Repeat thyroid test: Hi, I was diagnosed with... - Thyroid UK

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Repeat thyroid test

Naturegirl22 profile image
21 Replies

Hi,

I was diagnosed with Hypothyroidism or Borderline Hypothyroidism about a year ago as my TSH was above 5 and below 10 with my T4 being just below mid-range. I was put onto Levothyroxine 100mg. I then had a repeat thyroid test about 6 weeks later which included my TSH, T4 and T3 levels where my TSH had decreased into the normal range of 1.71mu/L (range 0.30-5.00mu/L. My T4 levels had increased slightly being at 16.9pmol/L (range 9.00-19.00pmol/L). My T3 levels had dropped slightly from 5.21 (I think as I cannot find my print out) to 4.30pmol/L (range 3.25-6.21pmol/L). I tried to challenge my doctor on my T3 level dropping but I was told this was normal and told to come back for a repeat test this April which was about 7 months after.

I had a full blood test for everything this April 29th and my thyroid levels have come back abnormal. I am now hyperthyroid as my TSH level is now 0.08mu/L (range 0.30-5.00mu/L) and my T4 level is now 20.1pmol/L (range 9.00-19.00pmol/L). My Levothyroxine has now been reduced from 100mg to 75mg daily and I have been told to come back in 3 months time. I asked them why my T3 levels were not tested this time but they told me it is not neccessary.

I am not quite sure what to make of all this. They don't seem to have a clue what they are doing.

Laura.

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Naturegirl22
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21 Replies
Marz profile image
Marz

How would he know you are over medicated without the FT3 reading ? It is only when the FT3 is over range I have read - that indicates you are on too much T4. Maybe do not lower your dose - sssh did I say that ?

He's trying to hoodwink you and save dosh for the practice ....tell him you will not reduce your dose unless you have the FT3 reading :-)

Naturegirl22 profile image
Naturegirl22 in reply to Marz

Hi,

my dose has already been lowered to 75mg as of nearly a week ago. Many of the doctors there will not carry out the T3 test which is very frustrating. I will try and see another doctor who may understand and do this for me.

Marz profile image
Marz in reply to Naturegirl22

..could you have private testing through Blue Horizon ?

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

Naturegirl22 profile image
Naturegirl22 in reply to Marz

Hi thank you, this looks great and not too expensive. I will ask my doctor tomorrow first and see what he says :)

Marz profile image
Marz in reply to Naturegirl22

...always good to have a back up plan :-)

Hi I had a similar thing when I started on Levo about 3 years ago. Sub clinical and started on 25mg though.upped to 50mg after 6wks - bloods all within range and fine.then increased to only 62.5 which took Tsh too low ft4 at upper limit. I was asked to reduce.i didn't because they hadn't tested ft3 so then had a private ft3 done and that indeed was also over range,it was only then that I did reduce it!if I hadn't had that done I wouldn't have reduced - I felt really well. Since then I always get ft3 tested alongside the others and have found that also for me anyway, when I increase and ft4 goes higher in range my Ft3 Always drops a little in the range. Depends what you read and which you believe I think,some sources say that is a normal happening,others say ft3 should increase also!

Naturegirl22 profile image
Naturegirl22 in reply to

Thank you,

I still don't know enough about it to be sure. Even when I was on Levothyroxine 100mg and had been on that for a long time, I still felt exhausted, it didn't make any difference at all. It has now been reduced to 75mg for nearly a week now so I am not sure if I should wait another 3 months till when I have my next thyroid test to go to a doctor who will test for FT3 too as I don't think they will do it now as I just had my thyroid test done but I have an appointment this Monday with a different doctor so I can always ask the doctor then. It is important to know.

shaws profile image
shawsAdministrator in reply to Naturegirl22

If you've been given a new increase in your dose you should always have another blood test about 6 to 8 weeks later to double-check your hormones and you are stable. They just cannot increase and that's it - finished.

Naturegirl22 profile image
Naturegirl22 in reply to shaws

They started it off at 100mg, I had blood test 6 weeks later which showed all in range then they left me for seven months and now they have reduced the dose to 75mg and told me to come back in 3 months time.

shaws profile image
shawsAdministrator

Laura, you are quite right - we do expect doctors to know the answers but unfortunately they don't as we find out sooner or later.

There is nothing wrong with your results and I doubt your GP knows very much at all - like many of them it would seem.

To reduce your dose is the wrong thing to do and symptoms may recur. They should treat the patient and not a print-out on a piece of paper.

I'd take up Marz's very good suggestion and refuse to reduce your dose until he does a Free T3 blood test. T3 is the active hormone required in all of our Receptor Cells (the brain contains the most) and if we don't have sufficient for all our billions of cells we will be unwell with symptoms.

Some of us need a very low TSH and some need it suppressed. They imagine the patient will have problems when it's very low but we are more likely to have problems when they adjust the doses according to the TSH. It's so annoying that patients have to tell the doctors how best to treat them but it seems to be the truth.

Excerpt from a Pulse Online article (Doctor's magazine) and it's by Dr Toft who was President of the British Thyroid Association:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

Naturegirl22 profile image
Naturegirl22 in reply to shaws

I will see what the doctor says on Monday morning. I still feel too exhausted to do much and I am fed up with it to be honest. I doubt the doctor will listen to me but I have to try somehow. Thank you.

shaws profile image
shawsAdministrator in reply to Naturegirl22

It's because we've never had to ask questions before, we just took the doctors word for whatever we were consulting but because we are dealing with a lifegiving hormone we have to have sufficient to function. Our brains contain the most T3 receptor cells.

Naturegirl22 profile image
Naturegirl22 in reply to shaws

By taking Levothyroxine, none of my symptoms have changed, they have just stayed the same so many something else is going on, I don't know unless it is to do with my FT3

shaws profile image
shawsAdministrator in reply to Naturegirl22

Just be truthful and say that you have now been diagnosed for 1 year and you don't feel much better than before you were diagnosed.

Is it possible to have some T3 added to your T4? (you can but ask). If he is reluctant, ask if he'll test your Free T4 and Free T3 and this is the reason.

You can tell him you've taken advice from the NHS Choices Thyroiduk.org.uk. This list are for people who 'haven't' been diagnosed.

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

Naturegirl22 profile image
Naturegirl22 in reply to shaws

Yes, I will do that thank you :)

SlowDragon profile image
SlowDragonAdministrator

Has your GP also checked your levels of B12, Vitamin D, folate and ferratin?

All these need to be well within normal ranges (ideally at higher end) in order for thyroxine to be able to work well.

Also have you had both TPO and TG antibodies checked?

If these are high then this means you have auto-immune thyroid or Hashimoto's

Many Hashimoto's patients find they have issues with gluten (even if they have had a negative Coeliacs test) - adopting a gluten free diet may reduce antibodies and/or relieve symptoms

If you get no help from GP you can get private test easily - see

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

For example Blue Horizon - "Thyroid plus eleven" will test all these.

Easy to do finger-prick test at home.

Many of us find that the only person who understands our condition well is ourself. It is a good idea to keep a record of all your test results, medication levels, supplements and how you are feeling at the time of the tests. (Surprising how easily you forget which dose etc over time)

Hashimoto's can be a complex puzzle that throws other things out of balance

It takes some of us many months to find a balance on a particular dose of thyroxine. If GP keeps changing dose up and down your body doesn't know where it is.

Naturegirl22 profile image
Naturegirl22 in reply to SlowDragon

Hi thank you, I was tested for antibodies but I cannot remember which ones as I can't find my print out and I didn't have Hashimoto's.

I was tested for my vitamin D, B12, Ferritin and Folate maybe 5-6 months ago now, my vitamin D was 50 when the bottom range starts at 80 but I was told that this is fine for the country we are living in (England). My Ferritin (iron) was 9 when the lowest range started at 9 but they just said it was in range but I questioned her on this as she started me off on iron tablets but then she stopped them a month later. My B12 was 'in range' at about 300 when the upper limit was 1000. I was just told to take vitamin D capsules each day.

SlowDragon profile image
SlowDragonAdministrator in reply to Naturegirl22

Good that you think you don't have high antibodies. If you can't find the print out of old tests can ask GP for new copy (you are entitled to file copies of all tests)

I don't know anything about ferratin and B12 supplements, as I have never needed to take them. Sounds like they both need supplementing

You could start a new post asking about supplements, others who know more can then advise on which and how much

How much vitamin D are you taking, and how long have you been supplementing. You need regular blood test to check levels if supplementing. If G P won't then can get done easily in post via Thyroid Uk at City Assay for £28.

Naturegirl22 profile image
Naturegirl22 in reply to SlowDragon

I do have the print out somewhere. Yes I think I actually posted about it before when I received these results so they will be on my profile somewhere. I haven't been tested since then though. Yes I may get it done for £28.

Thank you

humanbean profile image
humanbean in reply to Naturegirl22

Your doctor's logic escapes me on the subject of vitamin D.

English people aren't a mutant type of human, despite what your doctor said. We need good levels of vitamin D to feel well just like everyone else. If the healthy range starts at 80, then having a level of 50 is not "fine" just because you are English. It might be common to be low in vitamin D, but that's a different kettle of fish entirely.

On this forum many people have found that having a level of about 100 or so makes them feel better. Some go even higher.

Naturegirl22 profile image
Naturegirl22 in reply to humanbean

Thank you,

This makes me feel a lot better.

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