TSH level of 100

[Rubydoo23]

I was over active then had radio active iodine march 2023 due to medication not controlling it then going under active

I was on 50mcg levo then had it upped to 100mcg by the endocrinologist had repeat bloods and my TSH was then 7 I was upped again on levo to 125mcg

I’m really struggling with my periods they are very heavy I'm flooding and bleeding for upto 10 days. Struggling with headaches and constantly tired I’m getting no where with the gp but back on 8 week appointments with my endocrinologist

[Buddy195 Administrator]

Did they test FT3 and FT4 or just TSH?

How long have you been taking 125mcg Levo?

It’s not surprising that you have so many adverse symptoms with such an elevated TSH.

When did you last test key thyroid vitamins (ferritin, folate, B12 and vit D)?

[SlowDragon Administrator]

I was upped again on levo to 125mcg

How long since dose was increased

Which brand on Levo

Approx how much do you weigh in kilo,

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

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

with heavy periods low iron/ferritin likely

Essential on levothyroxine to have GOOD ferritin 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)

[Rubydoo23 in reply to SlowDragon]

my dose was changed 23rd dec 2023 to 100mcg then my bloods were done again 10th feb my T4 was 10 and TSH was 6.69

Accord levothyroxine

I’m around 84kg

I will request those bloods and get them done. It’s a constant battle with my gp and it’s so frustrating.

I’m at the stage where I can’t go an hour without flooding I’ve tried to explain to them about my ferritin being low in the past but it’s just ignored or they don’t request it on my bloods then I end up constantly on the phone to them trying to get past reception police then I’m told I’m not medically trained but still don’t do what you ask them.

Thank you I will ensure my bloods are done early morning. I’m back with the endocrinologist 19th April he has told my gp to give me TXA and to monitor ferritin B12 and folate but again they haven’t done it. I’m at the stage now where I’m looking to change my gp as they are so bad

Thank you so much for replying to me

[SlowDragon Administrator in reply to Rubydoo23]

bloods were done again 10th feb my T4 was 10 and TSH was 6.69

How long had you been on 125mcg

So your Feb results show you need next dose increase …..perhaps initially to 137.5mcg

Retest in 6-8 weeks

You’re still clearly under treated

And ESSENTIAL to be testing full iron panel test including ferritin

Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin

ask for full iron panel testing for Anaemia

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Meanwhile

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus red meat everyday, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Plus you need vitamin D, folate and B12 testing

What vitamin supplements are you taking

[SlowDragon Administrator in reply to Rubydoo23]

Get full iron panel test yourself

and get B12, folate and vitamin D tested privately too in necessary

are you currently taking any vitamin D or B vitamins

[SlowDragon Administrator]

Guidelines of dose Levo by weight

Your weight suggests you are under medicated too

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.

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).

[serenfach]

"Hello GP practice manager, I saw the Endo has asked you to do some bloods for him, When can you book them in?"

The Endo is much higher up the tree than a patient, therefore you may get the tests booked. Go straight to the practice manager.