Thyroid UK
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Stopping thyroid medication

I am new and thinking of stopping thyroid medication since I feel no better on it since diagnosis of hypothyroid in 2014. Recently increased from 100mcg levothyroxine to 175mcg levothyroxine. Experiencing hypo symptoms of heavy periods, depression, feeling cold, tiredness, joint pain. Thanks in advance.

Oct 2017 (100mcg levothyroxine)

TSH 6.9 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

13 Replies
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EsterJ,

An increase from 100 to 175 is a huge leap. Why such a big change?

Do you have any test results you'd be willing to post? Any more background?

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Endo told me 75mcg increase is no big deal. Will post results now

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EsterJ,

From a strictly personal point of view, I take 112. If I drop to 100 or increase to 125, I feel wrong. Do you see why a change of 75 appears so gigantic to me?

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Thanks I have had reductions from 200mcg to 100mcg and just went along with it

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Results added

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EsterJ,

I agree you should have an increase, but 75 micrograms - 75% - in one go still looks like a heavy-handed approach. Even if you end up there, doing so all at once doesn't look like a thoughtful, considered approach but rather rash and not sufficiently understood.

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EsterJ No. Don't stop your thyroid hormone. You are hypothyroid, you need your thyroid hormone replacement. Stop it and eventually, after a long time of feeling very ill, your organs wont have the active hormone they need and will start to pack up.

There is obviously something wrong that your doctor is missing. And if he is changing your dose of Levo in 75mcg and 100mcg increments then he hasn't a clue how to treat hypothyroidism, he might be better working in our local chippy, I think they have vacancies!

Some questions to try and get to the bottom of your problem:

1) Have you had antibodies tested - do you have autoimmune thyroid disease aka Hashimoto's?

2) Have you had nutrients tested:

Vit D

B12

Folate

Ferritin

Iron Panel

Full blood count

If you haven't had everything in (1) and (2) tested then ask for them to be done, or do a private home test with one of our recommended labs.

If you have had them tested, please post the results, with reference ranges, for comment, and say if you are supplementing with anything and the dose.

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Thyroid antibodies are TPO antibodies 704.5 (<34) and TG antibodies 355.3 (<115)

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ESterJ

TPO antibodies 704.5 (<34) and TG antibodies 355.3 (<115)

Have you ever been told that your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it? The antibody attacks cause fluctuations in symptoms and test results.

I have an idea that you may have had a few changes in your thyroid meds due to test results (and maybe symptoms?). If so then this would be because when the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these swings, then they panic and reduce or stop your thyroid meds.

The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.

I'm guessing that your doctor doesn't know any of this and panics if he sees a low TSH or an over range FT4.

So you need to read and learn about Hashi's, you wont get any help from doctors here, they tend to dismiss antibodies as being of no importance and simply don't understand how Hashi's affects the patient, and the swings.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

Hypo and gut/absorption problems go hand in hand and very often the result is low nutrient levels. Have you had those vitamins and minerals tested that I mentioned above? If not it is essential that they are done. Hashi's tends to trash levels, they need to be optimal for thyroid hormone to work, so you need to know if you have any low levels or deficiencies and supplement to get them to optimal levels, then things can start coming together.

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Thanks I will post what vitamin and mineral levels I have. When I have overmedicated results my symptoms are hypo but when I have undermedicated results my symptoms are hyper

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I also have PCOS but this isn't treated.

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PCOS often accompanies Hypo and Hashi's. I have no personal knowledge of it but here again you can help yourself - some links to get you started, I haven't read them, just looked a few up for your so I hope they help:

pcosaa.org/is-there-a-cure-...

hypothyroidmom.com/pcos-and...

pcosnutrition.com/thyroid/

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PCOS and Hashimoto's are both linked to leaky gut and gluten intolerance

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.

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...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

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