TSH/T3/T4/Vit B & D results: My previous Endo... - Thyroid UK

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TSH/T3/T4/Vit B & D results

LONGEATON profile image
21 Replies

My previous Endo (private) retired last October and the new one (private) that I was suggested to see immediately reduced my Lio from 100 to 75 & the T3 from 20 to 10. Originally I had wanted to see an NHS Endo 3 years ago but none were available, hence the private route.

My readings are T4 18.8 - T3 5.1 - TSH 0.03 - Vit D 23 - Vit B 278. My latest blood test says the TSH is chronically low because I have an 'Empty Sella' and is therefore 'normal'!

I am currently taking per day Thyroxine 75, Liothyronine 10, B12 100 & Vit D 4000.

I sleep all night & if allowed all afternoon & evening time. I have no energy and feel totally fatigued, my hair is coming out and have lost nearly 2 stone in weight. My voice has been affected and I have a sore throat. By the way I am 85!

My present Endo is of little help and seems only interested in keeping my results ' within range' irrespective of how I actually feel - is life worth carrying on??

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LONGEATON
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21 Replies
SlowDragon profile image
SlowDragonAdministrator

immediately reduced my Levo from 100 to 75 & the T3 from 20 to 10.

I hope this wasn’t all done at once

Ideally you would only reduce Levo OR T3 at any one time

Only ever reducing T3 by maximum of 5mcg per day…..then wait 6-8 weeks and retest

What were Ft4 and Ft3 BEFORE reducing dose

Always test early morning, ideally before 9am and 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)

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

How many weeks between dose reduction and this test

Please add ranges (or say which private company did tests)

T4 18.8

T3 5.1

TSH 0.03

Did you test as advised

LONGEATON profile image
LONGEATON in reply toSlowDragon

Hi SlowDragon

Your reply greatly received!

On reviewing my initial report I have made a slight error and apologise. My T4 back in February 2020 was alternate days of 75 &100 & T3 20; on checking back I find my previous Endo at some time reduced the T4 to 50 which my current Endo increased on 19th October 2023 to 75 but halved my T4 to 10 per day with his intensions to stop prescribing liothyronine.

All blood tests including T3,T4 &TSH were taken at my GP's clinic before 9am & T4 stopped 24 hrs before being processed at Medway hospital

Before reduction my Ft3 was 4.9 - Ft4 10.40 - TSH 0.05(previous 0.32 in March 2023)

T4 is Wockhardt brand

T3 from Roseway

SlowDragon profile image
SlowDragonAdministrator in reply toLONGEATON

Endo at some time reduced the T4 to 50mcg (and kept 20mcg T3)

Ft3 4.9

Ft4 10.40

TSH 0.05

Can you add the ranges on Ft4 and Ft3

(figures in brackets after each result)

Results above on 50mcg levothyroxine show very low Ft4

my current Endo increased on 19th October 2023 to 75 but halved my T4 to 10 per day

T4 18.8

T3 5.1

TSH 0.03

More recent results since increasing levothyroxine to 75mcg show your Ft4 has improved significantly and Ft3 appears to have increased as well

SlowDragon profile image
SlowDragonAdministrator

Vit D 23

Presumably this is 23nmol

How long have you been taking 4000iu vitamin D

B 278

Please add range on B12

Is this Serum B12 or Active B12

No Folate or ferritin results?

LONGEATON profile image
LONGEATON in reply toSlowDragon

Vit D is 23nmol started taking 13th March 2024

Serium Vitamin B12 278 ngl - range 145-914

Serium Folate B12 3.87 ugl - range 3.00 - 20.00

SlowDragon profile image
SlowDragonAdministrator in reply toLONGEATON

Vit D is 23nmol started taking 13th March 2024

So Vitamin D will take several months to improve

Suggest you retest in 3-4 months

You may need to take higher daily dose for few weeks

SlowDragon profile image
SlowDragonAdministrator in reply toLONGEATON

Serium Vitamin B12 278 ngl - range 145-914

Serium Folate B12 3.87 ugl - range 3.00 - 20.00

So these are BOTH too low

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

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

Highly effective 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...

B vitamins best taken after breakfast

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

Post discussing different B complex

healthunlocked.com/thyroidu...

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

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...

helvella.blogspot.com/p/hel...

SlowDragon profile image
SlowDragonAdministrator in reply toLONGEATON

no iron or ferritin results?

csj113 profile image
csj113

Were you feeling well before the changes to your dosage?

Also, have you spoken to your GP about your fatigue and dramatic weight loss to have other causes ruled out?

McPammy profile image
McPammy

Remember over medication can feel very similar to under medication. Looking at your TSH being so low this indicates you are taking too much thyroxine. It could be the levothyroxine or liothyronine or both.

With you losing so much weight and hair falling out. You definitely sound as though you are taking too much thyroid medications.

NanaV54 profile image
NanaV54 in reply toMcPammy

TSH is always suppressed with T3 supplement. The pituitary is releasing less Thyroid Stimulating Hormone (TSH) because it's being supplied by replacement hormone. Above normal T3 has been shown to be a cause for osteoporosis because it disrupts bone modeling, just as too low T3 can cause brittle outer bone. Low TSH only affects bone modeling if it's caused by HIGH FT3, not normal FT3.

McPammy profile image
McPammy in reply toNanaV54

Not all people taking T3 liothyronine have a suppressed TSH. Mine is in range, just and always is. I take Thybon Henning 5mcg twice a day plus my levothyroxine also.

NanaV54 profile image
NanaV54 in reply toMcPammy

The point being that T3 is the main driver of TSH.. it is more sensitive to changes in FT3 than FT4. The higher your FT3, the lower TSH. By suppressed, I'm saying that it is lower than it would be taking T4 formulations only. And in range is below 1. Because of T3 sensitivity, the pituitary releases less Thyroid Stimulating Hormone due to higher levels of T3. If levels are optimum, it does cause a lower TSH than normal for many. I've taken Armour for 24 years. When my levels are optimal, my TSH is below normal. The only time osteoporosis is a risk is if FT3 is above normal. Studies were based on TSH suppression caused by too much T3 causing bone modeling issues.

McPammy profile image
McPammy in reply toNanaV54

My latest TSH result last week was 1.09 (0.35-5.50). My T3 result was 5.6 (3.7-6.00) 83%. And my T4 was 9.6 (7.86-14.41) 24%. So from what you’re saying if I understood correctly with my quite high T3 my TSH should be suppressed ( lower than bottom of range 0.35).

I did my bloods with taking t3 morning dose 2 hrs previous. I hadn’t taken t4 levo dose for 16hrs. I don’t change my regular timings for my 9am blood draw.

I did have a couple of months of Erfa prior to changing to levo plus liothyronine. If I remember correctly my t4 was always very low.

Maybe my individual situation is down to my very low level of t4 to t3 conversion. Prior when I was just taking t4 levo my t3 was only 8%. So I’m starting from a very low point with t3. Maybe that’s part of the reason it doesn’t go over its level on my dose. Another maybe that I take liquid levothyroxine. I split both levothyroxine and liothyronine doses twice a day. So that would also reduce spikes and therefore reduce the chance of TSH alarming suppression.

We are all individuals and have to find our own ways to feel better and energised. I’m symptom free now and have been for 5 years since managing to get my levels right for me. As long as my medications are not changed and continuous supply I really have no issues.

NanaV54 profile image
NanaV54 in reply toMcPammy

T3 formulations taken within 2 hrs of previous dose raises FT3 levels and lowers TSH within 2 hours after dose and peaks at 5 hrs. It gradually reduces FT3 after 13 hrs and raises TSH to baseline within 24 hrs.back to baseline. Your FT3 would be artificially higher and TSH artificially lower than what they would be, had they been taken at least 13 hrs after last dose. Similar effect as taking biotin within 7 days of labs, due to lab interference. As long as you always follow the same routine when testing, it shouldn't matter, as long as you feel well. But if you weren't feeling well and had labs taken under those conditions, it would be difficult for your Dr to determine that you may need an increase. I am not saying that everyone is the same, but the facts remain that TSH is T3 sensitive. T3, the active hormone, is felt within 2 hours after taking (I can feel mine within an hour), unlike T4, which is the inactive hormone, that is subtle and takes up to a week to fully absorb. It's the reason many split their T3 dose and take it twice a day...less immediate side effects, and improves mid day drop in energy and brain fog. It's why it is usually better to wait until after labs before taking replacement hormones that contain T3, and at least 13 hrs after last dose.

McPammy profile image
McPammy in reply toNanaV54

I alternate my bloods every 3 months. I take or not take before blood draw. My TSH doesn’t alter. ( well just a very tiny smidge). The only thing that alters is the T3 or T4 levels.

Hectorsmum2 profile image
Hectorsmum2

Your B12 is in it boots nowonder you are losing weight and have hair falling out. I suggest you post on PA forum. You may need injections as oral supplements arent helping much.

Shakeyjakeblues profile image
Shakeyjakeblues

Presumably your hypothyroidism is secondary due to your pituitary issues and therefore any TSH results are irrelevant. Your FT4 level need to be in the upper third of the reference range. Are all your other pituitary hormones correct. Have you been tested for Growth Hormone deficiency? It may not be one hormone issue causing your symptoms it might be 2 or 3 that aren't optimised. Pituitary patients struggle with getting everything balanced especially if you only see a consultant every six months.

NanaV54 profile image
NanaV54

Has your Endo considered D3 prescription? My sister takes 50,000 D3 weekly. Also, B12 is available with injection, to give you an immediate boost. Consider adding Vit K2 to your Vit D3 to better regulate calcium, directing calcium to your bones and teeth and, hopefully, away from your arteries, preventing calcification of arteries. I'm sorry you are going through so many changes. When taking T3, the main concern is FT3 and FT4. That is what should guide dosing. Your low TSH is only concerning if your FT3 is above range.

vladamuza profile image
vladamuza

Hair loss may be attributed to deficiencies in iron, biotin, and protein, which are common among peoples with Hashimoto's thyroiditis (and possibly other thyroid conditions). This was the case for me. Fatigue and tiredness could also be linked to adrenal fatigue.

If you're still experiencing symptoms despite being on medication and having normal-range test results (well, hopefully the diagnosis of Empty Sella was accurate), it might be because the underlying issues that initially caused your thyroid problems remain untreated.

I personally found great help in books by Izabella Wentz. They provide valuable insights into understanding the various factors contributing to thyroid problems.

Hope this helps, and you'll find the reason for your symptoms, feeling better soon! 🙂

amazon.ca/stores/Izabella-W...

waveylines profile image
waveylines

Honestly your B12 is shocking low. Ask your GP to do a blood test for Intrinsic Factor. This is the test they use to pick up Pernicious Anemia. Do this before supplementing. Unfirtunately this nlood test only picks up 50%of cases....so a negative is not proof that tou dint have it but a positive is definate proof you do. Its possible at that level you may need b12 injections. Do you have meat in your diet. That's the main source of b12. As we age we find it harder to absorb12 from our tummies as the stomach acidic level reduces..... So supplementing is what is advised for anyone over 50yrs.

Whilst your GP is testing B12 get them to check your iron and folate level.

Have a look on B12d.org. they have a great assessesment tool checking for symptoms and give great advice.

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