Total thyroidectomy, NDT: I had a total... - Thyroid UK

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Total thyroidectomy, NDT

Kell-E profile image
9 Replies

I had a total thyroidectomy in 2011. Photo shows labs since then. B12 473, Vitamin D 37, no ref ranges. No ferritin test YET. I will ask for in next labs. After spouting all the official USA guideline crap about my TSH showing I am getting too much thyroid hormone, I argued with everything I've read about RT3 and cellular transport and TSH being a horrible measure, etc. I wanted her to increase my cytomel and decrease my levo because I think I have an RT3 issue. Out of the blue she suggested NDT, which I have just started on 2 grains of Nature-throid. So, we shall see if this improves anything. Already I am not falling asleep at 10 am. Yippee! So, there are actually endos in this world who have a clue although they may not initially let on...

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Kell-E profile image
Kell-E
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Clutter profile image
Clutter

Scottbnk,

rT3 is mid-range so you don't have a rT3 issue.

TSH was suppressed, FT4 is less than halfway through range and FT3 is only 25% through range but FT4 and FT3 will change now you are taking NDT. FT4 will almost certainly drop, perhaps even below range but as long as FT3 is good around 3.4 - 4.4 it is fine. FT3 in the upper range usually means TSH will be suppressed.

B12 437 is unlikely to be deficient but if you have symptoms of deficiency in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice.

VitD 37ng/ml is sub optimal. Optimal is between 40-60ng/ml so you may want to supplement 1,000iu D3 daily.

Kell-E profile image
Kell-E in reply toClutter

rT3 is mid-range, but the ratio of FT3 to rT3 is 13.68, which in some circles is considered sub-optimal (20 or more is the goal). That makes sense because they are both competing for the same receptors and the ratio seems like a more accurate pic than just the rT3. As you can see, my TSH has been suppressed on any amount of cytomel, regardless of FT3 level.

I am supplementing with 5,000iu Vit D daily as it is...

Clutter profile image
Clutter in reply toKell-E

Scottbnk,

TSH is suppressed because of the dose/s you have been taking. The only to raise TSH is to reduce dose but that will reduce FT4 and FT3 too. Some people have very low TSH on thyroid replacement. It's not a problem as long as FT3 remains within range. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

I can't help with rT3 ratio but have a look at these links, particularly TiredThyroid who usually speaks sense google.co.uk/search?q=what+...

Kell-E profile image
Kell-E in reply toClutter

TSH is much more sensitive to T3 supplementation than T4. My TSH is suppressed when Cytomel of any dose touches my lips. To the extent that at one point my endo acknowledged that TSH testing is basically of no value when you are taking T3.

I have read much about rT3. In fact there was a fantastic paper posted on this forum 2 days ago...a paper which I had already read and forwarded to my endo.

Here is the link, it's a great read.

nahypothyroidism.org/thyroi...

jgelliss profile image
jgelliss in reply toClutter

Clutter I agree with you. TiredThyroid is one of the most sensible and well researched books on thyroid matters . It's more like a thyroid text book. Endo/Dr's ought to read it and practice it too . Thyroid patients would be very grateful .

Following a total thyroidectomy, most, if not all, patients will never feel well totally irrespective of what any blood tests may show if they take levo on its own. If T3 is added to the levo it really needs to be a substantial amount not just a tiny bit.

Kell-E profile image
Kell-E in reply to

I agree. When you say T3 needs to be a substantial amount, can you give an example? NDT is 4:1 inherently, but I think I will need additional T3 with it.

in reply toKell-E

That is the sort of ratio that I mean. A Consultant endocrinologist offered me the combined treatment in that proportion, so there can't be much wrong with it. He made that offer only because I knew all about their scheming excuses concerning NDT and T3, argued with them and made a nuisance of myself. I consider these actions to be perfectly justifiable in view of the fact that they ruined my retirement by keeping me ill for years and made no effort whatsoever to correct the situation by themselves. By "they" I mean Allt the GP's and endos that I have ever seen.

As I want NDT on NHS prescription and already know that levo does nothing except keep me alive, there's no way will I ever partake of the stuff ever again. I refused the offer of course.

I hope you manage to sort yourself out. The main advice I can give you is that you won't get anywhere without learning about the thyroid and doing the same as me - make a complete nuisance of yourself but never use swear words, just convincing and truthful arguments. They know they're wrong.

Ladymadonn1 profile image
Ladymadonn1 in reply to

Hi, 4 weeks ago I had a total thyroidectomy, on levothroxine, blood pressure and ldl chorestrol are high. (I eat healthy) I want to change to ndt, how do I go about it with the nhs, I'm seeing my surgeon in 3 weeks, greatly appreciate helpful advice

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