Thyroid UK
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Hi I wondered if anyone could give me advice, I've been hypothyroidism due to thyroid cancer in 2011 for 5 years I diagnosed myself until the endo I saw said I was suffering from hypothyroidism. I'm on the lovely Levothyroxine which I feel is doing no good and I have problems with regulating my calcium levels and take supplements, I know in my mind I would benefit from t3 but I'm having a battle to get it as Gp and many medical staff I've seen have said it's blacklisted or I'll have to go private. Which I'm looking into but finding it hard. So in the meantime what can I do about my horrible symptoms as I feel like I've no energy, get constant brain fog and concentration problems, I'm moody and get palpitations and sweats. I would love to feel well again

6 Replies

Welcome to our forum and am sorry you had thyroid cancer which means you are now hypothyroid. Did they remove your gland or do RAI.

I am hypothyroid but was never well on levothyroxine and I believe that anyone whose had their gland knocked out so they have no thyroid hormones whatsoever, that it would be kind if T3 was added to T4. New research from several different research studies do show that patients feels much better when T3 is added to T4. T3 has only been blacklisted due to its now exhorbitant cost and with the stupid statements made by those who should know better that T3 is beneficial for thousands of patients, either added to T4 or T3 only. They are so stubborn and are very unknowledgeable about how the patients' progress is on either T3 or T4/T3 and they wont agree to natural dessicated thyroid hormones which contain all of the hormones a healthy gland would product, i.e. T4, T3, T2, T1 and calciton (the last four in small amounts). NDT was the very original since 1892 and we were informed that levo was superior (for whom - not for me).

Those who do well on levo wont be on this forum as it is those who've had horrendous struggles and doctors uneducated in the function of the thyroid gland, which means most of the medical profession I believe.

You can source T3 on your own. They are quite happy for us to be unwell on a lowish dose of levothyroxine but willing to prescribe 'other meds' for the symptom rather than a decent dose of hormones to bring good health back to the patients. Mainly we are women, so I assume they think we are always moaning. The fact is that there is only one Active Thyroid Hormone and it is liothyronine - not levothyroxine. Levo has to convert to T3, we may not be given sufficient in order so that the TSH is kept somewhere in range when it should be 1 or lower. Many feel much better when it's lower but they appear to believe in fairy tales in that low TSH will give us osteo or heart problems. We are more likely to develop these if we don't have sufficient T3.

Blood tests have to be the very earliest, fasting (you can drink water). Also allow 24 hours approx between last dose of levo and test and take it afterwards. This keeps the TSH highest as that's all the appear to take notice of and adjust willy/nilly with the result is patient is unwell.

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I've had a total thyroidectomy and rai too. Last week my tsh levels were high so I was told to reduce levo to 125mg to be honest I never got the results which has been a frequent occurrence and highly annoying. I feel now I know what I'm talking about in regards to my health I feel shut out of my care and my rights. I feel the brunt of this is putting pressure on my heart and it's scary as I'm always tachycardic when symptomatic and I know I would extremely benefit from t3 as I've become an advocate in my own health, I know t3 can be obtained from other countries and it's hard to obtain here and getting it will be difficult especially when I don't have any medical practitioners that understand I feel like I'm going round in circles


If he really meant:

Last week my tsh levels were high so I was told to reduce levo to 125mg

That is the exact reverse of what is needed. HIGH TSH would indicate a need for MORE thyroid hormone. Or is that a simple typo in there somewhere?

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helvella's question is most important as he is correct in his assumption about reducing if TSH is high.


Many thyroidless hypothyroids find they only recover health on Natural Dessicated Thyroid

Since it contains t4 t3 t2 t1 and calcitonin

You might find it more effective than levo and or t3


Starts today, lots of valuable information.


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