Thyroid test results, advice needed.: Hi, I’ve... - Thyroid UK

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Thyroid test results, advice needed.

Seatreeleaf profile image
6 Replies

Hi,

I’ve been experiencing increased tiredness, forgetfulness, erratic sleep pattern and my hair is noticeably thinner. Which has made me concerned about my thyroid, as my symptoms seem similar to hypothyroidism.

I’m on seroquel, which could also be causing/ exacerbating these problems. I’ve read that seroquel can cause thyroid problems too. I’m hoping to be tapering off this soon.

I had a blood test in 2018, where they checked my thyroid. At the time I was told everything was fine. But since experiencing these symptoms, which have got worse over time, I thought I’d recheck my blood test.

These are the results;

Free T4 level 10.2 pmol/L [7 - 20]

TSH level 10.14 miu/L [0.35 - 5]

The Doctor has assessed these results as ‘satisfactory, no further action’. Am I right to be concerned that my TSH levels are outside the normal range?

I posted on another hypothyroidism forum and the consensus seems that my blood test showed that my TSH level was very high.

I feel quite upset that this wasn’t picked up on four years ago. I blindly trusted the doctor and now feel very let down.

I’ve booked another blood test and will be seeing a doctor this week too. In the mean time, I wondered what you knowledgeable people thought about my results?

Thank you for taking the time.

6 Replies
fuchsia-pink profile image
fuchsia-pink

See a different doctor. Even very stupid doctors normally wake up when TSH is over 10 and, after a second out-of-range result start treating you for your failing thyroid. You must be feeling awful :(

You need your next blood test to be early in the morning - before 9am as TSH drops quite a lot during the day - so if yours is later than that, try and re-book.

And ask them to test thyroid antibodies as well (this isn't controversial, as over 900% of hypothyroidism is due to Hashimoto's or Hashi's, which is indicated by over-range antibodies. And - pushing your luck a bit here but worth a try - ask them also to test key nutrients - ferritin, folate, vit D and B12. I've had some success with my GP by saying that these tests are recommended by Thyroid UK. These are important as many of us hypos have poor nutrients and need to supplement to get properly well.

With 2 over-range blood results (over 10 or over-range plus high antibodies) you should get a prescription for levo - either a "standard starter dose" of 50 mcg or 1 mcg per kg of body weight, rounded up. And another blood test in 6 - 8 weeks (always early morning, fasting and 24 hours from your previous dose of levo) to see if you need a dose increase. And further blood tests every 6 -8 weeks after that until TSH is nice and low - always less than 2 and probably less than 1 and free T4 is in the top 1/3 or higher of the lab range and you feel properly well. If TH is down, free T4 is high and you still feel rubbish, you will need free T3 testing too, but some doctors and labs are reluctant to do this.

And finally (for now) if you pay for prescriptions, once you get levo, remember to get the GP to give you a signed exemption form - which gives you free prescriptions for everything, not just your thyroid meds. Good luck x

Seatreeleaf profile image
Seatreeleaf in reply to fuchsia-pink

Thank you for that comprehensive reply, It’s very much appreciated.

It’s all quite overwhelming to realise that what I thought was side effects from seroquel (quetiapine) causing all these problems, is actually most likely to be my thyroid. I did read that it can have adverse effects on the thyroid too, so it maybe a contributing factor.

My appointment is at 12pm, I’ll be seeing a doctor and getting my bloods done. I don’t think I’d be able to change times, as it’s rather difficult to get a face to face appointment currently.

They’re testing my; Cholesterol, CRP, FBC, Serum Ferritin, HBA1c, HDL-Cholesterol, U&E, Liver Profile, Bone Profile, Triglyceride, Thyroid Function (TSH)

Is that sufficient?

I take a B12 spray (1200µg), a vitamin D (3000iu) and K2 (75μg)spray and an iron (14mg) with vitamin c (60mg) supplement. I haven’t taken any today as I’ve just read it can effect the accuracy of the results. My test is on Friday, have I allowed enough time?

Thanks again for taking the time to reply. My tired brain is a bit bamboozled by all the new information I’ve been trying to cram in over the last few days.

fuchsia-pink profile image
fuchsia-pink in reply to Seatreeleaf

You will have a much lower TSH result with a test at midday than you would have done with an earlier test - see graph here thyroidpatients.ca/2020/07/...

Good that you are getting ferritin tested - see if they will add folate, B12 and all thyroid antibodies. It is usually hard to get vit D tested so if you're supplementing, you can maybe skip that one for now. And yes, stop any supplements with biotin in now, as that can affect the results.

Going forwards TSH isn't nearly enough when looking at thyroid blood results - you will always need free T4 testing once on thyroid meds and ideally free T3 (but some GPs and labs are resistant) but you only need one out-of-range blood result from antibodies to know you have Hashi's.

To add to the jargon if that's all a bit new to you:

TSH is a message from the pituitary broadly telling the thyroid to work harder if it isn't producing enough hormone, so the higher your TSH the more under-active (hypo) you are. Although the lab range stops at a bit over 4, a person with no thyroid problems would never have a TSH this high and in many countries you would be treated for an under-active thyroid if TSH is over 3. So a result of more than 10 is DIRE.

BUT just measuring TSH doesn't tell you if the message is getting through to the thyroid or being acted on. For that you need to measure your actual thyroid hormones. Your thyroid produces T4, which is inactive. Free T4 measures the amount of T4 available for your body to use. T4 then converts into T3, the active hormone needed in every cell of your body. Poor free T4 is never going to translate into adequate free T3; but some people (lke me) are "poor converters" so even with good levels of free T4 we don't have enough free T3 ; so it is important to measure free T3 if your free T4 is nice and high (a good 2/3 or more through the lab range) but you still don't feel "right" to see that your free T3 level is nice and high too.

If you have Hashi's, your antibodies fluctuate up and down as they see fit - there's nothing you can do about it and you can't "cure" Hashi's - but it's not anything to worry about and is incredible common. So if you test antibodies and they're normal, you could still have Hashi's but have caught them in a "down" part of their cycle; so it makes sense to re-test from time to time and see if they change. If they are over-range, you know you have Hashis and don't need to re-test. If you do and they're lower, it doesn't mean you're "getting better" - they're just lower and will go back up again when they want to. Think of it as a big tide going in and out - you can't stop the tide but different measurements will show different results. Some people with Hashi's find it helpful to go (strictly) gluten-free and/or lactose free; and some people with Hashi's have a "flare" from time to time, when their results go crazy and mimic an over-active thyroid [but you can't really switch from under-active to over-active] - so if this happens it's important NOT to change your meds or you will be horribly under-medicated when the flare stops; just stop taking them for a few days till you go back to normal.

I hope I'm not confusing you with all of this! It's worth having a good read of the hypo section of the main Thyroid UK website too x

Seatreeleaf profile image
Seatreeleaf in reply to fuchsia-pink

Thank you for responding again. Your posts have been tremendously helpful in educating and advising me. It’s like a little light in the darkness.I’ll make a request for my folate, B12, Vit D and thyroid antibodies to be tested.

tattybogle profile image
tattybogle in reply to Seatreeleaf

Hi Seatreeleaf. Yes it seems there is a definite association of quetiapine/ hypo but they don't seem very clear about exactly how it works as yet .see below .

Out of interests ...were you already taking the quetiapine at the time of these 2018 results ?

Do you know ....was your thyroid ever checked before you were out on quetiapine ?

( i mean .. is it possible you were already hypothyroid before you went on it, and the symptoms that led you to taking it were actually hypothyroid symptoms ?)

accp1.onlinelibrary.wiley.c.... ( Quetiapine-Induced Thyroid Dysfunction: A Systematic Review)

"Abstract

Thyroid abnormalities are documented consequences of quetiapine treatment. This may have clinical implications as changes in thyroid hormones may deteriorate a person's affective state. Yet less is known about the clinical factors and underlying mechanisms associated with thyroid hormones on quetiapine therapy. We therefore systematically reviewed the published literature of evidence of quetiapine-induced thyroid abnormalities. We searched MEDLINE, PsycINFO, Google Scholar, and EMBASE for articles in which individuals developed biochemically confirmed thyroid abnormalities (with or without clinical symptoms) while on quetiapine treatment. We included case reports, case series, observational, and experimental studies. We included 32 studies, 20 of which were observational and experimental studies. There were 10 case reports and 1 case series. All the research designs suggested an association between quetiapine and hypothyroidism. However, these findings were limited by the quality of the included studies and the general lack of either a clear temporal relationship or dose response. Quetiapine has been associated with thyroid abnormalities, mainly with hypothyroidism. Drug imputability in these abnormalities is not always clear, and the underlying pathophysiology may include immunological and nonimmunological mechanisms. Large prospective studies are required to clarify this association and to further inform the management of patients treated with quetiapine where hypothyroidism occurs".

Seatreeleaf profile image
Seatreeleaf in reply to tattybogle

Hi, thank you for replying.

I’ve been taking quetiapine since 2011. I didn’t have any blood tests prior to being on it.

I’ve had escalating symptoms, starting about 5ish years ago. I think around that time the quetiapine was changed from instant release to extended release, (I can’t find the date on my online patient record, as can’t access prior to 2018) I always thought perhaps that could of been causing me fatigue during the day.

I’ve gained a significant amount of weight, which is a side effect of the quetiapine too. The only positive of taking it was that I’d get a good sleep, but alas no longer and now I’ve got insomnia.

Whether my body’s become so accustomed to the quetiapine that it’s not as effective anymore or perhaps it’s to do with my thyroid?

I had always put my symptoms down to the quetiapine (weight gain, chronic tiredness, brain fog, memory problems) but as I’ve discovered it can cause so many symptoms that correlate to having a under active thyroid too.

It’s only been since I’ve noticed my hair getting thinner, that I thought perhaps it was something else. That led me to suspect it could be hypothyroidism. Then when I checked my old blood tests to discover my TSH being significantly out of the normal range, and getting advice here and on another forum it’s confirmed my suspicions.

Starting on Friday the doctor will be tapering me off quetiapine. Hopefully that’ll be a positive all around, for my mental and psychical health.

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