back to T3 only.

[Naomi8]

I was on thyroxine from 1997 to 2015.I had a 2 year depression from 2011-2013.This was followed by 2 years of profound fatigue,both mental & physical.

In 2015 I moved onto T3 only.My mood improved,mental & physical energy improved.Heart symptoms improved.Other symptoms improved eg hair shedding stopped,though my hair has not thickened up.

After over a year on T3 only,I tried adding some NDT into the mix in April.I stopped after 5 weeks,as constant ectopic beats returned,supraventricular tachycardia episodes returned & worst of all,anxiety-worst on waking,improving as the day wore on,plus low mood.

Just tried adding NDT in to the mix again-this time not trying to raise above 1grain for the 5 weeks I trialled it.I have had to stop again,due to the return of constant ectopic beats,episodes of tachycardia & worst of all-bad anxiety on waking,after disturbing dreams,plus low mood.

I had a 24 hour cortisol test in 2012 which showed high cortisol in the morning.My symptoms are the same.It appears that I am unable to convert the T4 in NDT in even small amounts.

Anyone on the forum had similar reactions?

I will be sticking with T3 only,now.I had hoped that using Paul Robinson's circadian rhythm had improved my adrenals enough to tolerate some T4 again.

[Tigreg]

How much T3 only will you be taking?

[Naomi8 in reply to Tigreg]

I have been on 55mcgs for a bit now.I take it at 5.30-6 am & 6pm

[Tigreg in reply to Naomi8]

I'm taking 50 T4 and 56.25 T3. Thinking of lowering T4, heartbeat sometimes a bit erratic.....or else increasing T3.

[shaws in reply to Tigreg]

This link may be helpful:-

web.archive.org/web/2010112...

[Tigreg in reply to shaws]

Thank you Shaws

[shaws in reply to Tigreg]

Paul's T3 method doesn't work for everyone. I take T3 once daily and am well. I tried T4, T4/T3, NDTs and T3 only. None worked as effectively for me as T3, but everyone is different.

web.archive.org/web/2010103...

[shaws]

Vitamin C can help reduce high cortisol levels. We don't really need T4 as it's job is to convert to T3, so if we cannot convert T4 there's no point in taking it. I am fine on T3 only once daily.

[Naomi8 in reply to shaws]

Yes,I am taking vit C-having tried various adaptogens,I am sticking with vit C & L theanine.Stopping all cafeine & going on to camomile tea!

[DoDoc in reply to Naomi8]

Naomi8 can I ask how much Vit c and L-Theanine you are taking. I tried L-Theanine a few months back and my sleep improved....but I wasn't sure how long I should take it and stopped. Can you take it indefinitely? I am also taking 1500mg Vit C daily. Thanks.

[sulamaye]

I take 85 mcgs t3 and have managed to introduce a quarter grain of NDT but like you if the proportion of NDT to t3 is higher or if I try NDT only my hypo symptoms return. I am on hc for very low cortisol so I don't think it's just cortisol causing a problem. I have m.e / CFS so something else is also stressing my body perhaps causing rt3.

[shaws in reply to sulamaye]

If you have CFS etc it could be due to being thyroid hormone resistant, thus your higher dose of T3 required and I believe only T3 will relieve symptoms.

web.archive.org/web/2010103...

[Naomi8 in reply to shaws]

Thank goodness for Dr Lowe!How do you access his archives to post these wonderful links?

[shaws in reply to Naomi8]

web.archive.org/web/2010103...

Be mindful that because it's archived some links within the topics may not work.

[sulamaye in reply to shaws]

I tried taking it in one dose and went into art fib, very scary. Had to stop all t3 until it stopped. I am on the biggest dose I can tolerate without ill effects. I wish thyroid was at the root of my illness because I would be better by now, but it isn't.

[Naomi8 in reply to sulamaye]

I tried taking 55mcgs a few months ago in one dose but my heart really pounded.When I first began taking T3 a year ago,I was still on thyroxine & reducing that at the same time.I started with adding 3 daily doses of 5mcgs T3 split throughout the day.After 3 days I developed an episode of tachycardia that was still going after 5 hours(I have had episodes since before thyroxine & on thyroxine,but they always resolved after lying flat-no pillow)My heart was going at over 200 BPM & duty GP on phone said go straight to A&E!They kept me in overnight on a monitor,though it stopped after about 8 hours.I had all the follow up tests & it was confirmed I have supraventricular tachycardia.As it was not AF,I re started T3 a few months later & am now able to take 35mcgs in one dose-haven't tried a larger dose yet.Getting rid of all T4 was the key for me.My heart rhythm is much improved.Not sure yet if I have reached my best daily dose.I know i must test to make sure my FT3 isn't too high.

I didn't tell them at the hospital i was trialling T3,as I knew that would probably lead to my prescription being cancelled.It has allowed me to trial T3 successfully.My NHS scrip is being cancelled,but I am now settled on it & buy my own.

[sulamaye in reply to Naomi8]

I take mine in three doses, got lots of support via paul Robinsons FB book page when I started. I am lucky in that having started with self medicating after a useless GP robbed me of my t3 and half of my t4 in one fell swoop, I now get my t3 on script via the endo.

[shaws in reply to Naomi8]

That's good that you succeeded and am glad you're now very much improved.

[shaws in reply to sulamaye]

I'm sorry it's not working so well for you. Did you try dropping dose a little as you may have overshot slightly.

When you begin alternatives to levothyroxine, you can switch over to an equivalent and if you have unpleasant 'sensations' reduce dose slightly to see if they resolve.

Sometimes even a 1/4 can make a big difference. If you feel overstimulated you should take your pulse/temp several times a day.

[sulamaye in reply to shaws]

Yes, like I said I have had lots of advice from Paul Robinson and others, I've been on t3 only for two years now and have monitored everything and built doses very slowly. I have just upped my dose by 5 mcgs as my hair started Falling out again, I realised it's probably the shift into winter, I was on 85 throughout the winter. I really do have m.e whatever it is. I suspect bacteria from septaecimia hiding in biofilms similarly to the way lymes disease does. I am on t3 because of my m.e I was stable on t4 t3 combo for over thirteen years before my septaecimia etc

[shaws in reply to sulamaye]

CFS/ME were named in the early 90's and this is only for information for there should be answers for disabling symptoms which cannot be resolved.

stopthethyroidmadness.com/c...

[sulamaye in reply to shaws]

Dear Shaws, I do love Thyroid Uk and you give some excellent advice, but there is one thing I find frustrating and that's the members who refuse to acknowledge that whilst we don't know what it is, nor whether it is the same for everyone or a decsription of a cluster of symptoms, M.E/CFS is not always caused by badly treated or mistreated or even untreated hypothroidism. I have read stop the thyroid madness, I have scoured the earth and researched and read as much as anyone can whilst still being bed bound, but unfortunately my illness is not a thyroid problem, yes my thyroid is one of the things that does not function like it did on T4 and T3 before I got ill, but there is something else going on that is not explained by hypothyroidism and it is frustrating and also kind of patronising not to be heard, believed and treated as someone who when they say they've explored all the avenues have! I also know for a fact it is not caused by hypothyroidism because my partner had M.E/CFS for 16 years - that 11 years longer than me so far - and did recover, a full recovery, so recovered that she cares for me and our ten year old even though she is 60 this year. If it was thyroid related she could not have recovered without taking any thyroid meds. I know you think you are helping and I know there are people who are diagnosed M.E/CFS who are in fact hypothyroid and don't know it etc, and God do I wish I was one of them, but sadly I am not and it's not helpful if people can't acknowledge that fact.

[shaws in reply to sulamaye]

Sulamay, Now, I am not medically qualified

I also did not mean that someone who has a metabolic illness has hypo.

I read a few years ago that after the introduction of levothyroxine and blood tests in the late 50's it was about 15 years later that 'mysterious' illnesses were named ME/CFS -(maybe fibromyaligia too).

Before blood tests and levo were introduced and patients presented symptoms to doctors they prescribed NDT for clinical symptoms alone and as you know hypo has over 300+ symptoms and people were given natural thyroid hormones and if it worked and health improved they did need these hormones. I assume if symptoms disappeared and they stopped the symptoms might have reappeared and if not they were 'cured'.

Now, I am NOT saying all these people had hypothyroidism because they were treated according to their symptoms only not blood tests.

We also know that nowadays if your TSH 'doesn't fit the bill' you remain undiagnosed and unmedicated and suffer.

Maybe this might throw a little light on the matter. It is regarding Thyroid Hormone Resistance:-

"Excerpts:

Dr. Lowe: When supraphysiologic dosages of thyroid hormone fail to suppress TSH secretion, the patient has "general" resistance to thyroid hormone. This classification of thyroid hormone resistance is different from the one that manifests as fibromyalgia in many patients. The latter classification is termed "peripheral" resistance to thyroid hormone. I will explain the difference between general and peripheral resistance. "

and

To speed peripheral tissue metabolism up to normal, the peripheral resistance patient must use large dosages of thyroid hormone. But the effect of these large dosages on the normally responsive pituitary tissue is suppression of the TSH. Thus, secretion of TSH, and its circulating level, are extremely low.

Unfortunately, most physicians become alarmed when they measure the TSH level in such a patient and find it extremely low. Physicians have been taught that a low TSH level means only one thing in a patient taking thyroid hormone--the dosage is too high and is going to harm the patient. It will take some years for physicians to learn about peripheral resistance to thyroid hormone and to understand the odd test values these patients have when taking effective dosages of thyroid hormone. Patients with peripheral resistance must take TSH-suppressing dosages of thyroid hormone to have normal peripheral tissue metabolism. But there is nothing whatsoever harmful to these patients in having their TSH suppressed by these dosages of thyroid hormone. In fact, it would be harmful for most of them not to take such dosages. The adverse consequences include conditions such as fibromyalgia, chronic fatigue syndrome, and liver and cardiovascular diseases.

web.archive.org/web/2010103...

[shaws in reply to shaws]

P.S Dr L would never prescribe levothyroxine whatsoever.

[sulamaye in reply to shaws]

My tsh was suppressed for about ten years before I got m.e on t4/t3 my tsh is still suppressed I can't take anymore t3 without getting art fib which is very unpleasant and scary. I still don't feel that you are acknowledging my position or my experience. Your position still doesn't explain my partners recovery. In addition to changes in how symptoms are treated the past 50-60 years has seen massive changes in our environment from the foods we eat to the toxins and plastics, hormones and chemicals that now bombard us in modern life. You need to accept that thyroid meds do not cure m.e and certainly haven't cured mine, and to not recognise that fact is narrow minded and also rude, however unintentional.

[Naomi8]

Hi sulamaye.That's very interesting,thank you.I know my sex hormones are out of whack because my fibroids have not shrunk at menopause.I am now 66.I tried transdermal progesterone but this caused oestrogen rebound.D.I.M made me REALLY ill.

I take LDN & got up to 3.0 but have gone back down to 2.5 again,because of the anxiety & dreams.

[Kitten1978]

Hi Naomi8,

Going back to T3 only sounds like a good idea. Some of us cannot tolerate T4 in any shape or form, even as ndt. I cannot take any medication, which contains T4. I suspect it's to do with a genetic defect (DI02 gene mutation), rather than adrenals. I had extremely high cortisol levels when I took 50mg of levo for a week (I had to stop as it made me feel more unwell that being completely undermedicated). It took me longer to become toxic on ndt but the result was similar: very high cortisol, anxiety, you name it... Take care

[Hillwoman]

I still hope that one day I will be able to tolerate a little NDT with my T3, but I need a high dose of T3, as conversion is poor and I appear to have peripheral resistance. I'm up to 135-150 mcg daily in a single dose, and suspect I need more.

With every T3 dosage increase, my heart has reacted with irregular beats, which in the early days scared me into reducing the dose. That was a mistake, so now I just increase very slowly and carefully. I've had low thyroid function all my life, so my heart has always reacted badly to every change in thyroid meds, whether T4, T3, or NDT.

[Debbstar in reply to Hillwoman]

Hi hillwoman, I take t3 only and was wondering why you would like to introduce ndt again?, can I ask why people need or opt for both medications.

Thanks x

[Hillwoman in reply to Debbstar]

Well, the last thyroid function test I did (last year - the 24 hr urine test) revealed that I have very little residual thyroid function. NDT would give me calcitonin, and also T2, which is thought to have a role in fat metabolism.

[Hillwoman in reply to Hillwoman]

Also, NDT is cheaper and easier to obtain.

[Debbstar in reply to Hillwoman]

Thanks for replying. How interesting. I never tried ndt with my T3 just presumed i wouldn't need anything else. Hope you don't mind me asking what a peripheral resistance was and what them symptoms were.

Thanks x

[Hillwoman in reply to Debbstar]

The late John Lowe described the symptoms best, and he specialised in treating it. To put it very simply, some people fail, either through inherited or acquired metabolic defects, to absorb enough T3 at cell level for their bodies' needs. You might call it the 'final' problem that can occur in the chain of thyroid hormone production and cellular uptake.

Ask shaws for some links to Dr Lowe's archived website, because they're quite hard to access now if you don't have the specific address for each web page, and I believe she has a full list of them.

[Hillwoman in reply to Hillwoman]

Meant to say that you don't absolutely need NDT, it would just be preferable to have the complete thyroid output in one's replacement therapy.

[Debbstar in reply to Hillwoman]

Thank you.