Why do I still have the symptoms?!: Hey, I’m... - Thyroid UK

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Why do I still have the symptoms?!

Dmh98 profile image
15 Replies

Hey,

I’m currently taking 125mcg Levothyroxine and my bloods have come back as normal yet I’m experiencing the symptoms worse than ever!

Just wondering if it’s possible to still have the symptoms of hypothyroidism even when at the correct dosage?

Has anyone had a similar experience?

Thanks :)

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Dmh98
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15 Replies
Kell-E profile image
Kell-E

If by correct dosage you mean normal looking lab results, then yes, many people suffer from hypo symptoms with 'normal' results. If you post your results with the ranges then people can offer better suggestions.

Dmh98 profile image
Dmh98 in reply to Kell-E

Unfortunately I don’t have a copy of the results. Glad to know that this is normal though. I wish there was something I could do to feel better!

Thanks for your response

Kell-E profile image
Kell-E in reply to Dmh98

Don't we all wish for that! But unfortunately wishing just won't cut it. You need to get a copy of your own results because to feel better you will need to be more involved and proactive.

Clutter profile image
Clutter in reply to Dmh98

Dmh98,

Normal simply means your results are within range. TSH 0.2 and TSH 4.2 are both normal in a range 0.2 - 4.2 but most people will feel dreadful with TSH 4.2 and need a dose increase.

Ask your GP receptionist for a printout of your results and ranges and post them in a new question and members will advise whether you are optimally dosed.

Dmh98 profile image
Dmh98 in reply to Clutter

I will do, thankyou!

cjrsquared profile image
cjrsquared

Normal just means ‘in range’ but that might not be normal for you. For example prior to a TT my TSH was 1.1 ft3 4.9 and ft 4 19.8. Post surgery on levothyroxine only TSH 0.22 ft3 3.1 (below bottom of range) and ft4 12.6 (bottom of range). I was told in normal range but had horrendous hypothyroid symptoms. Once I was medicated back to my normal I felt much better.

Do you have hashimoto’s disease (often called autoimmune hypothyroid)? If so you need to research further. If possible also have blood tests to assess ferritin, folate, vit b12 and vit d as low levels of these mean that your body is unable to utilise levothyroxine properly. If you are in the uk you are legally entitled to copies of your blood results, so get copies and post in a new thread so members can give more advice. Good luck.

Dmh98 profile image
Dmh98 in reply to cjrsquared

Hey, I’m not sure if I have Hashimotos or not. I’m going back in a couple of weeks and I’ll ask, aswell as getting a copy of my results. Thankyou for your help! 😊

SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies

UK GP practices are supposed to offer 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. They can make nominal charge for printing but many will do so for free (£10 max)

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

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

Essential to test thyroid antibodies plus vitamins

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 and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dmh98 profile image
Dmh98 in reply to SlowDragon

Thankyou for your help, I will get a copy of my results :)

Snorkie profile image
Snorkie

Levothyroxine has bad side effects. I was on it for 6 years. Gained 100 lbs had vertigo migraines joint pain etc.... Switched thyroid meds to Nature Throid and wow!!! I am doing so much better. Read the side effects of the levothyroxine you will be surprised. You must take vitamins too. I follow Isabella Wentz and so far everything she suggests I do and have had terrific results.

Ari3 profile image
Ari3 in reply to Snorkie

Hi there could you tell me what vitamins do help?same here I had terrible side effects from Levothyroxine and now iam on Thiroyd NDT

Snorkie profile image
Snorkie in reply to Ari3

I have an entire list of vitamins I take. Most people I share it with say it’s too much. I have a vitamin guru I go to. I can email it to you if you want and where to buy them. It’s not just one vitamin. It’s a combination of many that help. My email is <personal email address redacted> if you want me to send it to you just message me there and I will share it with you.

[ Email address has been removed for your own safety. To communicate with others, use the Private Message system. You can, of course, choose to exchange email addresses with Private Messages but at least that is not in public. ]

Ari3 profile image
Ari3 in reply to Snorkie

Thank you I have dropped and email to you!

Dmh98 profile image
Dmh98 in reply to Snorkie

Hey, thanks for your response! I didn’t even realise that there were other options of medication. I’ll have a look into it and see if things improve! Thanks again :)

SlowDragon profile image
SlowDragonAdministrator in reply to Dmh98

Suggest you read as much as possible

Essential to get full testing. Very many have to pay for private testing if you can't get FT3 and antibodies tested

Isabella Wentz (the Thyroid Pharmacist) is well regarded and one of leading experts for Hashimoto's

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

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

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

Low vitamin levels 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

Ideally ask GP for coeliac blood test first

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...

thyroidpharmacist.com/artic...

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