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Sammi_T profile image
7 Replies

Hi I am new to this site. Since age 19 (now 32) I have been having symptoms of hair loss, feeling cold, dry skin, hard stool, weight loss but now weight gain, pins and needles, dizziness, ringing in ears, also goitre? Taking 75mcg levothyroxine and diagnosed 2012 with hypothyroid. Thanks

TSH 6.01 (0.2 - 4.2)

Free T4 13.3 (12 - 22)

Free T3 3.0 (3.1 - 6.8)

TPO antibodies 303.5 (<34)

TG antibodies >1300 (<115)

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Sammi_T
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SeasideSusie profile image
SeasideSusieRemembering

Sammi_T Can you post your latest test results, with reference ranges, for members to comment.

75mcg is quite a low dose, little more than a starter dose. Have you been on a higher dose before? If so and it's been reduced, why? Have you had antibodies tested, do you have Hashimoto's?

Some of your symptoms can be indicative of low nutrient levels. Have you had the following tested, if so post the results with ranges and say if you are supplementing

Vit D

B12

Folate

Ferritin

Iron Panel and Full Blood Count (to show iron deficiency anaemia).

Sammi_T profile image
Sammi_T in reply to SeasideSusie

Have put latest results in post, was feeling better on 75mcg levothyroxine and 10mcg T3. Taken off T3 a month ago and had vits and mins tested. No idea how to supplement because they aren't improving on what I take. Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Sammi_T

TSH 6.01 (0.2 - 4.2)

Free T4 13.3 (12 - 22)

Free T3 3.0 (3.1 - 6.8)

Well, these show you are grossly undermedicated.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo only. Add T3 into the mix and TSH may well be suppressed, FT4 can lower and FT3 should be nearer the top of it's range.

Your TSH is over range, your FT4 very low and your FT3 (the most important test because T3 is the active hormone every cell in our bodies need) is below range.

You need to ask for an immediate increase in your Levo to bring your TSH down and raise your free Ts. In support of your request, show your GP this article from Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, which was published in Pulse Magazine (the doctors' 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)."

Email louise.roberts@thyroiduk.org for a copy, print it and highlight question 6 to show your GP.

You need an increase of 25mcg Levo immediately, followed by a retest in 6 weeks' time with another 25mcg increase, and repeat testing/increasing until your test results are in line with those recommended by Dr Toft if that is where you feel well. If your T4 to T3 conversion is poor

then you should be given your T3 back.

**

TPO antibodies 303.5 (<34)

TG antibodies >1300 (<115)

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 causing hypo to hyper swings and back again. Adjustment of dose during these swings can help.

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.

Most doctors either don't know what happens with Hashi's or dismiss antibodies as being of no importance. However, the antibody attacks will affect you so best to read and learn so you can help yourself.

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

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

Often Hashi's patients can have gut/absorption problems and that may be affecting the absorption of your vitamin and mineral supplements. Post your results, with ranges, and say what you are taking and let's see if we can improve things there.

Sammi_T profile image
Sammi_T in reply to SeasideSusie

Ok will do this. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Sammi_T

Do you have any T3 to add back in?

Why did T3 stop? Was it endo or just GP saying can't have it any longer

Do you have any test results when on T3?

What does GP suggest now a TSH is far too high, T3 too low and vitamins dire

High antibodies is Hashimoto's this very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12.If they are too low they stop Thyroid hormones working.

your vitamin levels on other post are dire. Were they this bad on T3? Or have vitamin results got worse since you stopped T3

Either way you need to supplement at high level to improve as per SeasideSusie excellent detailed advice

But with Hashimoto's we also need to help repair the gut, hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

scdlifestyle.com/2014/08/th...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

drbradshook.com/understandi...

Read as much as possible about Hashimoto's. Medics ignore are baffled by it. We need to manage the condition ourselves. Keep good records, try to establish your root causes. May just be gluten, can be all dairy or casino in cow's mild (but not sheep or goat)

The Thyroid Pharmacist website and her excellent video series The Thyroid Secret are all full of masses of info.

Sammi_T profile image
Sammi_T in reply to SlowDragon

Yes I have 3 months of T3 left, endo told me T3 was unsafe to take.

Results when taking levo and T3

TSH <0.02 (0.2 - 4.2)

Free T4 20.6 (12 - 22)

Free T3 5.6 (3.1 - 6.8)

Vitamin and minerals were better when I was taking t3

SlowDragon profile image
SlowDragonAdministrator in reply to Sammi_T

If you read many posts on here you will see many have been similarly poorly treated.

Join the T3 campaign, see Thyroid Uk main site of this support group

You have two main options on T3 if you decide to go back on it

Either email Louise at Thyroid Uk for list of recommended thyroid specialists. Some are T3 friendly, not all are private

Many have to advise their own patients to buy T3 over the internet as some NHS CCG's have tried to ban prescribing NHS T3

Louise.roberts@thyroiduk.org.uk

NHS England have hinted they are trying to resolve favourably, but it's not decided yet

Or 2nd option is self medication.

Many have been forced to do this already.

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