Thyroid/Graves’ disease? Not diagnosed - Thyroid UK

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Thyroid/Graves’ disease? Not diagnosed

Cloud6
Cloud6

Hello I am new to this site and I posted on the Graves community because I am at a complete loss. I have been getting symptoms which I’m a bit confused about and I suspect it is Graves because most of the symptoms are hyperthyroid ones?

Tremor in face and in small parts of my body

Uncontrollable sweats

Palpitations

Insomnia

Frequent bowel movements

Goitre

But also these ones?

Weight gain

Puffy eyes

Cold feet

Can anyone please help me to understand? There is a history of thyroid disease in the family so I am quite worried. Thank you.

22 Replies
oldestnewest

Hello Cloud

Well in the first instance I would suggest you talk with your doctor so the appropriate blood tests can be undertaken, and this should include, a TSH, T3 and T4 blood test plus the relevant antibodies.

For Graves Disease you need to test positive for the TSI / TRab antibodies but the goitre you mention may be responsible for some if not all of your current symptoms.

Either way, best to first get some blood tests actioned as these symptoms may not go away and the more you worry, the bigger the worry becomes, possibly compounding your existing health issues.

Keep us in the loop, and report back when you have some results, so people better able than me can talk you through any issues you may still have.

Cloud6
Cloud6
in reply to pennyannie

Hi thank you. Well my TSH was abnormal and it’s now back in range. I can post them now if it helps?

I just feel like a hypochondriac!

pennyannie
pennyannie
in reply to Cloud6

Hey there,

You are not a hypochondriac - just someone looking for answers who hasn't so far, had any suggestions as to what's going on :

Yes please post the results you have plus the ranges and let us see if we can help you :

Cloud6
Cloud6
in reply to pennyannie

December 2019

TSH 0.26 (0.2 - 4.2)

Free T4 25.8 (12 - 22)

Free T3 4.1 (3.1 - 6.8)

March 2020

TSH 3.88 (0.2 - 4.2)

Free T4 14.1 (12 - 22)

Free T3 3.5 (3.1 - 6.8)

pennyannie
pennyannie
in reply to Cloud6

Thank you - are you any medication ?

Cloud6
Cloud6
in reply to pennyannie

No nothing apart from supplements. I thought it was Graves because the symptoms and my physical appearance (red eyes that feel like they’re sticking out) seemed to fit.

pennyannie
pennyannie
in reply to Cloud6

What supplements please ?

I don't know enough but it looks as though your TSH and T4 are jumping around and showing signs of struggling and your T3 is very low in range which shows poor conversion :

T3 is what the body runs on and currently you appear ' challenged ' at this very low level and am not surprised you are experiencing many symptoms.

In Graves, T3 and T4 would be much higher and your TSH suppressed at around 0.01:

Have you ever had the thyroid antibodies tested for either Graves or Hashimoto's ?

How long have you had a goitre and what does your doctor advise ?

Cloud6
Cloud6
in reply to pennyannie

I’ve had a goitre for a few weeks. It’s been hurting my throat and neck. I haven’t spoken to my GP because I don’t want to feel like a nuisance.

Vitamin D 800iu and folic acid is all I take now.

Thank you for replying by the way.

pennyannie
pennyannie
in reply to Cloud6

Hey there again,

Well, I'm sorry your doctor makes you feel like a nuisance - sounds like one I used -

Anyway, you need to discuss this swelling with your doctor.

I understand some medics take a ' wait and see ' approach whilst others refer you for an ultra sound scan to find out what is going on, and possible because of the current situation a hospital visit may not be encouraged.

I also understand a goitre can be caused by the patient becoming either hyperactive or hypothyroid.

So, it's also essential to run a blood test to identify which antibodies are causing the issues, as the medication for Graves is different to the medication prescribed for Hashimoto's Disease.

These are both autoimmune diseases so there is probably some genetic predisposition as you mentioned earlier.

It does seem that those of us with thyroid AI conditions need to maintain our vitamins and minerals at optimal levels, and not just somewhere in a NHS range.

I find I need to maintain all 4 vitamins and minerals as previously detailed at good levels to assist my body's conversion of T4 into T3 and maintain my core strength strong and solid.

I hope this has helped in your understanding, and would suggest you consider following SD's detailed reply. I was in a similar place a few years ago, when I too was made to feel I was becoming a nuisance to my doctor.

It's thanks to the amazing people and help I found on this website that I'm now much better and have taken back control of my own health issues.

Cloud6
Cloud6
in reply to pennyannie

Antibodies no, never been checked for either Graves/Hashimoto’s.

pennyannie
pennyannie
in reply to Cloud6

Good morning -

Just a thought,

If your eyes also feel sore and dry you might find some relief from eye drops : there are many lotions and potions to choose from but just be sure whichever ones you use that they are ' preservative free ' :

Just speaking from experience, as this weather does seem to exacerbate eye issues.

Not Graves with those results. Underactive if anything. Probably hashimotos (aka autoimmune thyroid disease). If you have a goitre your doctor should be doing full testing.

Thank you I had bloods taken Monday and I had a call today to discuss the results urgently.

SlowDragon
SlowDragonAdministrator

These results strongly suggest Hashimoto’s also called autoimmune thyroid disease

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms, before becoming hypothyroid

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto’s 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 Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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, best not mentioned to GP or phlebotomist)

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 ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

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). Can be slightly raised with Graves’ disease too

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. 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...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Gluten intolerance or coeliac very common ...could cause gut issues

Get GP to do coeliac blood test too

Cloud6
Cloud6
in reply to SlowDragon

Thank you so much. Never been checked for antibodies despite family history of thyroid disease.

Folic acid and vitamin D is all I take. Iron and B12 not anymore.

SlowDragon
SlowDragonAdministrator
in reply to Cloud6

Obviously getting thyroid antibodies tested is essential

Thyroid ultrasound scan can be helpful if antibodies are negative

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Cloud6
Cloud6
in reply to SlowDragon

Vitamin D 47.3 (25 - 50 deficiency. Supplementation is indicated)

Folate 4 (2.5 -19.5)

Vitamin B12 1103 (190 - 900) I was taking B12 as a trial to see if it would help and it did make a small difference but not anymore

Ferritin 72 (15 - 150)

SlowDragon
SlowDragonAdministrator
in reply to Cloud6

So vitamin D and folate are too low

Vitamin D

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

Some areas will prescribe to bring levels to 75nmol

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...

NHS Guidelines on dose vitamin D required

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

But if you do have Hashimoto’s 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

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Government recommends everyone supplement October to April

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

Folate on the low side.

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Only add one supplement at a time and then wait for at least two weeks before starting another

Cloud6
Cloud6
in reply to SlowDragon

Was on the phone to doctor, the following has been requested

TSH

Free T4

Free T3

Thyroid antibodies

Blood test is for 8:30am Monday morning as urgent.

SlowDragon
SlowDragonAdministrator
in reply to Cloud6

Great come back with new post once you get results

I know if it's Hashis it can start with hyperthyroid results and symptoms, before becoming hypothyroid. Can the hypER phase last a year or so before swinging to hypO ?

Cloud6
Cloud6
in reply to TaraJR

Thank you my thyroid was checked Monday and I was told today on an urgent phone call that my results indicate hypothyroidism.

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