would someone mind giving me some info on my re... - Thyroid UK

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would someone mind giving me some info on my results please, I’ve been told that my thyroid is fine but I’m sure this suggests otherwise x

2479razooks profile image
46 Replies

never posted before so I may have done it wrong 🙈

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2479razooks
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46 Replies
jimh111 profile image
jimh111

You've done fine. They tend to only diagnose if TSH is over 10 or fT4 low. I think this silly because in your case your fT3 is low normal also. The combined effects of low normal fT3 and fT4 are enough to may you somewhat hypo I think.More information on your symptoms and how long you have been like this would be helpful.

2479razooks profile image
2479razooks in reply tojimh111

I’ve been feeling different for about a year, weight gain I can’t lose, tired, just not myself, I just keep getting told it’s my age! Someone recommended a private test, which I’ve done but my doctors won’t except it and say I’m falling into the normal levels, I just don’t really understand any of it x

jimh111 profile image
jimh111 in reply to2479razooks

Well you've aged a lot over the past year, a whole 365 days. Blaming it on age is nonsense, your GP has aged exactly the same amount as you (although special relativity tells us that time slows in dense objects).

Your private test is done by an NHS laboratory, your TSH is not normal. Is there another doctor at the surgery you can go to? If you get another appointment take someone with you for support if you can, it makes a difference.

J972 profile image
J972 in reply tojimh111

(although special relativity tells us that time slows in dense objects).

🤣🤣🤣🤣🤣 very good!

JMK3 profile image
JMK3 in reply tojimh111

Have you had your Pituitary gland scanned as well? They are so closely connected.

jimh111 profile image
jimh111 in reply toJMK3

I was supposed to have my pituitary checked but the endocrinologist lied about doing it, he just wanted to stop my liothyronine. I've submitted a complaint to the GMC, they rejected it with dishonest replies so I've submitted an appeal.

JMK3 profile image
JMK3 in reply tojimh111

Am shocked. Good for you sorting it , hopefully x

1tuppence profile image
1tuppence

You have my empathy. It took 4 years of feeling increasingly unwell with many thyroid symptoms, "normal" blood test results, two NHS endocrinologists ( one a professor), both diabetes specialists and not thyroid specialists, who dismissed those same symptoms, before I finally asked my GP if it wasn't my thyroid, what then did he think was the matter with me. His answer was that they were convinced I was hypothyroid, and he offered me a trial of levothyroxine.

Have you checked the Thyroid Uk website where there is a list of the symptoms?

I can only suggest you know how you feel, you know which symptoms you have, and you are living in your body. Your "normal" blood results may be similar to mine..... and they may not be adequate for you to feel well.

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.

Have you had tests on the NHS? This one you just had done should count as NHS as MMH is an NHS lab.

You need a TSH of over 10 or 2 TSH results over range 3 months apart on the NHS to get a diagnosis and begin treatment.

nice.org.uk/guidance/ng145

Can you tell us a little of your hstory and why you took this test? Presumably you haven't been feeling well.

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.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

JMK3 profile image
JMK3 in reply toJaydee1507

Thank you for welcoming me. I have been on Thyroxine for at least 15 years.

My story is that about ten years ago I went to my doctor because I was sleeping most of the day as well as the night and was tired all the time. She said to me "You are over 70 now, you must slow down" and that was it. I told her three times something was wrong, on the final visit I said "I can't read now" so she sent me to specsavers. It was Specsavers that sent me to the hospital on fast track for a head scan. The scan showed a pituitary tumour the size of a walnut pressing on my optic nerve! My doctor rang me the next morning saying "We have discovered what is wrong with you". WE! she had done nothing useful. Then she recommended a pill to shrink the tumour which was useful, so I can read again but am still much too tired most days of the week. Surprisingly and mysteriously I have two brilliant days a week when I hardly want to sleep and I get lots done. I wake up and immediately want to get up and I feel good as I walk to the kitchen to get breakfast. These two days are like my old life back. NOTE. I was put on Thyroxine a few years before the tumour was discovered. Also an iridologist said she didn't think I had thyroid problems - interestingly. I now know the two glands are very closely linked. I have had tests for PROLACTIN , TSH and T4 since the tumour was discovered. I also am always a bit anaemic and am on iron pills at the moment along with various vitamins, supplements, and painkillers daily for severe osteoarthritis.

Hope that is interesting and useful in some way??

JMK3 profile image
JMK3 in reply toJMK3

NB.

All on the NHS so far.

I am already on acid reducing meds as I have a hernia. Lansoprazole.

I eat a salad of raw veg every day with at least 8 varieties in it but it is the raw cabbage that I am addicted to through the winter months particularly. I include pickled beetroot and Kefir too. I eat meat 3 times a week. I have been told I don't eat enough protein and have bought hemp powder to add to dishes.

daily vitamins. B complex, vit D3 and vit C. Also glucosamine. 4 to 6 paracetamol a day for painful arthritis, 2 codeine on days out, pregabalin for nerve pain in my toes, the doctor said it didn't need a steroid injection [I had one another time which was wonderful relief]. I take any pills my doctors give me to make each day bearable, but the vitamins are my choice.

Jaydee1507 profile image
Jaydee1507Administrator in reply toJMK3

JMK3 perhaps you aren't aware that there is some confusion going on here as you are replying as if this were your post.

Do start your own post if you would like some personalised recommendations. Go to the main page and top right you will see a button that says 'Write'. pressing this you can begin to rite your situation, latest results etc

Jaydee1507 profile image
Jaydee1507Administrator in reply toJMK3

I can only assume you're on a small amount of Levo as your results suggest you are still hypothyroid.

Some doctors can be very conservative with treatment but thats not a reason to keep you hypothyroid whilst on Levo!

There is a formula to work out a very approximate final dose that you will require.

weight in kilos x 1.6 = approx final dose

As thyroid patients we need to become our own health advocates to be able to feel well. Have a read around this group to learn a little and see that others are in a similar situation. This might give you the confidence to challenge your GP and be able to push for a dose increase. Likely you will need several dose increases.

Sometimes asking for a trial increase can work better. Try different GPs at the same practice. Your TSH is over the top of the range so you need quite a bit more Levo but in stages.

Get a dose increase, retest in 6-8 weeks, assess results, increase, rinse and repeat.

Raising vitamin levels to OPTIMAL is also essential. Ask GP to test your levels which will almost certainly be very low if not deficient from being so hypo for so long.

tattybogle profile image
tattybogle in reply toJaydee1507

note jaydee ... think there is some confusion / piggy-back posting

JMK3 is not the Original Poster ,

blood results showing high TSH are from O.P. 2479razooks

Kowbie profile image
Kowbie in reply toJMK3

Sorry to hear all that , the more I read about drs and how they treat patients makes my blood boil I think I actually hate them ,I also think most of them shouldn’t even be drs , sorry for the rant

klr31 profile image
klr31

Your TSH result does definitely suggest otherwise.

Karen

SlowDragon profile image
SlowDragonAdministrator

was this test done early morning

This gives highest TSH (all most medics look at )

TSH over 5 and symptoms is abnormal

Politely insist on another test in 6-8 weeks time including thyroid antibodies and vitamin levels

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

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

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Sleepman profile image
Sleepman

If you have symptoms, I think you can ask for a trial with these results.Ask if the doctor will check for thyroid antibodies

Sydneygirl37 profile image
Sydneygirl37

a healthy TSH is between 1-2. Yours is way too high and your T3 is too low. It should be between 6-7. Get your TPO antibodies checked and stop eating gluten and diary.

Zephyrbear profile image
Zephyrbear in reply toSydneygirl37

“…stop eating gluten and dairy”

That’s likely to do more harm than good… you can’t just cut stuff like that from your diet unless there is a need for it. The effects (certainly on me) of such a drastic change in diet would leave me utterly bereft! Cutting these things out has to be done properly and in a controlled manner to establish which, if any, are going to be of benefit to you.

I did trial both of these options (one at a time) and never derived any benefits from them and so can, quite happily continue to indulge in both!

Sydneygirl37 profile image
Sydneygirl37 in reply toZephyrbear

The protein in gluten is very similar to the protein in the thyroid gland. With a TSH as high as 6, it’s an indicator of autoimmune acquired Hashimotos (TPO blood test can confirm that). Everyone with autoimmune, including Hashimotos has leaky gut. Leaky gut means gluten and diary proteins with its small protein penetrates the lining of the gut wall and enters the blood stream and the body tries to attack it and the thyroid . For most people with Hashimotos going gluten and diary free reduces antibodies and the inflammation and fatigue.

Zephyrbear profile image
Zephyrbear in reply toSydneygirl37

Did neither for me!

RedApple profile image
RedAppleAdministrator in reply toSydneygirl37

Sydneygirl37, 'Everyone with autoimmune, including Hashimotos has leaky gut.'

You are doing exactly what our doctors do, which is to lump everyone into the same category and treat all exactly the same. You do not even know for sure that the OP has autoimmune thyroid disease, as there are no antibody results posted. So insisting that a gluten and dairy free diet must be started immediately is absolutely out of order.

Sydneygirl37 profile image
Sydneygirl37 in reply toRedApple

Omg, overreact why don’t you. I said get your TPO antibodies tested to confirm it is Hashimotos then avoid gluten and diary and see if it helps with fatigue.

RedApple profile image
RedAppleAdministrator in reply toSydneygirl37

This is a new member who hasn't even been diagnosed yet, and knows little about thyroid issues. Your reply comes across as somewhat scary, and is not supportive.

RedApple profile image
RedAppleAdministrator in reply toSydneygirl37

Sydneygirl37 'With a TSH as high as 6, it’s an indicator of autoimmune acquired Hashimotos (TPO blood test can confirm that). '

This is incorrect. A high TSH is, potentially, and indicator of inability of the thyroid gland to produce sufficient thyroid hormone. Autoimmune/Hashimotos is not the sole cause for a poorly functioning thyroid gland.

Sydneygirl37 profile image
Sydneygirl37 in reply toRedApple

Fair enough. But the next steps a GP would take would be a full thyroid panel based on those results which include TPO and TGAB, and thyroid scan. And if nothing comes up, then it’s a continuation of the investigation looking at other blood tests.

RedApple profile image
RedAppleAdministrator in reply toSydneygirl37

Sydneygirl37 'the next steps a GP would take would be a full thyroid panel based on those results which include TPO and TGAB, and thyroid scan. '

The next steps a GP would take is very much dependent on the where in the world you are, and the decision of the individual GP. What you have quoted here, is not how it works here in the UK, under the NHS.

Sydneygirl37 profile image
Sydneygirl37 in reply toRedApple

Ok sure. For me personally, I pushed for the above with my GP in London. Or you can go around the GP and order your own blood tests. Happy now?

helvella profile image
helvellaAdministrator in reply toSydneygirl37

Removing gluten from the diet is likely a poor choice if the person might need or want a coeliac test. It is necessary to be consuming gluten for some time before a coeliac test.

Must be awful to have given up gluten, quite possibly felt much better, then be told they will never get diagnosed unless they start consuming gluten again for a considerable period. (From memory it is weeks.) A diagnosis can be important. But the suffering required to get that might seem too much to bear.

Would often be better to get tested as soon as possible, while still consuming gluten, rather than have to return to gluten after a break. Some who have had a break reported feeling worse than ever when they had to resume gluten consumption to get diagnosed.

2479razooks profile image
2479razooks in reply tohelvella

I’ve had a gluten test and it was all fine x

helvella profile image
helvellaAdministrator in reply to2479razooks

Glad to read that. :-)

greygoose profile image
greygoose in reply toSydneygirl37

With a TSH as high as 6, it’s an indicator of autoimmune acquired Hashimotos

No it's not. It's an indication of hypothyroidism, which can be caused by many things. Hashi's isn't the only cause.

Neither gluten-free nor dairy-free did anything for me. Good thing to try, but not both at the same time.

And, what is the point of reducing antibodies? They're not destroying the thyroid, they're cleaning the blood after an attack on the thyroid by the lymphocytes from the immune system. Reducing antibodies won't help - if it's even possible, which I have my doubts about.

Sydneygirl37 profile image
Sydneygirl37

that’s your personal perception and emotional reaction, doesn’t make it so. I said twice test for TPO to confirm. And the dietary comment is a SUGGESTION not an order.

Singwell profile image
Singwell

Your age! Seriously? You are 41 for heaven's sake. I'll let others give you more nuanced advice. Your TSH is over the benchmark so you're within rights to question this response.

Doris11 profile image
Doris11

Hi I had symptoms around 6 months and am fortunate I’ve got a good Dr as I explained my symptoms and my blood test was TSH 5 and FT4 was 10! I was listened to by her although the Endo she wrote to gave her a telling off for not doing x2 tests! List all your symptoms and even quite a few NICE guidelines if you can. Good luck 🤞❤️

Doris11 profile image
Doris11 in reply toDoris11

Ps she did test for antibodies etc..

Sleepman profile image
Sleepman

Biotin (vitamin b7) at high levels distorts blood test results ... Worth checking any supplements you are on.

helvella profile image
helvellaAdministrator in reply toSleepman

helvella - Biotin supplementation and testing

A short article about how and why biotin can affect blood tests. Includes information about how to avoid any problems.

helvella.blogspot.com/p/hel...

tattybogle profile image
tattybogle

i had worsening symptoms for 4 yrs ... then (when they finally thought to test thyroid)

I had TSH 5.7 and when retested a couple of months later it was 6.8 [0.36-4.1]

( TotalT4 was in range but was at the lower end and getting lower )

The autoimmune cause was identified by testing TPOab (Thyroid Peroxidase antibodies) which were extremely high 2499 then >3000 [0-50] ....(the NHS don't usually test TPOab twice but i think they were just double checking the first result)

So I was prescribed Levo with TSH 6.8 ~ based on symptoms and clear evidence of autoimmune cause.

That was many yrs ago, but current NHS guidelines say treatment with levo 'can be considered' for patients with symptoms of hypothyroidism if there are "two TSH results over range but under 10" (taken 3 months apart, to rule out temporary issues)

here : nice.org.uk/guidance/ng145/...

(TSH over range, while fT4 is still within range is classed as 'sub-clinical hypothyroidism')

1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment.

Sleepman profile image
Sleepman

Razcooks sorry for waffling on your post.

I am a bit nervous putting this in a fresh post before bouncing off

@Helvella thankyou for sharing, I had not read your info for a while.300 mg is quite a large biotin dose they are not worried about affecting tests. Dilema.

I will have to read a bit deeper/more carefully before changing my habits but this could potentially make blood tests simpler.

It has been a struggle for me.

I missed b12 for weeks last year stopping my bcomplex to do tests. I would have planned a Monday blood test then work meant I had to travel first thing ... aahh. Then it was Christmas post and I could not find my levels for ages. Aaahhh

igenneus super b complex methylated has 300 mg biotin which paper says is just about ok.

I did have a weird/outlier result on my first ever private blood test when on biotin but it was only a few months into taking levo. Things are likely to be settling then and not yet steady. Makes you wonder about test designs

The complexity of dealing with thyroid testing was a big stress at the start when your brain fogged and fatigued. (getting enough blood) Simplification like this would be significant.

Hmmm. A personal trial of doing 2 tests a week apart, the second after stopping biotin ?

Not greatest test design but about £30 as I am due tests ....

+

my blood

My supplements

My free thyroid levels

-

1 data point, 3 tests a lot more significant, I seem to remember from experiment designs

TUK test 9am test time, fasting no levo, no t3 for is it 12 hours.

I've had a virus and have a theory my thyroid levels have wobbled, may be wait a few weeks.

Makes you think about how hard it is to get good data.

What about a TUK wider trial?

Where would it sit on TUK priority list? Bet they could get special discount on tests ?

serenfach profile image
serenfach

The replies here have got a bit muddled. So razooks, yes, your TSH is high, the NHS will make you wait three months to test again. If the TSH is still high, you should be started on Levothyroxine. I know the wait seems forever, especially as you are feeling ill, so in the meantime have a private test for vitamins, iron etc. If any of these are out of range, it can make you feel really ill, and you have the three months to treat yourself. Good vit levels are vital to support your thyroid.

Keep reading on here, finding this forum literally saved my life. The more knowledge you have about the thyroid, the better, and we will support you going forward. Sending a hug.

Blackpanther46 profile image
Blackpanther46 in reply toserenfach

They really have all got confused poor Razooks !

Blackpanther46 profile image
Blackpanther46

what are your TPO results like ? X

2479razooks profile image
2479razooks in reply toBlackpanther46

163? I think

Blackpanther46 profile image
Blackpanther46 in reply to2479razooks

On your results it should state what is the range but that sounds high to me .

Some others on here will probably know more than me though .

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