Totally lost having had my blood test results - Thyroid UK

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Totally lost having had my blood test results

Notahappybunny1 profile image
35 Replies

HI all - I'm totally at a loss now, because I was so damned sure that all my symptoms, and I mean all of my symptoms of ill health pointed to HYPOthyroid.

And my blood test results now say that I am not. My GP had refused to test T3 as they don't prescribe T3 meds in my area. So I had it tested privately.

I had 1/2 my thyroid removed in 2004 due to an Adenoma, then the rest removed in 2018 after a cancer scare. I only started Levo after my 2018 surgery. I've been unwell since about 1995 when I first had a cyst drained from my thyroid of 95ml of fluid. After my 2nd surgery, I was prescribed 150mg of Levo, then had it dropped suddenly to 100mg, I was immediately very, very unwell and had to battle to get it back up to 125mg, where I've been ever since. (they want me to drop it further to every other day on 125mg, then 100mg on alternate days)

I had a diagnosis of CFS/ME in 2012, which I just don't accept. Maybe I have to now :-(

Does anyone in the 'know' have anything to suggest? I feel that I'm right back at square one again trying to find out why I;m so unwell, all the time.

cheers x

Inflammation

CRP HS 0.51 mg/L (Range: < 5)

Iron Status

Ferritin 28.7 ug/L (Range: 13 - 150)

Vitamins

Vitamin B12 - Active 54.500 pmol/L (Range: > 37.5)

Vitamin D 89.1 nmol/L

Deficient <30

Insufficient 30 - 50Consider reducing dose >175

(Range: 50 - 175)

Thyroid Hormones

TSH X 0.038 mIU/L (Range: 0.27 - 4.2)

Free T3 4.95 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 24.300 pmol/L (Range: 12 - 22)

Autoimmunity

Thyroglobulin Antibodies 11.300 kIU/L (Range: < 115)

Thyroid Peroxidase Antibodies 11.2 kIU/L (Range: < 34)

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Notahappybunny1
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35 Replies
Nanaedake profile image
Nanaedake

What other antibodies besides thyroid ones have been tested? What about liver and kidney function?

Notahappybunny1 profile image
Notahappybunny1 in reply toNanaedake

Im having more GP bloods done tomorrow. I think one of those is cortizol?

Nanaedake profile image
Nanaedake in reply toNotahappybunny1

Good, definitely worth pursuing. Its easy to get fixated on all symptoms being thyroid related but keep an open mind.

Jazzw profile image
Jazzw

Actually, your blood test results don’t rule anything out.

Considering your FT4 is overrange, your FT3 isn’t as high as it could be.

Did you take your levothyroxine on the day of your test? If you did, how many hours before the test did you take it?

Notahappybunny1 profile image
Notahappybunny1 in reply toJazzw

No, I did a fasting test. I always do.

Jazzw profile image
Jazzw in reply toNotahappybunny1

Ok, glad you knew about that. :) You’d be surprised how many don’t!

It could be your low iron that’s inhibiting the conversion of T4 to T3. (Ferritin is important to conversion). It doesn’t matter how low your TSH is or how high your FT4 is if you’re not getting enough T3, the active thyroid hormone. And it would appear that it might be at least part of the problem.

Unfortunately most doctors just see the low TSH and panic. :(

Jazzw profile image
Jazzw

Also, your ferritin level is woeful. It should be at least 70 (ignore the range—it’s weirdly inaccurate). So you probably need the full gamut of tests for anaemia to see if you need iron tablets.

Notahappybunny1 profile image
Notahappybunny1 in reply toJazzw

Ok thank you, I've been anaemic in the past.

SlowDragon profile image
SlowDragonAdministrator in reply toNotahappybunny1

Do you always get same brand of levothyroxine?

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)

Notahappybunny1 profile image
Notahappybunny1 in reply toSlowDragon

I'm on my third different Levo drug now, they keep changing it as costs go up and down!

SlowDragon profile image
SlowDragonAdministrator in reply toNotahappybunny1

Work out which brand suits you best and stick with that one

If necessary get brand specified on all prescriptions. You may need to try several different pharmacies to get brand you need

SlowDragon profile image
SlowDragonAdministrator

Essential to test vitamin D, folate and B12 as well as ferritin

Ferritin is far too low

B12 probably too low

Vitamin D ok

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common and tend to lower TSH and cause poor conversion of Ft4 to Ft3

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)

Ft4 is high...but Ft3 is low ...poor conversion

You may be better with slightly less Levo and addition of small doses of T3 alongside

But important to get all four vitamins tested and supplement to optimal FIRST

List of private testing options

thyroiduk.org/getting-a-dia...

Possibly cheapest option for getting all tested via DIY finger prick test

TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Notahappybunny1 profile image
Notahappybunny1 in reply toSlowDragon

We can't get any T3 meds in my area, which is why they've refused to test T3, the above test was private.

SlowDragon profile image
SlowDragonAdministrator in reply toNotahappybunny1

Getting vitamin levels optimal frequently improves conversion of Ft4 to Ft3

Suggest you read posts daily ....you will probably see more posts about vitamins than thyroid levels

Getting vitamin levels improved then retest FULL Thyroid and vitamins in 2-3 months

It is possible to get prescribed T3 ....important to find the right endocrinologist

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

tukadmin@thyroiduk.org

Website where you can see prescribing rates of liothyronine of different CCG areas in England

openprescribing.net/analyse...

JAmanda profile image
JAmanda in reply toSlowDragon

Interesting map! Everyone move to Kent!

DJR1 profile image
DJR1 in reply toJAmanda

Canterbury and Coastal CCG refuse T3 testing so don’t come to East Kent folks. However I do know there is a very sympathetic consultant at the Medway Maritime Hospital North Kent both for T3 and previously NDT. Perhaps that is the reason for the high prescribing rates.

SlowDragon profile image
SlowDragonAdministrator

Ferritin

Never supplement iron without doing full iron panel test for anaemia first

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

B12 is on low side .....

Active B12 anything under 70 is considered suspect

viapath.co.uk/our-tests/act...

Come back with new post once you get folate test result

Or you could just supplement a daily good quality vitamin B complex

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

chriskresser.com/folate-vs-...

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...

Low B12 symptoms

b12deficiency.info/signs-an...

Presumably you are supplementing Vitamin D

Are you also supplementing magnesium and vitamin K2 mk7

Notahappybunny1 profile image
Notahappybunny1 in reply toSlowDragon

Hi - thank you so much for such a comprehensive reply. It'll take me a while to get through it all. I don't supplement a thing. I only take Levo.

Triciadavis profile image
Triciadavis

Hi

I know that your whole body is like all over the place. When they told me that my overactive thyroid could not be cured. I cured myself.

I changed my whole diet, you should research on cleansing your body.

JAmanda profile image
JAmanda in reply toTriciadavis

What did you do that worked, do you think?

Cindee68 profile image
Cindee68

You could have high reverse T3 which would cancel out your free T3. You could test that.

Cindee68 profile image
Cindee68

Also, try a dessicated thyroid hormone like Armour, or NP thyroid. Levothyroxine never did a thing for me. If your body doesn't convert T4 to T3 Levothyroxine is useless.

Notahappybunny1 profile image
Notahappybunny1 in reply toCindee68

Hi I'm afraid that I'm vegan which totally rules out NDT.

pennyannie profile image
pennyannie

Hey there again

Other than rewrite what I wrote last time it's evident that you are not converting the T4 into T3 which is the active hormone that the body runs on - so although your results are in range, and in fact your T4 over it isn't working for you and at this level surplus to your requirements.

Your T4 is coming in at 123% through the range with your T3 coming in at just under 50% :

These need to be balanced within the ranges and the logical solution is to drop some T4 and add some T3 : most people feeling well when both these vital hormones are in the upper quadrants of their relevant ranges.

Most people feel well when on T4 only when their ratio of T3 to T4 is between 1/3.5-4.50 T3/T4 with most preferring to come in at around 4 or under - your ratio is coming in at 4.90 : and you find this ratio by simply dividing your T3 into your T4.

Your vitamins and minerals need to be supplemented as already highlighted as a good core strength helps conversion, and I now from my own experience I need to maintain my ferritin at around 100 for optimal health.

Thyroid uk hold a list of " friendly endocrinologists " so in the first instance can you ask for a referral to one of these who maybe within travelling distance for you to consult and get help.

You haven't a thyroid through medical interventions, and I was in a similar position when I found this amazing website a few years ago.

We have lost our own natural source of T3 that our thyroids supported us with, and personally I think it criminal that we are refused the appropriate thyroid hormone replacement.

I have now resorted to self medication as I was refused a trial of T3 on the NHS.

I started off trialling T3 for myself and virtually immediately the cloud lifted, my mood improved, I slept well and felt more able and knew I had made the right decision.

I have since moved on and am now taking Natural Desiccated Thyroid and this suits me better and I have my life back.

Tammymichelle profile image
Tammymichelle in reply topennyannie

Hi, i just found this new information in your post and i tried to divide my t3 into my t4 and it is not coming up with a number that makes any sense to me. Can i give you my numbers and can you tell me what I'm doing wrong. Maybe i am reading it wrong. My t3 - 3.31 (1.80-4.60)

T4 - 1.5. (0.9 -1.8)

Thank you in advance, i like to use all new info i find on here to figure out if i am dosing right. Is it t4 divided by t3 for the ratio? It keeps coming up .4 and a million other numbers. Is this correct?

pennyannie profile image
pennyannie in reply toTammymichelle

Hey there,

Well, I don't think you're doing anything wrong and I'm confused.

I don't actually recognise the T4 result as being from the same range as the T3 result - does that make any sense ?

Generally a T4 range is something like 12 - 22 and a T3 range 3.1 - 6.8 : in which case one can divide one into the other :

Do you have any other results and were these both done at the same time ?

As it stands, your T3 and T4 are reasonably well balanced with your T3 at around 54 % through its range and your T4 at about 66% through its range :

Most people feel well when they have their T4 and T3 in the upper quadrants of the ranges so you may find a dose increase in Levothyroxine improves your well being ;

No thyroid hormone works well if vitamins and minerals are not maintained at optimal levels so you might like to have ferritin, folate, B12 and vitamin D tested. These may come back in range, but you may need to supplement these yourself in order to maintain optimal levels within the ranges.

Tammymichelle profile image
Tammymichelle in reply topennyannie

Thank you for your reply. I too thought the range was strange. Im in usa and it was an at home finger prick test. I have another set of results with normal ranges somewhere. When i find them i will post but you already helped me with my decision to up my dose a little. Im at 75mcg of levothyroxine and according to the weight info i readnon he re e i should be at 112mcg. I will slowly up it to 100mcg and run another test in 8 weeks or so. Thank you again.

in reply toTammymichelle

Tammumichelle - I am from the US too and have been looking for a finger prick testing place I'm in the St Louis area can you tell me where are you get the finger prick test from? Is there some laboratory that does it? I have used Request a Test to buy my own blood test but I think they are expensive!

Tammymichelle profile image
Tammymichelle in reply to

I overlooked this reply and i apologize i am responding so late. I buy my kits on amazon. They have lets get cheked, health confirmed and everlywell that you can buy. They are expensive, i usually pay 99dollars or so but it is convenient so its worth it to me. I am in Arizona. Just search on amazon at home thyroid test and they come up. If you have prime you don't pay for shipping. Good luck.

in reply toTammymichelle

Thanks so much!

pennyannie profile image
pennyannie in reply toTammymichelle

Well, when you find the other results and what look like " normal " ranges just test that simply ratio divide again :

With different base lines if you go with the % ratio as I did above, you are doing ok : there isn't a wide difference which shows your conversion isn't too compromised and a dose increase the obvious next best step if still with symptoms.

in reply topennyannie

Hi Pennyannie can I confirm this ratio - if my Ft4 is 1 and my FT 3 is 3.0 then my ratio is 3 correct? Or no? I have never been good at math!

pennyannie profile image
pennyannie in reply to

Hey there,

No, I'm sorry, but again the T3 and T4 are not with the same base element as previously explained : uk ranges generally appear with a T4 range of something like 12 - 22 and a T3 range with something like 3.1 - 6.8 and you can see to divide one into the other :

in reply topennyannie

Thank you yes I get it now! A little slow here😊

Notahappybunny1 profile image
Notahappybunny1

Thank you for for your help. I'm struggling to find an endocrinologist list. And can you possibly point me in the right direction to buy T3?

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