Test Results Help - Hoping to feel better!

[SleepingDisco]

I'm hoping you can help me interpret my latest blood test results please. I've been feeling really lethargic and gaining weight recently, despite trying to exercise more and eat less - my stomach is bloated. I eat a healthy vegetarian diet and have been diagnosed as under-active for 3 years now.. I've always been fit and a healthy weight.

I saw a private endo (for the first time) in December and had bloods tested. She suggested I may benefit from a small amount of T3 and so I'm now waiting on my NHS referral so I can hopefully get this started. I'm hoping this might help with my lethargy, mood, brain fog, weight, metabolism and hopefully tinnitus too?! Or maybe I'm pinning too much hope on this?!

My results seem to be a bit varied lately. I had GP NHS tests done 2 weeks ago (but they didn't test T3, despite it being on the blood form) so I did an MMM test this week - but the T4 varies hugely with the NHS one taken 3 weeks apart? I did everything the same (time - 8am, fasting, no levo for 24 hrs prior) the only thing different was 6/7 days off Thorne Basic B prior to NHS test and 4/5 for the MMM test.

I take the following supplements daily: Thorne Basic B, Vit C, Vit D, Magnesium, Ferrous Fumarate 210mg, Probiotic (Feel).

I currently take 125mcg of Levothyroxine but my GP has asked me to reduce this to 100mcg based on the NHS bloods on 1st April, despite not having the FT3 reading available. I consistently take this at the same time, early each morning, on an empty stomach, and all other supplements are taken in the evening.

I seem to feel better when my TSH is suppressed but my GP isn't happy with this. I haven't agreed to the dose drop yet as I wanted to ask for advice on here first..

My NHS results (on 1st April) were:

Vitamin D - 98nmol (50-150)

Serum vitamin B12 - 594 ng (120-900)

Serum folate >20 ng/ml (2.5-9,999) (does this mean I'm in range and okay?)

Serum ferritin 80 ng/ml (15-300)

TSH - 0.05 miu (0.3-5)

Serum T4 - 12.3 pmol/L (7.9-16)

My MMM results (on 16th April) were:

TSH - 0.03 (normal range 0.27 - 4.2 mU/L)

FT4 - 22.9 (normal range 12 - 22 pmol/L)

FT3 - 5.2 (normal range 3.1 - 6.8 pmol/L)

My December endo test results were:

TSH: 1.16

T4: 15.8

T3: 4.09

TPO: 116

In September 24, my FT3 was 4 (3.8 - 6.0) and FT4 was 14.2 (7.9 - 16.0). TSH was 0.05 (0.3-5.0).

I feel like I'm at a bit of a crossroads with my thyroid and it's getting me down a bit now. When I saw the endo she said I was still early in my Thyroid journey, but to me it feels a bit relentless lately and Iike I'm on a see-saw with symptoms and medication etc!

Any help and advice you can offer would be amazing to have, thank you!

[Regenallotment Ambassador]

couple of things spring to mind… blew my mind when I heard it too. greygoose always explains it well.

To make use of your T4 and convert well to T3 you need calories.

In calorie deficit you are likely to put on weight.

By doing more exercise in calorie deficit you are likely to get more tired.

Try a short term normal calorie normal exercise experiment, you might find by eating more you lose weight.

Normal weightloss rules do not apply to hypos. We are literally designed to survive a famine. Moving veeery slowly but with amazing stores 🙈🤣

It looks like reducing was a good idea but maybe only 2-3 days not all 7? As we get to optimal the adjustments need to get smaller and smaller.

Oh and exercise, focus on strength and weights and light walking cycling etc avoid big cardio style workouts.

[SleepingDisco in reply to Regenallotment]

Thanks for taking the time to reply Regenallotment - really appreciate it. Oh my days, I’ve never thought about the calorie / exercise thing like that - basically sounds like we’re sloths!🙈🤣 will give it a try but fear I will just get heavier! I don’t really calorie restrict, just try and eat healthily and less than I want to eat as I’m always hungry at the moment and could eat loads more if I let myself..

I’ll up the weights I do too - thank you! x

[Regenallotment Ambassador in reply to SleepingDisco]

Yeah if I exercise more I get hungrier too good luck 🤞

[greygoose in reply to SleepingDisco]

Don't up the weights by too much. If you're using up your calories exercising, there won't be enough left for conversion. And if you're hungry, it's for a reason: you need more food! Starving yourself is never going to make you lose weight - well, maybe muscle weight, but it's highly unlikely that your weight-gain is down to extra fat, more likely to be water-retention, because that's what we hypos do: we retain water. And no diet or exercise regime is ever going to get rid of that. What you need is optimal thyroid hormone levels, and very few hypos ever attain that. Most are kept under-medicated.

[SlowDragon Administrator]

are you on gluten free diet and/or dairy free diet

Which brand of Levo are you taking

Do you always get same brand

[SleepingDisco in reply to SlowDragon]

Hi SlowDragon I’m not on a gluten free or dairy free diet. Do you think this would help?

I’m currently on accord for 100mcg and Wockhardt for 25mcg. I don’t always get given the same brand but the 100 accord is usually consistent. I’ve asked to not have Teva as I wasn’t sure this was great for me.

[SleepingDisco in reply to SlowDragon]

Do you think I should try eliminating gluten and / or dairy?

and also sticking to the same brand of Levo?

[SlowDragon Administrator in reply to SleepingDisco]

Only make one change at a time

Or you don’t know what’s helping

[greygoose]

You haven't given a range for the antibodies, but I'm pretty sure you must have Hashi's. So not surprising if your levels jump around a bit - or even a lot! And if your doctor is dosing by the TSH then you will be on a see-saw because it's the wrong way to dose and never works.

So, if I were you, I'd refuse to reduce my dose. But if you do start to feel a bit hyper-ish, just reduce it a little yourself, so that you can easily put it back up again if you start to feel hypo again. I'm afraid doctors don't understand Hashi's.

[SleepingDisco in reply to greygoose]

Thanks so much for taking the time to reply greygoose - really interesting to hear.

The range for the antibodies taken in December was 116 (0-24 IU/ml) so pretty high! This was the test done by the endo and she did mention I was having a Hashi’s flare up at the time!

I try and read and learn as much as possible to help better understand my thyroid but still find it a minefield to get my head round at times!

Do you think I might benefit from trying T3 combined? I’m hoping I’ll get my appointment soon and be able to discuss it further with the endo in more detail..

Why is my T4 so high though? Although it doubled in the 2 weeks between the NHS and MMM test, which I find strange..? Is there anything else I can do to optimise my levels do you think? I’ll tell my GP I want to stay on 125 mcg Levo for now - thank you for your advice with this. Have a lovely day x

[greygoose in reply to SleepingDisco]

The high antibodies mean that the cause of your hypothyroidism is Autoimmune: Hashi's.

Why is my T4 so high though?

OK, so you don't know how Hashi's works?

Well, your immune system is trying to destroy your thyroid, mistaking it for the enemy. So, from time to time, it launches an attack on the thyroid and kills off a few cells. The damaged cells leak their stock of thyroid hormone - T4 and/or T3 - into the blood, so levels rise suddenly. But this is only temporary. The levels will go down again by themselves as the excess hormone is used up/excreted.

I do wish people wouldn't call it a 'flare up', because that is confusing, and doesn't tell you what is going on. It's not a flare-up such as you would have with arthritis, or something, it's entirely different. I prefer to call it a Hashi's 'hyper' swing. Because that's what it is: your levels have swung high, but they will eventually swing back low again. So it's not at all strange that your FT4 level has doubled in two weeks. That's the nature of the beast.

Do you think I might benefit from trying T3 combined?

The evidence doesn't point to that at the moment. But, when your FT4 goes back down to where it was before the swing, you'd probably benefit from an increase in levo. You do seem to be converting quite well at the moment.

[SleepingDisco in reply to greygoose]

Thank you for explaining so well. I need to get my science hat on and try to make the hashi's info stick in my brain! I'd just about got my head around non hashi's hypo and feedback loops etc when Hashi's was thrown into the mix and I didn't fully understand the new 'rules'! Obviously GPs don't explain any of this so it's down to me to read up and learn as much as poss, which I'm trying to do on this brilliant forum and Thyroid UK website. But with 3 young children, a job and various other challenges etc my time is stretched. Your explanation is super helpful though so thank you again.

Is there a way of knowing how long each swing lasts? This must vary from person to person, but I just wondered if there is an average to and from range apx?

[greygoose in reply to SleepingDisco]

GPs don't explain because they don't understand it themselves.

No, there's no way of know how long a swing will last. It probably does vary from person to person but I've never heard of any research being done on this. Speaking from experience, they can last quite a long time - and sometimes you can have a euthyroid period on the way back down from 'hyper' to hypo which can last for a couple of years. This is when people start claiming that they've 'cured' their Hashi's and no-longer need thyroid hormone replacement. But sooner or later, they will go hypo again. There is no cure for Hashi's.

[SleepingDisco in reply to greygoose]

Ah okay, so I’m probably in a swing and have been for a while then, which is why my levels are up and down..

I wish there was a cure for us! I’d love to go back to pre diagnosis weight and energy levels! As I’m sure lots would too! Thanks again for all your fab knowledge and insight.

[greygoose in reply to SleepingDisco]

You're welcome.

[jgelliss in reply to greygoose]

GG Your So So Right. Many of us can testify that many Dr's Don't understand much about our Thyroid issues and dosing. It's a constant battle with Dr's. Thankfully we have this Great Forum.