dr refusing to do full blood work . Only Tsh . - Thyroid UK

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dr refusing to do full blood work . Only Tsh .

Nadinececily profile image
10 Replies

I ve asked today to have a full thyroid blood test done . My TSH was initially 99.9

It’s right down now . Not quite there so I’m now onn125g Levo’ .

she said it’s probably an autoimmune illness but no point testing any thing else as medication would just be the same .

surely that’s not right ?

No T3 or antibody tests?

let me find out if I have hasimotos ?

I’ve never been so tired . Surley I’m entitled to know whether i definitely have an illness like Hasimotos.

I’m lost now .

should I go private tests ? Who would look at them ? Thank you .

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Nadinececily profile image
Nadinececily
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10 Replies
greygoose profile image
greygoose

She's thinking about it from her point of view, not yours. Even if she tested antibodies and FT3 she wouldn't understand the results. As a general rule, doctors don't know what T3 is, nor Hashi's, nor how to interpret blood test results.

On the other hand, even if you have Hashi's, the only thing you can do is replace the missing hormone, just as you would for hypo by any other cause. There is no treatment for the Hashi's itself.

The reason you need to know if you have Hashi's is because your levels are going to jump about, and doctors tend to blame the patient for not taking their thyroid hormone replacement correctly. So, at least one of you should know what's really going on. And it will probably end up being you. So, if I were you, I'd get full thyroid testing privately, and learn as much as you can about your disease. :)

Nadinececily profile image
Nadinececily in reply to greygoose

thank you . Looks like I will have to go private for the tests .

I read so much . so found it odd when I was nt allowed the full tests .

How are you meant to use nutrition to help your illness if they won’t test you properly?

Thank you for your reply .

greygoose profile image
greygoose in reply to Nadinececily

Oh they know nothing whatsoever about nutrition. And even if they tested your nutrients they wouldn't understand the results. And if you were found to be deficient they wouldn't know how to treat it. It really is all down to us with this disease.

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Thousands of members here are forced to buy private blood tests to see the results they need to feel well. Often its not the GP refusing totest anything other than TSH but the lab.

Once you have private blood results then you can post results here in a new post and members can make suggestions. You will be able to see how far through the range your FT4 is, if theres room for a Levo dose increase and if you are converting Levo to T3.

Its essential to also test key vitamins ferritin, folate, B12 & D3.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Cheapest private test would be through Randox and would also test both types of antibody - TPO & Tg.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Nadinececily profile image
Nadinececily in reply to Jaydee1507

thank you . I’ll look into it all . I fill in my results

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Do you always get same brand levothyroxine at each prescription

When were vitamin levels last tested

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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 all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Come back with new post once you get results

Nadinececily profile image
Nadinececily in reply to SlowDragon

Thank you . I’ve sent of for a prick test .

Lulu2607 profile image
Lulu2607

Hi Nadinececily I'm afraid your GP is wrong in saying there's no point in knowing the reason for your hypothyroidism. The cause is very important in order to inform the way forward, and it's not just about the thyroxine dose. I have been asked by hospital specialists when being treated for other conditions what the cause of my (extreme) hypothyroidism was/is, as it helps inform the discussions. If you are autoimmune (as I am) it's important you know this as that is a condition you need to be aware of. It can have an impact on your diet and lifestyle amongst other things and puts you at higher risk of other autoimmune illnesses. With a TSH of 99 as you had, and I assume symptoms also, they really should have investigated more than just a TSH. Like a lot of Drs unfortunately they think treating thyroid is just a simple numbers game which is the problem you see a lot on this forum. Maybe speak to another GP at your surgery if possible?

Capan24 profile image
Capan24

I don't think it's unreasonable for you to ask to be tested for TPO antibodies to see if you have Hashimoto's. I would talk to your doctor again about further testing. After all, you're the one paying for the test. Maybe if she knows how important it is to you, she will order the test. Or maybe it's time to find another doctor. I really like the doctor that I see. She takes the time and listens to me and if I ask her to order something she usually does. Also I think it's important when you have Hashimoto's that you take the same medicine month to month. I know with generics, often pharmacist fill it with a different medication. My insurance did not cover the name brand, Synthroid. My doctor submitted paperwork to my insurance to get approval for Synthroid, dispense as written. I don't know what type of paperwork she had to fill out, but it went through and now I can have it synthroid for life through my insurance. I am grateful that my doctor did this for me. Hope you feel better soon.

HilaryWB profile image
HilaryWB

Sadly you are not alone,that is the usual position. Even my enlightened GP who requested a full Thyroid screen was refused by the labs as they were "unnecessary "tests.

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