Query over previous results? : So before I meet... - Thyroid UK

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Query over previous results?

66olives profile image
19 Replies

So before I meet my new GP I have been looking back at previous results. To my untrained eye, my results in in 2015 and 2016 show that my thyroid was already failing.

Am I correct that T4 being bottom of the range and TSH top would be why I have been exhausted for years? Here are tow previous results from 5&6 yrs ago. I gave up hope of help from the GP at this point.

T4 - 8.37 range 7.5-21.1pmol/L

TSH - 5.37 range 0.34-5.6 mu/L

T4 - 8.4 range 7.5-21.1pmol/L

TSH - 5.6 range 0.34-5.6 mu/L

Also in 25 yrs the highest my Vit B 12 got was 245ng/L last test was 212ng/L (May 21) range not given before latest result, also contrinbuting to me feeling constantly under par. I want/intend to resume taking the B vits I was told was a waste of my money. I have found some liquid spray in cheek that looks like it will be more effective than tablets.

The heel pain that led me to force GP 's hand and test me for diabetes (and hypothyroidism) this year has regressed since the drop in levothyroxine from 75 to 50. I am now in constant pain again. I don't think I can wait the 6 weeks to get a proper fully thyroid test done. It is interfering with my job. I actually feel worse than ever. (Test will be the myhealth full thyroid check)

Any advice welcome.

Thanks

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66olives
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19 Replies
SeasideSusie profile image
SeasideSusieRemembering

66olives

Am I correct that T4 being bottom of the range and TSH top would be why I have been exhausted for years?

Yes. However, those results wouldn't have got you a diagnoses because even though your TSH was at the very top of the range it has to reach 10 here in the UK before a diagnosis of hypothyroidism is made, unless FT4 is below range.

I don't think I can wait the 6 weeks to get a proper fully thyroid test done.

Unfortunately you need to. After starting Levo, or any dose change, retesting is not done until 6-8 weeks later because it takes that long for levels to stabilise.

Test will be the myhealth full thyroid check

Do you mean Monitor My Health? They test TSH, FT4 and FT3, they don't include thyroid antibodies.

Also in 25 yrs the highest my Vit B 12 got was 245ng/L last test was 212ng/L (May 21) range not given before latest result,

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml or ng/L because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml or ng/L."

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

PurpleNails profile image
PurpleNailsAdministrator

Yes the TSH (thyroid stimulating hormone) is the pituitary hormone which signals the thyroid to make more hormone. Its responding to the low FT4 (& FT3) which are low so rises in an attempt to increase levels. The reverse happens with high hormones the TSH lowers.

As those levels are just within range the GP has considered case close. You really should have had TPO & TG antibodies which if high might have allowed levo, or at least sooner repeat testing. If you’d had known you might have arrange follow up test yourself but they often don’t advise.

This happens all the time. Even with results just out of range…oh they’re fine. Be reassured.

I had climbing hyper levels for over 4 years and the TSH was undetectable. I wasn’t even advised.

SlowDragon profile image
SlowDragonAdministrator

With TSH over 5 and symptoms you should have been started on levothyroxine

See flow charts on here

gp-update.co.uk/Latest-Upda...

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test to get highest TSH and lowest Ft4

Essential to test both TPO and TG thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Have you had thyroid antibodies tested yet?

Low vitamin levels tend to lower TSH

So it’s absolutely Essential to regularly retest vitamin D, folate, ferritin and B12

and then supplement to maintain OPTIMAL vitamin levels

Vitamin D at least around 80nmol and around 100nmol maybe better

B12 at least over 500

Folate and ferritin at least half way through range

Heel pain is plantar fasciitis, due usually to low vitamin D and low thyroid levels

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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

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/if-you-are-un...

66olives profile image
66olives in reply toSlowDragon

The thyroid check bought is "medicheck" one, sorry.

SlowDragon profile image
SlowDragonAdministrator in reply to66olives

Hopefully you bought the one that includes vitamin testing and thyroid antibodies

Gingernut44 profile image
Gingernut44 in reply toSlowDragon

OP is already on Levo, dropped from 75mcg to 50mcg according to her original post (right at the bottom) SeasideSusie PurpleNails

SeasideSusie profile image
SeasideSusieRemembering in reply toGingernut44

Yes I know, I checked her profile, hence my response to her comment of

I don't think I can wait the 6 weeks to get a proper fully thyroid test done.

Unfortunately you need to. After starting Levo, or any dose change, retesting is not done until 6-8 weeks later because it takes that long for levels to stabilise.

66olives profile image
66olives

Heel pain is NOT plantar fasciitis. I have had that before and still do the physio exercises. This is different. Even my physio agrees it is a nerve pain. It was my absolute refusal just be refered to NHS physio that resulted in my hypothyroid diagnosis.

SlowDragon profile image
SlowDragonAdministrator in reply to66olives

Agreed it’s due to low thyroid levels…but also often low vitamin D

Suggest you test vitamin D now if not been tested

Are you currently taking any vitamin D?

When were vitamin D, folate, ferritin and B12 last tested?

66olives profile image
66olives in reply toSlowDragon

Vit D has never been tested. But I have taken D3 supplements over winter for years because winter always left me low.

SlowDragon profile image
SlowDragonAdministrator in reply to66olives

How much vitamin D are you currently taking

Important to regularly retest vitamin D twice year when supplementing

Heel pain is common hypothyroid symptom, likely due Dose levothyroxine being inappropriately reduced

66olives profile image
66olives in reply toSlowDragon

At present nothing. Generally take October to March. I take a 50ug(2000iu) capsules. Experience tells me that I generally don't need it in summer. I normally spend hours outside.

SlowDragon profile image
SlowDragonAdministrator in reply to66olives

But with thyroid disease we frequently need much higher dose vitamin D than average population

Suggest you get vitamin D tested ….you might be astonished

I spend masses of time outside and always have excellent tan….but still need 4000iu vitamin D daily in summer and a bit higher in winter.

You’re aiming for vitamin D at least around 80nmol and around 100nmol or higher may be better

Test twice yearly via NHS private testing service when supplementing

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, with hashimoto’s we frequently need higher dose than average

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

grassrootshealth.net/projec...

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

66olives profile image
66olives

No antibody tests. I was diagnosed because of high TSH. No info re hypothyroidism given. 2nd test 8 weeks later was unfortunately 2pm and TSH only. GP didn't speak to me, merely sent text stating dose too high and will result in health issues if continued that high. Rang surgery to be told GP didn't need to talk to me as advice was already issued via text message.

SlowDragon profile image
SlowDragonAdministrator in reply to66olives

TSH lowest at 2pm

ALWAYS get all thyroid tests done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Essential to test thyroid antibodies, folate, vitamin d, ferritin and B12

Folate, ferritin and B12 should be retested annually

Are you currently taking any other vitamin supplements apart from vitamin D

McPammy profile image
McPammy

My first signs of abnormal thyroid tests was in 2003. They didn’t tell me back then. By 2008 I was in a state. Eventually they tested my thyroid levels after years of being told I had depression. My TSH was 36. My joints were very painful not a symptom of depression! I never did well on Levothyroxine for over another decade. I’m now on combination of Levothyroxine and T3 medications doing brilliantly. This was only possible by going private. The NHS sets their ranges too wide snd patients just keep on suffering. My private only Endocrinologist explained this to me. A TSH above 2.5 is hypothyroidism and you’ll experience symptoms galore. If you can go private you could get things resolved much quicker indeed. The NHS won’t treat you until your TSH is over 10 by which time you could be feeling much worse.

66olives profile image
66olives in reply toMcPammy

Thanks. I want to give new GP a try before jumping ship. However, the surgery has a phone consultation only policy. Then face to face if absolutely necessary. So everything is phone or text. I won't meet new GP anytime soon. And I feel like s**t so I guess private it will have to be.

SlowDragon profile image
SlowDragonAdministrator

Looking at your first post

The original test at diagnosis

TSH level 19.40mu/L (normal range 0.34 - 5.6)

T4 level 6.5pmol/L (normal range 7.7 - 15.1)

So you were diagnosed hypothyroid because your TSH was way over range. Primary hypothyroidism is diagnosed when TSH goes over 10 and FT4 level was below range.

You were Started on 75mcg levothyroxine

Most recent test results:

Plasma TSH level:0.08mu/L.

Just testing TSH is completely inadequate

Likely you have autoimmune thyroid disease also called Hashimoto’s

Early stage Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Absolutely essential to test TPO and TG thyroid antibodies

Plus vitamin D, folate, ferritin and B12

66olives profile image
66olives

I have the Medicheck 'advanced thyroid function test' ready and waiting. I know have read and noted all recommendations. I will wait full 6 weeks. I will do test on Monday am so I get best possible service. I am most concerned about my Vit B12 levels. After online research I realised GP probably misinterpreted symptoms. I changed from a multi B tablet to the spray B12 1200ug methylcobalamin. I will resume this immediately after the test. After yrs I am determined to get well. I admit I'm not good at complaining, but for 25yrs I went to the GP with the same two issues regularly.

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