Thyroid UK
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Feel worse and not better

Hi I have just joined, I have recently had my levo increased from 100mcg to 175mcg and I am having worsened symptoms of feeling cold, decreased sweating, weight gain, pins and needles, tinnitus, fatigue, dry skin, hair loss, constipation, heavy periods. Diagnosed 2014. Advice welcome thankyou

TSH 6.3 (0.2 - 4.2)

FREE T4 13.9 (12 - 22)

FREE T3 3.1 (3.1 - 6.8)

ANTI THYROID PEROXIDASE ANTIBODIES 104.5 (<34)

ANTI THYROGLOBULIN ANTIBODIES >1200 (<115)

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Was on T3 briefly which helped my symptoms

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Also taking supplements as well

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Was your dose increased from 100mcg to 175mcg in one go? If it was done in stages how did it get increased exactly, and at what time intervals?

Which dose do the results you give apply to and how long had you been on that dose when the test were done?

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Levo dose was increased in one go, GP said it was only an extra 75mcg. Above results done on 100mcg and I have been on 100mcg for 2 months. 175mcg I have been on for 4 weeks thankyou

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Levo should only be ever increased in 25mcg amounts. The body doesn't take kindly to big changes in hormone levels and needs to be given a chance to get used to a change in levels. The sequence of events should have been :

1) Realise that an increase is required after a test. Raise dose by 25mcg per day.

2) After about 6 weeks re-do testing.

3) If testing shows that an increase is required, increase by 25mcg per day.

4) Repeat this series of events until results look good and symptoms have been eliminated.

After 4 weeks on 175mcg I'm not sure whether you should go back down to 150mcg or 125mcg. However, I think after this length of time on 175mcg you should go down to 150mcg. But it would have been better for you to have increased to 125mcg initially, even if you would most likely have needed a further increase later.

greygoose what do you think?

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Yes, I agree. 75 mcg increase is too much, and the fact that he said 'only' 75, shows how really ignorant he is! You need to be careful of this doctor, and double check everything he says/does. He's in over his head, and could do more harm than good. Reducing to 150 mcg could make you feel a bit better. But, don't get tested until at least six weeks after changing down, because you won't get a true result in less time.

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Just noticed other members are posting vitamin and mineral results, I think I need help with mine, do I post? Thankyou

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Yes, post the results and say if you are supplementing.

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Yes, you should post your vitamin and mineral results too. Put them in a new post.

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I see you've just added your antibody results, which are both positive. This shows that you have "autoimmune thyroid disease" (the name recognised by UK doctors) or Hashimoto's Thyroiditis (the same condition, but the name is the one used by US doctors).

Having high antibody levels is generally ignored by UK doctors. There isn't a pill to reduce the levels so they pretend they don't matter once you've been diagnosed.

However, patients have discovered that reducing antibody levels helps to stabilise their thyroid function test results, and reduces the risk of a doctor changing your dose every time you have a test. Also, it reduces swings from hypo to hyper and back again.

The most common way of successfully reducing antibody levels is to go 100% gluten-free (no cheating). It doesn't matter if you have been found not to have coeliac disease. People with Hashi's often get major improvements anyway.

Going gluten-free doesn't help everyone however, so if you get no benefits within a few months you can always go back to eating gluten again.

Some people find they have to give up animal milk products instead of or as well as giving up gluten. I wouldn't suggest doing both at the same time because then, if you get an improvement, you won't know which one helped.

The NHS is unlikely to re-test your antibodies, so you will probably have to pay for your own tests to find out if your dietary changes are helping.

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Who started you on T3.

Was it same person who stopped it?

Can you post results from when taking T3 as well and include how much T4/T3 you were taking

Agree with the other comments. The fact your GP said it was "only" 75mcg indicates they have absolutely no idea about thyroid.

Imagine you are finding such large increase difficult to cope with.

If it's unbearable, then cut back to 150mcg for 6 weeks to allow body to get some recovery.

Or even 125mcg if 150mcg is too much

Daily vitamin C will help support adrenals.

Improving your other dire vitamins (on other post) will help. SeasideSusie will no doubt be along with her advice

We have had lots in similar circumstance turn up, having been started on T3 and then had it stopped. (possibly for financial reasons)

But with Hashimoto's (high antibodies) we need the vitamins sorted FIRST before T3 is added and most need to be strictly gluten free as well

Most endo's do not seem to understand the importance of vitamins and how Hashimoto's and therefore as result leaky gut and gluten really affects our gut function

I will add some links shortly

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Thankyou different endo who put me on T3 and my current one stopped it.

Results when on 75mcg levothyroxine and 10mcg T3

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

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Looks pretty good on paper

How did you feel?

Any vitamin tests from then?

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Thankyou I felt no different

Vitamin results at the time

Ferritin 110.3 (15 - 150)

Folate 5.9 (2.5 - 19.5)

Vitamin B12 541 (190 - 900)

Vitamin D 68.8

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Darn sight better than they are now.....but not brilliant

Vitamin D much too low

B12 and folate, when on T3 many find need to supplement B12 and good vitamin B complex as well to keep levels high

Gluten free diet likely essential too

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Links about Hashimoto's, gut and gluten

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

Poor gut function can lead to 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

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...

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