Thyroid poisoning

[Awen]

Saw my endo on the 3rd. Now, after 8 weeks, he tells me I’m suffering from thyroid poisoning. Great! For 28 yrs. he’s been saying I have a resistance to thyroid medication. 8 weeks later, he cut my dose in half. Now, I’m taking .15mg. Synthroid. T3 is fine. Why didn’t he figure this out sooner? I almost died in late Nov. I’m unable to get any blood work done, until my system clears out and begins to stabilize. Will post blood work next mo. Just proves you cannot trust any dr.

[bantam12]

Do you have any past blood results to share ? easier to answer if we have all the details.

[ShootingStars in reply to bantam12]

Yes, you should always get copies of all of your blood tests. This is one of your rights as a patient. Sometimes they are viewable online. Call the doctors office and tell them you need your copies of all of your lab work. You need to be on top of what your levels are. Doctors make mistakes all the time.

[greygoose]

Sorry, but what exactly is 'thyroid poisoning'? Is it something he just made up because he doesn't really understand what's going on? Or, did he just mean you're over-medicated?

What does a 'fine' T3 look like? And if your T3 is 'fine', why does he think you're over-medicated? And, what was it that nearly killed you in November? And how will you know that you have 'stabilised' if you don't do any blood tests? This all sounds like an endo fantasy, to me, not something based on fact. I think we need a lot more detail before we can help you in any way.

So, what was your diagnosis?

How much synthroid have you been taking, and were you taking before he cut it in half? 15 mg is rather doubtful, and 15 mcg is unbelievable. You might just as well take nothing at all!

Can you post your last labs so that we might get an idea of what your endo means by 'thyroid poisoning'?

I think he's making it all up as he goes along!

[helvella Administrator in reply to greygoose]

greygoose,

Think Awen meant now on 150 micrograms (0.15 mg) - must have been on 300 micrograms (0.30 mg).

(I have no idea why some systems use numbers which need decimal points. And omit the zero before the decimal point. And make .10 look smaller than .025! )

[Hidden in reply to helvella]

I recently raised the (annoying and confusing) lack of zero before the decimal point, in one of the LDN FB groups and was told that in the US it's not taught as standard practice - yet even the US members of the group frequently misread doses without the zeros, never mind the UK members used to seeing the zero.

[helvella Administrator in reply to Hidden]

Just use micrograms for doses of less than 1 milligram! That's my rule.

[helvella Administrator in reply to Hidden]

NoMoreT3,

Until fairly recently, I had thought this a predominantly USA issue. With most European products using micrograms, hence nice simple positive whole numbers. But we had the release of Teva levothyroxine as a 12.5 microgram tablet. Whereas Uni-Pharma do theirs as 12 micrograms. From my point of view, 12 is simpler for end user. (And the extra 0.5 microgram could be dealt with by convention - e.g. it is really 12.5 but they say 12 for simplicity.)

Then I noticed quite a few EU products as 0,100 mg and similar - and was thrown down into the cast of despond. Yes - leading zero there! Yes - confusing-to-decimal-point-convention-people use of comma. But the worst by far is use of milligrams.

[Hidden in reply to helvella]

helvella Yes, I too had assumed that it was predominantly a US "thing" as it certainly seemed to be, within both the LDN groups I was a member of at the time. After countless readings of horrified members writing "You take HOW MUCH?" because they'd misread the zero-less numbers, I was driven to ask the question "why no leading 0?" - phrasing it in such a way as to (hopefully) hide my utter frustration lol! However if commas are now replacing full stops, and milligrams are gaining ascendency, I hope you don't mind, but I'm joining you in your trough of despond where perhaps we can raise our spirits with a rousing chorus of Too Be a Pilgrim ...😂

[greygoose in reply to helvella]

Yes, leaving off that zero really is annoying - especially as some people even forget the decimal point! Totally confusing to brain-fogged reader!

[helvella Administrator in reply to greygoose]

greygoose,

And many also type mg when they meant mcg (and vice versa). Which is why I try always to type microgram in full - even when full of typos it looks different to "mg".

Doesn't help that many fonts have very small, subdued full-stops/decimal points. Guess that is why so many countries preferred using commas - they are bigger!

[greygoose in reply to helvella]

Yes, they use commas in France.

But, even typed in full, I suspect many people don't really understand the difference between mcg and mg. It can be very confusing if you're not mathmatically inclined.

[Marz in reply to greygoose]

I'm not - But can draw pretty pictures !

[greygoose in reply to Marz]

Oh, me neither! And, I can't even draw pretty pictures! lol

[Marz in reply to greygoose]

Beauty is in the eye of the beholder - 😊

[Hidden in reply to helvella]

Scientists use the Greek 'mu' letter (looks almost identical to a u) to represent micro, so really it's μg for micrograms, but I suspect 99.9% of posters don't actually know that either. If one uses ug for micrograms it makes it far easier to differentiate from mg which is milligrams, but probably no-one would know what was meant!

[helvella Administrator in reply to Hidden]

Jadzhia,

And even very experienced computer users can hit a brick wall when trying to use mu/μ on a phone.

dropbox.com/s/q00vyt5703f4u...

[Hidden in reply to helvella]

Yes, I expect phones don't help! I'm a dinosaur in that respect and don't use one for forum posting.

[twinks in reply to greygoose]

I read that as "brain frogged" Oh dear... croak

[greygoose in reply to twinks]

lol

[Geriboo29]

Went for a review I’m on 125micro grams Thyroxin. Told to take it 1 hour before any caffeine and not take the calcium tabs with it at all.

nearly 20 years and now they’re telling me I’m doing it wrong.

[ShootingStars in reply to Geriboo29]

For proper and maximized absorption, thyroid meds are to be taken on an empty stomach, with at least 4 hours of not eating before taking meds. This is followed by at least 1 hour of no food and no other drink than water. Do not take calcium or iron pills until at least 4 hours have passed.

If someone has ever told you the opposite is ok, they are incorrect.

[Geriboo29 in reply to ShootingStars]

Never been told anything about when to take or what not to take with them till the other day..

[Marz in reply to Geriboo29]

Reading the posts here you will see it mentioned most days

[Clarrisa in reply to ShootingStars]

My oatmeal was it is 10 percent iron (daily value). Cheerios 45 percent iron & 10 percent calcium (plus milk). Is our thyroid medication just adjusted for our meal plans?

[ShootingStars in reply to Clarrisa]

I'm not sure what you mean by thyroid medication being adjusted for our meal plans. Thyroid hormones are not part of our daily nutritional requirements, whereas various nutrients are. Whatever dosage of thyroid medication you have been prescribed, it's prescribed as being 100% of your daily value of thyroid hormone replacement. Taking it with any food or any drink other than water means you are robbing yourself of some your daily value, and you're not receiving 100% of your thyroid medication. It's not meant to be taken with food or any drink besides water. If you are taking it with food or coffee, or taking food or drink less than one hour of taking your medication and you still have hypo symptoms, there is a good chance that that is why.

[greygoose in reply to Clarrisa]

That would be far too complicated for the majority of doctors!

Just leaving an hour for the levo to leave the stomach, before eating should be sufficient. The amount of iron and calcium you get in cereal, is not the same as taking a supplement, so shouldn't be a problem after an hour. Besides, the iron and the calcium in Cheerios will cancel each other out!

[Glen202 in reply to Geriboo29]

I take myThyroxin 150mcgms before bedtime, no problems, I find it works better while I sleep, I used to take it in the morning but it made me feel terrible all day long.

[Geriboo29 in reply to Glen202]

Thanks will try this

[ShootingStars in reply to Glen202]

As long as you haven’t eaten or drank any thing but water for 4 hours, then your stomach is empty enough to absorb your medication fully. Otherwise you are not getting full use of your medication.

My very first day of meds, I picked up my meds from the pharmacy in the afternoon. I was so desperate for thyroid hormones, had to fast 4 hours so I could get it on board as soon as possible. It was very hard to fast 4 hours! I’m used to eating every few hours. But I was so happy to get those thyroid hormones!

[shaws Administrator in reply to Glen202]

Many prefer bedtime dose. If having a blood test next a.m. you miss bedtime dose and take after test and dose as usual the same night.

Geriboo29

[SilverAvocado in reply to Geriboo29]

I had a friend who hadn't been told for 30 years! Was taking his thyroxine with coffee every morning! Really shocking that no GP or pharmacist would have mentioned it even once in all that time.

[DeeD123 in reply to SilverAvocado]

SilverAvocado , so was I. Never had an issue with it though. Now know different. Was only told milk would prevent absorption as I took it black I assumed it would be ok 😄

[jkozlow3 in reply to SilverAvocado]

While coffee can interfere with absorption, consistency is what matters. If you take your thyroid meds with coffee every day, that's not really an issue if the dose has been adjusted accordingly (i.e. you may need 12-25 more mcg) to achieve the same TSH/FT4 vs. taking without coffee).

At one point, I changed my morning routine from no coffee for 30-60 minutes after taking Synthroid to drinking coffee just a few minutes after taking my thyroid meds. As a result, I had to bump my dose from 125 mcg to 137 mcg for example to make my blood work values the same.

[SilverAvocado in reply to jkozlow3]

Jkozlow3, unfortunately there is no research to back up what you're saying. We know that coffee reduces the efficiency of the hormone getting into your blood stream.

What we don't know is any more detail than that. It could be the simple story you are suggesting, that some fraction of the dose you take is just sliced off, and it's the exact equivalent of taking a lower does. Or it could reduce your bodies ability to utilise the hormone in more complex ways we don't know about.

To distinguish between these two possibilities would require research and understanding. But unfortunately there is very little research into how foods impact the utolosation of hormone. Personally I'd love to know whether all foods have as much impact as the few, like coffee, that have been demonstration.

If you are completely well and your hormone is working perfectly then you might as well carry on doing what you're doing. But forany anyone with lingering symptoms then it's the first thing to change to improve the effectiveness of the hormone.

[Kell-E in reply to jkozlow3]

I agree. I have had several docs and my surgeon tell me that same thing. So I enjoy my morning dose with coffee and adjust accordingly!

[jumped in reply to SilverAvocado]

I have been on it for 23 years, no doctor or pharmacist has ever told me I should take it this way. \I always took it with my other meds, after breakfast.

[SilverAvocado in reply to jumped]

Really shocking

[LAHs in reply to jumped]

Yikes!

[ShootingStars]

In the US, thyroid meds are prescribed in mcg.

[Glen202 in reply to ShootingStars]

Same in New Zealand unless they are big pills then it's milligrams.

[helvella Administrator in reply to ShootingStars]

ShootingStars,

... but!

At least some USA levothyroxine products show 25 mcg (0.025 mg) on their actual labels. And with a zero before the decimal point!

dailymed.nlm.nih.gov/dailym...

Given that the micrograms are given precedence on the label, I continue to be perplexed why so many people quote dosages in milligrams. You can find milligrams used on no end of websites and not just patient forums.

In the UK, we pretty much never use milligrams for thyroid hormones in any context.

[ShootingStars]

You are right. You can’t trust any doctor. Including this one. This all sounds strange. What is thyroid poisoning? That is a huge cut in meds. At that large and drastic of a cut, you might not stabilize, but might be thrown into extreme hypo symptoms. What do you mean you’re unable to get blood work done? You certainly can and should! You still need to get your blood work done to make sure your levels do not drop too low. If it were me, I’d do it in 4 weeks, not waiting the standard 6 weeks after a med change. Again, proving you cannot trust any doctor. Proceed with great caution.

[Glen202 in reply to ShootingStars]

I think that Dr meant to say thyroid poisoning is an overdose of thyroxin, he should really use terms that are easy for the patient to understand.

[ShootingStars in reply to Glen202]

Who knows. Never heard that term in my life. That’s enough to send a patient into a panic, “thyroid “poisoning””. 🤯 If he meant over medicated, he should have just said it.

[Geriboo29]

I’m on Cancer meds which reduce my calcium and put me at risk of osteoporosis. Bone density is already an issue.

[Marz in reply to Geriboo29]

When taking calcium it is so important to take VitK2 - which directs calcium away from the arteries and into the bones and teeth.

Wonderful book you can buy on-line - Vitamin K2 and The Calcium Paradox - by Kate Rheaume-Bleue. Lots of interesting information - even mentions that bone loss happens more in the winter months - lack of sunshine maybe ?

K2 is a relatively new vitamin and is produced from K1 which is in the grass animals eat - when allowed. Hence it is now absent in our diet

[susiebow]

F

[Karen154]

Hi, sorry to hear that you have been so ill. I'm having major problems with Dr's also and NHS lab are rejecting requests to do tests. Can I ask what your symptoms were and did you feel you were being poisoned before this was diagnosed.

Hope your starting to feel better now.