advice again sorry

[Bobby25]

ok so I’ve had my blood tests back today and after thinking that they would definitely be upped from the 50 start dose they said that I was normal but I’m still suffering from a tingling finger on my right hand and joint pain, I’m tired than ever and I’m fatter than ever. Could they have got it wrong and I don’t have a thyroid issue at all and it’s something else like menopause?

[SlowDragon Administrator]

ALWAYS get actual results and ranges on all tests

See exactly what has been tested

Far too often only TSH which is completely inadequate

Pins and needles suggests low B12 …..very common when hypothyroid

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

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

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

Have you had thyroid antibodies or vitamin levels tested at diagnosis or now

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)

is this how you did your test

First step

Get hold of most recent test results

[Bobby25 in reply to SlowDragon]

Yes this is how I prepared for the test. They didn’t give me any ranges when I asked for them before and in wales they don’t do the blood test info on line. I’m just now not sure how to proceed, the levothyroxine makes me feel awful and the weight gain for me is a nightmare, I have issues around this issue.

Test results

[SlowDragon Administrator in reply to Bobby25]

Ring up receptionist and request printed copies of your latest blood test results and ranges

With TSH of 8 before starting on levothyroxine it’s highly likely you are ready for next dose increase in levothyroxine

You will need to be proactive and push for next dose increase up to 75mcg daily

Retest again in another 6-9 weeks

Which brand of levothyroxine are you currently taking

Unless extremely petite likely to eventually be on at least 100mcg levothyroxine daily

But we have to increase SLOWLY up in 25mcg steps

Levothyroxine doesn’t “top up” failing thyroid….it replaces it

So almost everyone will end up eventually on something approximate full replacement dose

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

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...

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.

[Bobby25 in reply to SlowDragon]

Thank you I hate all this xx

[Lalatoot]

Bobby It was being in a situation like you are that made me proactive and pushy with doctors.Along with your ft4 result there should be a range. The doctors look for your result to be somewhere in that range. So if the testing lab has a range for ft4 of 10 to 22, your doctor will say normal if your result falls in that range. But you may still feel rubbish because your ft4 result might be a normal 11 but your body needs it to be a normal 18. It's like shoes. You would wear a normal size 5 if your feet were a normal size 7. But doctors don't understand this. This is why we keep asking for actual results and ranges to help folks find the optimal level and results for them rather than them being told they were normal.

Remember a size 7 foot does not fit in a size 5 shoe.

[Bearo]

Your results say that your TSH is high and your FT4 is low and as you still have symptoms that means you need a dose increase - as per NICE guidelines. If the GP says your results are in-range then you can say that there is room in the range for an increase.

[am111]

Tingling and joint pain could be B12 deficiency. Have you been tested for it?

[Bobby25 in reply to am111]

They have yes said it was normal

[Stourie in reply to Bobby25]

Hi, once again normal means nothing. Do you have the result for your B12. Jo xx

[Bobby25 in reply to Stourie]

vitamin B12 = 633 ng/L ;

[Stourie in reply to Bobby25]

just what Jazzw says. Jo xx

[Jazzw in reply to Bobby25]

“Normal” is an opinion. And probably not the right opinion.

Like everyone else, I’d be willing to bet you need more thyroid hormones but if you’ve been hypothyroid for any length of time you are extremely likely to have deficiencies in nutrients like B12, folate, ferritin etc. Hypothyroidism does quite a number on gut absorption—even in those with a healthy diet. If you can’t absorb the good stuff because of undertreated hypothyroidism, you definitely won’t feel as well as you could.