Newbie: Hi, I'm new to writing on health forums... - Thyroid UK

Thyroid UK

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Ellie290 profile image
15 Replies

Hi, I'm new to writing on health forums so please bear with me. I am 20 years old, female, and have been unwell for as long as I can remember. I had glandular fever when I was a child and there were more than one occasions where I was unwell with vomiting and diarrhoea.

I had a thyroid blood test done in January 2017 which showed a TSH above range 6.2 (0.2 - 4.2) and FT4 13.7 (12 - 22) and FT3 4.0 (3.1 - 6.8) no treatment was given and I was told the levels meant I was hyperthyroid. However I have been getting many hypothyroid symptoms and I have taken the ones from the Thyroid UK symptoms list: excessive tiredness, slow movements, slow speech, pins and needles, breathlessness, palpitations, anaemia, insomnia, loss of libido, repeated urinary tract infections, heavy eyelids, hoarse voice, muscle cramps and stiffness, goitre, cold intolerance, diminished sweating, vertigo, balance problems, dizziness, puffy eyes and face, choking fits, dry mouth, sore throats, difficulty swallowing numbness and hands and feet and legs, memory loss, poor concentration, lack of confidence, tinnitus, deafness, heavy periods, low fertility, slow pulse, headaches, dry skin, eczema, carpal tunnel syndrome, brittle and flaky nails, body hair loss and head hair loss, brittle hair, eyebrow loss and eyelash loss.

I also have low B12, low folate, low vitamin D and low ferritin and low calcium. Only thing is I haven't gained weight so the GP has considered this a red herring and he thinks I have coeliac disease. I had infantile eczema when I was child, as well and this has continued mildly into my early years as a young adult. I was sent for an ultrasound scan on my thyroid which showed a damaged and hypoechoic gland.

Any advice about what to do next would be appreciated, thank you.

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Ellie290
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15 Replies
LadyBarb profile image
LadyBarb

What immediately springs to mind is sack your GP and sue him/her for not being able to adequately diagnose you and causing you further health problems. Grrrrrr...

Yes, sorry, that's very 'reactionary' of me and probably impracticable ~ but your treatment, or considerable lack of it, is in my limited but personal opinion, absolutely dreadful.

For more informed advice, I hope that SeasideSusie and greygoose will help to advise you how to be as well as you can be ~ and how to deal with your (non) treatment.

Blessed Be, Barbara xx

Ellie290 profile image
Ellie290 in reply to LadyBarb

Thanks I tried to complain but I didn't get anywhere; they countered by saying I was more at fault than they were!

SlowDragon profile image
SlowDragonAdministrator

Is there a different GP you can see

Has your GP offered treatment for low vitamins?

If so what

What are your vitamin results (and ranges)

Your results in January show you are hypothyroid

NOT hyperthyroid

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Highly likely with low vitamin levels that you have Hashimoto's also called autoimmune thyroid disease

If 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, 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 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...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

greygoose profile image
greygoose

It's probably a good job you weren't given any treatment, if your doctor thinks those results mean hyper! You are, of course, hypo.

Was this the first time you've been tested? If so, wait a couple of months, and go back and ask to be tested again. A one-off high TSH could be due to an infection of some sort. Your doctor should have told you that. But, if I were you, I'd see another doctor!

When you go back, print out the ThyroidUK list of hypo symptoms, and tick off all those you have. And, ask for antibodies to be tested, as well.

You could, of course, have Coeliac, but that wouldn't affect your TSH. Is your doctor going to test you for that, in any way? The fact that you haven't put on weight means nothing. Not all hypos put on weight - although the vast majority do - but many don't, and some even lose weight, so that's not essential. There are over 300 known symptoms of hypo, you'd hardly be likely to have them all!

For your nutrients, you'll get better help if you post the actual numbers - results and ranges. But, if they're low, they will certainly be causing some of your symptoms. :)

Ellie290 profile image
Ellie290 in reply to greygoose

Thanks I tried to complain but they responded by saying I was more at fault than the GP! No I had TSH high before.

greygoose profile image
greygoose in reply to Ellie290

In what way were you to blame for anything? There's no way you can willfully raise your TSH!

Ellie290 profile image
Ellie290 in reply to greygoose

I complained about them when my TSH was high and I was told I had hyperthyroidism. They wrote back saying "there were only two times where your TSH did not look healthy. You booked an appointment with us to discuss ongoing symptoms and to request further bloods. You were 10 minutes late for the appointment and we do not test TPO antibodies unless there is a clinical suspicion of hypothyroidism."

greygoose profile image
greygoose in reply to Ellie290

Oh dear! And a TSH of 6.2 doesn't suggest hypothyroidism in their book? I think you need to change practices - if you can, of course - this lot know nothing!

SeasideSusie profile image
SeasideSusieRemembering

Ellie

The GP that said you were hypERthyroid needs retraining or, better still, find another job, he's of little use to patients.

In what way are they saying you are at fault?

What are the actual results for your low nutrient levels and what are you taking for them?

Follow SlowDragon's excellent advice, come back with your results and take the first steps towards improving your health.

Ellie290 profile image
Ellie290 in reply to SeasideSusie

I complained about them when my TSH was high and I was told I had hyperthyroidism. They wrote back saying "there were only two times where your TSH did not look healthy. You booked an appointment with us to discuss ongoing symptoms and to request further bloods. You were 10 minutes late for the appointment and we do not test TPO antibodies unless there is a clinical suspicion of hypothyroidism."

SeasideSusie profile image
SeasideSusieRemembering in reply to Ellie290

Well, being late for an appointment isn't going to help, whatever the circumstances they don't like it even if you can't help it. A courtesy phone call to say why you would be late would have given you at least one Brownie point!

So, what are your results?

Ellie290 profile image
Ellie290 in reply to SeasideSusie

I did call them and they said I didn't.

SeasideSusie profile image
SeasideSusieRemembering in reply to Ellie290

Well they were very unreasonable to put that in the letter then.

Matilda_1922 profile image
Matilda_1922

I have an underactive thyroid gland

I agree you need to follow up with tests etc. My levothyroxine has been reduced by quite a lot. Told to have bloods again in 3 months. If I don't ask for them then you would be missed.

I am getting signs like tiredness loss of appetite etc signs that tell me I'm not on enough levothyroxine. I was managed on 175mcg daily and was reduced to 125 might in August which I felt was a big drop.

I've now have a blood form for check now so let's see what it is now.

Ellie290 profile image
Ellie290 in reply to Matilda_1922

Thanks I have more current bloods now.

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