I have recently agreed to trial Levothyroxine again as I am becoming symptomatic on T3 alone. I think my issues may stem from other endo issues as well but one step at a time. So my questions are these -
1- how long does it take for the levo to build up in my system, I was under the impression it was roughly 6 weeks but have read comments to the contrary.
2- my endo - who readily put me on 150mg of T4 after I had been on 50mg for a month stating "there is no reason why someone of your bmi shouldn't be on a starting dose of 150mg" also said that "If you don't have thyroid antibodies then you don't really have a thyroid issue and I could also possibly just come off all thyroid meds altogether."
Well from all of the reading I have done over my thyroid journey that felt like an incredibly stupid thing to say. As far as I can tell there are a vast number of different ways that the thyroid can have difficulty functioning on an optimal level. But it can be very confusing when you are in the same room as a person who is supposed to be more knowledgeable than yourself on the subject seeing as its their job and area of study. So I thought I would get your opinions as well!
Any thoughts?
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Rhsana
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My endo said that this was the very reason why I was feeling so unwell - as I had been put on a "homeopathic" dose of T4 and there was no reason why I shouldn't start on 150 having been on 50 t3 for 2 years
150mcg of T4 plus 25mcg (equal to 100mcg of T4) of T3 means you are taking 250mcg of thyroid hormones, i.e. 25mcg of T3 is 'equal in its effect to 100mcg of levothyroxine. So you're on a higher dose.
I'd start on 150mcg of T4 and add 1/4 tablet of T3 every two weeks. Always take note of your symptoms and when they're relieved. That's the purpose of taking thyroid hormones i.e. to remove clinical symptoms and we feel well.
ah ok, I was under the impression I needed the t3 to get me through the days until the T4 built up in my system. Have been very symptomatic - but I was before adding in the T4. So stick with 150 t4 with 1/4 of a tablet of t3 then in two weeks up the t3 to 1/2 a tablet, and so on?
Honestly you just couldn’t make this stuff up sometimes! No way should you start on 150mcg of Levo just because you’ve been on T3.
And absolutely you could have thyroid issues even if it’s not autoimmune.
Take the prescription from him and the start slow and low yourself.
Like many of us you’re going to have to self medicate even though you’re under the direction of a ‘qualified’ ignoramus, I mean Endocrinologist 😬😂
Start with 50, then increase every 6wks till you feel optimal. It’s very subjective as to how long before you feel the benefits. Some take the full 6wks, some feel benefits within 7 days. I took 10 days to feel optimal when I had a T4 increase (I’m on combo treatment). Some initially feel better and then it plateaus and they increase again. Just wait 6wks so that you can evaluate properly.
Errrr I have actually done as endo said and started taking 150 T4 each night but have also kept the 25 T3 as I know T4 takes awhile to 'load up' - slightly concerned now...am I going to be in trouble in 6 weeks once its all loaded up so to speak?
Yeah T4 can take a while to upload but he’s still stupid for starting you on such a huge amount! You should have stayed on your 50mcg t3 and introduced T4 at 25/50mcg every 4-6wks and slowly reducing your t3 if necessary.
What you need to do is publish your FT4/3 results as they stand now.
50mcg T3 plus 25/50mcg T4 (sorry I don’t know how old you are or any health history, 50mcg starting dose in no health issues (other than thyriod symptoms) or 25mcg if you’re over 65? (Not sure of the age offhand) and/or have heart/health conditions.
Retest in 6wks
Depending on results lower T3 and introduce more T4
Retest in 6wks
Repeat until you find your balance. Your optimal levels.
Do you have conversion issues? Who started you on T3? Have tou ever has T4? It’s always best to start on T4 and then add T3. I’m curious as to why you’ve been started on T3 alone. Very unusual.
Ok thank you, I did start on 50 then she upped it to 150 - I have gone back down to 100 T4 and 25 T3 and see how that goes, I am starting to get some of the symptoms I experienced on T4 before - hair falling out even more than usual, stabbing pain in my legs, dry skin, weight gain (but that has been consistent none the less) fatigue, brain fog, anxiety. etc. The endo says I need to give it 3 to 6 months to really see if I can tolerate T4. Is that something you have experience with?
FYI I am 37, started Thyroid replacement when I was 34 - was initially started on 25mg of Levo then tried NDT for about 6 months before adding in T3 over the course of a few months, finally deciding to try just T3, which I have had the best results with. I think I may have T3 resistance as I seem to be able to tolerate a very high dose without any side effects, I only brought my dose down as I was pregnant and agreed to and then thought that I was able to function on said dose so as T3 is increasingly difficult to get hold of thought I would remain on 50mg.
I did self source in the end. My first box was privately prescribed. I was on levo at 50mg highest so no it was never a potent enough dose to see if it was working but at that time it didn’t look as if i was actually converting anything even with the NDT. I prefer T3 only but its becoming increasingly harder to get hold of so I thought as I am not feeling great anyway now would be a goood time try going back
To T4 as I can still supplement with the T3 I still have- as opposed to not being able to source any T3 and be forced to go on levo as that is all I could source. Does that make sense?
It may be there job but really not their area of study. In med school he probably spent about half an hour learning about the thyroid. If he then went on to be an endo, he probably studied diabetes, not thyroid. He obviously knows less than most of us!
If I were you, I would report him, because he's dangerous, and one day he's going to kill some poor thyroid patient that doesn't know any better.
I agree with the others, start low and build up slowly - 25 mcg every six weeks. That way, you can build up a nice little stash for if you want to go higher than 150.
Complete rubbish, obviously. The man's an incompetent. Doesn't know his thyroid from a rice pudding. You could have Central hypo, or hypothyroidism brought on by certain drugs, like lithium, or due to an accident of some sort - like whiplash. And probably a million other causes that we know nothing about. Maybe ask him what his definition of 'a thyroid issue'.
Errrr I have actually done as endo said and started taking 150 T4 each night but have also kept the 25 T3 as I know T4 takes awhile to 'load up' - slightly concerned now...am I going to be in trouble in 6 weeks once its all loaded up so to speak?
Only time will tell. But, if you've tolerated it so far - so far so good. If you start feeling bad, reduce the dose. I think, if it were me, I'd reduce it now. At least cut it in half, and keep our T3. But, in any case, you'll know if it's the wrong thing to do long before the six weeks is up!
Loved baby's expression - is he/she thinking about doctors who don't diagnose or prescribe!
Doctor is wrong.
People who are hypothyroid don't produce sufficient thyroid hormones and in most other countries if TSH reaches 3+ they are diagnosed as being hypothyroid. In UK for some unknown reason to me, the TSH has to reach 10.
If a doctor tests for thyroid antibodies, that means we have an Autoimmune Thyroid Disease - the commonest forum but antibodies are needed to give this diagnosis.
Indeed that is what I thought. So why is she claiming that if I don't have Hashi's I don't have thyroid issues? How can she possibly think that is true?!
"If you don't have thyroid antibodies then you don't really have a thyroid issue and I could also possibly just come off all thyroid meds altogether."
Utter tosh!
Maybe you should send this endo a little gift - the book "Your Thyroid and How to Keep It Healthy" by Dr Peatfield, where he gives lots of reasons for hypothyroidism:
Surgical removal of the thyroid due to cancer.
Genetic - where the thyroid gland doesn't develop properly.
Glandular fever/Epstein Barr virus.
Major trauma - particularly to the thyroid area/neck/head.
Some surgeries.
Pregnancy.
Environmental - deficiency of iodine and possibly other minerals. Environmental toxins - flouride added to drinking water being one of them.
Certain drugs - particularly lithium.
Secondary hypothyroidism where the problem is due to the hypothalamus or the pituitary gland.
And of course iodiopathic.
Maybe email him links to a couple of articles which will help educate him:
Well indeed. I just thought it was ridiculous but thought it better to keep my mouth shut and get the prescription for T4 to see how I fair on it as it is getting increasingly difficult to get T3 and I have been symptomatic of late anyway so though now would be a good time to see if I could tolerate T4/T3. I was then told that at least I was “being reasonable” and she could go on for days about some of the conversations she had had with other patients “sitting in that chair”. I felt like telling her I probably agreed with said patients and that I could go on for days about the lack of real care and awareness from doctors over my thyroid journey… but again thought better of it as my end game is more important.
I just makes you feel like you are the crazy one…..when she was like you probably don’t even have thyroid issues…..and I am like ok then please tell my body to start working properly and stop hurting every single day.
In terms of "building up in your system" it takes c 6 weeks to reach what is called a "steady state" whereby the amount you are ingesting daily is in equilibrium with what your body is utilising and/or eliminating.
Well of course it's utter nonsense to say that no antibodies equals no thyroid problem - but if he's right, I've been taking levothyroxine for 40 yrs when I needn't have, and the sonographer was clearly lying when she said my thyroid had atrophied ..... I guess that he also believes secondary and tertiary hypothyroidism aren't a thing either, and as for someone having congenital hypothyroidism, it clearly doesn't exist.
Clearly with a patient newly starting treatment after however long being hypothyroid,, they wouldn't start on 150 mcg whatever their BMI; but if someone is swapping from an established dose of mono-T3 to T4, in the same way that someone who wasn't hypo is started on c125 mcg post-TT for thyroid cancer, then you would not expect them to start on a low dose eg if someone has been established on say 75 mcg T3, swapping that for less than the equivelant dose of T4 would be inadequate ie you don't treat someone established on T3 in the same was as someone not on any treatment.
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but blood tests have shown me to be either borderline or negative with both.
Could I have Hashi's
HASHI'S, HISTAMINE SENSITIVITY, THYROID
Finally more thyroid results! Is this Hashi's?
How do you know if you have low or high cortisol?
