Confused of Orpington

[janh669]

Hi guys, Hope someone can help me. Had Graves and TED and had a full thyroidectomy about 13 years ago. Since then the GPs have dropped my Levo from 125mg to 75mg. Two previous test show I am over medicated. My latest results have come back with a TSH level of 4.9 which apparently is just above normal. What does it mean if everything else is ok, but your TSH continues to be high? Do I need more or less? Feel relatively ok. Heart rate is ok. Blood pressure is ok now they have given me tablets. Hard to loose weight, dry skin and tired. Vitamin levels appear ok too. Any suggestions welcome.

[greygoose]

You need more. You are still hypo. Forget the so-called 'normal' range, which is totally irrealistic, a euthyroid (normal) TSH is around 1, and you are hypo when your TSH gets to 3. And, besides all that, people without a thyroid usually need their TSH lower than 1.

If your doctor is dosing by the TSH, he is doing it the wrong way. The most important number is the FT3 - you are only over-medicated if that is over-range, because T3 is the active thyroid hormone. But, he should at least be looking at the FT4, not just the TSH, which isn't even a thyroid hormone. Your doctors don't really know what they're doing, I'm afraid.

[SlowDragon Administrator]

Please add these “over medicated “ results…..just testing TSH is completely inadequate

Make an appointment with GP and request/insist on 25mcg dose increase in levothyroxine

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

ALWAYS Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking

Please add actual vitamin results and ranges

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

[Buddy195 Administrator]

I have TED and an underactive thyroid. Both my endocrinologist & TED specialist ophthalmologist agreed that my TSH should be below one. As I don’t convert T4 to T3 well, they were also in agreement to add Liothyronine to my Levothyroxine.

I would recommend you test your T3 and T4 levels (privately if GP won’t do this) then post results for further advice & support. You definitely need to push for a thyroid medication increase asap, but I would want to know existing T4 and T3 levels prior to any increase.

[pennyannie]

Hello again :

Sorry I missed this post - but here goes again :

The TSH blood test, was originally introduced as a diagnostic tool to help identify a patient suffering with hypothyroidism and was never intended to be used once the patient was taking any form of thyroid hormone replacement used in isolation once on any form of thyroid hormone replacement is not a reliable measure of anything.

Considering you have Graves Disease, which is an auto immune disease, and for life and for which there is no cure, your TSH is known to be an unreliable measure of anything.

Graves antibodies can still be sitting on the TSH receptor sites, and your TSH may ' appear " low/suppressed. and you ' appear ' to still be overstimulated/hyperthyroid - when in fact, the opposite is likely the case.

You have had a thyroidectomy and there is no thyroid to overstimulate and you now receive a measured dose of thyroid hormones to keep you well.

Without a thyroid, through any medical intervention, you must be dosed and monitored on your T3 and T4 blood tests results with a view to have both these vital hormones balanced at around a 1/4 ratio T3/T4 and high enough in the ranges to relieve symptoms.

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

The body runs on T3 - Liothyronine and not T4 - Levothyroxine which is a storage hormone and needs t be converted by your body into T3 which is said to be around 4 times more powerful than T4.

Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D so just being " ok " may not ' cut it ' when living without this major gland.

Some people can get by on T4 only :

Some people find T4 seems to stop working as well as it once did and find by adding in that T3 they lost through surgery they feel improved and take Liothyronine + Levothyroxine- a T3/T4 combo :

Some people can't tolerate T4 and need to take T3 - Liothyronine only :

Other people fid their health restored taking Natural Desiccated Thyroid which contains all the same known hormones as the human gland and derived from pig thyroid, dried and ground down into tablets referred to as grains.

NDT was the original treatment for hypothyroidism and used successfully for over 100 years and along with T3 - Liothyronine widely available on the NHS until around the turn of the century when costs over medical need seem to have become the order of the day.

eliane-moore.com

Breaking the TSH rule - from Hyper to Hypo to Healing - written by Barbara S Lougheed :