T4/Levo - Is It Necessary At All?: Hi All, Got a... - Thyroid UK

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T4/Levo - Is It Necessary At All?

Hi All,

Got a two part question for you:

1) If FT3 is the gate to functioning, why do we take any t4 at all? Aside from medical industry politics, is there a physiological or bodily need for t4 medication at all? ( Thought: The healthy unbothered body produces t4, so it can't be useless, no?)

AND,

2) For people who do not convert well, are they in jeopardy from taking just t3, in the same way that so many suffer when taking just t4?

🤔🤔🤔

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Before the introduction of T4 along with blood tests we were all diagnosed upon our clinical symptoms alone and given a trial of NDT (T4,T3,T2, T1 and calcitonin.) We were given sufficient until we felt well with relief of all symptoms.

The pharmaceutical companies I believe saw a way they could make more profits so developed T4 only, which converts/should convert to T3. Some of us don't do so effectively or our body doesn't like synthetic T4. Also big profits from blood tests.

I take T3 only and I don't believe my health is in jeopardy as I have no clinical symptoms and feel well.

On the other hand some try T3 and don't like it.

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T4 is very integral.

I must take it, along with t3 as i no longer have my thyroid gland.

tiredthyroid.com/rt3-7.html

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If one cannot convert T4 to T3 it is useless as it is T3 which is the 'engine'.

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My apologies.

If you have no thyroid gland at all, that's the usual combination T4/T3.

If the synthetics don't make someone feel an improvement they should be offered T3 only or NDT. (probably wont do NDT).

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m.facebook.com/groups/67844...

I most definitely cannot tolerate NDT unfortunately

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Some cannot but may find they have to try several (I did) before finding one that suited them. It could be the fillers/binders that affect some people.

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Hi Gardenofeden. Thank you so much for your reply, and link! I love links so I can read up. Thank you.

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Thank you Gardenofeden! I do not have/do FB. I know; I'm the only person I know who's never even visited FB.com. 🙊

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This is another who doesn't want to join FB. I also know there are several other people too who aren't members..

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tiredthyroid.com/blog/2015/...

Hoping this link will open😊

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Thank you so much for replying Shaws....

Yes, your explanation is so thoughtful and helpful, that's what I'm essentially trying to do, the old school method : hear my symptoms and learn how to navigate meds as needed upon symptoms. My problem though, Is that Im having returned symptoms but I'm hardly on anything.....only 1.25g of Nature Throid, AND sources are saying my lab combination (low iron, low FT3) indicate perhaps non-thyroid issues, which made me wonder if I'm dealing with something aside from thyroid. I'm struggling to figure this out.

A member mentioned several symptoms thy I have being hallmark to thyroid, BUT, low iron can cause thyroid disruption, poor conversion....so the symptoms could very well be thyroid, CAUSED by low iron. So I need to address the iron. No?

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If you have not had all your minerals/vitamins tested I would suggest you do as if anything is deficient it may affect quite a few other things of which we are unaware.

That's what usually happens, we begin on a dose and can feel a good effect and then a week or two later symptoms return. When we first begin a dose, after one or two weeks we increase by a small dose - about a 1/4 at a time until, hopefully, you reach an optimum dose with relief of all symptoms.

Iron, ferritin and folate should be optimal as should B12, Vit D.

One doctor said that nowadays we are restricted to a dose which doesn't alleviate symptoms and that before blood tests were introduced our dose was increased until we were symptom-free.

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For sure....so true. 😊 Shaws, when you get what I call the "scary" symptoms like shortness of breathe, chest pain, adrenal rush, do you up the dose, stop the drug, or stay at the dose you are at? I just categorized the scary symptoms differently from say fatigue or dizzyiness, and I'm not sure how to approach those. When I tried armour thyroid and had chest pains, whew!! I stopped taking that immediately. 🙊 But shortness of breathe, I don't really know what's best to do. You spend so long titrating up, you hate to stop and then have to start alllll the way over if and when you resume medication. That's another reason I'm trying to hang in there with this nature throid. I'm only on 1.25g. And then the whole NTI (nonthyroidal illness) discussion came up nad I just got confused about everything.

*******

Yes my minerals show I am low and hav been for years in ferritin, so I asked for a full panel (TIBC, SERUM, SATURATION, AND FERRITIN) (I have stage 3 endometriosis, and recently I faint and get very weak during menstrual, so much loss now). I'm also low in D, and consistently high in B12 (1400 (211-946), midrange in folate. Mid range in slenium selenium.

None of my minerals are anything to brag about, but my iron, bc it mimics and can cause thyroid symptoms, and bc I lose what I've replaced every month, I'm adamate about getting a doctor to administer the veinous dose.

My iron hasn't changed despite iron intake. However, I just started following seaside Susie's helpful tips on iron, here on this forum. I went up to 18 ferritin from 15 (15-150). While I've improved, it's not enough, so I'm now on this very Sunday trying to go over my lines (LOL) in how I'm going to ask my doc to run am IV infusion. I'm on the boarder of range, so I'm afraid what he will say. But if he says no, I'm not begging, I'm asking my new on/gym. If she says no, I I'll ask another.... I really feel strongly about getting iron asap to see if it helps. I instinctively feel like it will be beneficial; in what specific way, I don't know, but I know it will help.

My D is going up for the first time in years, once I started the sublingual drops. I'm about to go get some of this Texas sun... it's still low, but it's getting better.

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Sometimes when titrating, it might be confusing for us. If we suspect it may be a little too much just drop back for a week or two and see how you feel. We may over-shoot the dose slightly.

I hope your doctor can sort things out for you.

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Me too....me too. Thank you so much Shaws

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Hi. Hope the water is receding and you have managed to get some medication now and so better managed and levels soon return to what they were.

You have done a lot of digging! Well done but don't fall into the trap of trying too much at once and then not really knowing what works and what doesn't. It maybe worse by not giving things a reasonable trial period think we all suffer a little by wanting instant results but patience is needed with some things.

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Hi silverfox7! How ya been?!?! Thank you so much for your well wishes and reply.

I hear you, and I am really trying to "stay put" - not add or do too much too soon, but it's just in the last few days some scary symptoms have returned - the one that bothers me most: shortness of breathe. But I'm planning on staying on the med at least until my appointment on the 18th.

This is what lead to this post:

I just noticed, in the last three days, the early morning dizziness, short breathe, adrenaline rush feeling early in the mornings, after I hadn't had that for so many weeks. I'm only on 1.25g of NDT which made me think perhaps it's an iron deficit?

THEN, (I know this is long) through my research while these new symptoms upstarted, I contacted a Nobel Prize Winning endocrinologist (not to say I believe his status/title makes one all knowing, but I thought maybe he'd be less biased than a standard endocrinologist, since his research is independent) and had an email discussion, where he noted that it sounds to him like I have "non thyroidal illness" common in Type 1 diabetics such as myself, who also have low FT3, elevated rT3 and creatine kinase. He notes elevated antibodies are thyroid related but not necessarily an attack on the gland. He admitted however, that there is no agreement in the field whether NTI or hashis requires Throid treatment. He said that perhaps there is another autoimmune disruption at play. This made menthing adrenals and or iron. But even with our discussion, I didn't leave with any more intel into what I should do. So I decided to continue my meds as they are, and ask for an iron infusion on my next appointment (sept 18), as I have struggled now for decades with low iron, heavy bleeding.

I'm currently reading about adrenals. I posted my saliva results, but everyone differed in opinion as to their interpretation. So I'm attacking the long time low iron as so many of its symptoms mimic hypoT, or can cause or worsen hypoT, and it may be inhibiting my poor conversion. I don't think I can go too far wrong by upping my iron.

All of that too say: I plan to stay at this dose until my next appointment, deal with the short breathe and dizzyness until then, but firmly request the iron to see if that long needed mineral, will help.

*****The water has receded in most parts, the cleanup for the city is expected to take years. Now the US is bracing for hurricane Irma, expected to hit Miami and essentially all of Florida, tonight. South of me, in Mexico, an 8.1 earthquake hit.

(Sorry so long)

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I'm on T3 only I don't think my health is compromised. I take 80mcg in divided doses and I am always below range. I think you have to know your own body.

I have challenged endos. with the same question, why do we need T4, none have given me a answer that would change my thinking.

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Hi Beaton, thank you for your reply.

Do you take a slow release? Or is the split method to give the effect of a slow release?

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Split dose, was 2x40mcg.. now trying 4x 20mcg. as avised will see how it works out.

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So you haven't been splitting for too long? Please let me know, if you remember me, how it goes and how you space it out, once you've gotten your regimine down.

I try to split my NDT; but I wonder if I should take it all at once because I can't seem to have a fully fasted stomach, wait four hours to take minerals and supplements, then another three hours to be on an empty stomach, another hour to eat, another three to empty the stomach to take the second dose of thyroid meds.

It's like my whole day I'm fasting so I can be on an empty stomach for thyroid meds, or outside of 4 hours of minerals. So my second dose, full disclosure, I'm usually not on an empty stomach. 🙊🙊

Ughhhhh!

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I remember you TappedOut.

I was on 2 doses of 40 mcg for some years, never had any problems but someone suggested to divide by four as I still have weight and sleep problems. So just started on this. Seems to fit into my daily routine.

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Ahhhh yes! I remember you too!!! Ok ok . I'm glad you're hanging in there. Well I will be thinking strong good thoughts for you that this regiment goes well. I can only imagine how sick of this you probably are.

I think timing it like this will help you.

❤️

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The thyroid produces T4 and I recall reading a post that said some T4 is needed in its own right but cannot recall the detail.

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Hi Treepie, thank you for replying. Yes, I'm supposedly a poor convertr but I recall someone here saying but being a poor convert or doesn't necessarily mean you don't convert at all. That made me think more about my approach. I'm trying to find something to calm, heck, just two of my gazillion symptoms! 😜

Thank you for replying...

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If you look at the human body as a bucket with a stirrer, then perhaps there is no reason for T4.

Trouble is, it is orders of magnitude more complicated than that.

For example, it is usual to point out that much of the T3 in the brain is produced by converting T4 > T3 within the brain itself. This approach allows the brain, and even highly specific tiny parts of the brain, to have their T3 levels controlled locally - not just rely on the bulk T3 passing by.

Although it is common to suggest that T4 is a prohormone that simply acts as a store of thyroid hormone, I often consider the transport of thyroid hormone as being an important reason for T4 to exist. That is, as T4 the thyroid hormone can travel round our bodies in our bloodstream, across the blood-brain barrier, etc., having relatively little effect on the tissues it passes by (e.g. linings of blood vessels).

The T3 in the bloodstream allows a modest level to be available to the cells it passes by. The cells that need more have the opportunity to grab passing T4 and convert it.

I always worry about T3-only regimes. Not for one moment do I question the need for some people to go down that path, but I suspect that it is something to avoid unless and until proved to be necessary.

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So if T3 is converted in the brain, could taking SSRI's affect its conversion? I've often wondered this, as I have been on Seroxat for many years and wonder if this adds to my symptoms as well as my Hashis

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Hi Mouldyoledoll:

You knowwwww, I don't know, but that certainly is an interesting perspective and good question! I'm literally, putting my phone to the side, and looking in this book I have about neuro and thyroid. (Thyroid Solution, by Dr Richard Arem (he diagnosed my hashis)). He writes much on the effect of brain meds on thyroid and thyroid on brain. I believe I've read the need for SSRIs in many patients declines as improvements upon thyroid via t3 or NDT therapy are well acquired. I'm sorry I do not have an exact quote, but if you google him and or this book, you will see more info on the effect of neural and thyroid on one another.

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A good question. I do not know - and better to say that than come up with speculation in answer to a very clear, and important, question.

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I respect that for sure! I wished I knew more about that neuro question. I hope ur well helvella!

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I have read that Mirtazapine (not an SSRI but an anti anxiety med) actually aids with conversion of T4 to T3...

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Wow! Interesting...I read, I just don't remember where, the same thing and that some patients are able to eventually wean off of the SSRI. But yes, I remember reading that as well, that the neuropathy drugs are taken in conjunction with the t3. That was a good question bc t3 is so closely related to brain function/depression.

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Hi Helvella! How have you been?! Thank you so much. I tend to agree exactly with your explanation. The people who do well on just t3 and who have adverse response to t4, perhaps, I wonder that their body has enough reserve of t4, for that specific body. It's intriguing to say the least. Perhaps they have receptors that do not show in the bloods, that engage t3, giving the clinical impression that they are adverse to t4, when really they don't need additional external t4.

So complex. Thank you so much for your reply. I can't remember but I think it was a chat we had that made me feel more comfortable with my decision, despite being a poor concerter, to try NDT as my first thyroid medication. #AppreciateYou

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I am always asking if a healthy thyroid produces T4 and T3 (mustn't forget minute amounts of T2 and T1 and calcitonin) then why are the medics so hung up on TSH test which essentially tests if your pituitary is working, in my opinion!! I understand that T4 is a storage hormone and T3 is the active form that is used by every cell in the body. Some of us are not good converters, I put myself in that class, don't have enough T3 therefore "run out of steam".

Our bodies store food as glycogen in liver to be converted to glucose for energy at times of high demand. (I know this is over simplified) Insulin use goes up and down during the day according to what we need/use and diabetics can control their levels with injections.

Beats me why thyroidies can't control their levels likewise!! I agree with helvella's comments but would never say that you shouldn't be on T3 only. That is the problem with our thyroid disease and the medics and pharmas, they think one size fits all.

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Hi there crimple! Thank you for your reply. Yes, I am with you and helvella, in my thought on it. And I as a type 1 diabetic further agree with you about wondering how and why thyroidies can't have access to similar mechanisms as diabetics use to monitor and treat with home meters/monitors. The thyroid meds a bit longer in half life than insulin so maybe that's why thyroid doesn't lend itself to the more regular medication dose changes as does insulin, but I completely empathize with your viewpoint. It's so complex with such a spectrum of symptoms and daily changes.

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It must never be forgotten that T4/Levothyroxine is exactly what it says it is - a synthetic, man-made imitation of the genuine T4/Tetraiodothyronine. You could just as accurately say that nylon does the same job as silk. The same can be said of T3. Both seem to have a fairly similar effect on the human body but neither is obviously capable of being 100% equal to the genuine article as their chemical composition is different.

Whatever effect that has on the human metabolism is beyond my comprehesion. What I can, however, say for certain is that the natural products of the thyroid gland have been developed and perfected by Nature over thousands, even millions of years and the man-made version was created yesterday in comparison. That being so, it is perfectly justifiable to criticise the synthetic product but most unwise to meddle with the genuine stuff.

The fact is that there will never be a better product for human use other than from a pig, unless, that is, human NDT can be produced for public use or thyroid gland transplants become possible.

The pharmaceutical industry is meddling with Nature for its own financial gains by refusing to accept the fact that its products are inferior to the natural products. Their influence and their money is used to promote their inferior products. They even proclaim that Armour NDT (the natural product from a pig's thyroid gland) is comprised of synthetic levothyroxine and synthetic liothyronine.

armourthyroid.com/treatment... : “Armour Thyroid Tablets, USP, contain the labeled amounts of levothyroxine (T4)and liothyronine (T3)”

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Hi Panda321! Thank you so much for replying. Yeah, when I first started my thyroid journey a few months ago, I wanted to ask but was embarrassed because I didn't know anything at all, but I wanted to ask about the synthetic components of Armour. I just, and still, thought Nature Throid was a type of natural NDT and armor as the synthetic counterpart. I still don't know. In going to click this link you process and was about that.

Thank you so much! I bet if transplants were possible, with my luck, I'd be "within range" and wouldn't be able to get one! 🙊

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I know nothing about Nature Throid. I take either Thyroid-S or Thiroyd from Thailand. Human NDT is available for sale for research purposes, not to the general public. Don't be too embarrassed to ask anything on the forum, I doubt there is anything that will shock the members and everybody is here to help not to ridicule or criticise those who could be treated better for their thyroid problems.

My endo said to me, IN WRITING, that “the active constituents of Armour are levothyroxine and liothyronine”.

The NHS itself is guilty of repeating this very same LIE:: sps.nhs.uk/wp-content/uploa... where it says: “Desiccated thyroid extract is derived from porcine thyroid gland. One grain contains 38mcg levothyroxine (T4) and 9mcg liothyronine (T3) per 65mg of the labelled amount of thyroid.”

WHY DO THEY ALL LIE????????

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Aw shucks, thank you Panda321! ☺️. Oh my goodness on the Armour T! I believe it. It's so unsettling...

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Hi Panda321

I agree with everything you have said here, the failings of the NHS on the subject of thyroid disease is so depressing! I have recently been so poorly have had below range free t3 for over 2.5 years but battling with my GP & endo got me nowhere! I have managed to source my own t3 from Greece a few days ago & have started introducing this along with my levo 100mcg dose last 4 days. But I originally tried to source NDT from Thailand a couple of times/different recommendations but felt like suppliers were trying to scam me, as I received emails requesting money direct in to there foreign bank account/pay pal accounts therefore did not pursue! Do you know if this is how they do business? Is it legitimate & safe? If possible could you private message me your supplier? Thank you in advance for any advice/information

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I have bought quite a few things from China, Thailand and India from Ebay and Ive never had any trouble at all. They all seem only too pleased to be doing some sort of business even when some of the things you buy cost only a single penny with free postage. I have more trust in them than I have in the NHS!

I will PM you a few sites that do sell NDT but I can give no recommendations. You can probably find a few more if you are imaginative with your search parameters. It is certainly getting rather more difficult to get NDT recently. I wonder if those who have chosen to create such havoc actually sleep at night.

The one at the top of the list is popular with some, but the seller charges a premium price.

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