

[MikeFromLFE]

After Mike's really interesting history lesson, here's what I understand from the perspective of 15 years as a patient:

The reason for testing T3/T4 is that the range for TSH is quite large, so you can be within "normal" for TSH and still not have T3/T4 in the "normal" ranges. Once you know what level of TSH is normal for you, you can use this to base your decisions from, because TSH is your body's response to the level of T3/T4 you have.

More specifics here: https://www.endocrineweb.com/thyroid-what-are-t3-t4-tsh

Thanks
I'm not getting into a debate because it's a world I left a decade ago and I have no desire to go back to what stressed me out at the time.

The website you quote gives the American perspective - which is predicated on a 'profit per test' basis - the UK perspective is found at https://labtestsonline.org.uk/tests-index (An index I'm proud to have had a lot to do with in its earliest incarnations).
The reference range for TSH was very wide in the early less sensitive methodologies, but the more recent technologies have much better sensitivity, hence a more reliable reference range, and much less personal variability.
It's my understanding (possibly flawed) that T3 & T4 act differently in the thyroid and it's uncommon to have a thyroid condition that is sensitive to both T3 and T4.
It's the TSH that 'controls' the thyroid therefore that is - for most patients - the stuff that needs to be measured to monitor treatment. This is what the highly regarded shared care Thyroid Register* software used (at the time I retired) for monitoring huge numbers of endocrinology patients across the NHS. 

[DuncanM]

After Mike's really interesting history lesson, here's what I understand from the perspective of 15 years as a patient:

The reason for testing T3/T4 is that the range for TSH is quite large, so you can be within "normal" for TSH and still not have T3/T4 in the "normal" ranges. Once you know what level of TSH is normal for you, you can use this to base your decisions from, because TSH is your body's response to the level of T3/T4 you have.

More specifics here: https://www.endocrineweb.com/thyroid-what-are-t3-t4-tsh

Thanks
I'm not getting into a debate because it's a world I left a decade ago and I have no desire to go back to what stressed me out at the time.

The website you quote gives the American perspective - which is predicated on a 'profit per test' basis - the UK perspective is found at https://labtestsonline.org.uk/tests-index (An index I'm proud to have had a lot to do with in its earliest incarnations).
The reference range for TSH was very wide in the early less sensitive methodologies, but the more recent technologies have much better sensitivity, hence a more reliable reference range, and much less personal variability.
It's my understanding (possibly flawed) that T3 & T4 act differently in the thyroid and it's uncommon to have a thyroid condition that is sensitive to both T3 and T4.
It's the TSH that 'controls' the thyroid therefore that is - for most patients - the stuff that needs to be measured to monitor treatment. This is what the highly regarded shared care Thyroid Register* software used (at the time I retired) for monitoring huge numbers of endocrinology patients across the NHS.

I appreciate your expertise and have no wish to debate - I'm just saying what tests have been done on me and the explanation given. They seem to do T3, T4 and TSH on my daughter at the kids endocrine clinic, and they always did T3, T4, TSH on me in the endocrine department after my surgery and latterly at the GPs. I asked when they first did it, and the range explanation was the one they gave me. Maybe those clinicians are behind the times and doing unnecessary tests, maybe there's some special case for kids/surgical thyroid removal, maybe it's to do with our treatment, or there's something else going on I can't say.

Your link is really good - much better than mine. I was just looking for something that explained the relationship between them more straightforwardly (and most likely more accurately) than I could.

[chrisbainbridge]

I wonder if some of the variation in practise is about "What is normal?".

As an example Vit B12 levels are predicated on and designed to test for haematological problems, even though it is well known (for various values of well known) that neurological problems can occur with somewhat higher levels.  This is important in my field where I se a number of patients every year with unexplained tingling and numbness, who are type 2 diabetics on metformin and Omperazole with levels just above the lower limit of normal and who respond well to treatment.

Similarly (although this may be apocryphal) I understand that Vit D levels are based on mill workers in the North west around the turn of the last century.  They clearly had optimum sunlight exposure and diet!

I also remember a patient a few years ago who came for a hand problem but seemed tired and unwell.  In discussion she told me she was hypothyroid but on adequate replacement according to the tests.  Dredging up my medical school level knowledge I suggested she still seemed hypothyroid and she agreed.  I sent her off to see an interested endocrinologist who confirmed that she was part of the small group who needed the correct isomer rather than the mixture supplied (or something).  Next time I saw her she was a different women.  Moral of the story is "sometimes believe the patient, not the test"

[MikeFromLFE]

Similarly (although this may be apocryphal) I understand that Vit D levels are based on mill workers in the North west around the turn of the last century.  They clearly had optimum sunlight exposure and diet!

Measuring Vitamin D is one of the few things that make me wish I still was in the game.
Up until 10-12 years ago Vit D assays were, frankly, rubbish. You might as well have used a random number generator. New tech have improved the assays beyond all expectations - but - the sheer number of folk who I hear of being diagnosed as deficient on the basis of a single assay makes me wonder what's going on.
Its one of three things
1) Yes they are Vit D deficient
2) The old (>10 year) reference range is still in use
3) The new assays are still rubbish
I suspect (2)

[chrisbainbridge]

If 2 is true then is 1 not probable?

Whilst my colleagues and I are generally fairly cynical about vitamins (we are surgeons!) most of us are now generally recommending VitD to the sallow faced smoker with arthritic pain.  May very well be placebo.

[FifeingEejit]

One of the Women who race MTBs from round here has a Condition that incluides Hypothyroidism
https://www.fifetoday.co.uk/sport/mountain-biker-gillian-overcomes-diagnosis-win-world-title-1111021

Unfortunately she's now also trying to get shot of cancerous cells.