Confused!!: Hi everyone Been a while since I... - Thyroid UK

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Confused!!

Bronners36 profile image
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Hi everyone

Been a while since I posted and I've been pretty unwell. Hope for some advice. I had my bloods done with gp 5 weeks ago and only tested my tsh which was 2.3

I just did a test with medchecks and im really confused at wats going on. I take 100mg levo daily as im diagnosed as underactive have been for nearly 7 years.

Your advice is very welcome and thank you. See attached.

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Bronners36
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Bronners36 profile image
Bronners36

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SeasideSusie profile image
SeasideSusieRemembering

Bronners36

Your Vit D level is good. Are you taking a maintenance dose of D3?

As for your thyroid results your raised TPO antibodies suggest autoimmune thyroid disease known to patients as Hashimoto's. Did you know this?

Can you tell us when you took your last dose of Levo before the Medichecks test? It should be 24 hours before the blood draw.

Did you take both GP and Medichecks tests early morning, no later than 9am?

Did you do both tests before eating or drinking anything but water?

Do you take Biotin or a B Complex? Did you leave it off for 7 days before the test?

Bronners36 profile image
Bronners36 in reply to SeasideSusie

Hi.

Yes I supplement with vid d. Yes to all the above I did all of that.

Im gutted hashimotos but can't understand why the jump in numbers its very confusing 😕 also another pic...

SeasideSusie profile image
SeasideSusieRemembering in reply to Bronners36

Bronners

CRP is excellent, nice and low.

Hashi's is where the immune system attacks the thyroid and gradually destroys it. This causes fluctuations in test results and symptoms.

What is your maintenance dose of D3?

Do you take D3's important cofactors - magnesium and Vit K2-mk7?

Bronners36 profile image
Bronners36 in reply to SeasideSusie

Thank you. Well that makes sense how frustrating. I currently take:

Lithium orotate

Vid b12 5000

Vit d 8000iu

Magnesium glycinate 400mg

Cod liver oil

About to start liquorice root

Im gluten free and yes I eat dairy im careful with food as I have high oxalates aswell so try stay medium with those foods or the dumping is insane but its hard to find a balance with that and this dam condition.

Thanks for your reply

SeasideSusie profile image
SeasideSusieRemembering in reply to Bronners36

Bronners

Vid b12 5000

That's a very high dose of B12. What's your B12 level?

When taking B12, we also need a B Complex to balance all the B vitamins, do you take one?

If your B12 level is over 550pg/ml or ng/L then you'd not need a separate B12, a good quality, bioavailable B Complex should contain enough B12, recommended here are Thorne Basic B or Igennus Super B.

Vit d 8000iu

Presumably that dose was to raise a low level? You now need to find your maintenance dose, you don't really want to take your Vit D level over 150nmol/L. Maintenance dose is found by trial and error, it may be 2000iu daily, maybe more or less, maybe less in summer than winter. It's recommended to retest once or twice a year to keep within the recommended range.

Magnesium glycinate 400mg

Your magnesium is fine.

Are you taking your magnesium and D3 4 hours away from your thyroid meds? You also need Vit K2-MK7 as another important cofactor. D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. Like D3, K2-MK7 is fat soluble so needs to be taken with dietary fat.

Cod liver oil

Is there a particular reason to take this? There is very little Vit D in cod liver oil but there is a lot of Vit A, and like D3 Vit A is fat soluble and excess is not excreted, it is stored in the body and can build up and lead to toxicity.

About to start liquorice root

Please be care with this, liquorice can lead to high blood pressure and low potassium so look for deglycyrrhizinated liquorice (DGL).

SlowDragon profile image
SlowDragonAdministrator in reply to Bronners36

Lithium is well known for affecting thyroid

thyroid.org/patient-thyroid...

Bronners36 profile image
Bronners36

Thank you. That also makes sense. I have an appointment with endocrinology in March I guess I'll try ask about this but ideally I just want to try help things as natural as possible just hate tablets!! Why is it difficult to obtain on the NHS Just so fed up being completely exhausted one minute to not being able to sit still with insomnia and night sweats!!

Royally done in.

pennyannie profile image
pennyannie in reply to Bronners36

Hello Bronners :

Ok the acceptable conversion ratio when on Levothyroxine only is 1 / 3.50 - 4.50 T3/T4 with most people preferring to be at 4 or under:

So, if we divide your T3 into your T4 we get around 5.50 which shows poor conversion.

T4 is a storage hormone that needs to be converted by your body into T3 the active hormone that the body runs on and is said to be about 4 times more powerful with the average person using about 50 T3 daily, just to function.

Your conversion of the T4 into T3 can be compromised by low levels of ferritin, folate, B12 and vitamin D and these maybe in the NHS ranges but high enough for optimal conversion of the Levothyroxine.

Conversion can also be compromised by any physiologic stress ( emotional or physical ) depression, ageing, dieting, inflammation, and other medications you maybe taking.

Since you are on Lithium I suggest you talk to your specialist regarding the implications and ask to be considered for an alternative thyroid hormone replacement.

Ideally optimum results when on Levothyroxine only usually show both T3 and T4 in the ranges and with both vital hormones balanced and towards the top quadrant.

Bronners36 profile image
Bronners36

Thank u. Ill read it and I will get wat I need i have no idea how but I will!! Yes I agree with u. Im angry to they just don't listen wen ur suffering its very very frustrating 😤

Jan_Noack profile image
Jan_Noack

If I had those results, to me it means you are taking slightly too much T4..which causes a high fT4and lowish TSH. I'd be stopping all levothyroxine meds for 2 days then be taking a reduced amt of like 75mcg for 2 weeks, then start on a final dose of around 87.5mcg to 90mcg a day. This should get your TSH up to around 1.1 (+-0.2) ideal for me anyway. It should also get your fT4 to around 18 to 19, again my ideal. My fT3 optimal is around 4.6 to 4.95..so yours is around there. It can be increased with more exercise , even gentle swimming or walking..even only 10 minutes.

So basically, with the results, I'd be a tad hyper and feeling fatigued, wired and anxious as you feel.

If you start on licorice, then you must add potassium..ie switch from normal salt NaCl to LITE salt KCl. People get in trouble (fatal) with licorice due to not taking extra potassium. I'm not sure you need licorice as your CRP is ideal. You could ask for a ESR?

Edit- lookingat reply by tattybogle below, you have been hypo on levo of 50mcg..which is obviously too low, and 100 is too high. I'd be the same..I need between 87.5 and 90mcg..which from your results seems to me to be about the same as me. My TSH can yoyo'ed from 110 to 0.03 back in 201 ..But I blamed the inflammation. Once I started on steroids(predniisone for PMR which I cam down wth after this) my levels stabilised. Your levels on 50mch changing after a few weeks is as expected if you stay on 50mcg longer :)

Bronners36 profile image
Bronners36 in reply to Jan_Noack

Thanks for the advice and yes I shall try reduce slightly. Liquorice root will be added then after that around 6 days I introduce potassium so I am aware I need it in conjunction thank you. I just want this stable now its totally exhausting 😴

Lithium was added as it was a game changer for anxiety a week on it and my chronic anxiety went but I still get it now and again but not so bad. Gelps with sleep aswell.

I do light walking but not much else my body just bloody hurts!!

Is there any diet I can follow that helps with this?

tattybogle profile image
tattybogle

Hi , i've just looked back at your previous posts and results, to see if it helps understand why the TSH has changed so much in the last 5 weeks.

It could just be hashimoto's fluctuations, but there's other things going on too like Lithium

and I see you 've had a big alteration in dose over last year or so, and went into A&E a couple of times with overmedicated symptoms resulting in dose reduction.

from your previous post ....

"I have been hypo for 6 years so I'm very aware of the struggles this gland can cause and more than ever in the last year.

My last blood test about *2 weeks ago was: *This was may 2020 on 50 mcg levo

Tsh 9

T4 16

T3 4.2

But only a few weeks later early June 2020 , still on 50mcg , you had ;

TSH 3.57 miu/l range 0.27-4.3

FT4 17.1 pmol range 12-22

FT3 5.1pmol range 3.1-6.8

"I've tried different brands of levo and most of them have shocking side effects. I get nerve pain muscle pain insomnia itchy skin hair falls out alot. Weight goes up then down drastically. Overactive bladder with some brands. Mostly though sweating has become a huge issue.

I use to be on 125 one day 100 the next so on.

"The coil is a hormone obviously and I had mine out last july and that was it. I went hyper then became very ill, huge weight loss. Anxiety through the roof. Muscle pain mild paralysis and 3 trips to a&e. Nerve pain from waist down all areas absolutely horrendous.

" I'm taking 50mg atm. Was on 100 then went down to 75 as was over meditated and became hyper. Still experience alot of Weight loss and shaking so went to 50mg

After advice on last post ....8 months ago.

"I will maybe try 75mg obe day 50mg another day? Ease myself up.

And now you're back on 100mcg,

5 weeks ago

TSH 2.3

Now

TSH 0.36

fT4 25.7 [12-22]

fT3 4.63 [3.1-6.8]

latest test shows fT4 is now over range,

well, i thought that might get me somewhere in terms of offering advice , but i now realise i'm too tired to think anything sensible , but hopefully , putting your results all together like this might make it easier for someone else to notice anything interesting in the morning :)

Nite nite for now

Bronners36 profile image
Bronners36

Thank u...I just wonder if its reasonable to blame hashimotos and nothing else 🤔

tattybogle profile image
tattybogle in reply to Bronners36

Just looking again at results now i'm awake...., do you have any blood test results from dose between 50mcg 8 months ago and results on 100 mcg now ? did you take 75 for a while? did you get a test on that dose ?

Bronners36 profile image
Bronners36 in reply to tattybogle

I did yes I was on 75mg for a while and my tsh was 3.2. Then I did 100mg for a while and it went to 2.3 then put of nowhere it dropped. Didnt do anything different apart from take pregabalin?

tattybogle profile image
tattybogle in reply to Bronners36

How many weeks on 100 before test result TSH 2.3 ? . (and was there an fT4 /3 by any chance?)

If only 6 weeks ,is it possible that your TSH is just a bit slow to get where it's going ? and hadn't finished moving when you tested and got 2.3 , so it's still moved more to 0.36 after wards.

I'm torn between suggesting:

a) you leave dose alone for another month or so to test again , and see if fT4 is still over range, and see if TSH falls further.

or, given your previous A&E adventures when on 112.5mcg

b) you take the over range fT4 and lowered TSH as a signal that 100 is very slightly too much for you, and reduce dose to 87.5mcg, and see what happens on that.

Bronners36 profile image
Bronners36 in reply to tattybogle

Thank you. I have a gp appointment to check tsh on 17th so might stay at 100 and see. No other readings from last gp visit only tsh at 2.3 so I agree may have been slow but ill stick at it till 17th.

Thanks again. I would just love this extremely cold feeling then heat intolerance to do one. Its so bothersome

tattybogle profile image
tattybogle in reply to Bronners36

That sounds like a good plan , it's not too much longer to wait , and you'll get another result on100 to compare. It's such a nuisance that they only do the TSH...

I could understand it if someone is ok on a dose, and result stay stable , fine , just do a TSH to save money, but when they've got a case like yours has been recently, it's daft to try and figure out what's going on with only 1/3rd of the available information.

I've just enjoyed a good few months of 'normal temperature' feeling,,, i'd forgotten what it felt like... , but, sod's law , just when i think i've cracked it and my dose is fine at 112.5 mcg , i started feeling 'wrong' again for no apparent reason. This blumming thyroid game is not as easy as "dose in = result out", it's like knitting fog sometimes .

Bronners36 profile image
Bronners36 in reply to tattybogle

I completely agree I've even battling for so long. I was fine for 6 years then heavy stress and it just went wild. I've struggled since then. Even gaining weight is an issue im just so thin I look terrible my skin is awful like one extra thing pops up every other day. I just laugh now otherwise I would have a meltdown.

Wish the doctors would do more to support us. This thyroid shit is very individual I dont feel like we all have the same set of stuff going on but with time they could work with us but instead your forced to look elsewhere. I get more info here than I did from an endocrinologist.

tattybogle profile image
tattybogle in reply to Bronners36

i agree , it's so frustrating to keep reading , "not enough evidence of so and so" when you're sat there thinking , "well, for a very small amount of extra money, you could investigate ME a bit more thoroughly and then we might learn something about MY thyroid workings"No ones even felt my thyroid , let alone done a scan in nearly 20 yrs, How do they expect to learn anything. I realise they don' know much about the implications of antibodies, and the autoimmune aspect , but they won't do while they only check them once, and never bother again.

There is so much more information they could easily get and correlate , and since we all go in for annual bloods anyway, it wouldn't cost that much more to get fT4/3/antibodies in the grand scheme of things , and ultimately understanding this better would probably save loads of money on unnecessary other tests.

There's thousands of complete results and histories on this forum, they could read it ;) and i wouldn't cost them a penny.

Bronners36 profile image
Bronners36 in reply to tattybogle

I feel this to be true with any condition aswell. Treat symptoms not root cause.

Thank god for forums like this. I feel very blessed.

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