NDT troubles - feeling hypo on too much medicat... - Thyroid UK

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NDT troubles - feeling hypo on too much medication?

ilyfunnybunny profile image
20 Replies

My doctor has been gradually raising my NDT and decreasing my levo, as I take both (currently 25mcg levo and 1.5 grains NDT). She’s been making this change on the basis that my RT3 looks high. I’m not even sure I believe that RT3 is a valuable, or at least an easily interpreted measurement, but I haven’t wanted to dig into that with her because I’m just glad she cares enough to order it.

Anyway, I’ve been experiencing dryness symptoms (mouth, eyes, skin, hoarse voice, etc) that all began when I started taking NDT a couple of years ago. Though the symptoms were very mild at the time, they’ve grown in intensity as I’ve increased my NDT. I’m also to the point where I notice a decrease in energy when the Levo is reduced, even though the NDT is increased to compensate for the change. Could this just be too much T3?

I realize that other problems could be to blame: Sjogrens, vitamin deficiencies, generally under medicated. But the NDT seems so closely related that I wanted to ask if anyone else had knowledge or experience of such a thing.

Below are my most recent lab values, taking 50mcg Synthroid & 1 grain Naturethroid:

RT3: 26 (range 8-25)

TSH: 0.02

T4: 1.2 (range 0.8-1.8)

T3: 3.6 (range 2.3-4.2)

Thank you!

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ilyfunnybunny
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greygoose profile image
greygoose

Difficult to comment without seeing any labs. Can you post the latest on here, with the ranges, please?

ilyfunnybunny profile image
ilyfunnybunny in reply to greygoose

Hello greygoose,

I edited my post above to include those values. Thank you!

greygoose profile image
greygoose in reply to ilyfunnybunny

No, you're really not over-medicated. Both your Frees are in-range. Your FT4 is 60% through the range and FT3 68.42%, so there's even room for an increase if you feel the need. And you haven't given the rT3 result, but the FT4 is not high enough to be responsible for high rT3. So, if rT3 is over-range, there's something else going on, which needs investigating.

ilyfunnybunny profile image
ilyfunnybunny in reply to greygoose

Thanks! Maybe I should return to the 50mcg Synthroid, 1 grain Naturethroid dose those labs reflect, then.

Like I wrote above, I'm currently taking 25mcg Synthroid and 1.5 grains Naturethroid on the suggestion of my doctor. Feeling rather dry, tired, etc... seems to get worse the more NDT I take.

I'll dig in to potential RT3 causes.

greygoose profile image
greygoose in reply to ilyfunnybunny

If you felt better on Synthroid, 1 grain Naturethroid, then yes, that could be a good idea. :)

ilyfunnybunny profile image
ilyfunnybunny in reply to greygoose

Also, re-reading your post I see you missed the RT3 result. I did provide it, value 26 in range 8-25. If that changes your thoughts :)

greygoose profile image
greygoose in reply to ilyfunnybunny

Yes, I did miss that. Sorry. But, no, doesn't change my thoughts at all. As I said, your FT4 isn't high enough to account for that slightly over-range rT3, so there must be something else causing it. But, it's not something to worry about from the point of the rT3. That won't do you any harm in and of itself.

ilyfunnybunny profile image
ilyfunnybunny in reply to greygoose

Hi greygoose,

I've been doing SO many calculations trying to figure out my medication and I suddenly realized that the above maths are a bit off.

My FT4 is only 40% through the range (1.2 FT4 in 0.8-1.8 range).

0.4 (T4 progression through range) / 1.0 (total range) = 0.4

I bring this up because I'm suspicious that low T4 and highly suppressed TSH may be the cause of my problems, and I wonder if you might have any expertise that could help me understand the significance (if any) of T4 that is much lower than T3, or perhaps if there is a recommended golden ratio of T4 to T3 for thyroid hormone replacement.

Thank you for your help.

greygoose profile image
greygoose in reply to ilyfunnybunny

According to this calculator (NOT my maths):

chorobytarczycy.eu/kalkulator

Your FT4 is exactly 40% through the range. But, even if it were 60%, it still wouldn't be high enough to cause high rT3. It would have to be something like 90+% - varies from person to person.

Therefore, there is something else causing your high-ish rT3 other than thyroid. And, it's more that likely that 'something else' causing your symptoms, rather than your dose of levo/NDT.

Whilst it's true that the FT4 being too low in range can cause symptoms in some people - some people need it higher - a suppressed TSH will not cause any symptoms because the TSH doesn't make you feel anything, and it's suppressed because you don't need it anymore. So, I'm afraid you're barking up the wrong tree, there.

Your FT4 is lower in range than your FT3 because of the T3 in the NDT. Taking T3 not only raises your FT3, but lowers your FT4, that is perfectly natural. But, no, there is no 'golden ratio' of FT4/3. Ratios are for healthy people, not hypos. When you're hypo, you need what you need - I, for example, don't need any T4 at all, just T3. So, forget ratios, that has no part in anything. As I said before, you could need your FT4 higher - or, come to that, you could need your FT3 higher - we're all different. But, you will only find out what you need by experimenting with different doses. No-one can tell you what you need.

Or, on the other hand, it could be that NDT just doesn't suit you. It doesn't suit everyone. Have you tried taking T4+T3, which is far more flexible? I think your doctor is being a bit of a ninny reducing your levo on the excuse of your rT3 being high-ish. It doesn't matter if the T4 comes from synthetic levo or NDT, T4 is T4 and will, under certain circumstances, convert to excess rT3. The genius is to find out what those circumstances are where you're concerned. :)

SeasideSusie profile image
SeasideSusieRemembering

ilyfunnybunny

rT3 can be a red herring. It's only usually thyroid related if FT4 is high and FT3 low, which would mean that the T4 is making reverse T3 rather than free T3. There are many, many other reasons for high rT3 that are not thyroid related.

Conditions that contribute to increased Reverse T3 levels include: Chronic fatigue, Acute illness and injury, Chronic disease, Increased cortisol (stress), Low cortisol (adrenal fatigue), Low iron, Lyme disease, Chronic inflammation. Also selenium deficiency, excess physical, mental and environmental stresses. Also Beta-blocker long-term use such as propranolol, metoprolol, etc. Physical injury is a common cause of increased RT3, also illnesses like the flu. Starvation/severe calorie restriction is known to raise RT3. Diabetes when poorly treated is known to increase RT3. Lyme disease. Cirrhosis of the liver. Fatty liver disease. Any other liver stress Renal Failure. A fever of unknown cause. Detoxing of high heavy metals.

Do you have any test results to share (including reference ranges).

We are all different as to where we need our hormone levels to be and when taking a combination of hormone replacement it's a case of tweaking the doses to find the right combination for us as an individual.

ilyfunnybunny profile image
ilyfunnybunny in reply to SeasideSusie

Hello Seaside Susie,

I edited my post above to include my most recent test results. They reflect a dose of 50mcg Synthroid and 1 grain Naturethroid. Thank you!

SeasideSusie profile image
SeasideSusieRemembering in reply to ilyfunnybunny

Is that Free T3 and Free T4 or Total T3 and Total T4.

If Frees then there's no way you are overmedicated and you could even raise your dose of NDT to improve your FT3 level. Your over range rT3 is not due to a thyroid issue, if it was you would have over range T4.

shaws profile image
shawsAdministrator

The problems that arises if we take anything but levothyroxine, is that doctors use the 'ranges' given in the blood tests. The blood tests were introduced for levo alone, i.e. T4 only. Therefore if we take NDT, it contains T4, T3, T2, T1 and calcitonin so cannot correlate to someone who takes levo alone. Also if we take T4/T3, again blood results won't correlate.

When we take other than levothyroxine, it should be the symptoms that are the priority and small adjustments up/down of NDT or T3/T4 until symptoms are resolved. Maybe the following will be helpful:-

naturalthyroidsolutions.com...

The doctor who wrote the above link only prescribed NDT or T3 alone for those who had thyroid hormone resistance. He would never prescribe levothyroxine as he stated it was due to payments paid to doctors/endocrinologists so that levo alone. would be prescribed.

p.s Also doctors are apt to look upon the TSH only which varies throughout the day and it is from the pituitary gland and not the thyroid gland. The doctors assume that if is low we're on too high a dose of hormones and reduce dose and then symptoms can increase

silverfox7 profile image
silverfox7

Little bit of my history and my experiences with NDT. in the 1980’s was diagnosed with hypothyroidism as was my GP as well. He looked into treatment and asked to speak to a chap doing thyroid research so science based and who I was also married to! They did a lot of talking and it was decided that we should both take NDT which the NHS would still prescribe but my doctor wouldn’t left me start until he had tested it out. Now back then you were put on a dose and if it stopped symptoms and promoted wellness then that was your dose. So I started on one grain NDT. Testing was never done back then,it was down entirely to how you felt plus on NDT the body takes what it needs. A few years later I felt that things weren’t so good any more so back to talk to my doctor who added in another grain and wellness resumed! So I had effectively doubled my dose with no issues in doing so. A few years later prolonged strike in Canada so this stopped me getting my medication so I asked to be put on Levo as with a young family I needed to be on the top of things. To be fair I was good on Levo then my doctor went into private medicine so I stayed with it as no one else would put me back on NDT.

Fast forward Tim about 4 years ago surgery not good with thyroid and I was in an area as well that wasn’t brilliant back then but I longed to be back on NDT so decided to self medicate. Now faced with another hospital that hasn’t a clue and my so called expert is attempting to get my TSH up which isn’t going to happen. My dose at the time was over three days which suffered-1.75, 1.75, 1.5 but I’d always been told to take the same dose each day so asa but if an experiment I’ve dropped my dose down to 1.5 grains per day and I still feel good. So shall not confess anything till I’ve had my bloods checked and I’m assuming that even with a lesser dose my readings won’t have changed as my body should be still taking as much as before.

Soon my experience how stand-alone NDT works I think any issues you have will be because you have added in a small amount of Levo. On my experience if I was you I would seriously think of dropping the Levo element and see how you feel. It may well be that the NDT is enough for you or you may have been borderline so you may find it best to add in a little more for stability. But if you do decide to drop the Levo give your body plenty of time to readjust as no point in adding more in unless you are sure you need it. If you are buying your NDT then no point in paying that little bit extra if you don’t need it.

pennyannie profile image
pennyannie

Hello there ilyfunnybunny

Just as an aside, I am with Graves Disease post RAI ablation in 2005 and I too suffer with symptoms similar to Sjogren's Syndrome. which started about 8 years after I drank down the toxic substance

I have had a negative lip biopsy for Sjogren's in 2016 and left with no answers by the NHS.

I have since read that RAI can produce Sjogren's type symptoms so possibly you can, at least, explain away some of what may seem unrelated health issues.

RAI is also known to " trash " your vitamins and minerals.

RAI is a " slow burn " and is also taken up by other glands and organs within the body.

I have found improvement by treating myself with adrenal glandular support and then this past year I've added in NDT and am much improved, and I have dropped completely the Levothyroxine.

I still have some mouth issues, but the extreme pain has lessened and I do now have some saliva. I have had to have several teeth extracted this past year, and see this all as part of the long term consequences of RAI treatment, though no NHS department or person will confirm my thoughts.

P.S.

My reverse T3 came in high and over range when I first tested privately some 2 years ago. I'll presume this procedure still works since RAI and guess this number has automatically lowered itself, as my intake of T4 has greatly reduced since moving onto NDT.

I was on 125 mcg Levothyroxine daily and am now on just 1 + 1/2 NDT so have reduced my T4 daily intake by about 50% and experiencing a much better QOL with the NDT.

ilyfunnybunny profile image
ilyfunnybunny in reply to pennyannie

Hi pennyannie,

I'm sorry to hear about your experience with RAI. I've also had that treatment, after a total-thyroidectomy for papillary cancer. I agree that it can DEFINITELY cause Sjogren's-like symptoms as well as other, poorly investigated side effects.

I think there are a few problems with focusing on the possibility that RAI is causing the symptoms, though.

First, it's impossible to confirm that RAI is causing the symptoms until ruling out all other possible causes, and it's also virtually impossible to rule out an autoimmune disease like Sjogren's, given current testing standards.

Second, it's a problem that's impossible to fix. As you well know, once your salivary glands, (and other organs), are exposed to RAI, the damage is done. Salivary glands are particularly vulnerable, because the radiation seems to target the salivary acinar cells that are responsible for naturally regenerating the gland over time. So there's no going back, at least not until researchers work out how to regenerate/manufacture those glands.

Third, at least in my situation, my dose was rather low, only 50mCi. According to current studies, this dose has a much lower chance of causing side effects than, say, 150mCi. Also, I experienced no side effects at the time the dose was given — when the radiation would have been most potent — and I didn't experience the dryness until nearly five years later. Most people, if they experience side effects, do so well within the 5-year window. So, while it's not impossible that the RAI is the problem here, there's still a good chance that my symptoms are a result of some other factor.

Anyway, that's my thinking on the situation. I do agree that RAI is poison... can't believe doctors recommend this treatment without explaining potential side effects. I used to think doctors were trustworthy, knowledgeable... now I know they're just people. Biased, egotistical, and occasionally, criminally negligent :)

Lora7again profile image
Lora7again

Why are you taking Levothyroxine as well? NDT contains both T4 and T3 and you could just slightly increase that instead. I have taken both in the past and I much prefer the natural stuff because Levothyroxine can give you side effects. I know Thyroid S has fillers as well but it is not artificial.

Here is a link about the side effects

drugs.com/sfx/synthroid-sid...

ilyfunnybunny profile image
ilyfunnybunny in reply to Lora7again

Hi Lora7again,

I take levothyroxine because when I tried going without it and taking just NDT, my T3 went over the range and my T4 plummeted. Plus, for some reason I'm prone to bouts of depression/despondency without my Synthroid. A while ago I thought it was the devil, but now I kind of love it? I go back and forth.

I do think I've experienced side effects from it though, mostly acne. Drag.

Lora7again profile image
Lora7again in reply to ilyfunnybunny

Have you tried Thyroid S?

Lora7again profile image
Lora7again

Here is a link about side effects on NDT

rxlist.com/armour-thyroid-s...

I started to experience a few of those because my thyroid suddenly started to work again so I stopped cold turkey and I then went into remission but it was a slow recovery.

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