? Flare Up: Hi allI have recently had an increase... - Thyroid UK

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SAUK profile image
SAUK
14 Replies

Hi allI have recently had an increase in my symptoms to a point where I cannot walk more than 15 min without being exhausted. My heart rate is high, blood pressure low, headaches, joint and bone pains and body stress levels very high.

My last bloods were in May, due more tomorrow. On T4/T3 combination

Ferritin 148 (30-250)

T3 5.2 (2.4- 6)

TSH 0.001

T4 9.6 (9-19.1)

Vit 60 (50-200)

In the last 2 years been Dx. with fibroids and non- alcohol fatty liver.

I am very worried as have been stable for about 2 years now.

Unfortunately cannot afford any supplements like I used to, so wondering if it is now all catching up on me.

Any ideas will be great

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SAUK
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14 Replies
SlowDragon profile image
SlowDragonAdministrator

What dose levothyroxine and what dose T3

Do you always get same brand levothyroxine at each prescription

Which brand

Same question for T3

are you taking any other vitamin supplements apart from vitamin D

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Request B12 and folate are tested too

SAUK profile image
SAUK in reply to SlowDragon

Thanks SlowDragon

Dose: 75mg T4. 40mg T3 - 6am/ 11:30/ 14:00/ 16:00

Same brand- Morningside for T3. Not sure of T4.... Will check.

Had to stop all vitamin supplements due to cost. Only take BetterU vit D spray in winter months.

Will ask for B12 and foliate.

I didn't think I can have a flare up on T3/T4

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to SAUK

you might need less T3 and more T4

See what results show first

SAUK profile image
SAUK in reply to SlowDragon

Thank you. Hopefully bloods will show easily what needs to be adjusted.

Is it normal to need less T3 than I have normally taken since 2020? My symptoms are all over the show but never felt well on only T4...

SlowDragon profile image
SlowDragonAdministrator in reply to SAUK

It can be tricky and a lot of experimenting to work out what dose levothyroxine and what dose T3 suits you

SAUK profile image
SAUK in reply to SlowDragon

Hi

I got my test results back and nothing too abnormal but still have symptoms.

GP refusing to US liver again as says until bloods show anything will not explore treatment for non- alcohol fatty liver.

Been prescribed metformin from Endo for PCOS and optisiming liver/ insulin ? adrenals but I am not diabetic.

Bloods below. Advise welcome.

Sept 2023

TSH 0.01 (0.35-4.94)

T3 5.8 ( 2.4- 6)

T4 10.4 (9-19.1)

Ferritin 164 (30-250)

CRP 6.2 (0-5)

B12 291 (200-900) was 616 in Dec 21

May 2023

Vit D May 23 60 (50-200)

Should I take B supplement and Vit D spray again?

Can anyone advise on benefit of milk thistle for liver?

Any ideas on benefit of metformin?

Thanks all

SlowDragon profile image
SlowDragonAdministrator in reply to SAUK

TSH 0.01 (0.35-4.94)

T3 5.8 ( 2.4- 6)

T4 10.4 (9-19.1)

So last dose 4pm day before test is too early

Day before test last dose T3 at least 8-9pm

What time was last dose levothyroxine before test

Ft4 is very low

I would consider reducing T3 by 5mcg and increase levothyroxine by 25mcg

Retest in 6-8 weeks later

Meanwhile ESSENTIAL to improve very very poor B12

No folate result?

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

SAUK profile image
SAUK in reply to SlowDragon

Thank youFolate

Sept 23- 3.7 (3-20.5)

Dec 21 - 3.6 (2-17)

I usually take my 4pm T3 and do bloods at 9... but might have impacted this time.

Levo was at 6am the day before.

T4 was 9.6 in May 23. Was 12.1 in 2021 but was only on 20 mcg T3 at the time.

Will look at B12 options now.

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to SAUK

Many many members on Levo plus T3 find they need Ft4 at least 50-60% through range

Folate obviously terrible

Again many members find they need to supplement vitamin B complex continuously….plus initially separate B12 until B12 is above required levels

Reducing T3 may reduce blood sugar levels

T3 can affect blood sugar levels

medicines.org.uk/emc/files/...

drugs.com/cdi/liothyronine-...

SlowDragon profile image
SlowDragonAdministrator in reply to SAUK

vitamin D is too low

You need vitamin D everyday

Perhaps higher dose in winter

Aiming for at least 80nmol minimum

SAUK profile image
SAUK in reply to SlowDragon

Thank you so much. I will look at all the supplement options you suggested. This is so helpful. Would be lost without this support. 🙂

SAUK profile image
SAUK

Hi

I got my test results back and nothing too abnormal but still have symptoms.

GP refusing to US liver again as says until bloods show anything will not explore treatment for non- alcohol fatty liver.

Been prescribed metformin from Endo for PCOS and optisiming liver/ insulin ? adrenals but I am not diabetic.

Bloods below. Advise welcome.

Sept 2023

TSH 0.01 (0.35-4.94)

T3 5.8 ( 2.4- 6)

T4 10.4 (9-19.1)

Ferritin 164 (30-250)

CRP 6.2 (0-5)

B12 291 (200-900) was 616 in Dec 21

May 2023

Vit D May 23 60 (50-200)

Should I take B supplement and Vit D spray again?

Can anyone advise on benefit of milk thistle for liver?

Any ideas on benefit of metformin?

Thanks all

FancyPants54 profile image
FancyPants54

Given your very low B12, before you start supplementing again, I would ask the doctor to test you for pernicious anaemia. If you have that condition supplements won't help and you need to be diagnosed and prescribed injections of B12. Once you start to supplement your blood levels will look high and throw the doctor off. The experts think anything below 500 is deficient. Your very low folate could also be a clue towards the B12 issue.

Other than that, it looks like you might benefit from a small reduction in T3. It's quite high in your results and would have been higher if you had taken the T3 at the recommended number of hours before the test. I would not suggest dropping a whole 5mcg in one go though. 2.5mcg would be a better test.

SAUK profile image
SAUK in reply to FancyPants54

Thank you. I do feel OK when I miss a T3 dose so perhaps this might do the trick.

My GP does not think anything is deficient so won't test anything further.

I have emailed my Endo for advise and if all else fails will go to my private Endo that is great..

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