Should I be taking Thyroxine or not ? - Thyroid UK

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Should I be taking Thyroxine or not ?

Churchy12 profile image
8 Replies

Hi I am really after some help, I was told about a year and a half ago that I had Hashimoto’s after a blood test revealed I had very high antibodies (1300) at the time I was prescribed thyroxine 50mg which due to my anxiety I never took since then I’ve never had my antibodies re-checked but I’ve had my TSH and T4 done several times the result are usually TSH 4.62 or thereabouts and my T4 always around 12.6-12.8..... my last results in March came back as TSH 5.48 and my T4 12.8 again my GP advised no further action and today I went to the doctors for a second opinion who also said it’s fine you don’t need to start taking the Thyroxine. I started CBT about 3 months ago with one of my goals being to try to overcome the anxieties of taking the tablets but I’m now being told I don’t need to take the Thyroxine I’m so confused I was told at the time of diagnosis I would have this condition for life and that I’d be on the Thyroxine for life and having never taken the medication surely my body hasn’t just fixed itself I still get all the same symptoms plus extra I never had a year and a half ago when I was first diagnosed is there anyone that could advise me as I’m so down.

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Clutter profile image
Clutter

Churchy12,

Once you've had a positive thyroid antibody result NHS won't retest antibodies.

Some doctors think that hypothyroidism doesn't need treating when it is <10. Others think that once TSH is over range treatment should commence especially in the presence of positive thyroid antibodies and the patient exhibiting hypothyroid symptoms.

Read Dr. Toft's views in thyroiduk.org.uk/tuk/about_...

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

healthunlocked.com/thyroidu...

Churchy12 profile image
Churchy12 in reply toClutter

Hi

Thank you for replying... should I be taking Thyroxine then ? I have 25mg here at home which I’ve never taken but I was told to take 50mg at the time of diagnosis obviously never taken.... part of the reason I am having CBT was to build up to trying to take the tablets.

Clutter profile image
Clutter in reply toChurchy12

Churchy12,

Well, had you been able to take 50mcg it would have raised your FT4 and FT3 and reduced TSH.

I'm really not sure what to suggest if your GP now says you don't need to take Levothyroxine. I think you'll have to discuss it with GP. There's no point taking 25mcg or 50mcg if you aren't able to get a repeat prescription.

Churchy12 profile image
Churchy12 in reply toClutter

The problem is the GP I was diagnosed with isn’t my GP anymore I moved house and obviously had to change doctors I know different GP’s like to treat patients differently but all the reports and blogs I’ve read suggest that I should be taking Thyroxine.... it’s my own stupid fault for not just taking the medication when I was first diagnosed but my anxieties got the better of me that’s why I was then given 25mg because my anxieties were side affects so they lowered the dose to try and put my mind at rest

Clutter profile image
Clutter in reply toChurchy12

Churchy12,

I think you have to discuss with your GP.

SlowDragon profile image
SlowDragonAdministrator

Anxiety is a typical symptom of being hypothyroid, especially with Hashimoto's (high antibodies)

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Low vitamins are common as result of Hashimoto's (high thyroid antibodies)

Essential to test FT3 and FT4 plus vitamins

As you know you have high thyroid antibodies, it's not necessary to retest antibodies, but it may be informative, they may have increased further

Private tests are available

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels can affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

It can also improve anxiety

Ideally ask GP for coeliac blood test first plus vitamin tests if not already done

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Churchy12 profile image
Churchy12 in reply toSlowDragon

Thank you for your help, I am already doing a gluten free diet and have been since just before my initial diagnosis back in November 2016

Treepie profile image
Treepie in reply toChurchy12

From what you say you have the symptoms you had when diagnosed and you have gained some more . As Clutter says you need to discuss with your GP.

Anxiety is a symtom of hypothyroidism. As to the tablets , levothyroxine is not a drug it is a synthetic hormone that replicates what your own thyroid produces. Every cell in your body needs thyroid hormones.

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