First post: As the title suggests this is my... - Thyroid UK

Thyroid UK

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Topaz33 profile image
15 Replies

As the title suggests this is my first post. I have come here because I feel very alone with my hypothyroidism. Family don't seem to understand and I feel that my symptoms are wrecking my life. I have had my dose of thyroxine moved up from 125/150 to 175 today but no matter what dose I take or whether I take it with T3 I still feel the same. Symptoms are:

Crippling fatigue

Muscle cramps in legs

Periods flooding my clothes

Hands and feet going so cold they turn white and tingly

Breathlessness

Pins and needles in legs and feet

Carpal tunnel syndrome

Joint aches and pains

Hair loss

Eyebrow loss

Gritty eyes

Clumsiness

Dizziness

Hypertension

Tremor

Swollen legs

Low confidence

Brain fog

Swollen ankles

Puffy eyes

Looking washed out

I would post my thyroid results but the endo says they are optimal. If I need to do this please let me know and I will do this.

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Topaz33
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15 Replies
marram profile image
marram

Never mind what the endo says, post them anyway! I strongly suspect it will just be the TSH. No need to feel alone, there are thousands of us here. xxxx

Topaz33 profile image
Topaz33 in reply to marram

TSH 1.87 range 0.27 to 4.20

Free T4 15.3 range 12 to 22

Free T3 4.1 range 3.1 to 6.8

They were done last month

Clutter profile image
Clutter in reply to Topaz33

Topaz33,

If your results were optimal you would be feeling well. Those results show there is scope to increase dose to raise FT4 and FT3 and reduce TSH and 175mcg will help to do this.

Hypothyroid patients are often low or deficient in ferritin, vitamin D, B12 and folate which can cause symptoms similar to hypothyroid symptoms so ask your GP to test.

Topaz33 profile image
Topaz33 in reply to Clutter

These were done last month I haven't heard back about these

Clutter profile image
Clutter in reply to Topaz33

Topaz33,

Chase them up. They should be available by now. Write a new post and members will advise.

marram profile image
marram in reply to Topaz33

Yes, these results show that you are only just in range, and most people feel better when their T4and T3 are well up in the range, and the TSH is at the lower end of the range.

I can sympathise totally. I've been on thyroxine since may last year. My tsh was 9.28 when diagnosed. I'm now up to 75mg. Daily I feek weak thighs, crippling chronic fatigue, brain fog, off balance feeling as I walk, cold at times, severe anxiety, low mood and it's all led to agoraphobia. Horrible. I also cannot do housework or take kids to the park without a severe crash that lands me in bed for a couple of days with bad weakness and fatigue. I had a crash yesterday. It's a nightmare. I feel your pain.

Yes ask for your results. You can ask your specialists secretary if you call thst department and they may post them to you or even email. I'd then post the results with ranges here for advice.

Have you ever had your ferritin, folate, b12 and vitamin d tested? They can cause a lot of the symptoms you're experiencing.

Julie

Topaz33 profile image
Topaz33 in reply to

Hi I had them tested last month but I haven't heard back about them

SlowDragon profile image
SlowDragonAdministrator

Also do you know if you have had thyroid antibodies checked? There are two sorts, TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both antibodies are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO AND high TG, but negative TPO and raised TG is possible, though rarer.

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies slowly over time too.

Vitamin and minerals levels are very important. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

thyroidpharmacist.com

Great web documentary re-run starts March1st

thethyroidsecret.com/trailer/

chriskresser.com/the-gluten...

hypothyroidmom.com/92-of-ha...

amymyersmd.com

Topaz33 profile image
Topaz33 in reply to SlowDragon

I have but I don't know what they mean

Anti TPO antibodies 175 range below 34

Anti TG antibodies 278.3 range below 115

Is this Hashimotos

SlowDragon profile image
SlowDragonAdministrator

Yes - you have Hashimoto's

TPO any result higher than 34 & TG any result over 115 equals Hashimoto's

Going gluten free can seem daunting at first, but definitely worth trying. Many of us find it gives immediately significant reduction in symptoms, others it's a more gradual improvement

Masses of gluten free alternatives available in shops. Most supermarkets have a good "Free from" section. M&S & Tesco are my favourites

spongecat profile image
spongecat

Hi Topaz33

I'm sorry you have had to find us but WELCOME, there are many kindred spirits here!

If your family is not being very understanding, you can always print this off and show them.....I am Hashimoto's...... facebook.com/notes/thyroid-...

There's loads of information here and always a sympathetic ear. :)

Topaz33 profile image
Topaz33 in reply to spongecat

Thanks for this

Josiesmum profile image
Josiesmum

This is a good website for information:

thyroidpharmacist.com

There is a very good (free) video series starting on 1 March, you can register here:

thethyroidsecret.com/traile...

Rapunzel profile image
Rapunzel

Hey Topaz

This is a good way to explain to people as well. There are a number of sites given over to explaining the spoon theory - don't be put off by the mention of disability

en.wikipedia.org/wiki/Spoon...

You are not alone :)

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