High or low dosage for no thyroid.: I have been... - Thyroid UK

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High or low dosage for no thyroid.

Vinalfo profile image
7 Replies

I have been on a dosage of 175 mmg Eutroxsig

Levothyroxine sodium for over 10 years and recently I have been getting heart palpitations.

I was checked out with stress test and my heart is in good condition and put down to a high dose of TSH. my medication has been lowered and feeling better but so tired at times and body pains....is this normal.

ps I have no thyroid and had thyroid cancer in 2009,

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Vinalfo profile image
Vinalfo
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pennyannie profile image
pennyannie

Hello Vinalfo

A fully functioning working thyroid would be supporting you with trace elements of T1.T2. and calcitonin plus a measurable amount of T3 at around 10 mcg daily and a measurable amount of T4 at around 100 mcg daily.

Some people can get by on T4 only, some people at some point in time simply stop converting the T4 into T3 and some people simply need both these vital hormones dosed and monitored independently to bring both T3 and T4 into balance, within the ranges, and a level high enough to be acceptable to the patient and restore their well being.

T4 is a storage hormone and needs to be converted by your body into T3 - the active hormone that the body runs on which is said to be about 4 times more powerful than T4 and read the average person utilises about 50 T3 just to function.

Your ability to convert T4 into T3 can also be compromised if ferritin, folate, B12 and vitamin d are not maintained at optimal levels and higher in the range than maybe your doctor believes necessary.

Do you have any blood tests results to share with the forum members as then you will be talked through anything that looks amiss.

In the UK many of us have to pay for the relevant blood tests and need a measure of TSH. T3.T4. antibodies, inflammation markers, ferritin, folate, B12 and vitamin D :

In the UK many of us are self sourcing out T3 - Liothyronine as it is very difficult to get prescribed - but not impossible - post code lottery - costs - though not costly and relatively easy to buy in other parts of the world :

In the UK many of us are self sourcing Natural Desiccated Thyroid which is pig thyroid dried and ground down into tablets referred to as grains, and was successfully used to treat hypothyroidism for over 100 years prior to Big Pharma launching Levothyroxine and the blood tests, guidelines and ranges. NDT contains all the same known thyroid hormones as the human gland, containing, T1.T2.T3.T4 and calcitonin ;

I don't know what thyroid hormone replacement options you have in Australia so shall leaves this here, for now.

Your Thyroid and How To Keep It Healthy - written by a doctor Barry Durrant-Pearfield, who has himself hypothyroidism helped my understanding of my own health issues, having RAI thyroid ablation for Graves Disease.

The book is available on the Thyroid uk website, as is so much more information, though living where you do guessing bot everything will be as relevant to you as to me.

greygoose profile image
greygoose in reply to pennyannie

A certain percentage of T4 will always be converted to rT3, which is then converted to T2, then T1. The thyroid itself produces very, very little of these, if any. And, quite how important they are in supporting the body is totally unknow as far as I'm aware. So, it's rather unlikely that the OP will be suffering due to lack of these. Calcitonin is involved in balancing calcium.

helvella profile image
helvellaAdministratorThyroid UK in reply to greygoose

Agreed, greygoose. I have never seen any evidence that T2 and T1 get into our bloodstreams by taking desiccated thyroid.

(Equally, I've seen no evidence that it doesn't.)

Without proper evidence, we are somewhat assuming:

Desiccated thyroid contains T2 and T1 in sufficient quantities to be relevant.

Any T2 and T1 is not removed or destroyed or just inactivated by the processing of the desiccated thyroid. Or swallowing the tablet. Or digestive processes.

T2 and T1 can actually be absorbed.

If we go back to the days of using Protein Bound Iodine to assay desiccated thyroid, and then T4 and T3 assays were introduced, we can see that at least almost all the iodine in desiccated thyroid is in the forms of T4 and T3.

Note: I am not saying desiccated thyroid does not, and cannot, contain T2 and T1.

I am also totally convinced that some documents have confused T1 with monoiodotyrosine (MIT), and T2 with diiodotyrosine (DIT). It might have been the authors getting it wrong, or the words not being well chosen to explain properly.

Vinalfo profile image
Vinalfo in reply to pennyannie

Hi Pennyannie, many thanks for your very informative reply. In Australia we have an incredible health system whereas blood tests are bulk billed and off course with no charge. My recent tests are as follows:Recent blood tests indicating overactive thyroid condition: Thyroid function test: TSH <0.01, FT4 18.4, FT3 5.2 .......S Tg <0.1, S ANTI-Tg <1.0.

Lately I have been feeling very tired as I have cut my medication from 175 mmg per day to 100 mmg x 4 days a week and 175 mmg x 3 days a week. I have another appointment with my endocrinologist in February to check my thyroid levels.

Its been a big journey from my original diagnosis in 2009 of a possible minor issue with my thyroids to having the left thyroid removed, just as a precaution and to later being diagnosed with an aggressive thyroid cancer and it was an emergency operation.

Cheers Vince

pennyannie profile image
pennyannie in reply to Vinalfo

Hey there Vince

Do you feel over medicated ?

Anxious, nervous, irritable, loose bowel, eating for 8 and loosing weight, insomnia, heart palpitations, over heating, shaking, unable to " turn off, and running on empty ? just naming a few symptoms, but you can find more on the Thyroid uk website.

Your symptom of tiredness are more likely to be because your are under medicated as this is a symptoms of hypothyroidism - full symptom list on the Thyroid uk website.

Do you have the ranges relating to those blood test results ?

Do you have any previous blood tests from when you felt more well ?

Can you see any differences between where your T3 and T4 levels were, and where they are now ?

It is imperative that you are dosed and monitored on T3 and T4 blood test results with the intention that both these vital hormones be balanced and high enough in the range to be acceptable to the patient and at a high enough levels to restore the patients well being.

Your conversion ratio of T4 into T3 is good and coming in at 1 / 3.50 T3/T4 ( just divide your T3 result into your T4 result ) as the range for optimal conversion when on Levothyroxine only is generally between 1 /3.5-4.50 with most people feeling at their best at around 1 / 4 or lower.

Personally without having more information on the T3/T4 ranges I think you just need to reinstate your previous dose of thyroid hormone replacement, as in the UK using UK ranges neither your T3 or T4 are over range, and you are not hyperactive, or overactive, and more likely hypothyroid and simply needing more T4 - Levothyroxine.

However, as detailed in my previous post, having lost your thyroid, you have lost your own thyroid hormone production that would have included a small proportion of T3 and some people feel much better when they introduce a small amount of T3 alongside their T4.

The TSH was originally introduced as a diagnostic tool to help identify people suffering with hypothyroidism - and once on any form of thyroid hormone replacement the TSH is the least important blood test and should never be used to dose and monitor patients.

You haven't a thyroid, your feedback loop is broken, and your TSH is of little, if any, importance.

P.S. Since you have dropped down your medication, your metabolism will have stalled, and slowed down a little, so it might be sensible to check out your ferritin, folate B12 and vitamin D levels as these need to be maintained at optimal levels for optimal conversion of T4 into T3.

shaws profile image
shawsAdministrator

Welcome to our forum and I am sorry you have no thyroid gland at all. Even worse is that you've been on T4 only for ten years.

If you copy and paste some of your above history into your profile, page it means members can read it in future without having to ask for your background. If you click on your name it will take you to your 'page[.

I have my thyroid gland - obviously not working but I couldn't recover my health on levothyroxine (T4) alone.

I believe that the very basic replacement dose for someone who has no thyroid gland at all should be a T4/T3 combination.

T4 - also called levothyroxine -is an inactive hormone and has to convert to T3.

T3 - also called liothyronine - is the Active Thyroid Hormone -it is needed in our millions of T3 receptor cells and the heart and brain contain the most.

Vinalfo profile image
Vinalfo in reply to shaws

Thank you Shaws and my latest blood results are as follows: Recent blood tests indicating overactive thyroid condition: Thyroid function test: TSH <0.01, FT4 18.4, FT3 5.2 .......S Tg <0.1, S ANTI-Tg <1.0.Lately I have been feeling very tired as I have cut my medication from 175 mmg per day to 100 mmg x 4 days a week and 175 mmg x 3 days a week. I have another appointment with my endocrinologist in February to check my thyroid levels.

Cheers Vince

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