High TSH: For the last 6 months my TSH has been... - Thyroid UK

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High TSH

joc0809 profile image
14 Replies

For the last 6 months my TSH has been at 19 despite dosage changes, I'm only on levothyroxine, my doctor is very opposed to dessicated thyroid and has refused to test other than tsh any suggestions welcome

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joc0809
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14 Replies
joc0809 profile image
joc0809

Unfortunately in the uk this is exactly what my GP is doing, I've been having dosage increases of 25mcg every 6 weeks, with only one drop to 12 in the the level before it went back up to 19

joc0809 profile image
joc0809 in reply to joc0809

I will be requesting a referral on next review

SlowDragon profile image
SlowDragonAdministrator

Getting FULL thyroid and vitamins tested yourself

Or see different GP

How much levothyroxine are you currently taking

Do you always get same brand

What vitamin supplements are you currently taking

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Vitamin D NHS postal kit

vitamindtest.org.uk

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is always under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications within 2 hours

What vitamin supplements are you currently taking

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, 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...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

joc0809 profile image
joc0809 in reply to SlowDragon

5 days at 100mcg and 2 at 75mcg, always taken correctly, many thanks for all the info

SlowDragon profile image
SlowDragonAdministrator in reply to joc0809

Well, as a male that’s obviously ridiculously low dose

Approx how much do you weigh in kilo

Which brand of levothyroxine are you currently taking

joc0809 profile image
joc0809

Unfortunately I can't seem to attach it but it was a full blood count and Dr said she was looking at magnesium and calcium levels (both normal) as she felt it might be an absorption issue but no other thyroid levels other than tsh were tested, I will be requesting a referral, I currently don't take any other supplements and until last year had felt absolutely fine

SlowDragon profile image
SlowDragonAdministrator in reply to joc0809

Insist that folate, ferritin, vitamin D and B12 are tested ...as per NHS guidelines

Coeliac blood test too

pubmed.ncbi.nlm.nih.gov/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

pubmed.ncbi.nlm.nih.gov/273...

Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.

pubmed.ncbi.nlm.nih.gov/300...

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

joc0809 profile image
joc0809

88kg and its Teva

SlowDragon profile image
SlowDragonAdministrator in reply to joc0809

You need to click reply button to alert other poster you have replied

88 kilo x 1.6 = 140mcg per day as likely dose levothyroxine required

140 x 7 days = 980mcg per week in total

You’re currently EXTREMELY under medicated

Insist on dose increase to 125mcg per day

Bloods should be retested 6-8 weeks later

Likely to need further small increase to

150mcg x 4 days week and 125mcg 3 days week

If GP refuses to increase dose you will need to see endocrinologist

Teva brand upsets many, many people

Are you lactose intolerant?

If not lactose intolerant it’s likely you don’t want to be on Teva

Mercury Pharma or Accord are most easily available and easily tolerated

joc0809 profile image
joc0809 in reply to SlowDragon

Thanks, I will get it changed (hopefully)

joc0809 profile image
joc0809 in reply to joc0809

I've got a telephone appointment & will be pushing for dose to increase to 125mcg - many thanks for your help

SlowDragon profile image
SlowDragonAdministrator in reply to joc0809

Suggest you try Mercury Pharma make as they do 25mcg, 50mcg and 100mcg tablets

Accord (boxed as Almus via Boots or Northstar via Lloyds) only available as 50mcg and 100mcg tablets

Your GP should have chased you up and increased dose

Very poor care

joc0809 profile image
joc0809

Very Cleary it's too low, I think I'll be sending this to my GP😁

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