Help with assessing the relevance of my blood test results please

[Smash49]

I have been diagnosed as hypothyroid for 12 years. I'm 51 and have been feeling unwell for all that time with fatigue, depression, and premenstrual dysphoric disorder being the most major symptoms to the point where I had a complete breakdown a couple of years ago and have only been able to work part time (with a struggle) ever since. I also am unable to keep my weight at a healthy level and am currently 3 stones overweight. I managed to obtain a referral to a gynaecologist when I had my breakdown after trying to get one from my GP for 10 years and have successfully got my premenstrual disorder treated by being put into an induced menopause with Zoladex implants. Since coming off them in January, fingers crossed, I have remained in menopause. I have decided that I must try to sort my thyroid treatment problems and so I have had a private blood test done with blue horizon and I have attached the results to this post. The doctor report which came with it said the results are normal except for cortisol but that using steroid meds would affect that. I did not realise but I use a mometasone furoate nasal spray from GP for sinus problems and I did not know it was a steroid so I assume that is why my cortisol level is high. I am going to stop taking it now I am aware it is a steroid. It was a morning, fasting blood test and I only took my thyroid meds afterwards. I always take my dose of 100mcg levo about 3am as I wake a lot in the night and it means I am not having any other meds or drink/food near it. I have always been on 125mcg until about 3 months ago when my 2 yearly blood test showed my tsh was raised. GP wanted to reduce further but I pursuaded her not to for now. I do also get irregular heart beats for which I am waiting for a 72hour heart monitor appointment. Don't know if that is down to my thyroid. I have also tested positive as heterozygous for the DIO2 gene fault. I don't take any vit/mineral supplements. I would be grateful for any advice on how I should move forward based on these results. If anyone thinks I would benefit from vit/mineral supplementation could you also advise what brand is best. I thank you in advance for taking the time to read my extremely long post and for any advice🙏

[Hay2016]

Hi. Your t3 is quite low in range. I found I had awful palpitations when it was around your level. Unfortunately you may have to try fight for t3 to be added to your t4, especially in light of dio2 result. You could ask for referral to endo to discuss a trial or speak to cardiologist, if you’re lucky they may be clued in to t3 and heart.

[Smash49 in reply to Hay2016]

Thanks. I think I am going to have to go down that route. I know I am going to struggle with that having read many previous people's struggles. Thanks for taking the time to respond I appreciate it 😊

[SlowDragon Administrator]

I have always been on 125mcg until about 3 months ago when my 2 yearly blood test showed my tsh was raised. GP wanted to reduce further but I pursuaded her not to for now.

This doesn’t make sense .....if TSH was raised you needed dose increase, not decrease. Perhaps you meant TSH was too low?

Your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s ...

did you know cause of your hypothyroidism was autoimmune thyroid disease also called Hashimoto’s?

Sinus problem suggests possible lactose intolerance....very common with Hashimoto’s

Have you ever tried dairy free or lactose free diet?

You would also need lactose free levothyroxine

Which brand of levothyroxine are you currently taking?

Results show EXTREMELY poor conversion of Ft4 to Ft3.

Ft3 is far too low

Poor conversion is very common with Hashimoto’s

You ideally need addition of small dose of T3 alongside levothyroxine

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

[Smash49 in reply to SlowDragon]

Thanks Slowdragon. Yes my error I did mean low, sorry. I suspected Hashimotos but I have never been told by a GP. I will definitely follow up regarding the list of endos that's great thanks.

I am presently on Levo produced by Mercury pharma it says on the box but it is not a specific brand. It can vary each time I get my prescription. I shall try omitting dairy from my diet and asking my chemist for lactose free Levo in future. Good tip. Lots to follow up on there thanks for your help👍

[SlowDragon Administrator in reply to Smash49]

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine.

However often, lactose intolerant people find Teva amazingly good.....so it’s worth trying

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

Aristo is fairly new here in uk ...not had much feedback yet

List of different brands and if lactose free

healthunlocked.com/thyroidu...

Teva poll - shows it’s a Marmite brand...

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[Smash49 in reply to SlowDragon]

Thank you Slowdragon😊

[SlowDragon Administrator]

Lactose free

Lactose intolerance is very common with Hashimoto's

Links

thyroidpharmacist.com/artic...

hypothyroidmom.com/the-secr...

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.

[SlowDragon Administrator]

Vitamin levels

Ferritin ok

Vitamin D.....are you currently taking any vitamin D? Might be better a touch higher around 100nmol

B12 and folate may be rather too low

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If 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...

[Smash49 in reply to SlowDragon]

Thank you I will look to start supplementing that

[SlowDragon Administrator]

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip,)

Is this how you did this test?

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

If you took levothyroxine at 3am and tested at 8-9am the Ft4 is falsely high

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Shows your Ft4 is 97% through range

Ft3 only 17% through range

Looking for both to be roughly 60% through range

Certainly for Ft3 to be over 50% through range

[Smash49 in reply to SlowDragon]

I delayed the 3am dose until after I had done the test at 8am so it was 29 hours approx that I had the previous dose before the blood test. Sorry if I hadn't made myself clear

[SlowDragon Administrator in reply to Smash49]

So Ft4 is pretty high. You probably need slightly less Levothyroxine and addition of T3

But you might be astonished at difference Changing to lactose free diet and Lactose free levothyroxine makes

Plus ween of steroid spray

Roughly where in the uk are you ...re seeing a recommended thyroid specialist endocrinologist

They might try you on lactose free liquid levothyroxine as first option if lactose free levothyroxine tablets don’t give significant improvements

[Smash49 in reply to SlowDragon]

I am near Liverpool

[SlowDragon Administrator in reply to Smash49]

Sorry no knowledge of anyone “up north”!

[SlowDragon Administrator in reply to Smash49]

Email Dionne at Thyroid UZ for list ...NHS and private endocrinologists who will prescribe T3

[e-mail]

[Smash49]

Thanks will do 😊

[SilverAvocado]

Hi Smash49 I'm glad you made a post in the forum

The first thing that jumps out at me from your thyroid panel results is that you are an absolutely clear cut case of very poor conversion.

You're FreeT4 results is high in range. This tells us how much available T4 hormone is in your blood. This is the form of thyroid hormone contained in Levothyroxine, so as we increase our Levo dose this increases. Some people do need it all the way at the top or even slightly over to get well, so yours is not necessarily too high.

This is a storage form of thyroid hormone, so your body has to convert it into T3 before it can be used. It is T3 that is needless by every cell and tissue in the body to function properly.

But then we come to the FreeT3 result, this is scraping the bottom of the range. Most people will need this well over halfway up the range to feel well, usually in the top third, and yours is right at the bottom.

The fact that your body has got plenty of T4, but that your T3 is very low tells us that your body is poor at converting T4 into T3. This is common when we're ill, and lots of thyroid patients have this problem. Because T3 is the active hormone that actually helps us feel well, this low FreeT3 explains why you still have symptoms. In order to properly treat your thyroid problem you need to raise that FreeT3 level until your symptoms start to resolve.

The simplest option is to add some T3 to your dose (reducing Levo by a little at the same time). You may only need a small amount. If you do end up self medicating it can be good to keep up with your Levo prescription and just supplement with a little T3 of your own.

I can comment a little on some of the other results. In terms of antibodies, you've got high and out of range results for both thyroid antibodies. This indicates that you have Hashimoto's, which is an auto-immune thyroid condition. The vast majority of people who are hypothyroid do have Hashimoto's, unless like me they've had a thyroidectomy or something like that. Doctors can be very reticent about telling people what they have, becsuse as far as they're concerned it doesn't matter. But for patients antibodies can sometimes have symptoms of their own, and its ways useful to know you have an auto-immune disease because things like gluten or dairy can exacerbate them.

Moving on to cortisol, I also had a high blood test cortisol result like this. But when I got the 24hr saliva cortisol test I found out I actually had low cortisol, with one point in the day where it was high. Their cortisol test is more just to test of you've got an actual adrenal gland condition, which is not especially common for thyroid patients to have. It's much more likely that your adrenals are overworked and not doing as well as they should. That is a whole rabbit hole you can go down, as the test is not done on the NHS. And unlike Thyroid treatment where there are a few basic principles you can follow to dose your hormones, treating adrenal fatigue is much more fuzzy and complex.

In my opinion it is something to work on once you've got some spare time and headspace to dedicate to it. For me personally my adrenals improved loads just by improving my thyroid situation.

In terms of vitamins, I agree with others that yours look quite good, but they are a little shy of optimal. It's worth just getting a few supplements to top yourself up a little. Being hypothyroid trashes our vitamin levels, so it's common to be a little low.

I hope to see you at future meetings, and hopefully we can talk about these things in person some day

[Smash49 in reply to SilverAvocado]

Hi. Thanks so much for explaining all that. It does make sense with the way I feel. I have now got the list of endos who may prescribe T3 and so I have made a GP appointment to discuss things and try to get a referral. In the meantime I am going to try going lactose free and get some supplements as recommended and see if that helps to improve my symptoms. I'm so glad I posted. I've been procrastinating about doing it for ages but as I'm sure you know all too well you reach a point where you feel things are hopeless and that you kind of give up. I've now got a bit more hope that I can change things and part of that is thanks to talking with all you lovely people in the Liverpool group so thanks so much 😊

[SilverAvocado in reply to Smash49]

Great to hear that you're feeling a bit more hope Its amazing how much great advice you can get on the forum. And also amazing how little of it doctors know and help us with.

Good luck with your doctor's appointment, I hope you get something useful out of it! But it's great to be in the position of having some other options in your back pocket if they don't want to help you.