Advice please : Hi guys I’m new here. I’m... - Thyroid UK

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Advice please

LauraW_ profile image
9 Replies

Hi guys I’m new here.

I’m normally a healthy 27 year old woman with an active job.

For the last two weeks I’ve been feeling generally unwell. Started with muscle weakness and heart palpitations that ended with two trips to A & E with a resting HR of 130.

Since then generally got weaker. No sleep, fatigue, lost 7 pounds in the last 2 weeks. Irritability and anxiety. Also have constant tremors and palpitations. I’m absolutely knackered but feels like my body won’t relax. Feel better when I’m walking round but I’m still so tired. Have looked online and my symptoms do fit with a problem with the thyroid.

Only blood tests I had were a Week and a half ago. Everything was normal except Vit D which was 29 and given supplements to take for a month. Thyroid was tested but only the basic one and didn’t see the results.

Contacted the doctor on Friday who emailed me to say it was likely a viral infection and it would get better.

Just need some advice before going back to the GP as I don’t think I’m being taken serious.

Thanks 😢

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LauraW_
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9 Replies
meme profile image
meme

Ask for a full thyroid function test with antibodies for starters.

fuchsia-pink profile image
fuchsia-pink

Vitamin D is dire. Just taking a supplement for a month won't do enough to give a long-term benefit - especially now it's winter. You will need to continue to take supplements even after the NHS stops prescribing.Basic thyroid testing would be TSH, free T4 and free T3. If you are hyper (over-active thyroid) you would expect to see low TSH and very high free T4 and free T3. More thorough testing would include all thyroid antibodies, ferritin, folate and B12.

SeasideSusie will hopefully pop up in a bit to add more info on vit D and nutrients; and SlowDragon gives great advice on the best private blood tests and discounts available via Thyroid UK.

In the meantime, you are legally entitled to your blood results, so I suggest you get hold of them, so you can see what has been tested and the actual results. Good luck x

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

“Thyroid was tested but only the basic one and didn’t see the results.”

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised TPO or TG Thyroid antibodies

Hyperthyroid- Graves’ disease - important to test TSI or Trab antibodies

Ask GP to test other vitamin levels and thyroid antibodies if not been tested yet

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Graves Disease antibodies test

medichecks.com/products/tsh...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Hashimoto’s frequently starts with transient hyperthyroid results and symptoms

Low vitamin levels are particularly common with Hashimoto’s and Graves’ disease

Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

SlowDragon profile image
SlowDragonAdministrator

Vitamin D result was presumably 29nmol (assuming you are in the U.K.)

GP should prescribe 1600iu everyday for 6 months

What dose has been prescribed

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need,

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Retest vitamin D in 2-3 months

ling profile image
ling

Your description of your symptoms scream "hyperthyroid". If u could get those basic thyroid test results, it might shed some light on what's going on, and any more testing that needs to be done.

Somehow, your symptoms don't sound like just a viral infection.

I hop u can share your thyroid results with us when u have them.

All the best.

LauraW_ profile image
LauraW_

Sorry guys haven’t been able to get back on to reply to this thread. But basically went to work on Monday after another night of not sleeping and ended up in A & E again with a HR of 152.

Again they did bloods, ECG and everything was normal, including thyroid. Didn’t tell me the exact value of TSH but it was neither low or high. Monday evening attended my GP and told her about the twitching and Tremours who put it down to surprise surprise anxiety.

Honestly don’t know what to do. I’m still not sleeping, I’m not getting aches and pains in my joints and my back and continuing to twitch and feel like my heart is racing.

I’ve ordered a full thyroid test from

Medicare which should arrive in the next few days. Any advice would be greatly appreciated as I’m feeling overwhelmed right now.

ling profile image
ling in reply to LauraW_

Hi Laura, how are u doing?Do u have your blood test results to share?

Best wishes.

Bearo profile image
Bearo

Sorry you’re feeling so unwell. When your test kit arrives have a look on here for advice about how and when to do the test. Post your results when you get them and knowledgeable people on here will get back to you.

humanbean profile image
humanbean

Your symptoms sound to me rather like those of people with "Long Covid".

Covid-19 doesn't make everyone deathly ill - there are cases of people having almost no symptoms but developing Long Covid out of the blue.

People with low vitamin D are more at risk of catching Covid-19, and yours is definitely very low.

I'm curious what dose of vitamin D you were prescribed by your doctor.

You can calculate the dosage of vitamin D you need to increase your level to optimal using this link :

grassrootshealth.net/projec...

If I assume you weigh 140 lbs (10 stone) and that the units of measurement of your vitamin D result are nmol/L, then with your level of 29 nmol/L the calculator returns the following :

All suggested intake amounts are based on a weight of 140 lbs

Maintenance Dose

To achieve the desired serum level within approximately 3 months, a supplementation amount of

4,000 IU* (100 mcg) per day (this includes your current intake amount)

will be sufficient for 50% of people to achieve the desired serum level of 100 nmol/L

or

6,000 IU* (150 mcg) per day (this includes your current intake amount)

will be sufficient for 90% of people to achieve the desired serum level of 100 nmol/L.

Loading Dose

To quickly achieve the desired serum level within days†, a dose of

25,000 IU (625 mcg) per day can be taken for 7 days, followed by the above maintenance dose.

*Values rounded to the nearest 1,000 IU and are capped at a maximum of 10,000 IU/day.

†This calculation is based on published data by van Groningen et al., Eur J Endocrinol., 2010

Hundreds of peer-reviewed scientific studies have documented the well-established safety of single 'loading' doses of vitamin D to get levels up quickly (1-26). Loading doses ranging from 100,000 IU to 600,000 IU have been shown to rapidly increase vitamin D levels, but fail to sustain levels longer than 2-3 months. Larger doses induce more rapid breakdown of vitamin D (1-2). Therefore, the customized loading dose has been divided into doses of 25,000 IU over a number of days to achieve the initial increase in vitamin D levels. The maintenance dose is your custom daily dose recommended to achieve and sustain the desired levels of vitamin D.

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