What do I do now.....any help truly appreciated - Thyroid UK

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What do I do now.....any help truly appreciated

Earlyriser profile image
11 Replies

Finally plucked up the courage to go back to the surgery and try to get my results. To my relief they printed them out for me. Of course being new to thyroid problems (I thought I’d just got b12deficiency) I haven’t a clue what to do next. All I’ve had is a one line letter from the surgery saying thyroid test to be done again in 6 months. Any information or advice gratefully received.

The results are:

Serum free T4 pmol/L 10.5 range (12 - 22) below low reference limit

Serum TSH 4.4 mu/L range (0.3 - 4.2) above high reference range limit

Serum free triiodothyronine 5.3 pmol/L range (3.1 - 6.8)

There are a couple of other test results which are out of range but I don’t know if they relate to thyroid problems

Many thanks

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Earlyriser profile image
Earlyriser
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11 Replies
SeasideSusie profile image
SeasideSusieRemembering

Earlyriser

All I’ve had is a one line letter from the surgery saying thyroid test to be done again in 6 months.

Serum free T4 pmol/L 10.5 range (12 - 22) below low reference limit

Serum TSH 4.4 mu/L range (0.3 - 4.2) above high reference range limit

Is this your first test? If so it's normal to repeat in 3 months just in case there's a non-thyroidal illness that causes these results. You shouldn't have to wait 6 months.

Primary (overt) hypothyroidism is usually diagnosed when TSH reaches 10 with a below range FT4.

Subclinical hypothyroidism is when TSH is above range but FT4 is within range.

There seems to be nothing in between for results such as yours.

Some GPs will start prescribing Levo for subclinical, it all depends on the GP.

In your position, I would print off this list of signs and symptoms of hypothyroidism

thyroiduk.org/tuk/about_the...

Tick any that apply to you. Then either see a different GP and point out your below range FT4 with raised TSH and ask for a trial of Levo, or if that's not possible and you have to see the same GP then I would just book a re-test in 2-3 months.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

There are a couple of other test results which are out of range but I don’t know if they relate to thyroid problems

What are these?

Earlyriser profile image
Earlyriser in reply to SeasideSusie

Thank you for responding with so much information SeasideSusie. I’m going to have to read through several times to take it all in. It is my first test for thyroid test. I’m afraid I don’t totally trust my go because I was told that b 12 was normal when it was actually very low and I was really struggling. I haven’t been to the surgery for nearly 3 years until recently because I feel so poorly plus my blood pressure was dangerously high. I ordered a thyroid test from medichecks which includes antibody tests and I think I will do this in a couple of months instead of going to the gp. It wasn’t a fasting blood test and it was done mid morning. Due to b12 deficiency I take high dose b complex and have done for a long time. I can tick yes to an awful lot of the thyroid problems on the list and so can my daughter. My mum had and my sister has thyroid problems my mum had hashimoto thyroiditis.

Earlyriser profile image
Earlyriser in reply to SeasideSusie

Ooh sorry SeasideSusie I missed the question at the very end! They are:

alanine aminotransferase 45 u/L range (0.0 - 35)

Serum C reactive protein level is also at the very top of the range 5mg/L range (0.0 - 5.0)

Haemaglobin concentration and red blood cell count are just above the range.

SeasideSusie profile image
SeasideSusieRemembering in reply to Earlyriser

C reactive protein is an inflammation marker but it's non-specific. If it goes over range and continues to be then maybe GP should investigate. I don't know enough about raised haemoglobin or RBC to comment.

Miniliz profile image
Miniliz

Ask for thyroid antibodies to be tested if you can. I had similar results and they told me there was nothing wrong with me, but I was so poorly. Once I had antibody results that were high, I had leverage to insist that I was actually ill!

Earlyriser profile image
Earlyriser in reply to Miniliz

Thank you for replying Miniliz. I know just what you mean. I was beginning to feel like a hyperchondriac until I got these results. I have ordered a medicheck test for thyroid which includes 2 antibody tests. Really don’t want to go back to the doctors again unless I absolutely have to. I’ll get that done in a couple of months doing everything that SeasideSusie has suggested. The doctor was so rude and actually only did the tests to prove there was nothing wrong with me! No wonder I didn’t go for nearly 3 years.

Miniliz profile image
Miniliz in reply to Earlyriser

One of mine was rude to me too. As I am Coeliac, he told me it was because I was eating gluten, nothing to do with my thyroid. There's no gluten in my house! But he still insisted that I'd be surprised how much gluten I was eating....! The fact that the symptoms are completely different...?! So you are far from being alone in finding it hard to get answers.

In the end, once I had the antibody results, a different GP supported me - I had to get a private diagnosis and then once I had that they agreed to treat me. Was almost a year from getting sick to getting a diagnosis. I hope that the next lot of tests are helpful :)

SlowDragon profile image
SlowDragonAdministrator

Would suspect you have high thyroid antibodies

Suggest you do private testing in 6-8 weeks

As you are taking vitamin B complex, (or any supplements containing biotin), remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

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 Thyroid antibodies are raised

Is you B12 issue diagnosed as PA?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

Earlyriser profile image
Earlyriser in reply to SlowDragon

Oh SlowDragon, how I wish I had a a pa diagnosis at least then I might get some help to get better. I have had grey hair and vitiligo since I was about 17 yoa. I had b12 tested in 2014 and was given 6 b12 injections 1 a month. Then they did a b12 test and told me off because I had had all 6 injections and my b12 was “dangerously high” and that I had enough b12 to last 30 years. I had another blood test for something else in 2015 and snook in a b12 test. I was told over the course of a year several times that it was normal Despite repeatedly telling them how bad I felt. In 2016 i ended up having to give up a job that I had given my heart and soul to because I just couldn’t cope. Last year, despite taking as much b12 as I could by tablet and spray form, I felt so bad that I contacted b12 d and they helped me to get b12 ampoules and learn to self inject. This has made an amazing difference but I know there is still something wrong. I didn’t go to the surgery at all for nearly 3 years. A couple of months ago my bp went up to 210 over 120 with a pulse of 55 so I had to go back to the gp. I asked what my b12 was in 2015 and it was 163 with a range of 197 - ? (Sorry can’t remember the upper level). They put me on amlodipine and ramipril which made me feel awful so I went back to ask them to change them for something else. That’s when she told me there was nothing wrong with me and did the blood test.

Really sorry to have gone on and on....and on.

SlowDragon profile image
SlowDragonAdministrator in reply to Earlyriser

Sadly your tale of terrible care is far from unusual

Invisible illness seems beyond many GP's

You can read many regular members profiles. You can see many of us take years, decades to get diagnosed and work out correct treatment

Personally I could never have made full recovery without all the fantastic help, knowledge and support on here

Come back with new post once you get results and ranges on full testing

Earlyriser profile image
Earlyriser

Many sincere thanks to you all xx

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