underactive thyroid

[Carlphilip1958]

getting numb feeling in my face arm and leg. Headache itchy skin and tired out light headed. My gp sent me for mri. Everything is fine. I have had an underactive thyroid for 25 years My blood pressure is also low I take 100 levothyroxine. Does it need increasing ???? Blood tests 3 rd June ! Any help appreciated

[Marz]

Lots of good advice on your post of 4 years ago. It was suggested you posted test results - no response 🤔

Your present symptoms could be LOW B12...

[Carlphilip1958 in reply to Marz]

I get b12 injections every 3 months xx

[Marz in reply to Carlphilip1958]

You probably need j@bz more often. I self-inject weekly ....

[greygoose]

It probably does need increasing, it's not a very large dose. But impossible to say for sure without seeing lab results.

[Carlphilip1958 in reply to greygoose]

Last lab results December 2023. T4 10pm ok/L. TSH LEVEL 1.6 my/L. DOCTOR SAID NORMAL

[Marz in reply to Carlphilip1958]

Ranges ?

[Carlphilip1958 in reply to Marz]

I don’t know the range that’s the only information I have xx Thankyou for your response x

[greygoose in reply to Carlphilip1958]

As Marz says, we need a range for that FT4 for it to make any sense. But your TSH is on the high-side for someone taking thyroid hormone replacement.

When a doctor says 'normal', all he means is that the result falls somewhere within the range. He doesn't know enough about thyroid to know whether that is 'normal' for you, or not. And just being somewhere in the range is not the same as optimal. So, a doctors saying 'normal' is actually quite meaningless.

[Carlphilip1958 in reply to greygoose]

Thankyou does that mean I am taking to much levothyroxine do you think. Xx

[greygoose in reply to Carlphilip1958]

With a TSH of 1.6? Absolutely not. In fact, pretty certain you need an increase in dose.

[Carlphilip1958 in reply to greygoose]

Thankyou see what my results are on the 3rd June I’m tempted to put it up myself by 25 see if I feel any better. Would you ??

[greygoose in reply to Carlphilip1958]

Not before getting your labs done on 3rd June, no. Because then you'd have to wait another six weeks to get viable labs. But, after, yes. If I had enough T4 and a reliable supply I'd most certainly put it up myself.

[Carlphilip1958 in reply to greygoose]

Thankyou for advice I will wait xx

[SlowDragon Administrator]

just testing TSH is absolutely useless…..but frequently all NHS offers

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

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

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG 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

[SlowDragon Administrator]

looking at your forum name

Are you male

What’s the reason for your hypothyroidism

Autoimmune, or post RAI or thyroidectomy?

Approximately how much do you weigh in kilo

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).

[Carlphilip1958 in reply to SlowDragon]

No I am female. I weigh 10 stone 6 lbs and I am 65 and 5ft 2inches tall xxx

[SlowDragon Administrator in reply to Carlphilip1958]

10 stone 6 pound = 66kilo

66kg x 1.6mcg = 105mcg per day as guidelines

So you might need a slightly higher dose

Eg 100mcg 5 days per week and 125mcg 2 days week

First step is to get FULL thyroid and vitamin testing done

Test early morning last dose Levo 24 hours before test

ESSENTIAL to get vitamins tested and improve and maintain at optimal levels

Is your hypothyroidism autoimmune?

Ever had thyroid antibodies tested?

[Carlphilip1958 in reply to SlowDragon]

Thankyou. No I haven’t had thyroid antibodies tested. What is that please. I had breast cancer three years ago and had radiotherapy. No chemo. Can this affect thyroid. I can’t remember the last time I felt ok !!!

[SlowDragon Administrator in reply to Carlphilip1958]

Then it’s more likely that your hypothyroidism is result of your cancer treatment.

Hypothyroidism after breast cancer treatment is quite common

You could ask GP if they have tested you for autoimmune thyroid antibodies

[Carlphilip1958 in reply to SlowDragon]

I have been taking levothyroxine for 20 years x

[Carlphilip1958 in reply to SlowDragon]

I will ask. Thankyou. I will check which brand I am taking in the morning xx

[Carlphilip1958 in reply to SlowDragon]

I don’t know if it is autoimmune. Do you think I should at to see a specialist xx

[SlowDragon Administrator in reply to Carlphilip1958]

Before considering seeing any specialist first step is to get FULL thyroid and vitamin testing ….via Medichecks or BH if GP won’t run all the tests

NHS rarely tests Ft4 and almost never tests Ft3

Thousands of U.K. patients test private

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

Do you always get same brand levothyroxine at each prescription