Levothyroxine working but do I need more - Thyroid UK

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Levothyroxine working but do I need more

Purplefiona profile image
7 Replies

I have my Free T4 tested and it’s 9.9 which is aparrently acceptable. I have perked up a lot since being on levothyroxine (50) and the nurse said that it was fine.

My questions is should I keep on chasing this endocrine referral (made 6 months ago not heard much) or should I go back to GP for more tests - eg TSH ?

I do feel more human but I feel I could be sliiiightly better still

thanks

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Purplefiona profile image
Purplefiona
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7 Replies
helvella profile image
helvellaAdministrator

It is impossible to answer because 9.9 doesn't mean anything without the reference interval.

If that is 12 to 22, then 9 is dreadful. It that is 7 to 14, then 9.9 is just quite low. And if you are in the USA which uses different units as well, it would be extremely high!

"Fine" very often just means anywhere within the reference interval (range). And that is a big problem.

This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.

The normal range: it is not normal and it is not a range

helvella.blogspot.com/p/the...

Let us know more and someone will answer more helpfully!

[ Edited to correct "9" to "9.9". ]

Purplefiona profile image
Purplefiona in reply tohelvella

Good point! The range on the TS4 is 9-14 so I assume this is low. I will push for another appointment / chase endocrine referral.

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts your hypothyroidism is autoimmune, confirmed by very high thyroid antibodies

Aiming for Levo to be slowly increased until Ft4 is steady at approximately 70-80% through range and all symptoms resolved

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Frequently necessary to supplement continuously to maintain optimal levels

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Purplefiona profile image
Purplefiona in reply toSlowDragon

My various vitamins were ok when I last looked : I had incredibly thorough bloods done one night at A&E for a nasty lung infection and the results were fascinating. One thing was low: that according to a brief Google might show low iron. I keep forgetting to take my Feroglobin gunge but hope that has shifted it a bit. Also now have cholesterol of 5.5 which is above 5 when they prefer it to be below 5. Also they did say I weigh too much but after years of undiagnosed fatigue who is surprised.

SlowDragon profile image
SlowDragonAdministrator in reply toPurplefiona

So you are only just at start on 50mcg of getting on to levothyroxine

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

helvella profile image
helvellaAdministrator in reply toPurplefiona

Cholesterol usually rises when people are hypothyroid. And reduces when that is resolved.

Focus on thyroid and, if I've understood properly, iron. You need decent iron levels for thyroid hormones to work as needed.

Purplefiona profile image
Purplefiona

PS I did parkrun the other day and was Not Breathless !!! This is huge .

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