Thyroid UK

Symptoms

Hi I'm new, I was diagnosed with hypothyroidism 2013 and have the following symptoms on 150mcg levo - dry skin, losing hair, constipation, fatigue, pain in joints, heavy periods, dark circles under eyes. My endo is saying my symptoms can't possibly be thyroid related and I was wondering if I could seek advice on here to see what they could be.

Many thanks

TSH 0.03 (0.2 - 4.2)

Free T4 24.9 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

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Maddie7

A few more details might help us to help you. Can you answer a few questions please?

Have you had thyroid antibodies tested?

Have you had vitamins and minerals tested - Vit D, B12, Folate, Ferritin? Are you supplementing for any, if so what dose?

Have you had dose changes - if so what were the results at the time, why the change?

Ever had T3 added to your Levo, and subsequently taken away again, if so by whom?

Those results above, was that on 150mcg and what was said about them?

Reply

TPO antibodies 778.4 (<34)

TG antibodies 256.3 (<115)

Yes I have had vits and mins tested and I supplement

I had dose changes, quite a few. Do you need all of them?

Never been on T3

Results were on 150mcg and endo wants to reduce but I don't feel overmedicated

Reply

Maddie

TPO antibodies 778.4 (<34)

TG antibodies 256.3 (<115)

This is at the root of your problem. Has anyone bothered to tell you that you have autoimmune thyroid disease aka Hashimoto's as confirmed by your high antibodies? This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. It's very worrying as Hashi's is the most common cause of hypothyroidism and fairly basic stuff in the grand scheme of things. Most endos are diabetes specialists and know very little or nothing about treating hypothyroidism. Hence, you need to read, learn, understand and help yourself where Hashi's is concerned.

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_...

I had dose changes, quite a few. Do you need all of them?

Now we know that you have Hashi's and have never had T3 added and removed, just post a few, maybe where you may have had a dose reduction, say what you were taking at the time and what explanation was given for reducing the dose (we probably know the answer!)

**

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. We see daily on here that Hashi's patients supplement for low nutrient levels but they never improve, and very often they are on the wrong dose of supplements.

Yes I have had vits and mins tested and I supplement

Please tell us the results, say what you are supplementing with, how long for and the dose.

**

Results were on 150mcg and endo wants to reduce but I don't feel overmedicated Never been on T3

TSH 0.03 (0.2 - 4.2)

Free T4 24.9 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. See thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft 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 dionne.fulcher@thyroiduk.org print it and highlight question 6 to show your doctor.

You can obtain a copy of the article by emailing dionne.fulcher@thyroiduk.org Question 6 refers.

Dr Toft has recently published an updated article in which he suggests many people would benefit from adding T3 to Levo and this is what you need. Your FT3 is far to low in range. You could do with a slight reduction in your Levo to bring your FT4 down into range and the addition of some T3.

The link to Dr Toft's new article is at the bottom of SlowDragon's reply to this post healthunlocked.com/thyroidu...

Sorry I can't link to it myself, my PC is playing silly beggars today!

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No problem about the link, I have all results here. Sorry I know there's a few.

OCT 2017 – 125mcg Levo - reduction from Sep 2017

TSH 5.4 (0.2 – 4.2)

FREE T4 13.8 (12 – 22)

FREE T3 3.1 (3.1 – 6.8)

SEP 2017 – 150mcg Levo

TSH 0.03 (0.2 – 4.2)

FREE T4 21.3 (12 – 22)

FREE T3 4.0 (3.1 – 6.8)

JAN 2017 – 150mcg Levo - reduction in Nov 2016 because of where FT4 was

TSH 1.67 (0.2 – 4.2)

FREE T4 15.9 (12 – 22)

FREE T3 4.3 (3.1 – 6.8)

NOV 2016 – 175mcg Levo - increase because of symptoms and where TSH was

TSH 3.89 (0.2 – 4.2)

FREE T4 17.2 (12 – 22)

FREE T3 4.6 (3.1 – 6.8)

MAY 2016 – 150mcg Levo - increase because of symptoms and where TSH and FT4 was

TSH 3.86 (0.2 – 4.2)

FREE T4 13.3 (12 – 22)

FREE T3 4.3 (3.1 – 6.8)

FEB 2016 – 125mcg Levo - reduced because of low TSH and above range FT4

TSH 6.7 (0.2 – 4.2)

FREE T4 12.9 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

JAN 2016 – 175mcg Levo

TSH 0.08 (0.2 – 4.2)

FREE T4 22.8 (12 – 22)

FREE T3 4.7 (3.1 – 6.8)

AUG 2015 – 175mcg Levo - increase because of May 2015 results

TSH 1.30 (0.2 – 4.2)

FREE T4 19.4 (12 – 22)

FREE T3 4.0 (3.1 – 6.8)

MAY 2015 – 150mcg Levo - increase because of Mar 2015 results

TSH 5.26 (0.2 – 4.2)

FREE T4 25.3 (12 – 22)

FREE T3 5.2 (3.1 – 6.8)

MAR 2015 – 125mcg Levo - increase because of Nov 2014 results

TSH 3.80 (0.2 – 4.2)

FREE T4 13.1 (12 – 22)

FREE T3 4.1 (3.1 – 6.8)

NOV 2014 – 100mcg Levo - increase because of Sep 2014 results

TSH 6.10 (0.2 – 4.2)

FREE T4 15.2 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

SEP 2014 – 50mcg Levo - added because investigations ended

TSH 2.57 (0.2 – 4.2)

FREE T4 14.2 (12 – 22)

FREE T3 4.1 (3.1 – 6.8)

AUG 2014 – no Levo because underwent adrenal testing

TSH 0.02 (0.2 – 4.2)

FREE T4 27.6 (12 – 22)

FREE T3 6.2 (3.1 – 6.8)

MAY 2014 – 50mcg Levo because of symptoms of over medication

TSH 5.01 (0.2 – 4.2)

FREE T4 19.7 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

MAR 2014 – 50mcg Levo because of symptoms of over medication

TSH 1.87 (0.2 – 4.2)

FREE T4 13.3 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

DEC 2013 – 125mcg Levo increase from Nov 2013 results

TSH 4.6 (0.2 – 4.2)

FREE T4 15.6 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

SEP 2013 – 100mcg Levo incremental increase from starter dose of 25mcg

TSH 4.3 (0.2 – 4.2)

FREE T4 15.3 (12 – 22)

FREE T3 4.1 (3.1 – 6.8)

JUL 2013 – when diagnosed

TSH 38.3 (0.2 – 4.2)

FREE T4 10.1 (12 - 22)

Reply

Reasons added now. I don't feel overmedicated though and my results some time ago on 150mcg Levo showed over range TSH

Reply

Maddie

Lots of changes and I think it really shows your doctor doesn't really know what he's doing. Just a couple of examples

JAN 2016 – 175mcg Levo

TSH 0.08 (0.2 – 4.2)

FREE T4 22.8 (12 – 22)

FREE T3 4.7 (3.1 – 6.8)

A decent dose of levo, below range TSH and very slightly above range FT4 - all actually perfectly OK according to the Dr Toft article I quoted above. But

FEB 2016 – 125mcg Levo - reduced because of low TSH and above range FT4

TSH 6.7 (0.2 – 4.2)

FREE T4 12.9 (12 – 22)

FREE T3 4.2 (3.1 – 6.8)

First of all, changes in dose should be done in 25mcg increments. And look what happened - TSH shot up and FT4 plummeted. And then

MAY 2016 – 150mcg Levo - increase because of symptoms and where TSH and FT4 was

TSH 3.86 (0.2 – 4.2)

FREE T4 13.3 (12 – 22)

FREE T3 4.3 (3.1 – 6.8)

Very little change in your free Ts and still TSH is too high, no wonder you were having symptoms.

Now this is what I don't understand:

NOV 2016 – 175mcg Levo - increase because of symptoms and where TSH was

TSH 3.89 (0.2 – 4.2)

FREE T4 17.2 (12 – 22)

FREE T3 4.6 (3.1 – 6.8)

Yes, increasing was the right thing to do because your May results were poor but then

JAN 2017 – 150mcg Levo - reduction in Nov 2016 because of where FT4 was

TSH 1.67 (0.2 – 4.2)

FREE T4 15.9 (12 – 22)

FREE T3 4.3 (3.1 – 6.8)

What on earth was wrong with your FT4 in November, it was only half way through it's range. No need to reduce your dose, in fact an increase was called for.

But then look at the difference here on the same dose

JAN 2017 – 150mcg Levo - reduction in Nov 2016 because of where FT4 was TSH 1.67 (0.2 – 4.2) FREE T4 15.9 (12 – 22) FREE T3 4.3 (3.1 – 6.8)

SEP 2017 – 150mcg Levo

TSH 0.03 (0.2 – 4.2)

FREE T4 21.3 (12 – 22)

FREE T3 4.0 (3.1 – 6.8)

And because your doctor didn't like your low TSH, despite FT4 being in range and a low FT3 he reduced your dose yet again so your TSH goes over range and your free Ts plummet again:

OCT 2017 – 125mcg Levo - reduction from Sep 2017

TSH 5.4 (0.2 – 4.2)

FREE T4 13.8 (12 – 22)

FREE T3 3.1 (3.1 – 6.8)

And now you have on 150mcg

TSH 0.03 (0.2 - 4.2)

Free T4 24.9 (12 - 22)

Free T3 4.2 (3.1 - 6.8)

and again you can see not consistent with other results on 150mcg.

This is all down to the Hashi's and the fluctuations it causes due to the antibody activity. Doctors don't understand and they don't know what to do. If they could see the connection between addressing the antibody activity, and addressing nutrient levels, Hashi's patients might start getting appropriately treated.

So let's see your vitamin and minerals results and what you are supplementing. You very likely need to a poor absorption and gut problem so that you can optimise your nutrient levels. SlowDragon has Hashi's herself so she gives the best information where this is concerned.

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Vitamins and minerals on this post or another? This is getting to be a long post :) Thanks

Reply

Maddie

If you start a new thread, then put a link back to this one otherwise anyone new reading it will ask lots of questions already asked and answered here.

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Gluten free diet? Oh my gosh that's a lot of food I'll be cutting out! :(

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I'm not gluten free but if you make a separate post about changing to a gluten free diet then members will respond with suggestions, and you will also see lots of related posts that you can check out. There's also Gluten Free Chats in the Topics list

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What is T3, sorry?

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Maddie

T3 is liothyronine, another replacement thyroid hormone, prescribed when conversion of T4 to T3 is poor which shows up when FT4 is high and FT3 is low.

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Ok, thanks for this. My FT3 is almost always low when my FT4 is high

Reply

Can you post your vitamin results and ranges

Highly likely to be far too low

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 stop Thyroid hormone working

Typically then bloods show high FT4 and low FT3. You feel hypo, endo or GP keep wittering on about lowering dose....which then makes vitamins lower etc

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

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...

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