Newbie in search of advice: I’ve had an under... - Thyroid UK

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Newbie in search of advice

Vivb56 profile image
6 Replies

I’ve had an under active thyroid for about 10 years. For the most part well medicated and doing ok on 75mg Levothyroxine. In January 2018 (after major weight gain and poor lifestyle during the proceeding 6 months due to stress) my TSH levels rose to 5.21 (0.27 - 4.20) and T4 15.3 (12.00 - 22.00). All other tests (ferritin, folate, vitamin d, b12 etc ok). So meds’ increased to 100mg. I was doing ok until late summer to now when i started to feel like a train crash. I have lost the weight (slimming world a struggle but I did it) and fitness levels pretty much back to a fitness I’ve always had given I’m now 10years older (63). But....... now my ferritin levels are rising (currently 405 - way over top level of 148!) and I’m being investigated for fatty liver, bone marrow issues etc. The thing is I have all the symptoms of hypothyroid and / or over medication. Palpitations, breathlessness, gritty eyes and difficulty focusing somethings, aches in my back and groin muscles plus itchy skin and intolerance to heat. My last test results in October were TSH 0.39 and T4 21.9. I’ve asked for another Thyroid test which I will have on Thursday. My question is (sorry for long background) should I take my meds before my 9 am blood test. I don’t as a rule but since I am wanting to see if I’m over medicated do you think I should take at 5am as normal? Sorry this is so long. Any help would be gratefully received. Thank you

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Vivb56
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SeasideSusie profile image
SeasideSusieRemembering

My question is (sorry for long background) should I take my meds before my 9 am blood test. I don’t as a rule but since I am wanting to see if I’m over medicated do you think I should take at 5am as normal?

No, you don't take your meds in the 24 hours preceding the blood draw. If you take them too close to your blood draw you get a false high FT4, if you take them longer than 24 hours before then you get a false low FT4. Levo peaks in the blood 2-4 hours after ingestion. Having your test 4 hours after taking your Levo will catch your FT4 either at it's peak or just beginning to reduce, it wont be your normal circulating level.

From thyroidpharmacist.com/artic...

So let’s say you take your T4 medication at 8 am and have your blood test at 10 am – your thyroid labs may show that your T4 is falsely elevated, and this may result in your doctor lowering your medication, when in reality, your T4 levels may be within range for the rest of the day, with the exception of that 2 hour, post dose peak.

In most cases, taking a T4 medication the morning before your lab test will not be an issue, as most doctors adjust the dosages according to the TSH, which stays stable after T4 dosing. However, to get a reading of your T4 levels that is reflective of most of the day, you would want to postpone your T4 medication until after the lab test.

When booking thyroid tests, we advise:

* Book the first appointment of the morning. 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.

* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take 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.

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

My last test results in October were TSH 0.39 and T4 21.9

It would seem that your FT4 is probably at the top of it's range, or very near. Is it the same range as for the other result (12-22)? In this case it would be helpful to have FT3 result as well, to see how well you convert T4 to T3. If FT4 is high and FT3 is low then you have a conversion problem.

Vivb56 profile image
Vivb56 in reply toSeasideSusie

Thanks for such a promt reply and valuable information. Much appreciated.

SlowDragon profile image
SlowDragonAdministrator

As well as ferritin retested, you need vitamin D, folate, and B12 tested too

If ferritin is still high you will need investigation for hemochromatosis

High ferritin can be a cause of hypothyroidism.

Are you on same brand of Levothyroxine as you normally take?

Vivb56 profile image
Vivb56 in reply toSlowDragon

Thank you for your response. I have been tested for hemochromatosis and I don’t have that. Yes same brand of Levothyroxine so no change. I must admit I was hoping possible hypothyroidism may be causing high ferritin levels because some of the alternatives are frightening!

SlowDragon profile image
SlowDragonAdministrator in reply toVivb56

Personally I find my ferritin level goes higher when FT4 is high. Though not that high

Which is one of the problems of Levothyroxine mono therapy. In order to get high enough FT3 on just Levothyroxine we frequently need very high FT4

Vivb56 profile image
Vivb56 in reply toSlowDragon

I’ve had a series of tests since October when ferritin level first identified as high, in January and February (last week) and the Ferritin level has just crept up. The February Test also showed slight anaemia ! So I have just taken a urine sample for protein test (bone marrow issues 😱). I have asked my doctor to look again at my thyroid in terms of t3 and antibodies (clutching at straws really in the hope it’s the metabolic change in my thyroid causing raised ferritin). I won’t know what he’s requested until I go for blood test on Thursday at the surgery. If it’s just TSH and T4 along with folate, vitamin d and vit b again (these have all shown levels in range - I take vitamin d supplement) I will go for a the private blood test. In the mean time my anxiety levels are through the roof 🙁

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