New and confused

[Mummymonster]

Hi. I was diagnosed with hypothyroidism a month ago and given a low starting dose of levothyroxine. Blood was retested and I rang for the result. 8 was told I am now borderline and to book a blood test in 6 weeks. I asked for a new prescription and after a pause, this was agreed. Surely that’s not right?

[SeasideSusie Remembering]

Mummymonster

What do you think isn't right?

A normal starter dose is 50mcg, if the patient is a child, elderly or has a heart condition then the starter dose is 25mcg.

Retesting 6 weeks after starting (some GPs do it after 4 weeks) is the norm as it takes 6 weeks for the full effects of Levo and for levels to stabilise.

Blood was retested and I rang for the result. 8 was told I am now borderline and to book a blood test in 6 weeks.

Presumably this is the TSH test? Always get a print out of your results from the receptionist after any test. If your surgery has online access to your results then you can register and check results that way.

Keep a note of all your results like this:

Date..... Test name..... Result..... Reference Range..... Dose of Levo….. Comments on how you feel..... Any change of dose prompted by this result

This will be a valuable resource in the future.

Assuming that your TSH was over 10 on diagnosis, the Levo seems to have brought your level down (which is good). "Borderline" doesn't come into it now. You have a diagnosis of hypothyroidism and are being treated for it with Levo. The aim of a treated hypo patient generally is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.

So you have a long way to go to get your TSH down further. You should have had an increase in your dose of Levo of 25mcg then be retested in 6-8 weeks. The result of that test will almost certainly show the need for another increase in Levo, so another 25mcg and another retest after 6-8 weeks. This continues until your levels are where they need to be for you to feel well.

Your Levo should be on repeat prescription, with increases in dose when appropriate.

If you are in England you are now entitled to free prescriptions, the condition to tick on the form is "Myxodema".

Some GPs are very bad at managing hypothyroidism, it can be an advantage to earn as much as possible to that you can be one step ahead if necessary.

[Mummymonster in reply to SeasideSusie]

Thank you for replying. What I thought wasn’t right is that they were going to leave me with no medication, and as you say , telling me that I am borderline when I have been diagnosed. I have asked for the values but the receptionist could not give them so I have asked doctor to email me. I do think it’s a pretty poor show.

[SeasideSusie Remembering in reply to Mummymonster]

OK, I see. Well, to get your results, the GP has to agree (but that's just a formality, here in the UK we are legally entitled to our results) then the receptionist can print them for you.

You certainly should have your Levo on repeat prescription so I'd check that out to make sure, you don't want this palaver every time.

When you come to book your next test, and every time afterwards, this is what we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

[shaws Administrator in reply to Mummymonster]

You will probably find that quite a number of doctors don't have sufficient knowledge about dysfunctions of the thyroid gland. They seem to be reluctant to increase the dose of levo and they're afraid they will give us too much (very unlikely). They get nervous if the TSH is low (which we, the patients need) and may not increase our dose when it should have been. as the aim is a TSH of 1 or lower and a FT4 and FT3 in the upper part of the ranges. Again, the latter two are rarely tested.

[MichelleHarris in reply to SeasideSusie]

Lol Seaside Susie NICE guidelines are to start on 25mcg if 5O yrs old or over. I think thats far too low a dose and not elderly. I think its cruel x

[SeasideSusie Remembering in reply to MichelleHarris]

OMG they've lowered it, it used to be over 60 (or maybe even 65).

I wonder what age the NHS official scrap heap starts, I know I qualify for that ☹️

[MichelleHarris in reply to SeasideSusie]

LOL.

Not on here you’re not x

[helvella Administrator Thyroid UK in reply to MichelleHarris]

Are you sure? That is not how I read the recommendations!

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.

1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.

nice.org.uk/guidance/ng145/...

[MichelleHarris in reply to helvella]

That is strange. I read it in the BNF several times to start at 25mcg over 50. The pharmacist checked it too. I’ll have another look x

[helvella Administrator Thyroid UK in reply to MichelleHarris]

You are being really, really silly.

You are expecting some degree of agreement between NICE NG145 (new thyroid guidance) and NICE BNF! Why on earth should they say the same thing? It's only patients who will be improperly treated.

Indications and dose

Hypothyroidism

By mouth

For Adult 18–49 years

Initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily, dose to be taken preferably at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.

For Adult 50 years and over

Initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily, dose to be taken preferably at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.

bnf.nice.org.uk/drug/levoth...

[MichelleHarris in reply to MichelleHarris]

Individuals over 50 years and/or Patients with Cardiovascular Disease:

Initial dose: 12.5 to 25 mcg orally once a day

-Adjust dose at 6 to 8-weeks intervals until clinically euthyroid and TSH returns to normal

[helvella Administrator Thyroid UK in reply to MichelleHarris]

Where are you finding that information?

It is bad enough that we disagree with the NICE guidelines NG145, let alone that there are so many contradictions out there.

[Lora7again]

Your Doctor clearly does not have a clue, once you are diagnosed with hypothyroid it is a life long condition and you need to be on Levothyroxine for life. You should be increasing it by 25mcg until you feel well and your TSH is 1 or lower and your T4 and T3 is in the upper third of the range. I would find a Doctor who knows what they are doing. Sometimes I cannot believe how badly Doctors treat thyroid patients *shakes head* 😒

[Mummymonster in reply to Lora7again]

Thanks to both. I didn’t know about adjustments on the day of the blood test. I am a bit disappointed in the surgery, but I will say this to them.

[Treepie in reply to Mummymonster]

As Susie said we do not tell the medics what adjustments we make on the day as the idea is to get the highest TSH measure and avoid a reduction in dose. TSH has a circadian rhythm so we try to get the blood taken when it is higher as early as possible.

[SlowDragon Administrator in reply to Mummymonster]

ALWAYS get the actual results and ranges on all tests

do you have any actual blood test results? if not will need to get hold of copies.

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.

In reality many GP surgeries 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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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 and thyroid antibodies if not been tested yet

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Bloods should be retested 6-8 weeks after each dose increase

[SlowDragon Administrator in reply to Mummymonster]

Also watch out ...many people find different brands of levothyroxine are not interchangeable

Teva brand especially upsets many

healthunlocked.com/thyroidu...

[Mummymonster in reply to SlowDragon]

Thanks so much. I will request the print outs. My surgery prides itself on being online but doesn’t do blood tests results that way.They have 2 apprentice receptionists who look about 16, the conversation yesterday really exposed the limitations of this system of obtaining results.I haven’t actually seen a gp since my diagnosis, just had 1 short telephone conversation. I think I will complain, because yesterday I nearly ended up 6-8 weeks without medication. I don’t feel like anyone is even trying to help me or get a handle on this. The Gp had said they would test for antibodies but I don’t know if they did. I worked in social work for years, so try not to complain because I know how hard that is when working under pressure, but I think I may need to raise this with the practice manager.

[SlowDragon Administrator in reply to Mummymonster]

See/ ring a different Receptionist and politely request printed copies of your recent last two sets of test results. (Give dates of tests ideally) you want the tests from BEFORE starting levothyroxine and most recent results

Ask for them to be printed out and left at reception for you to pick up

Allow a day or two ...before going in to collect

[Miffie in reply to Mummymonster]

As you surgery prides itself on being online did you check that levo isn’t on a repeat which you could have ordered that way. If a receptionist was able to say you could have it where did she get that info? Probably by checking you had a repeat. No receptionist is allowed to prescribe.