Advice on results hypothyroid

[Julescat]

Hi all

I have just received a letter from the hospital with my most recent blood results (5 weeks ago - a week before starting meds) And they seem a little odd ... TSH 61.20mU/L , fT4 <2 pmol/L. These were the results the doctor had at my last hospital visit and I was put on 50mcg levothyroxine. I am due new blood test this week and seeing the hospital next week (5 weeks after starting the meds). Can anyone explain them to me? Thanks x

[SeasideSusie Remembering]

Julescat

From reading your profile it seems that you were hyperthyroid, had RAI in July and came off Carbimazole a few weeks ago. Your thyroid was very likely completely destroyed by the RAI and those results show that you were very hypothyroid.

A common reference range for TSH is around 0.2-4.2 so you can see that your TSH was very high. FT4 ranges vary, we see 7-17, 9-19, 11-23, 12-22 and others. With your FT4 at <2 it would seem to be undetectable which indicates that you are producing no thyroxine (T4) at all. So you need synthetic hormone replacement in the form of Levothyroxine (T4) and you have been put on a starter dose of 50mcg.

You should be tested 6 weeks after starting Levo, have dose increased by 25mcg, tested 6-8 weeks later, another dose increase of 25mcg. Continue this way every 6-8 weeks until your levels are where they need to be for you to feel well.

The aim of a hypo patient generally, when on Levo, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

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, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. 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 can give false results (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).

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

Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

[Julescat in reply to SeasideSusie]

Thanks for this information as it’s so helpful. Unfortunately I can’t have tests done first thing in the morning due to job restrictions so is there any other advice? Should I take my meds at lunchtime instead on that day?

[SeasideSusie Remembering in reply to Julescat]

The timing of the test is important when titrating dose of Levo. Most doctors base dose on TSH so when looking for an increase in dose or to avoid a reduction then we need the highest possible TSH. TSH is highest early morning and falls throughout the day, with 9am being the highest and mid afternoon being the lowest.

Taking Levo before the test gives a false high FT4 result so to get a result which reflects the normal circulating hormone level it's advised to take last dose 24 hours before the blood draw. Taking Levo before the test will have little to no effect on TSH level.

[jimh111]

T4 and T3 are the hormones secreted by the thyroid, mainly T4. T3 is the active from and the body converts T4 to T3 as it needs it. The pituitary secretes TSH to stimulate the thyroid, the lower free T4 (fT4) and free T3 (fT3) the more TSH is secreted. If your thyroid is failing your T3 and T4 levels will be low and you TSH very high as the pituitary tries hard to stimulate the thyroid to produce more hormone.

Your blood test shows you were very hypothyroid, your next blood test will be helpful. Almost certainly you will need an increase in your levothyroxine.

[Julescat in reply to jimh111]

Thank you for your reply. It was very helpful.

[pennyannie]

Hello Julescat

I was 56 when diagnosed with Graves Disease in 2003 and treated with RAI in 2005.

My symptoms were exhaustion, insomnia and dry gritty eyes.

I became very unwell some 8 years after this treatment that burns out the thyroid is situ.

RAI is known to " trash " vitamins and minerals, so would suggest your get these checked, in particular, ferritin, folate, B12 and vitamin D, as if not optimal, and at least 50% through the relevant ranges, your ability to utilise your thyroid hormone medication will be compromised.

It is essential that you are dosed and monitored on your T3 and T4 blood test results, and not just on a TSH blood test result, which is the test most doctors in primary care work to.

After RAI, your hypothalamic - pituitary - thyroid feedback is destroyed, in short meaning, your feedback loop is now broken, and most doctors in primary care rely on this feedback loop to monitor thyroid status, so therefore you need the T3 and T4 measured and dosed according to your actual T3 and T4 levels, as the TSH in Graves patients is not reliable nor an accurate " picture " of the patients thyroid status.

There is a lot to read and understand and suggest you take a look at the Elaine Moore Graves Disease Foundation. This lady has the disease, and following RAI in the late 1990's found no help or understanding with her health issues, so wrote a book to help others who might be in a similar position. The website is Stateside but the knowledge, research and information on Graves Disease is total, and there is an open forum, much like this amazing website where you can post your question and receive a considered, knowledgeable answer.

I am now self medicating my lingering symptoms of Graves, along with the thyroid eye disease and hypothyroidism caused by the RAI treatment and getting my life back on track, as best I can.

Please take your time, "the nature of Graves - is to go for it " - but your body has been extremely overstressed and running a marathon several times a day, now it's as though you have hit a wall, and been steamrollered over, like one of those cartoon characters.

I don't think people actually understand how unwell and tired all this can leave a patient. This treatment option is a " quick fix " which does somewhat belie the seriousness of the disease. Had you had your thyroid surgically removed and carry a visible scar, you would be more likely to be treated with consideration and be signed off as in post surgery recovery.

You need time to recover and if feeling as though you are on your knees, returning to work will only compound your health issues at this point in time.

[Julescat in reply to pennyannie]

Thank you. You have given me lots to think about. I will check if they have done my T3 as well when I go next week.