new medication : hi , has anyone else experienced... - Thyroid UK

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new medication

Specky1981 profile image
17 Replies

hi , has anyone else experienced insomnia when starting on new meds?

it seems now both brands I have tried at 25mg ….lead to me having increased energy …but at night time ! When I want to relax. I also feel my heart racing a bit and don’t feel quite ‘right’ so I stop taking the meds and all goes back to normal. Doctor wants to see me for a review but not until end of September ! Any advise would be appreciated

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Specky1981 profile image
Specky1981
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17 Replies
Lalatoot profile image
Lalatoot

Specky It is not the medication but the amount you are on. The common starter dose is 50mcg. I too started on 25mcg and blamed the meds for an increasing number of symptoms. Levothyroxine is not like an aspirin - take an aspirin and the headache goes - levothyroxine needs to get into your system and it then needs to be slowly increased until the dose is right for you - then the body has to re-adjust to having enough thyroid hormones again. Things often get worse before they get better because the dose is too low.

Buddy195 profile image
Buddy195Administrator

Hi Specky1981, do you have any recent thyroid blood tests to share, so members can offer better advice? Is 25mcg Levo your first thyroid prescription? If so, this is a very small amount. You can always take Levo first thing in the morning rather than at bedtime if it disturbs your sleep (awaiting an hour to eat anything/ no caffeine for 2 hours).

Specky1981 profile image
Specky1981 in reply to Buddy195

Yes Buddy they were Serum free 10 (8-17)

Serum TSH level 9.13 (0.38 -5.33)

Many thanks for looking

Specky1981 profile image
Specky1981 in reply to Buddy195

I already take it early in the morning and it still causes the restlessness etc

SlowDragon profile image
SlowDragonAdministrator in reply to Specky1981

Try splitting the dose ….cut tablets in half and take half in morning and half at bedtime

Try Wockhardt brand next

they only make 25mcg tablets ….but if it suits you, get multiples of 25mcg tablets prescribed as dose is increased

Buddy195 profile image
Buddy195Administrator

What brand of Levo have you been prescribed? Many people don’t tolerate Teva. 25mcg is a starter dose, usually reserved for the elderly. As Lalatoot explains, you need Levothyroxine to replace missing thyroid hormones and you will continue to feel unwell until your TSH is 2 or under and your FT4 at least halfway through the range.

Specky1981 profile image
Specky1981 in reply to Buddy195

I tried Teva first and then changed to Pharma. I felt fine before taking the meds…other than insomnia related to being menopausal which I now have HRT for! but my hair is falling out and usually cold so decided to have blood test.

Buddy195 profile image
Buddy195Administrator in reply to Specky1981

Hair thinning/ shedding, feeling cold and increased insomnia are all related to being under medicated thyroid wise. I’m unsure of your age/ reason for GP starting you on such a low dose, but you need to take it regularly for 6-8 weeks before retesting your levels. Also ask GP to test key thyroid vitamins (ferritin, folate, vitamin D and Vitamin B12).

When you have your next blood test, try to get an early morning appointment and don’t take your Levothyroxine dose until after the blood draw.

Insomnia can be linked to peri- menopause/ menopause. It may be useful to have a look at Dr Louise Newson’s free Balance App re symptoms. I find it really useful for comparing HRT medications & having up to date research articles. There is also an ability to post questions.

healthunlocked.com/redirect...

Specky1981 profile image
Specky1981 in reply to Buddy195

Ok will do. Thank you for your help.I’m 47…. Doctor said I was ‘sub- clinical’ for thyroid ….do you know what that means? They possibly weren’t going to treat at all….but I am concerned I won’t have any hair left !!

Buddy195 profile image
Buddy195Administrator

Subclinical hypothyroidism is an early/ sometimes mild form of hypothyroidism. In many countries patients are treated with Levothyroxine when TSH levels rise above 2, but in the UK medics often wait until it reaches 10, which you are heading towards. The aim of Levothyroxine is to get your TSH levels back under 2. Many with hypothyroidism only feel better when TSH is under 1.

When you ask your GP re vitamin tests, also ask if they will test thyroid antibody levels. This will show if your condition is auto immune (aka Hashimotos). If your GP is reluctant to test, you could look to do this privately (eg Medichecks or Blue Horizon).

Specky1981 profile image
Specky1981 in reply to Buddy195

Thanks will do.I just don’t think I can last doing 6-8 weeks of disturbed sleep in the hope that the thyroid meds start to work …..so in a way I just want to stop taking them !

I work full time in a demanding job

SlowDragon profile image
SlowDragonAdministrator in reply to Specky1981

Request GP test vitamin D, folate, ferritin and B12 now

Likely to find these are low

Low vitamin D and low B vitamins both linked to insomnia

Standard starter dose of levothyroxine is at least 50mcg

Have you had thyroid antibodies tested yet?

With TSH over 5 and symptoms you should be on levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

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.

Specky1981 profile image
Specky1981 in reply to SlowDragon

Thank you so much.

No I haven’t had thyroid anti bodies tested yet - what does this do/mean?

I have just managed to get a doctors appt for next Tuesday so will discuss a lot then and will ask for all vitamin tests etc too

SlowDragon profile image
SlowDragonAdministrator in reply to Specky1981

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease is extremely common in women, often starts around time of hormonal changes….puberty, pregnancy, menopause

First thing is, do you have all your actual blood test results that got you diagnosed as needing levothyroxine?

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

healthunlocked.com/thyroidu...

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

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

plus both TPO and TG thyroid antibodies tested at least once for autoimmune thyroid disease

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

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 (Hashimoto’s or Ord’s thyroiditis)

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 on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

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

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

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

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...

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

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...

There’s almost 2 million people in U.K. on replacement thyroid hormones (levothyroxine) …..yet many GP’s are pretty clueless on how to manage this complex disease

Levothyroxine doesn’t top up failing thyroid, it replaces it…..so it’s essential to start on high enough dose and get increased as fast as tolerated

Extremely important to improve low vitamin levels at same time

Assuming that cause of your hypothyroidism is autoimmune thyroid disease GP should also do coeliac blood test (assuming you are eating gluten )

Lalatoot profile image
Lalatoot in reply to Specky1981

Specky whenever you think of stopping levo look at the attached post and study the photo on the left. this is how I looked when I all but stopped levo. It is not a look you want!healthunlocked.com/thyroidu...

Specky1981 profile image
Specky1981 in reply to Lalatoot

Thank you. It is such a struggle to know what to do!I am so tempted not to take Levo as my sleep was fine ! But I know things will probably just get worse !

Bearo profile image
Bearo

My sleep got worse when I started Levo, but as my dose went up, my sleep improved, (although still not as much as they say you need)

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