First Private Blood Results: Hello all, I have... - Thyroid UK

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First Private Blood Results

elsaldo profile image
29 Replies

Hello all, I have had Graves’ disease for many years and had a total thyroidectomy in Feb 2020.

As per my previous post I was advised it would be beneficial to get private bloods done. Here are my results :

31 (75-175) : 25 oh Vit D LOW

31 (13 - 150) : Ferritin

75.0 (37.5 - 188) : Active B12

6.6 (8.83 - 60.8) : Folate Serum LOW

2.43 (0.270-4.2) : TSH

3.5 (3.1 - 6.8) : Free T3

19.0 (12 - 22) : Free Thyroxine FT4

134 (0-115) : Thyroglobulin Anti Bodies HIGH

143.7 (0-34) : Thyroid Peroxidose Anti Bodies HIGH

134.00 (59-154) Total Thyroxine T4

Any advice would be much appreciated I still feel awful after thyroid removal.

I take 100 mcg levo, 12.5 propranolol twice daily (i’m very slowly reducing this) also calcium supplements since Total Thyroidectomy 2mcg alphacalcidol and 2 500mg x 4 times daily calcichew d3. Last three calcium checks all in range.

Thank you Sally x

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elsaldo profile image
elsaldo
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29 Replies
jimh111 profile image
jimh111

Your fT3 is rather low. I would ditch the propranolol as it lowers fT3 and possibly increases reverse T3.

Lora7again profile image
Lora7again in reply tojimh111

I think she might need to wean herself off propranolol you cannot just stop it just like that. That is one of the reasons I did not take it when I was first diagnosed.

nhs.uk/medicines/propranolol/

elsaldo profile image
elsaldo in reply toLora7again

Yes lora i got bad withdrawals trying to stop it too fast x

elsaldo profile image
elsaldo in reply tojimh111

thanks, I am trying to reduce it. Was taking 20mg twice daily so i’m slowly getting there x

Lora7again profile image
Lora7again

Your TSH is too high and should be 1 or lower. Also 100mcg is a low dose and you need an increase and you might have to add T3. A lot people without a thyroid do well on NDT because it contains T3. You also need to have optimal vitamin levels and some of yours are too low.

elsaldo profile image
elsaldo in reply toLora7again

Thanks Lora I will speak to GP again. I did ask for a rise in levo but was told no as I am in “range”. However my last tsh result was 1.27 so maybe now it’s higher I will get an increase x

Lora7again profile image
Lora7again in reply toelsaldo

Have you asked if you can add T3? As I just said a lot of people without a thyroid need T3 as well as T4 to feel well.

elsaldo profile image
elsaldo in reply toLora7again

is my t3 low? i don’t really understand what it should be at x

Lora7again profile image
Lora7again in reply toelsaldo

Most people feel well with their T3 in the upper third of the range. I am not an expert so hopefully someone will be along to advise you.

elsaldo profile image
elsaldo in reply toLora7again

ok Lora thank you for your help x

pennyannie profile image
pennyannie

Hey there again Elsaldo

So your T3 is at around 11% through and your T4 is at around 70% through the range.

Ideally these need to be balanced at roughly the same % through the ranges with most people feeling better when both T3 and T4 are in the upper quadrants of their ranges.

Most people feel well when their conversion ratio is between 1/ 3.5 - 1 / 4.5 with 1 / 4 being around the common medium : and currently your ratio is coming in at 1 / 5.4 : and to find the ratio you just divide your T3 into your T4 :

I think your Propranolol may have something to do with this low ratio but I have never been on this, though read you must come off this Beta Blocker very very slowly.

Your vitamins and minerals all look much too low in the range detailed and you need to be aiming for at least 50% + through - though find the folate range a little odd but this is not my area of expertise and hope someone will come along and offer you a more in depth reply:

However if these are all maintained at optimal levels, your conversion of the T4 into T3 will improve and there is the option of increasing your T4 as you have room to manoeuvre up in the range.

No thyroid hormone replacement works effectively if your vitamins and minerals are not maintained at optimal levels and I know for myself I need my ferritin up at around 100, for maximum support and conversion.

However in all honesty after putting all these factors into a better place, I believe the most sensible suggestion has to be that of supplementing a little T3 alongside your T4 :

As previously explained, you have lost your own natural T3 thyroid production and you would definitely benefit from a combination of T3 and T4 thyroid hormone replacement so both vital hormones can be dosed and monitored independently of each other.

The other option is to take Natural Desiccated Thyroid which contains a fixed ratio of T3 and T4 and I read some people have to add a little T3 or T4 to their NDT to find that fine ratio balance unique to them.

P.S. Forgot to mention your antibodies which seem a little high but am not able to offer any advice on this - sorry.

elsaldo profile image
elsaldo in reply topennyannie

thank you so much pennyannie your insights are very helpful and it gives me a very good idea on what i am aiming for as it’s all very new to me. thanks again x

SlowDragon profile image
SlowDragonAdministrator

It can be very tricky reducing/stopping propranolol

I was stuck on propranolol almost 20 years

Reducing by 5mcg

Waiting at least 2-3 weeks before next reduction

Last 5mcg is hardest ...I found dropping one day week

Following week drop twice week (not on consecutive days)

Etc

SlowDragon profile image
SlowDragonAdministrator

Obviously your vitamins are far too low

Low vitamin D obviously needs improving and GP should prescribe 1600iu everyday for 6 months

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Graves, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with thyroid disease we frequently need higher dose than average

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

SlowDragon profile image
SlowDragonAdministrator

Ferritin is very low

Ideally GP should do full iron panel test for anaemia...but they probably won’t agree to do so

You may need to test privately

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

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.

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Folate is deficient. GP should prescribe folic acid

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

SlowDragon profile image
SlowDragonAdministrator

Suggest you get FULL Thyroid And Vitamin testing again in 2-3 months...see how much vitamins have improved

Hopefully by then you will be off propranolol completely

Personally I couldn’t get off propranolol until strictly gluten free

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

elsaldo profile image
elsaldo in reply toSlowDragon

Thanks so much for taking the time to respond and post all of your replies SlowDragon, I am truly grateful for your input.

I will go through each reply and read the various links you have suggested then begin to make changes to help me get healthy again.

Will retest in few months as suggested and see how I’m doing then.

Thanks, Sally x

elsaldo profile image
elsaldo in reply toSlowDragon

Just one quick question SlowDragon ... do you have any opinion to share on my thyroid antibody test results ? They are high but i’m not sure why. Thank you x

SlowDragon profile image
SlowDragonAdministrator in reply toelsaldo

I did wonder about those

They can be high due to Graves’ disease and it’s not long since you had TT

Some people do have Hashimoto’s and Graves

Did you ever have thyroid ultrasound scan before thyroid was removed?

See if they drop over time

Strictly gluten free diet often sees TPO antibodies slowly drop

elsaldo profile image
elsaldo in reply toSlowDragon

Thanks again for replying ... No I didn’t ever have an ultrasound. I will prioritise getting my vitamin levels in order first and then see how my anti bodies are, Sally x

SlowDragon profile image
SlowDragonAdministrator in reply toelsaldo

Another quick thought

Improving vitamin D levels will naturally increase calcium levels...so you will need to keep an eye on calcium. You may need to reduce calcium supplements

Presumably parathyroids were damaged during TT?

Propranolol lowers parathyroid levels

See “anything else I should know”

labtestsonline.org.uk/tests...

This may be why propranolol may lower magnesium

I found I couldn’t tolerate vitamin D supplements until I took magnesium for 2-3 weeks first. More on my profile

Like many on here I still supplement magnesium. Gluten free diet is low in magnesium

elsaldo profile image
elsaldo in reply toSlowDragon

Yes my surgeon thinks parathyroid glands are just in “shock” and in time will start to work again as none were removed.

Propranolol really does cause a lot of problems. I am following your advice to get off it so hopefully won’t be much longer. Thanks -again, Sally x

SlowDragon profile image
SlowDragonAdministrator in reply toelsaldo

Agree totally about propranolol

Even though I have Hashimoto’s (so hypothyroid) Not one endo I saw ever considered propranolol was causing issues

elsaldo profile image
elsaldo in reply toSlowDragon

I was just reading your bio ... what a long journey you have been on with your health ! x

pennyannie profile image
pennyannie

Hey there Sally / elsaldo - :!!!

Do you still live in Scotland as I believe T3 is meant to be easier to get prescribe if you wear a kilt ??? No this isn't a joke, but was trying for a smile. and some positivity.

If you email Dionne at Thyroid uk - ( and join the charity if you haven't already ) there is a list of friendly endos - sympathetic to hypothyroid patients -

You can be referred anywhere in the country that obviously makes sense for you :

Professor Toft the famous endocrinologist who recently retired from the NHS worked out of Edinburgh and would like to think his students would be amongst the " enlightened " ??

Obviously you'll need to work on the vitamins and minerals in the meantime but there's a plan there and something to work towards :

elsaldo profile image
elsaldo in reply topennyannie

hahaha I do live in Scotland but sadly I don’t own a kilt ;)

I have an Endo but she’s off on maternity leave so i am patiently awaiting her return.

Like you said though... I have a good plan of action now and I am feeling really positive so thanks for your kind words and free “smile” x

Alma1960 profile image
Alma1960

Be careful about PRIVATE in case Dr doesn't like it

elsaldo profile image
elsaldo in reply toAlma1960

Yes Alma probably not the best choice of words to use. I shall be careful ;)

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