How do I get diagnosed with hypothyroidism? - Thyroid UK

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How do I get diagnosed with hypothyroidism?

Dook profile image
Dook
19 Replies

Hello! I am new to the forum. I am 68 years old and convinced that I have the under active thyroid which runs in the family...everyone on mum's side were (eventually) diagnosed, but not before feeling unwell for many years. My uncle almost died from a lack of being diagnosed. Why is it so difficult to get a diagnosis?

My sister and I have so many symptoms, including a slow pulse rate (down to 54 bpm sometimes). We have both put on a lot of weight and can't shift it despite not eating very much. I have awful bowel problems, bloating, food intolerances, etc., for many years, and was also on PPI for gastric reflux, which I've weaned myself off.

I now have high blood pressure, which I'm sure is related, but the meds for this have caused my gastric reflux to return with a vengeance... I just don't know what to do as blood tests always come back 'normal'.

Are there any foods I can eat to speed up my metabolism, or natural meds? I have a very low income so can't afford to see anyone privately.

Thank you for reading... I look forward to hearing from you.

Regards, Dookie

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Dook
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

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 Thyroid antibodies

Hashimoto’s is extremely genetic and frequently runs in families

Ask GP to test vitamin levels and thyroid antibodies as you have close family who have autoimmune thyroid disease

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

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. 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...

Please add any recent test results and ranges

Or come back with new post once you get results

Dook profile image
Dook in reply toSlowDragon

Many thanks for the quick reply... maybe you should be called FastDragon!

I appreciate the advice & will look into the online GP services. I find GPs are not always willing to discuss blood test results, either, as they can be complicated to decipher.

Dookie

SlowDragon profile image
SlowDragonAdministrator in reply toDook

Don’t ask GP for test results

Either register for online access or just ask receptionist for printed copies of blood test results, “for your own records”:

Dook profile image
Dook in reply toSlowDragon

Hello again!

I have now received the results of the T3 T4 tests I had done... It would appear that I am withn the normal range for these... (apologies for the format- I'm not sure how to attach things)...

TSH

27 Nov 2020

1.64

mIU/L

0.27 - 4.2 R

0.27

4.2

Free T3

27 Nov 2020

5.04

pmol/L

3.1 - 6.8 R

3.1

6.8

Free Thyroxine

27 Nov 2020

14.4

pmol/L

12 - 22 R

12

22

Whilst this is good news, it still doesn't explain all the symptoms I'm having.... I'm wondering what is the next step...if anything?

I suppose I need to arranged a full blood count, but my GP has told me they will only be doing emergency blood tests and that I won't be able to get one until the new year....

Kind regards, Dx

SlowDragon profile image
SlowDragonAdministrator in reply toDook

So thyroid levels look pretty good

TSH about average

Ft3 very good

Ft4 slightly low

However you really need TPO and TG thyroid antibodies tested

Also ESSENTIAL to test vitamin D, folate, ferritin and B12

Low vitamin levels can cause symptoms in their own right

Low Vitamin D is widespread in U.K.

Do you supplement vitamin D

How often do you get B12 injections

Do you also supplement a good quality daily vitamin B complex - helps maintain B12 between injections and keeps all B vitamins in balance

Do you take any other vitamin supplements?

When were iron and ferritin last tested

Medichecks do iron panel test

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...

Monitor my health also test vitamin D - £29

Or

Vitamin D testing via nhs postal kit here too

vitamindtest.org.uk

(Currently rather slow as inundated with people testing because of low vitamin D link to Covid )

SlowDragon profile image
SlowDragonAdministrator in reply toDook

Suggest you get vitamin D tested

Start supplementing vitamin B complex, if not doing so already

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

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

Consider getting iron panel test

What’s your diet like

Are you vegetarian or vegan?

fuchsia-pink profile image
fuchsia-pink

SlowDragon is right - you really need to get your historic blood tests as a first step (a) because that will show exactly what has been tested (probably only TSH, which as she says, isn't anything like enough) and (b) because that will show where "in range" you are ...

I have had some success getting full testing from the GP by saying that these are tests recommended by Thyroid UK - but it is likely that, if you aren't currently on thyroid meds, the GP (or lab) will refuse to test free T3 (arguably the most important result, as this shows how much active thyroid hormone you are producing) and vit D is also quite tricky to get too.

Where you are in range is also really important. The lab ranges vary from lab to lab, but a TSH of more than 3 is always bad news - and would result in you getting thyroid treatment in many countries, but not the UK where they want you to be really ill first and often make you wait until it's waaaay out of range, sometimes as high as 10.

But if the lab range for free T4 is say 12 - 22 and your result is 12.5, you would be "in range" but only just and feeling dreadful. whereas if it's nice and high, say 19.5, you would feel much better. But both results would be "normal" and "in range".

If all the jargon is confusing, may I also suggest you look at helvella 's excellent glossary - look under "pinned posts".

Good luck x

Dook profile image
Dook in reply tofuchsia-pink

Many thanks for this...

Incredible that you have to be really ill before they will treat you, but I know this is true as my uncle was practically dead by the time he got help... he had to scream at the GP to find out what was wrong with him...

But why?! What is the purpose of letting people suffer... are the meds expensive?

I really had to press for B12 shots some years ago when I was on meds for gastric reflux... they would only give me one shot every 3 months so it didn't really help... and I know B12 is cheap, so it really doesn't make any sense at all.

Dx

SlowDragon profile image
SlowDragonAdministrator in reply toDook

Having low B12 is an extremely common hypothyroid symptom

Gastric reflux is also extremely common hypothyroid symptom due to LOW stomach acid as result of being hypothyroid

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi like omeprazole tend to lower B12 and magnesium even more

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Dook profile image
Dook in reply toSlowDragon

Yes, I knew that PPI does that... I was on them for ages... I've had cameras up and cameras down & no explanation for my long term gastric problems... they say could be adhesions, or IBS... I've also looked up Bile Acid Malabsorption as the stuff that comes out is pure bile... bright orange and burns so much! Possibly linked to removal of gall bladder in 1992... that's when I started to get problems.... But the weight gain over the past year is horrible (I've always weighed 7 stone), and now the high blood pressure, high cholesterol, dry, flaky skin, brittle nails, thinning hair (no body hair), insomnia & extreme tiredness...etc., etc...

SlowDragon profile image
SlowDragonAdministrator in reply toDook

High cholesterol is linked to being hypothyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Insomnia, often low Ft3 and/low vitamin D

Brittle nails low B vitamins

Hairloss low ferritin

All common hypothyroid symptoms

Dook profile image
Dook in reply toSlowDragon

Yes... all of these symptoms and many more! Yet despite family history I and my sister can't get a diagnosis... what on Earth do we need to do?!

SlowDragon profile image
SlowDragonAdministrator in reply toDook

Get FULL thyroid and vitamin testing

See list of private testing options in my first reply

Always do test as early as possible in morning before eating or drinking anything other than water

Come back with new post once you get results

fuchsia-pink profile image
fuchsia-pink in reply toDook

But why?! What is the purpose of letting people suffer... are the meds expensive?

Why? No idea. They will say they are following the guidelines, but this doesn't explain why the guidelines require TSH to be sometimes more than double the upper lab range before they will do anything. Rather makes a mockery both of even having an upper lab range and "do no harm".

Under-active thyroids are very common (levo is the third most-prescribed medication in the UK - and no 1 in the US) and yet thyroid care is almost ignored in GP training. I'm guessing that when a GP or family member is ill they don't wait until TSH gets to 10 ... [natural cynic]

Are the meds expensive? No; levo costs a few pence per tablet. Lio (or T3 meds, which benefits people like me who are "poor converters" of free T4 to free T3) is wickedly expensive in the UK - but this is down to utter NHS buying incompetence - it's much, much cheaper in many other countries ...

Bottom line though is that it's forums like this which help many people poorly-treated by the NHS. We have to educate ourselves and fight our own battles x

Dook profile image
Dook in reply tofuchsia-pink

Thanks for the replies... I'm so glad I found this place... I KNOW I have this disorder, so many symptoms and the family history, too... and my sister is the same.... we are both so desperate to find help.

Lora7again profile image
Lora7again in reply tofuchsia-pink

My GP told me he would be struck off if he gave me Levothyroxine because my TSH was in range. My T4 and T3 were very low in the range but he wasn't interested in that. My head was balding and my nails were lifting off their beds and he just wasn't interested. I had taken Levothyroxine in the past and was also was given an exemption card but he just would not help. At least I know what to do if it happens again and certainly won't be going to see him about it. I will do my own blood tests and self-medicate again if I have to.

Dook profile image
Dook in reply toLora7again

Wow... that's awful... but I know it is like banging your head against a brick wall... but how do you get the meds with no prescription...?

silverfox7 profile image
silverfox7 in reply toDook

Yes it’s sad some have to fight to get diagnosed. May be for some doctors they feel out of their depth so shy away from it! I have no proof of that but the thought has often been there!

Dook profile image
Dook in reply tosilverfox7

I think it's very true that GPs will only treat the symptoms and not the cause. Take my gastric reflux for instance... very keen to prescribe horrible meds for the reflux, not interested that it might be a problem with my thyroid... ditto high blood pressure... it goes on and on... they won't look at the elephant in the room... just bizarre!

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