Underactive: Hi,Hoping someone can help, been on... - Thyroid UK

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Underactive

Frustrated44 profile image
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Hi,Hoping someone can help, been on different doses of thyroxine but my doctor has put me on 75mg. I fee worse just so tired, my joints are aching just feel like my body is shutting down have no energy and feeling low plus my memory is not so good, my weight has gone up any advice would be great?

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Frustrated44
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6 Replies
Charlie-Farley profile image
Charlie-Farley

Hi Frustrated

Welcome to the forum

I expect your doctor is treating your lab work and not actually treating you at all.

What was your latest blood test? If you can anonymise and share results with ranges and perhaps how much you weigh and if you have any other health issues people can give advice based on their experiences.

If you are under medicated which it sounds like you will likely have vitamin deficiencies as well.

I will tag SlowDragon in to share some valuable links to information you will need. Buckle up and get ready there will be lots of information. Just work through it a bit at a time. That is what I did and got well thanks to the forum.

I expect they are treating your TSH which is NOT a thyroid hormone. (You can’t make this stuff up 🙄). It is so wrong and so common.

That’s why there are over 130,000 people who have joined this forum.

in the meantime if you click on my face at the top of my reply it will take you to my profile, my bio is a case study written specifically to explain the misconceptions doctors have. They have all been taught the same things sadly the the same wrong things where treating hypothyroidism is concerned.

SlowDragon profile image
SlowDragonAdministrator

welcome

How long have you been on 75mcg levothyroxine now

Which brand is it

You should have blood test 6-8 weeks after any dose or brand change in levothyroxine

likely you are ready for next dose increase in levothyroxine and/or low vitamin levels may need improvement

Can you add results and ranges from before starting on levothyroxine and most recent results

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)

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

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

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Are you in the U.K. ?

Frustrated44 profile image
Frustrated44 in reply to SlowDragon

Hi thanks for all your help yes I am in the UK

SlowDragon profile image
SlowDragonAdministrator in reply to Frustrated44

Please add your most recent test results

ALWAYS test early morning, ideally before 9am, only drink water between waking and test, and last dose levothyroxine 24 hours before test

If GP unhelpful test privately like thousands of other members

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

examples of posts discussing private test results

Medichecks

healthunlocked.com/search/p...

Blue horizon

healthunlocked.com/search/p...

SlowDragon profile image
SlowDragonAdministrator in reply to Frustrated44

75mcg is only one step up from starter dose

Unless extremely petite likely to need next increase to 100mcg

guidelines on dose levothyroxine by weight

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.

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...

jand123 profile image
jand123

hi Frustrated44 , I spent 4 years not feeling better as I couldn’t convert the T4 into T3. I now take T3 with my T4

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