Hypothyroidism: I have been having regular blood... - Thyroid UK

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Hypothyroidism

Ladybex profile image
10 Replies

I have been having regular blood tests on and off all this year that revealed borderline under active thyroid.

Took LEVOTHYROXINE which made me ill so come off it. Now tests reveal I definitely have it and to take Levo again. I am suffering without medication but wondered if there was anything else I could take instead of Levo?

My Endo appointment is not until September .. any advice would be lovely ...

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Ladybex profile image
Ladybex
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10 Replies
SlowDragon profile image
SlowDragonAdministrator

Which brand of Levothyroxine did you start on and at what dose?

Many people can only tolerate one or two brands.

Teva brand upsets many people, unless lactose intolerant

Can you add your most recent blood test results

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 Thyroid antibodies are raised and may need improving by supplements so that it's easier to tolerate Levothyroxine

Ask GP to test vitamins and antibodies if not been done already

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

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

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

About 90% of all 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 from standard starter dose of 50mcg.

Bloods should be retested 6-8 weeks after each dose change and increased in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

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

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

nhs.uk/medicines/levothyrox...

Ladybex profile image
Ladybex in reply toSlowDragon

Thanks slow dragon for all that info 😊

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

Recurring UTI is very common when hypothyroid

Many people see reduction in UTI once on correct levels of replacement thyroid hormones

Nipple discharge likely due to high prolactin - common with Hashimoto's

ncbi.nlm.nih.gov/pubmed/915...

Fibromyalgia is often linked to low FT3, and under treated or un-diagnosed hypothyroidism

Night sweats can be low B12. Low B12 is Extremely common with Hashimoto's

bmj.com/content/349/bmj.g52...

Joint pain linked to low vitamin D

ncbi.nlm.nih.gov/pubmed/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.

Gluten intolerance is extremely common with Hashimoto's, especially if vitamin levels are low

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

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

RockyPath profile image
RockyPath

If the levothyroxine makes you feel ill, it could also be that we are distant cousins (my ancestors worked in cotton mills of Manchester in the mid 19th century), and you're genetically predisposed to not convert the levothyroxine to the active hormone that your cells need. There are DIO1 and DIO2 polymorphisms that prevent us from utilizing levothyroxine therapy, but you'd have to take the genetic tests to prove this.

I struggled (suffered) for months on various levothyroxine kinds and increasing doses before I paid for the blasted genetic test myself and then showed the results to the endocrinologist. We could have gone on for months or even years if I hadn't.

SlowDragon profile image
SlowDragonAdministrator in reply toRockyPath

But with DIO2 you still need Levothyroxine, just need small dose of T3 added alongside

First step is still usually to get started on Levothyroxine

Ladybex profile image
Ladybex

I am waiting results of B12 ferritin Vit D and folate.. the brand of Levo I am going to start tomorrow is WOCKHARDT 25 and hoping this will help me as I feel like I’m dying sometimes ... constant rash .. fever ... waking up at night all hot and a lot of muscle pain ...

SlowDragon profile image
SlowDragonAdministrator in reply toLadybex

How old are you? If under 50 years old, it's recommended to start on 50mcg Levothyroxine (25mcg frequently makes people feel worse)

25mcg is enough to turn your own thyroid production down, yet not enough replacement thyroid hormones for daily function

But you may need to start slowly and grin and bear it for 6-8 weeks until get increase to 50mcg

Ladybex profile image
Ladybex in reply toSlowDragon

I’m 65 and have been given 25 and hope I dont get any worse ... guessing I have to wait 6 weeks for another blood test to find out ☹️

Ladybex profile image
Ladybex

Thank you and yes I agree ... I’m very aware and always eat healthy and drink lots of cooled boiled water every day 😊

Ladyofthewolves profile image
Ladyofthewolves

Hi, does anyone know of any weight loss tips for hypothyroidism. I’m 24 and have had hypothyroidism since 18. I would really like to lose weight as I’ve been struggling with my weight for years.

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