Blood test results..perfect but still feel drea... - Thyroid UK

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Blood test results..perfect but still feel dreadful.

Hurtlocker profile image
20 Replies

Been taking levo for three years. Firstly for hyper then RAI last Jan 2019...then ok without any meds until April 2919..then hypo ..tried different brands.different doses but still results o.k.but same syptoms from day 1..vision probs.fuzziness .weakness.wobbly legs.aches.and palpatations..am taking Wockhardt 75mic now.syptoms same.cant sleep for palpatations...I am convinced it is levo itself causing probs as syptoms subside late evening but as soon as I take levo next a.m.probs start again in about an hour..downhill all the way!!Endo confused but has done loads of tests.brain scan and heart monitoring coming up!!latest readings for bloods are

TSH 0.66...

FREE THYROXINE.*23.3...

FREE T3...4.3...

The rest of the extensive bloods are a mystery to me so seeing doctor next week...anybody got any comments..advice...where do I go from here..Endo is willing to prescribe liquid thyroxine after all tests are exhausted scans etc...think I have convinced him it is levo as I dont take any other drugs..your views would be appreciated..

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20 Replies
SeasideSusie profile image
SeasideSusieRemembering

Hurtlocker

It's impossible to comment on your test results without the reference ranges. As these vary from lab to lab can you please add the ranges so that we can interpret the results.

Also, please tell us when you took your last dose of Levo before the blood draw for that test, because that can have an effect on the result.

Hurtlocker profile image
Hurtlocker in reply toSeasideSusie

Where do I find the ranges..!!!they were taken local hospital....had taken meds as I wasnt expectings boods to be taken again...prev bloods on Mon 20th were TSH 0.99

FREE T4..20.3 and

Free T3 ..4.4 but meds taken night before bloods taken on 20th am.

Thanks for replying...just need to know how to find ranges...

SeasideSusie profile image
SeasideSusieRemembering in reply toHurtlocker

If you have a print out of your results (always advised) thenthey will be by the side of the result, sometimes in brackets.

If you have your results in a letter from the hospital they don't always put the reference ranges in which case you'd have to ring up and ask them, either the endo's secretary or the phlebotomy department.

If you took your Levo before the blood test then your result will show a false high FT4. The last dose of Levo should be 24 hours before the blood draw to give a measure of the normal circulating hormone.

Hurtlocker profile image
Hurtlocker in reply toSeasideSusie

Thank you so much for your help..will ring Endo sec tomorrow and get details

..luckily the readings taken on the 20th were done with meds taken on 19th .day before so we should have a pretty accurate view of whats going on..why do they make life difficult and not give parameters for readings!!will let you know when I have details...thanks again..

Ari3 profile image
Ari3 in reply toSeasideSusie

Hello I wanted to ask you a question for example I take my last dose of ndt at 14;00 pm when should I drawn the blood? I medicate twice a day at 6:30 and 14:00pm . Many people say u have to leave at least 13-15 hours !?

cazmania7 profile image
cazmania7 in reply toAri3

Ari it might be a good idea to post that as a new question. Or if you type “dose timing” into the search you might find the info on an older thread. I’m not sure of the answer when it comes to NDT

SeasideSusie profile image
SeasideSusieRemembering in reply toAri3

Ari3

Many people say u have to leave at least 13-15 hours !?

I doubt that those people are on this forum. You will always see 8-12 hours between last dose of NDT and blood draw mentioned on this forum.

for example I take my last dose of ndt at 14;00 pm when should I drawn the blood? I medicate twice a day at 6:30 and 14:00pm .

I doubt whether you'd be able to get a blood draw between 10pm and 2am so you'd have to change the time of your last dose the day before, instead of taking it at 2pm, work out whatever is 8-12 hours before your appointment time the next day. If you could get a blood draw at, say, 8am, then you'd take your last dose between 8pm and midnight the night before.

Ari3 profile image
Ari3 in reply toSeasideSusie

Thank you very much !!!!it really clearned my mind . Those 13-15 hrs even some people say 20 hrs which is crazy are on thyroid groups on Facebook and mainly people from America .but thanks as I don’t see sense of leaving 13-15 hrs from last dose .i will take my last dose at 20:00 and do bloods at 8am .

pennyannie profile image
pennyannie

Hey there Hurtlocker

The ranges are generally on the same line as the results eg:-- T4 12-22 ? T3 3.1-6.8 ?

So on the 20th you took the 75 mcg Levo at night, before bed and the blood was drawn the following morning showing :-

TSH of 0.99

T4 of 20.30

T3 of 4.40

OK so most people feel well when the T3 /T4 conversion ratio is around 3.5 to 4.5 :-

Your conversion is coming in at around 4.6 ( divide the T3 into the T4 number ) :

T4 is a pro hormone and your body needs to be able to convert it into the active hormone T3 which is what the body runs on and I read most people need about 50 T3 daily to function.

In order to increase your T3 the first step is to increase your T4 - but depending on the ranges, that we haven't got, you levels might already show you at the top or over range for T4 in which case the doctor may not increase your T4.

Your conversion can also be compromised if your ferritin, folate, B12 and vitamin D are not optimal so these core strength vitamins and minerals need to be tested.

Since you have had RAI it is known that this treatment can trash your vitamins and minerals.

This can also happen, after RAI to your immune system.

It is known that RAI induced hypothyroidism is more difficult to treat.

It is imperative that you are not monitored on a TSH as your feedback loop is now broken and that T3 and T4 blood tests must always be measured, and dose adjusted where necessary to bring both these vital hormones into balance in the upper quadrants of their relative ranges.

There are some people who do not tolerate T4 and need to be on only T3 medication.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100T4 + 10 T3. Some people can get by on T4 alone, some people, at some point in time, simply stop converting the T4 into T3 and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient.

As you will see even with excellent conversion you have lost your own thyroid production of T3 and this little bit you have lost equates to about 20% of your overall well being. There is therefore an argument that people after RAI need T3 medication, but currently there are restrictions in prescribing this thyroid hormone.

I am with Graves Disease and had RAI in 2005 and became very unwell about 8 years later.

I came on this website in desperation and read and reread everything I could and I have now managed to turn things around for myself, thanks to the amazing help I received.

You can do this as well but first, please do get a full thyroid hormone blood test to include the vitamins and minerals as detailed. Once with the results start a new post to include the ranges and people better able than myself will advise of any next steps you need to do. If your doctor will not help you in this matter there are private companies, as detailed on the Thyroid uk website, who will even come to your house to take the blood draw for you.

Hurtlocker profile image
Hurtlocker in reply topennyannie

Thank you so much for replying. What you say makes lots if sense..I mentioned T3 to Endo and he said I would be better off having a strong expresso!!!which I know is nonsense..what I didnt tell him us that my lovely GP will give me a private prescription for it to give me some quality if life..he has another patient standing in the same shoes as me!!! So I am going for a brain scan and heart investigation to prove to the Endo I am totally healthy abd nit crackers!!!and will try liquid thyroxine but Think I will have prescrption from GP for T3!!!I am taking 1000mg of vitD and 1000 mg of B12 and have just started taking multi vit calcium/boron/magnesium/zinc and vit D complex...had a full panel of bloods taken but have not got ranges..will get it tomorrow and let you know...some look low i.e calcium is only 2.2!!!lets see. Will let you have details after I have spoken to health centre..thanks again..regards June

SlowDragon profile image
SlowDragonAdministrator in reply toHurtlocker

Low calcium is usually linked to low vitamin D

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if FT3 is low (as yours is)

Ask GP to test vitamin levels

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, best not mentioned to GP or phlebotomist)

is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or vitamins

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

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...

Getting all 4 vitamin levels optimal is essential BEFORE considering adding any T3

Come back with new post once you get vitamin results

cazmania7 profile image
cazmania7 in reply topennyannie

Hope you are doing ok pennyannie 😀

pennyannie profile image
pennyannie in reply tocazmania7

Hey there Caz - blob -

Funnily enough I thought to contact you yesterday !!

Great minds ?

I'm ok thank you, reading your post I and didn't realise you had started T3 -

I couldn't add anything to your answers, so went to bed thinking I'd send you a PM today.

cazmania7 profile image
cazmania7 in reply topennyannie

Blob!! Still blobbing around haha!

Yes I tried NDT but I wasn’t keen so started Tiromel. Early days and need to do some tweaking. I was hoping for some signs that it is working but I still feel pretty awful. Like I say though, early days and my T4 has dropped so I’ll increase that a bit, but at least I have hope now. A focus. I was in a bad state mentally until I decided to do this.

I always see your replies to people and remember yours to me. They were really kind and helpful.

pennyannie profile image
pennyannie in reply tocazmania7

Yes, names tend to ring a bell, but I can't remember much else, thank you for your kind words.

My cognitive functions were badly compromised too and I'm just so pleased my brain is back, in gear and engaged.

Hypothyroidism is such an insidious health issue and I just feel so indebted to this amazing website that I hope I'm able to help others who are where I was a few years ago.

Good luck with the T3 - xx

cazmania7 profile image
cazmania7 in reply topennyannie

Thanks pennyannie ❤️

Ari3 profile image
Ari3

You are not converting from t4 to t3 and u need t3 to add . Have u checked ur rt3? I think it should be high

Hurtlocker profile image
Hurtlocker in reply toAri3

Hi Ari thank you for replying...T3 suppliments was one I discussed with Endo last week..he said I would be better having a double shot expresso!what rubbish..he also thought my syptoms were in my head!!!again rubbish...I am very strong minded and not feeble abd I KNOW I need T3 to feel better...J just need to get some as he was not about to prescribe it !!! When I find it will let you know what effect us....regards...

Ari3 profile image
Ari3 in reply toHurtlocker

Stick to your guts they make us more ill and I don’t trust doctors even 1%

pennyannie profile image
pennyannie in reply toHurtlocker

Hey there again,

I'd just like to add that T3 is not a magic bullet - it is a powerful hormone, said to be about 4 times the power of Levothyroxine -

In order to be well when taking T3 your vitamins and minerals, your core strength, need to be solid and strong with optimum ferritin, folate, B12 and vitamin D.

I needed to spend over a year building up my core strength before I even considered trialling any other medication options.

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