TSH is over 28: Hello, could anyone comment on my... - Thyroid UK

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TSH is over 28

Elondon profile image
3 Replies

Hello, could anyone comment on my blood test, please, because my GP cannot.

I am 60 years old female, for the past six months T3 and T4 are normal but after start taking prescribed Levothyroxine TSH went from 8 to 28 and my body temperature dropped to 33C.

I have felt extremely weak, constantly shivering from cold and sliding down into depression with suicidal thoughts.

I was refused to be seeing by endocrinologist and had been diagnosed in advance with Hashimoto disease.

GP was insisting on moving from 50g to 100g but I have decided to stop it all before it's too late.

I still have fatigue but force myself to excises and can control my depression.

My TSH is now back to 10.

Would be very grateful for any thoughts and suggestions

Thank you

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Elondon
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SlowDragon profile image
SlowDragonAdministrator

50mcg levothyroxine is only the standard STARTER dose levothyroxine, so it’s common to initially feel more hypothyroid, on low dose because levothyroxine doesn’t “top up” failing thyroid, it replaces it ……so it’s essential to get dose increased as fast as tolerated

So it’s not surprising you felt worse

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

Standard increase is 25mcg levothyroxine

Increasing too fast can be hard to tolerate

Ideally you would increase to 100mcg with such high TSH…..but initially you might do 3-6 weeks taking 75mcg first

Which brand of levothyroxine were you taking on 50mcg

How long since you stopped taking it?

With TSH of 10 you are hypothyroid and need to be back on Levo

You presumably have had thyroid antibodies tested to confirm autoimmune thyroid disease also called Hashimoto’s

Starting levothyroxine - flow chart

TSH over 10 - starting on levothyroxine immediately

gps.northcentrallondonccg.n...

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

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

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

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

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

tattybogle profile image
tattybogle

I think it would have been better to try the increased dose, because when first starting on replacement thyroid hormones ,it is possible to feel worse on those initial lower doses of 25mcg / 50mcg .. this is because they are not enough for the body .... things usually improve as the dose gets closer to the body's needs .

Due to the complexities of the bodies hormone regulating system (HPT axis) , adding some T4 from a tablet does not really 'top up' our own production of T4 ... it effectively has to replace it ... hence why 50mcg may not be anywhere near enough and symptoms may worsen again , and TSH may rise again.

DandyButch profile image
DandyButch in reply to tattybogle

Why is this small, insignificant, fact never provided by GP???? If people were made more aware of the complexities of levothyroxine treatment, and the huge pitfalls, many could manage much, much better.

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