Please any advice : Hi , I have hashimoto and... - Thyroid UK

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Please any advice

monapple profile image
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Hi , I have hashimoto and underactive thyroid on 75mg levotyroxine, feeling tired very bad headache ct scan normal , headache worse before period and I have more symptoms . Do you have problem with Prolactine and thyroid? Call GP but waiting over month to speak with DR

TSH 3.7 ( 0.2-4.2)

Prolactine 820 ( 102.0 - 496.0 )

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monapple
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Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Many thyoid patients find that they need to become a little pushy in a nice way to persuade their GP they need more thyroid hormone or some vitamin tests in order to be well.

If you've been waiting a month and don't have an appointment yet then you need to get back onto your surgery and complain. Do make yourself heard. I know this really isn't the easiest thing when you're feeling completely pants but it is necessary unfortunately.

Have a good read around this forum now that you are here and you will see that you are not alone and that there are tips and tricks for thyroid patients to learn to help themselves get well. Unfortunately your GP/s likely need some guidance and it will be down to you to lead them.

The NHS has just tested your TSH which is a common thing, however there are other numbers nd tests to consider including FT4 & FT3. To get these tested you may have to pay for a private test in future.

So your TSH is well over 1 which is where most people feel well. Many GPs are happy to leave your result in the middle of the reference range as they are too afraid to give you more hormone believing it might harm you.

The truth is that too little thyroid hormone can also harm you and what you need is just the right amount for you.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Did you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.

Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

SlowDragon profile image
SlowDragonAdministrator

With TSH over 2 you need next dose increase in levothyroxine to 100mcg daily

Retest 6-8 weeks later

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)

Which brand of levothyroxine are you currently taking

ESSENTIAL to test vitamin D, folate, B12 and ferritin

What vitamin supplements are you taking

As you have Hashimoto’s are you on strictly gluten free and/or dairy free diet

List of private testing options and money off codes

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

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/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

Beads profile image
Beads

Just a thought, what brand levo are you taking?

My adverse reaction to Teva brand is a headache which doesn’t go away with paracetamol. You any need a brand change, which you are likely to get if you can get an increase to 100ug.

SlowDragon profile image
SlowDragonAdministrator

If you’re currently taking a single tablet on 75mcg then brand will be Teva

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

TSH is far too high

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).

SlowDragon profile image
SlowDragonAdministrator

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.

Added information on dose by weight/BMI

healthunlocked.com/thyroidu...

See reply by roukounasGK

Just a quick note: i have read somewhere that the initial dosing per weight is not for your current weight. It is for the weight you would have for a BMI 23-24. So even if overweight, the initial dosing is roughly the same. So if for example you have a height of 175 cm, the target weight based on a bmi of 23 should be 72 kg. And the dosing should be 1.6x72=116 mcg. Which is much more logical as an initial dose than the very large numbers resulting from this function using our actual weight.

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