Thyroid UK
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Antibodies attacking thyroid?

Hi I am new. I am 32 years old and female and have been told by GP I have antibodies attacking thyroid? Taking 50mcg levothyroxine, felt better on higher doses. I am tired, have sharp pains and soreness in throat, heavy periods, dry skin, muscle aches. Thanks for reading.

*TPO antibodies 849.5 (<34)

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The antibodies mean you have Hashimoto's disease, aka autoimmune thyroiditis.

If you felt better on higher doses, why did you cut back? 50 mcg is more a starting dose than a maintenance dose.

The only way to know for sure if you are under medicated (although you certainly seem to be) is to post your lab results here (with reference ranges): TSH, free T4 and, if it was ordered, free T3.

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GP reduced dose

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*TSH 7.4 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 3.3 (3.1 - 6.8)

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Good grief! What reason did they give for the dose reduction? You need a dose increase as TSH is over range. We normally feel better with TSH around 1-2. Please make an urgent appointment with another doctor to get a dose increase. The only way I sorted this was to go to another surgery as an urgent on their afternoon off.

If they have been mucking around with your dose please give us dose and results, with time on that dose so that we really understand. And welcome, you will get support and good advice here.

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Dose reduction was because of below range TSH and that I don't look hypo

(Aug 2017 150mcg levothyroxine)

*TSH 0.03 (0.2 - 4.2)

Free T4 20.9 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

(Jan 2017 150mcg levothyroxine)

TSH 1.65 (0.2 - 4.2)

Free T4 16.1 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

Nov 2016 (175mcg levothyroxine)

TSH 3.84 (0.2 - 4.2)

Free T4 17.2 (12 - 22)

Free T3 4.0 (3.1 - 6.8)

Thanks

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That was a shame. Dose increases and reductions should be made in 25mcg increments so never that big a reduction. I repeat that is doctor doesn't know what they are doing. A low TSH worries docotrs but once we medicate at a level to sort out symptoms FT4 and FT3, the TSH is usually suppressed. I think that you now have a slow path to steadily increase the dose again.

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Are those results on 50 mcg? If so, why didn't your doctor increase your dose? You are terribly under-medicated. Not surprising you don't feel well.

You do have Hashi's, with those antibodies. So, your hypo will get worse and worse as your gland is slowly destroyed. But, there could be periods when your blood hormone levels rise, and the TSH goes low, as the gland slowly dies, and this is what doctors don't understand. They get in a panic about 'going hyper' and slash your dose. But, you will always go back to being hypo, again, at some point, and need the dose increased again. And, the only way to calm this down, is to keep your TSH suppressed.

A lot of people seem to associate Hashi's and cancer. But, antibodies do not indicate cancer, and I don't know where they get that idea. Having Hashi's does not automatically mean that you will get thyroid cancer. Thyroid cancer can happen to anyone, Hashi's or not, but it is one of the rarer cancers. :)

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Thanks my GP and endo say I am remarkably thin for a hypo patient and in increasing my dose I will lose more weight

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Geez! We struggle if we are overweight as they believe we are over eating and they make similarly harmful assumptions if we are not. Some of us are thin but we are still hypos.

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So, they prefer to let you struggle, and develop heart and kidney problems, and lord knows what, rather than do a bit of research and find out that being under-weight can also be a hypo symptom, and should resolve when patient optimally treated! One really does wonder where they were hiding when brains were handed out! Insist that you need that increase now!

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Rubbish! I am normal/thin but have stayed the same on meds - it's often adrenal problems that make you thin, as your body sometimes compensates for low T3 by increasing adrenaline to speed you up, so you don't get fat.

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So it's not cancer? I was told on another site that it is

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That would have frightened the life out of you - no it isn't cancer. It is antibodies which attack your thyroid gland until you become hypothyroid.

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No, it's not cancer, I forgot to say in my previous post that autoimmune thyroiditis (Hashimoto's disease) is by far the most common cause of hypothyroidism.

Your TSH is seriously out of range. Most hypothyroid people on medication feel best when their TSH is 1 or lower. Many with autoimmune hypothyroidism even need their TSH below range as that seems to calm antibody activity down.

Your free Ts are barely in range and much too low. If on T4 only, your free T4 levels should be near or at top of range, in order to make sure enough T3 is converted (most of the T3 comes from the conversion of T4 in healthy individuals or people taking T4 drugs only). Your free T3 levels should ideally be in the top third of range.

Please forgive my bluntness, but your GP does not seem to have a clue when it comes to the treatment of thyroid disease in general and autoimmune thyroid disease in particular...!

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Thanks another forum told me I have cancer because the ultrasound scan showed a vascular and lumpy thyroid but no biopsy done so I have been thinking all sorts

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I can understand that you are worried about the scan results. Ask your doctor about this and tell him you want to be sure that it isn't cancerous. He may not realise that you are thinking it may be cancer. There must be several reasons for those scan results.

Worrying doesn't help any of us.

Keep fighting !

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You have a thyroid hormone disease called Hashimoto's and that's because you have antibodies in your blood. The proper name is Autoimmune Thyroid Disease and I'll give you a couple of links.

You don't say when you were diagnosed and if you've had a full Thyroid Function test which is TSH, T4, T3, Free T4, Free T3 (antibodies are not always included but I know you have them tested).

Blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and if on levothyroxine (or other thyroid hormones) you allow a 24 hour gap between last dose and test and take afterwards. This helps keep the TSH at its highest as it drops throughout the day and prevents the doctor adjusting dose unnecessarily.

To reduce the antibodies which wax and wane, sometimes too much and at other times less going gluten free can help.

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

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

If you can get a print-out from the surgery of your latest blood test results, with the ranges, post on a new post if you haven't them to hand at present (always get a print-out) as it will enable members to respond.

The fact that you are on a starting dose, i.e. 50mcg and your doctor has already reduced you back to this he is going only by your TSH result. Very few doctors know best how to get us to good health and adjusting doses according to the TSH alone is not warranted unless the patient is complaining of being 'hyper' i.e. too much thyroid hormone replacement (which is rare).

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Diagnosed 2013

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*TSH 7.4 (0.2 - 4.2)

Free T4 13.8 (12 - 22)

Free T3 3.3 (3.1 - 6.8)

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Your doctor doesn't know how to treat someone with hypothyroidism (hashi's) as your TSH should be 1 or lower. Both FT4 and FT3 are at the bottom of the range and should be towards the upper part.

You desperately need an increase. The aim is a TSH of 1 or below. Not above 2, 3 etc etc. You need an increase every six weeks of 25mcg until TSH is 1 or below.

Phone and tell him to please increase your dose or if he hasn't seen your blood test results, tell him the aim is a TSH of one as you've taken advice from the NHS Choices for help/advice Thyroiduk.org.uk.

Levothyroxine is T4 only. It has to convert to T3. T3 is the only active hormone and it is this which is required in our billions of receptor cells, you don't have sufficient hormone replacement.

We have to read/learn and get knowledge ourselves as it isn't forthcoming from doctors or even some endocrinologists.

Follow the procedure for Blood tests ie have always to be at the very earliest etc etc.

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Your 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

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.

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

Ask GP to test these and also to do blood test for coeliac (its notoriously unreliable but it might get it into GP's dense head that you can be thin and very hypo)

Poor gut function can lead too food intolerances, by far the most common reason 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...

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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