Reverse t3: I've been reading about this as... - Thyroid UK

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Reverse t3

dawnuk profile image
45 Replies

I've been reading about this as trying to where can I what is going wrong with my thyroid I've read that with this reverse T3 your ferritin and B12 levels are very low which mine are so I'm starting to question if this could be a possibility into why my levels are as they are -- B12 347. (191-663)

Folate 11.5. (4.6-18.7)

Vit d (62)

Ferritin 19. (10-150)

Tsh 0.13. (0.27-4.20)

T4 12.3. (9-26)

T3 3.2. (2.8-71)

I've been on levo for 5 years and my levels still on sorted my doctor won't send me to a endocrinologist even though I see different doctors are still can't find one to refer me I think it's been long enough that my levels have been all over the place so tomorrow I'm going to give them one last chance to refer me if not I'm going to do a complaint to the practice manager to get referred

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dawnuk
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45 Replies
puncturedbicycle profile image
puncturedbicycle

Ok, I think you feel unwell because your nutrients are a bit out plus your t3 AND t4 are woeful. Is the second number in the t3 range meant to be 7.1? If so, your t3 should be more like 6.

How much levo are you on?

I understand you want this sorted out but sadly I doubt an endo will do it, or at least not a conventional endo. I'd focus more on getting your folate, ferritin, b12 and d up to much higher in range (b12 can be over, it is excreted quickly). My ferritin was 19 and I felt completely pants. You're close to a serious deficiency (some people get an infusion at 10). Then when those are sorted you may not only start feeling better but your levo may start working better for you.

dawnuk profile image
dawnuk in reply topuncturedbicycle

These levels are also while I have been on supplements, so dread to think how low they would be without the supplements. I'm on 200 levo.

puncturedbicycle profile image
puncturedbicycle in reply todawnuk

Hmm, no that's not good. What supplements are you taking? The usual recommended maintenance doses (eg 800 units vit d, 1000 b12 etc) are probably not going to help much.

Your d isn't too bad, or at least it's good enough that it won't be too hard to make it a bit better. D deficiency can be hard to get on top of, but where you are now you should be able to top up. Take it w some fat, like your fattiest meal or some buttered toast.

Folate could be better but ferritin is truly dreadful. Are you taking iron w vit c (it helps absorption)? Any chance you have coeliac? If you're on supplements you're not absorbing them all that well.

dawnuk profile image
dawnuk in reply topuncturedbicycle

I'm taking 200mg of ferrous sulphate a day with 1000mg vit c

puncturedbicycle profile image
puncturedbicycle in reply todawnuk

dawnuk according to this link you need to be taking that dose three times a day: evidence.nhs.uk/formulary/b...

Maybe if you're going to be taking three times per day take w less vit c or you may find your gut a bit overactive, which will rather defeat the purpose.

dawnuk profile image
dawnuk in reply topuncturedbicycle

Is it worth upping the iron? As happy to try anything at mo

puncturedbicycle profile image
puncturedbicycle in reply todawnuk

I think so. Being so low in iron can make you feel properly rubbish. Did you read the guidance in the link? If I'm reading it correctly it says 3X per day on that dose.

You can always try it for a couple of months. I'd keep an eye on it, just so you don't go too high (though the state your iron is in now it seems unlikely). Do you plan to monitor it if your gp won't?

The only other thing I'd keep in mind is if you take 3000 units vit c every day you may be running to the loo, so maybe if you have a tablet you can break into threes, or if it's powder, only use a third for each dose of iron.

MrsRaven profile image
MrsRaven in reply topuncturedbicycle

I was on 800iu of VitD, and still became seriously deficient. But the rheumatologist wouldn't up the dose, so I buy my own now and take between 1000 abd 2000 a day. My levels are ok now. B12 was bumping on the bottom. The "wise" endo said its fine, its in range. So I bought sublingual methylcobalamin at 5000mcg, and now feeling better. Not perfect but better.

puncturedbicycle profile image
puncturedbicycle in reply toMrsRaven

Yes MrsRaven 800 is an outdated guideline. For maintenance of good levels I believe 1000 is current, but not for people who are trying to avoid falling back into deficiency. And if you are actually deficient, even high doses may only help very slowly. Most doctors don't find any of it very important (er, cancer anyone?) so don't seem to bother to learn the guidelines, though maybe that is changing.

If you're still struggling w b12, I found self-injection helpful where oral supplements never relieved symptoms.

MrsRaven profile image
MrsRaven in reply topuncturedbicycle

My levels are high end now. My rheumatologist originally prescribed it, but I think the problem started when the new surgery changed me from liquid in capsules to tablets. Even the endo ssid it was too low.

Heloise profile image
Heloise

Hi Dawn, T4 (whichever form you take) always turns into free T3 or reverse T3. You need high levels of ferritin to become free T3 and correct levels of cortisol. I can see why you cannot get good readings of your thyroid tests as you don't have the proper cofactors.

Perhaps you need better forms of B12 and folate which would be methylcobalamin and methylfolate.

youtube.com/watch?v=14aoImF...

greygoose profile image
greygoose

Dawn, with those levels, your problem is not rT3, which stops T3 getting into the cells. Your problem is an absorption problem that stops your T4 getting into your blood. You don't even have a conversion problem, so it's not the low nutrients causing it. Your problem is that you aren't absorbing anything.

Do you have gut/stomach problems - GERD, Coeliac, etc? Are you taking PPIs? Do you have low stomach acid? Because that's where your problem is, in the digestive tract.

dawnuk profile image
dawnuk in reply togreygoose

I'm really not sure on stomach issues. How can I find out. I do get pain in stomach more so the last couple months.i take fluxotine but tempted to stop them as I personally don't see improvement with anxiety

greygoose profile image
greygoose in reply todawnuk

Given that your depression/anxiety will more than likely be due to your low T3, I cannot see how fluxotine could possibly help. But, you have to wean yourself off them. Don't just go cold turkey.

To test if you have low stomach acid - and this is not very scientific, but a good guide - try mixing half a teaspoon of bicarbonate of soda with a glass of water and drink it. Then see how long it takes you to burp. The longer it takes, the lower your acid.

There are all sorts of blood tests and biopsies for Coeliac, but you could just try going gluten-free and see if you feel any better. It could improve your absorption.

dawnuk profile image
dawnuk in reply togreygoose

done that test lol, tasted a bit vile, 3 mins and nothing yet lol

greygoose profile image
greygoose in reply todawnuk

Then you have low stomach acid. Try taking half a teaspoon in a glass of water; with honey. That should increase your acid and improve your digestion.

dawnuk profile image
dawnuk in reply togreygoose

16 mins it took

greygoose profile image
greygoose in reply todawnuk

wow!

in reply todawnuk

how old are you? Based on my age I am so scared to take iron supplements. I am 61.

dawnuk profile image
dawnuk in reply to

I'm 38 x

greygoose profile image
greygoose in reply to

What are you scared of, Ayorkor? I'm 71, and I take iron supplements. Have you had your ferritin tested?

in reply togreygoose

Well then how much do you take and what is optimal for you . I am scared of iron overload which I know can be dangerous. Older woman require much less right? Any other side effects besides constipation?

greygoose profile image
greygoose in reply to

You should take what you need. If you don't need any, don't take it. Get your ferritin tested, and then you will know what YOU need. But, if you need it, there's not point in being scared of taking it, just because of your age.

No, I don't think elderly women need less. We all need iron, and if your iron is low, our thyroid hormone replacement won't work correctly. But, get tested first. :)

dawnuk profile image
dawnuk in reply togreygoose

over 5 mins and nothing, but feel like my tummy is bubbling up inside

LAHs profile image
LAHs in reply togreygoose

Hi gg, I just did your test. 4 mins and counting, I guess I have low stomach acid. Not surprised, I don't eat enough fresh fruit. I'd better eat more fish and chips soaked in vinegar, Yum!

LAHs profile image
LAHs in reply toLAHs

Thar she blows! Took 5 minutes but it worked! Good test gg, I have to increase my acids input. Thanks.

dawnuk profile image
dawnuk in reply toLAHs

Mine was 16 mins lol

greygoose profile image
greygoose in reply toLAHs

I don't think fresh fruit has anything to do with it. The vinegar might help, though! lol

dawnuk profile image
dawnuk in reply togreygoose

Is 16 mins bad? Anything I can take to improve things

greygoose profile image
greygoose in reply todawnuk

As I said above :

"Then you have low stomach acid. Try taking half a teaspoon in a glass of water; with honey. That should increase your acid and improve your digestion." :)

Oops! lol I didn't say half a teaspoon of what! lol Half a teaspoon of apple cider vinegar. Not feeling top notch today, think I've got a chest infection...

dawnuk profile image
dawnuk in reply togreygoose

How often would I take it. Daily? Sounds disgusting lol hope your better soon xx

greygoose profile image
greygoose in reply todawnuk

Before every meal. I agree, it does sound disgusting! lol But a lot of people do it.

puncturedbicycle profile image
puncturedbicycle in reply todawnuk

dawnuk, was that prescribed by your gp or a psychiatrist? Fluoxetine is not the ideal AD for anxiety as anxiety is one of the recognised side effects. I feel like I see this all the time here, anxiety being treated w fluoxetine. A lot of people feel jittery on it.

Sorry if this is not applicable but you do know about taking your meds well away from supplements?

dawnuk profile image
dawnuk in reply topuncturedbicycle

gp, it was given to me after mum died, but i honestly dont think it does much for me at all, yes i take levo in morning and flux evening, but i am going to start lowering dose to come off as seems useless

dawnuk profile image
dawnuk in reply togreygoose

Is there any way of knowing about stomach acid

dawnuk profile image
dawnuk

Daily I am taking b complex b12 5000mg iron 200mg vit c 2000mg d3 5000iu and k2 100mcg. I was on all these before my last blood tests so my levels seem low considering I'm on a decent amount of supplements. What can I do? What can I do if its absorbing problem

puncturedbicycle profile image
puncturedbicycle in reply todawnuk

You could try being gf for a while (I'd give it six months) and then retest. Or ask for a gastro referral. It seems worth finding out about if you're taking all these supplements and they're just going through you.

dawnuk profile image
dawnuk

I have suffered alot with burning pain in stomach and even went a and e and drs but nothing come of it. Like I have the pain now, can only describe as burning

betterlf profile image
betterlf

These two products stopped my digestion and absorption problems...digestive enzymes (2 with each meal) and HCL (both are available on Amazon).

dawnuk profile image
dawnuk in reply tobetterlf

Great maybe worth trying?

LIBBY0828 profile image
LIBBY0828

All carriers have nurses to discuss medical issues, call your insurance carrier and speak with this person.

dawnuk profile image
dawnuk

feeling very pissed off today, went to the doctor once again to ask to be referred and this dr once again said no, my levels for everything are "normal" so they cant refer me as nothing the endo would do as my levels are normal, making me so mad

puncturedbicycle profile image
puncturedbicycle in reply todawnuk

I think they're probably right. I'd avoid the endo at all costs if I were you unless something is very much out of the ordinary. They'll tell you the same thing the gp is telling you but not as nicely (or at least this is a common experience).

dawnuk profile image
dawnuk

If I'm not absorbing levo is there any point still taking 200 a Day. Can taking such a high dose cause any other medical problems or stresses on other organs or is it best to stick on 200

puncturedbicycle profile image
puncturedbicycle in reply todawnuk

I believe if your test results don't show you're overmedicated and you have no hyper symptoms there is no reason why you shouldn't take a higher dose. We all need as much as we need.

I admit I don't know a lot about this, but someone here suggested a urine test to show how much of your meds you're using. I don't remember the details, but it might be an idea to look into that.

I may have asked this before but have you thought about adding t3? Your t3 is low and if your levo isn't working well I'd give it a go. It changed my life.

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