Newbie: Hi, I’m new here. Hello all! I had blood... - Thyroid UK

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Hi,

I’m new here. Hello all! I had blood tests done a few weeks ago and the results showed tsh = 4.7 and T4 = 9. The Gp said this shows borderline mild hypothyroidism although the multiple symptoms I’ve got are typically hypothyroid symptoms (according to all the info I have read) and are off the scale severe!! I would like to know if it is common to have results of subclinical mild hypothyroidism bit for that to present with severe symptoms? I have started a trial of 50mcg levothyroxine. Grateful for any info.

Thanks, Flossie

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24 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.

It's very common for doctors to dismiss our symptoms. If only they knew! Just know that people in this group will know where you are at and sympathise.

Have you had your thyroid antibodies tested? This can indicate if your hypothyroidism is due to an autoimmune condition called Hashimoto's. GPs dont really pay this any attention but 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. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.

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.

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/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

in reply to Jaydee1507

Thank you so much for your reply and the information which is very helpful. I don’t think I’ve had my antibodies tested. The Gp never said anything about that when she rang me with the results. She just said they were borderline, and it was “mild” although my symptoms are awful and have been going on for a while, just piling up, one after another! Most recent being excruciating hip pain which now seems to be settling. I have been on the levo for nearly 5 weeks. There seems to be an improvement with the horrendous constipation which is great news, but everything else remains unchanged at the moment.

I will fill in the rest of my profile. Thanks again for the info and advice. I really appreciate it.

Jaydee1507 profile image
Jaydee1507Administrator in reply to

You should get retested 6-8 weeks after being on a constant dose, so you should have a test coming up. When you get the results ask then to print them off and post them here for comments in a new post.

Try and always get the same brand of Levo.

See if GP will test your TPO antibodies and the vitamins. Post results in a new post.

Some tips for doing your blood tests which are patient to patient tips that you don't need to share with your GP.

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 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

in reply to Jaydee1507

Thank you Jaydee1507, yes - I will ask for a printout of results - that’s a great idea. I will ask about the antibody test too. Thanks for the testing protocol advice! My last test was done in the afternoon.The next one is at 0830am. I usually take the levo at 7am-ish so I’ll leave it until after the test. Thank you so much.

Buddy195 profile image
Buddy195Administrator

Welcome to the forum Flossie-teacake

Could you supply the reference ranges for your results (in brackets after the reading) as these can vary between laboratories.

Have you tested FT3 and antibodies (the latter is to see if your thyroid issues are autoimmune)?

Testing key thyroid vitamins is also advised (ferritin, folate, b12 and vit D)

in reply to Buddy195

Hi Buddy195 and thank you. I’m sorry but I don’t know the ranges for the results. The Gp didn’t tell me. I didn’t even know they could vary! I will try and find out. I don’t think I had antibodies done and the gp never said anything about ft3 either, or vitamins! I think they just did the bare minimum of tests. I will ask the gp when i have my blood retested in two weeks. Thanks again. Very helpful.

Buddy195 profile image
Buddy195Administrator in reply to

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health: thyroiduk.org/help-and-supp...

SlowDragon profile image
SlowDragonAdministrator in reply to

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

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still 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.

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 

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

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

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 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

List of private testing options and money off codes

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

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

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

in reply to SlowDragon

Thank you so much for the info! Much appreciated.

Sparklingsunshine profile image
Sparklingsunshine in reply to

I was diagnosed 3 years ago this month!. I remember one GP I spoke to saying they would test anibodies as most cases of hypo are autoimmune. I was told they normally test antibodies during the first batch of blood after starting on Levo but mine got missed, due to Covid. I did push for it and got it done eventually, as I think its important to know if its Hashimotos or not. Mine was actually negative, which tallies with a private test I did a few years ago. No raised antibodies.

I think many GP's dont seem that bothered about testing antibodies as the treatment for all types of hypothyroidism is the same.

in reply to Sparklingsunshine

Ahh, maybe they will check it at my next blood tests as that will be my first tests after starting levo. Thank you so much for your reply.

The t4 test result was 9 but the gp never said anything about t3 or antibodies so i suspect they weren’t done. I will ask her again and also look at the private options. Thank you.

Can’t get my head around the fact that the ranges are different from one lab to another. Does that mean then that in one place you might be considered within normal range, but if you were tested somewhere else you would be considered hypo? I’ve read that some places call a normal t4 low end of range is 7-ish, but others say 10 is the lower end…or 12…or 9. I don’t get it…

Jaydee1507 profile image
Jaydee1507Administrator in reply to

The lab ranges are just tailored to the particular machine and method that is used to do the test. Even though the range will vary for each machine in each different lab your results will actually be the same or similar. Just work out the percentage through range and that will be comparable.

SeasideSusie profile image
SeasideSusieRemembering in reply to

Flossie-teacake

Different labs use different testing equipment, calibrated differently, and to some extent ranges are based on local population. We see lots of ranges here, eg 7-17, 9-19, 11-23, 12-22 plus others.

Does that mean then that in one place you might be considered within normal range, but if you were tested somewhere else you would be considered hypo?

No, because the result would be specific to the lab which did your test so you can't use the result from lab A with the range from lab B, you can only use the result from lab A with the range from lab A.

For example, my GP range is 7-17 and the last time I was tested there the result was 12.5 which is 55% through range. When I tested with a private lab the range was 12-22 the result was 17.2 which is 52% through range. [There will always be slight variation in level as nothing is static and level will vary slightly throughout the day.] So you can see that my actual results looks quite different but when you compare their percentage through the range which came with each result they are virtually the same.

If you want to work out your percentage through range for any test here is a calculator:

thyroid.dopiaza.org/

helvella profile image
helvellaAdministratorThyroid UK in reply to

Imagine if one lab has bottom at 7, and another at 12, and you had your test run at both. It should be that (if you are low) you might get the result 7 at the first and 12 at the second.

Therefore, at both, you are at the bottom of their respective ranges.

This isn't 100% true but it is as near as we can achieve.

And it is why we often look at percentage through range. In the example I made upo, that would be 0% through at both!

In some ways, it is like having two cars, one with a speedo in mph and the other in kph!

At a real speed of 10 mph, the mph car would show 10, and the kph car would show 16. At the exact same speed!

ohhhh! I didn’t know any of this!( Plus I am a bit thick 🤣🤣)Maybe I can get away with blaming it it on fatigue. I just thought every lab would use the same machines and methods. Thanks for the calculator! I was a bit thrown by some of the things I’ve been reading on t’internet where some places seem to suggest definite low and high ranges. I think my brain has blown a gasket!

helvella profile image
helvellaAdministratorThyroid UK in reply to

None of us knew any of this in our earlier lives!

How we wish they did use the same machines and methods. (Up to the point at which newer ideas are blocked because not everywhere can change at the same time.)

The process of getting them to use the same ranges is called harmonisation.

Failure to do so is called a disastrous mess. :-)

More stupid questions 🤣 you’ll get used to me: so…with the tsh level…the ranges vary a little bit also, but is there a “universal” figure/result/ cut off that means definitely hypo? Does that question even makes sense? I just don’t know any more

helvella profile image
helvellaAdministratorThyroid UK in reply to

You are right that the TSH ranges are nearer to being consistent.

But no, TSH alone simply doesn't define being hypo.

If you had a TSH of, say 20, it is pretty clear-cut that you are hypo - except, your body could simply be over-producing TSH. (In that case, you could well be hyper as the excess TSH makes the thyroid produce and release too much thyroid hormone.)

The official UK guidelines tend to focus on not diagnosing until you are over 10. But that too is nonsense. Many people are clearly hypo with a lower TSH.

And if your body can't produce enough TSH, you could be hypo with a very low TSH result.

These other things are very much less common. But it would be wrong to leave you with the idea that you can come to a clear conclusion on just one TSH result - no other tests.

Ahh, yes, I see what you mean. Some of the articles I read suggested that the cut off higher end of tsh that would indicate hypo should be lowered from 4/5 to 2.5/3.

Thanks for all the help and info and advice folks! My Gp never told me anything really. I’m now worrying if I’ve started the levo trial too soon, but the symptoms were off the scale and I’ve already been labelled with the dreaded “Chronic fatigue/M.E” I’m on patch HRT and have been stable on that for a while so wanted to check to see if something else was at play. My nan and mum both had thyroid issues (one hypo, one hyper followed by hypo).

HeartWoman profile image
HeartWoman in reply to

I would feel horrible and probably not be able to function with your TSH level. I am what is considered "in range" now, but still having to increase me dose. I am waiting to level out now afyer increasing 11 days ago and it is not fun.

I am also on HRT and have been stable on that for some time now.

If I were you, I would take the 50 mcg and retest in 6-8 weeks.

in reply to HeartWoman

Thank you so much for your reply. Yes - I think I will just take the meds and see what the next test shows. I was worrying that perhaps my results were not far enough out of range so thank you for saying that about the tsh.

Also my t4 is 9 and, although I don’t know about the range that was used for the test, it seems the lower end of the values for the “normal range” varies from 7.7 to 12, depending on the lab and testing method, in that case 9 seems fairly on the low side whatever the range may be.

Since starting the levo I’ve had all kinds of odd things/effects occur, but I assume that is all part of getting treatment and finding the right level etc. I agree - it’s definitely not fun!

I’ve been on hrt since I was 42, and have had a horrendous perimenopause. I think I read somewhere recently(my memory is rubbish!) that an “extreme” perimenopause can also be caused by hypothyroid so that also got me wondering how long this may have been bubbling away, under the surface.

I’ll keep taking the tablets.

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