Endocrinologist wants to reduce by levo by 50mc... - Thyroid UK

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Endocrinologist wants to reduce by levo by 50mcg and double my T3... advice please

Zazbag profile image
28 Replies

Just had a call with my endocrinologist. My most recent blood results from 22nd April show my T4 and T3 have reduced to about half the level they were a year ago.

Latest T4: 45.4% through range

One year ago T4 was: 83% through range

Latest T3: 54% through range

One year ago T3 was: 114% through range

In fact, these numbers are worse than they were before I added T3 and was on levothyroxine only (when I felt so bad I wanted to kill myself). I've had thyroid symptoms over the past 6 months (depression, anxiety, trouble sleeping, weight gain, PMS). I had to wait 4 weeks for an endocrinologist appointment so 3 weeks ago I decided to increase my liothyronine to 37.5mcg and my levothyroxine to 175mcg to see if it improved my symptoms. One thing I noticed back when I first added T3 was that when I was on 125mcg of levothyroxine, my feet were always cold, but when I increased my dose to 150mcg they were always warm and comfortable. Right now even on 175mcg my feet are always cold. I am also having heart palpitations so something clearly isn't right.

I just spoke to my endocrinologist and he wants me to reduce my levothyroxine to 100mcg and increase my T3 to 50mcg. He is worried about my TSH and says I am already on one of the highest doses he's ever seen and he'd be putting his medical licence at risk by increasing my dose past 150mcg and 25mcg. I didn't mention that I have already increased both anyway. I have no confidence that 100mcg of T4 and 50mcg of T3 will make me feel good. I felt my best a year ago when my T3 and T4 were near the top of the range. Now they're 45–54% through the range. Please can someone advise me on a sensible step to try next? I have literally zero trust or confidence in what my endocrinologist suggested. He also said my vitamin D level at 93 is nearly at a toxic level (I thought 100 was optimal).

I am 35 years old, female with Hashimoto's. I follow a strictly gluten, dairy and egg free diet and mostly avoid soy.

Test results from 22nd April:

Serum TSH: <0.01

Serum T4: 15.9 (10.0–23.0)

Serum T3: 5.1 (3.10–6.80)

Serum folate: 7.6 (3.10–20.50)

Serum ferritin: 74 (22–275)

Serum B12: 309 (187.00–883.0)

Serum vitamin D: 93

RBC: 4.28x10^12 (3.95–5.1510)

MCV: 91.0 (80–100)

A year ago (when I felt well and weighed 66kg) they were:

Serum TSH: 0.02 (0.27–4.2)

Serum T4: 18.3 (12.0–22.0) (different range)

Serum T3: 7.3 (3.10–6.80)

Serum folate: 8.54 (2.5–19.50) (different range)

Serum ferritin: 48.0

Serum B12: 396.7 (180.0–900.0) (different range)

Serum vitamin D: 159

RBC: 3.87x10^12 (3.80–5.30) (different range)

MCV: 93.0 (83–100) (different range)

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Zazbag
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28 Replies
SlowDragon profile image
SlowDragonAdministrator

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Do you normally split your T3 into 2 or 3 smaller doses spread through the day

Day before test did you split T3 dose and take last 1/4 tablet approx 8-12 hours before test

What dose levothyroxine and T3 were you on when test was done ?

125mcg levothyroxine?

25mcg T3

Do you always get same brand levothyroxine and T3 at each prescription

Serum folate: 7.6 (3.10–20.50)

Serum B12: 309 (187.00–883.0)

Folate and B12 are too low

Are you currently taking any vitamin B complex or B12

Zazbag profile image
Zazbag in reply toSlowDragon

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

My blood test was at 9am, fasted. I skipped my dose of levothyroxine the night before, and took it after my blood test, so my last dose before the test was two nights before. I took my second dose of liothyronine (12.5mcg) about 12 hours before my blood test. These are the timings I follow for every blood test so they are a consistent comparison to each other.

Do you normally split your T3 into 2 or 3 smaller doses spread through the day

On 25mcg I was taking 12.5mcg twice per day. At the moment I'm taking 37.5mcg three times per day (last dose before bed – I feel like it disturbs my sleep).

Day before test did you split T3 dose and take last 1/4 tablet approx 8-12 hours before test

I have 50 mcg tablets so the smallest I can cut them into is quarters so 12.5mcg and yes I took it 12 hours before the test.

What dose levothyroxine and T3 were you on when test was done ?

150mcg levothyroxine and 25mcg T3.

Do you always get same brand levothyroxine and T3 at each prescription

Yes I've only ever used Teva levo and Sigma T3.

Serum folate: 7.6 (3.10–20.50)

Serum B12: 309 (187.00–883.0)

Folate and B12 are too low

Are you currently taking any vitamin B complex or B12

I take Thorne Basic B Complex.

SlowDragon profile image
SlowDragonAdministrator in reply toZazbag

Presumably you stopped vitamin B complex few days before test

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 methyl folate supplement and separate B12

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

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

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been

healthunlocked.com/thyroidu...

Zazbag profile image
Zazbag in reply toSlowDragon

During the week of my test, Monday was the last day I took my B complex and my blood test was on the Friday.

I will add separate folate and B12 to my B complex asap.

Any idea what should I do about my doses of T4 and T3?

SlowDragon profile image
SlowDragonAdministrator in reply toZazbag

You don’t need a separate folate regularly

Just take separate folate during the week before tests when you stop vitamin B complex

shaws profile image
shawsAdministrator in reply toZazbag

As you are supplementing with B12, did your GP first check that you do NOT have pernicious anaemia. If you have P.A. it is another autoimmune condition and you need regular injections of B12.

Zazbag profile image
Zazbag in reply toshaws

I requested a test for PA two years ago (my aunt has it) but I tested negative.

shaws profile image
shawsAdministrator in reply toZazbag

That's good you are negative. When we have one autoimmune disease we can develop others - more's the pity,

Zazbag profile image
Zazbag in reply toshaws

Yes I know that.

SlowDragon profile image
SlowDragonAdministrator in reply toZazbag

My blood test was at 9am, fasted. I skipped my dose of levothyroxine the night before, and took it after my blood test, so my last dose before the test was two nights before. I took my second dose of liothyronine (12.5mcg) about 12 hours before my blood test. These are the timings I follow for every blood test so they are a consistent comparison to each other.

so this gives false low Ft4 result as left 36 hours between last dose levothyroxine and test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

On your most recent thyroid results….personally I would have only increased levothyroxine a tiny amount…perhaps 12.5mcg extra 2 days a week

Zazbag profile image
Zazbag in reply toSlowDragon

I am having thyroid symptoms and not feeling good. A year ago my T4 and T3 level were much higher. I understand that 36 hours means my T4 appears lower than if it was 24 hours but this is the same protocol I followed for the blood test I had a year ago and you can still see there is a large decrease. A year ago I felt very good and I weighed 66kg. Now I feel significantly worse and weigh 72/73kg. I have no idea what I am meant to do to feel better.

SlowDragon profile image
SlowDragonAdministrator in reply toZazbag

FT4: 15.9 pmol/l (Range 10 - 23)

Ft4 45.38% through range

Ft4 falsely low as last dose 36 hours before test

FT3: 5.1 pmol/l (Range 3.1 - 6.8)

Ft3 54.05% through range

Personally I would have increased levothyroxine a little

12.5mcg extra twice or 3 times a week

That would also increase Ft3

Retest 6-8 weeks time

Meanwhile working on improving low B vitamins

beaubeau1121 profile image
beaubeau1121 in reply toZazbag

Wish i had an endo in Los Angeles that would allow 50mcg of liothyronine… rather than always wanting the TSH higher & the dose for T3 lower!I feel the best on 50/60mcg of T3 only… but have been forced to add T4(37.5).

shaws profile image
shawsAdministrator in reply tobeaubeau1121

I wonder if the USA Endocrinologists get some 'payments' from Big Pharma for prescribing a certain medication to those who are hypothyroid.

I cannot take levothyroxine at all as it gives me serious palpitations.

beaubeau1121 profile image
beaubeau1121 in reply toshaws

Seems the newer & lesser “ quality of life” concerned drs…. only want T4 or bust/die on too much T3 w suppressed TSH. Too much T4 only suppressed my TSH … & never has been raised… no matter what!

DandyButch profile image
DandyButch in reply toshaws

I don't just get palpitations, I get the whole lot of side effects permanently.

SlowDragon profile image
SlowDragonAdministrator

Are you in U.K. or elsewhere

Vitamin D is measured in different units in different countries

U.K. units are nmol

USA and EU units are ng/ml

40ng/ml = 100nmol

Zazbag profile image
Zazbag in reply toSlowDragon

I'm in the UK.

SlowDragon profile image
SlowDragonAdministrator in reply toZazbag

So vitamin D at around 100nmol is good

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Susieibbo301 profile image
Susieibbo301 in reply toSlowDragon

My endo said he wanted my Vit D level at 125 to be optimum.

Lalatoot profile image
Lalatoot

Ft4 18.3 range 12 - 22 This is 63% through range not the 83% you have stated. Might make a difference if you were aiming to get the same percentage through range again.

Zazbag profile image
Zazbag in reply toLalatoot

Thanks, you’re right. My T4 was as high as 21ish at some point and I felt good with that too. I guess I’m just trying to make it clear that I feel better with higher T4 and T3.

humanbean profile image
humanbean

I follow a strictly gluten, dairy and egg free diet and mostly avoid soy.

Just out of curiosity, why don't you eat eggs?

Serum folate: 7.6 (3.10–20.50)

Optimal for folate is upper half of the reference range which for the range you've given is approx 12 - 20.5.

To raise folate you need to take one of the supplements mentioned in these links :

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

The suggested supplements are easily sourced on supplement sites on the internet.

Serum B12: 309 (187.00–883.0)

Various levels are quoted to be optimal for B12. I'm assuming units of reference are ng/L.

1) Upper half of range.

2) 500 - top of range.

3) Top of range.

4) 1000

Personally I aim to keep my own B12 at about 1000 ng/L. The best supplement to raise B12 is methylcobalamin, which is easily sourced on the internet.

When B12 and folate need supplementing it is a good idea to take a supplement to raise B12, another to raise folate, and a B Complex. Once B12 is optimal drop the B12 supplement. Once folate is optimal drop the folate supplement. Then continue with the B Complex alone. If B12 and/or folate start to drop again you may need to continue the separate supplements, but take only enough to keep it optimal.

Serum vitamin D: 93

Despite what your endo said, your vitamin D level is nowhere near toxic. Optimal is quoted variously as 100 - 150 nmol/L or 125 nmol/L. Personally, I would be happy with your level. I aim for 100 nmol/L for myself. But some people feel better with higher levels. You need to experiment.

For any supplement you take it is worth knowing what symptoms a toxic level would cause :

medicalnewstoday.com/articl...

RBC: 4.28x10^12 (3.95–5.1510) 27.50% of the way through the range

I don't know an optimal level for numbers of red blood cells. In that situation I assume anything which is well in range (as yours is) is okay. For more info on RBC levels :

labtestsonline.org.uk/tests...

From personal experience only, I have found that my RBC levels rose when my iron and ferritin improved. I've always assumed a mid-range result would be good.

MCV: 91.0 (80–100) 55% of the way through the range

This is close to mid-range, so I'm guessing it is good. I know that when MCV is low in range or below range it indicates low iron and/or low ferritin. If MCV is high in range or above range it indicates low B12 and/or low folate. If someone has a combination of low levels of iron/ferritin/B12/folate I think the MCV level might not be a lot of help. For more info :

labtestsonline.org.uk/tests...

Serum ferritin: 74 (22–275) 20.55% of the way through the range

This is too low, suggesting you need more iron. I would suggest that you read this link to find out why relying on just a ferritin result is not a good idea for treating iron. You would need an iron panel. For more info :

healthunlocked.com/thyroidu...

The best iron panel I know of :

medichecks.com/iron-tests/i...

Discount code for the above :

thyroiduk.org/help-and-supp...

jaroros profile image
jaroros

You are on very high dose hyperthyroid and hypothyroid sometimes look similar i bet you need to return 150 mcg levothyroxine

TickTockTock profile image
TickTockTock

Your cold feet are the key to what is happening. You had cold feet so naturally you increased the dose to control the symptoms and then you hard warm feet for a while, and now despite the higher dosage they're cold again. Your body is trying to protect you from hyperthyroidism.

I was on 200mcg of T4 and 120mcg of T3 for a while. Felt great at the start, then hypo symptoms returned, increased the dose and felt good, then eventually hypo symptoms again, and so increased the dose, on and on this cycle went. Eventually I was so cold my temperature plummeted to a low 35C. I was freezing, couldn't stop shaking, incredibly constipated, bed-ridden, etc.

Now I'm on 75mcg of T4 (split over 4 doses) and 10mcg of T3 (split over 2 doses) and I feel warm and happy and am losing weight.

Here's the reason:

Doctors do not factor in deiodinase 3 enzyme (D3) when dosing patients, most have never even heard of D3 but it is a crucial element in symptom control. The lower your TSH drops the more D3 your body will produce (this mechanism fails in hyperthyroidism but it's very relevant for hypothyroid people). D3 converts T4 to inactive (and useless) rT3, and converts T3 into inactive (and useless) T2, which are then eliminated from the body. Every time you increase your dose and then feel better it's because you've given your body enough hormone to out-compete the D3 and actually reach your cells...but after a several weeks your body will have slowly increased its D3 levels to out-compete the increase in the thyroid hormone dose, and then you move from feeling warm to being cold again.

The failure of doctors to understand the role of D3 causes so many hypothyroid patients to continue having symptoms despite being "adequately" dosed.

You have two options:

1. Continue to increase your dose, feel better, then eventually feel worse, and then carry on in this cycle. It's risky. You may be able to find a dose that can permanently out-compete the D3 in your body, or your body may be incredibly adept at D3 production and at some point your doctor will refuse to increase you dosage and you'll be stuck and freezing.

2. Massively lower your dosages over time to a level that does not trigger an abnormally high D3 level. The reason this happened in the first place was that your very first original dose was too high for your body. If you feel good and warm when you start taking the medication and then start feeling cold again, and it's a cycle that keeps happening after each dose increase, that's the sign that it's D3 related.

I can put another post detailing how I changed my medication to stop the D3 increase and got back to feeling warm and losing weight etc. if you'd like to read about it.

Zazbag profile image
Zazbag in reply toTickTockTock

I’ve never heard of this mechanism, please can you share some good sources of information about the role of D3 so I can learn about it properly? I’d be very interested in reading about how you changed your dosages. I’m very confused right now. It isn’t a cycle that keeps repeating for me, because this is the first time it happened since I started on 150 mcg levo/25 mcg lio about 1-1.5 years ago. I felt great for about a year and then the last 6 months I’ve slipped back into some hypo symptoms but never anywhere near as bad as before I added the liothyronine. When I was on 100 mcg levo only I had terrible symptoms and felt awful. My TSH was about 2.5-3.4 I think. When I went up to 125mcg levo I noticed a small improvement but not much. I tried 150 mcg levo and I felt odd, very tense but still hypo, so I reduced back down to 125 mcg levo and then added liothyronine which was life changing, but my feet were still cold and I remembered the only good thing I noticed about being on 150 mcg levo was that my feet suddenly felt warm for the first time in my living memory. I decided to try 150 mcg again along with 20 mcg liothyronine and I felt great. Eventually I increased my dose to 25 mcg purely for cost effectiveness (50mcg tabs last much longer than taking 4x5mcg tabs but the tabs themselves are a similar price). I did feel slightly over medicated at 25mcg but I ignored it. I had some instances of heart palpitations and irritability/short temperedness which is very out of character for me. Eventually this feeling subsided so I assumed my thyroid function had deteriorated enough for me to need the higher amount. Now I’m taking 175 mcg levo and 37.5 mcg lio I’m noticing the same heart palpitations and irritability. I have no idea what to do though because I feel like lowering my dose will just guarantee that I go back to feeling how I felt two years ago which was no way to live.

TickTockTock profile image
TickTockTock in reply toZazbag

The hyper symptoms usually reduce a while after a medication increase because eventually you'll have a corresponding D3 increase. On your current dose with the return of hyper symptoms you'll either stay that way or, and far more likely, your D3 will increase again and you'll feel hypo again. If you're lucky you might find that your body can no longer increase the D3 high enough and you'll find a 'sweet spot'. But the fact that it's happening is a sign that the medication is higher than your body wants it to be and it feels like it has to protect itself.

A healthy thyroid excretes approximately 100mcg of thyroid hormone, but it's over the course of 24 hours, not in one massive influx. In some people, a large single dose of thyroid medication can trigger the protective mechanism of an increase is D3. Your body doesn't know that this high dose of medication is just going to happen once a day, it can assume that this occurrence may happen at any time and it needs to protect itself from a hyper state. Breaking up the tablets and dosing four times per day will decrease the D3 from being triggered, it will also likely improve the TSH a little which will raise the D1 and D2 levels and you'll experience better conversion of T4 to T3 across your body.

Eventually you'll get very good at recognising small changes in thyroid levels and how they effect you. Any amount of T4 over 25mcg in one dose makes me feel worse. I now have 75mcg tablets that I break in four pieces and I take 4 - 5 of those pieces in a day. Always 4, but if it's been a stressful day I take 5 because I can feel little changes in my emotions and heart that make me feel like I need to take the 5th dose. A working thyroid is able to make small changes to how much thyroid hormone it makes depending on what is happening in your body.

Originally I started with a 200mcg T4 in one dose and 10mcg of T3 twice per day. It worked great, but slowly I noticed that the T3 went from lasting 11.5 hours to 5 hours before I started feeling cold again, so I went up to 30mcg dosed over three doses every 8 hours. Felt fine, but then it slowly stopped working so I went up to 40mcg, felt good and then eventually felt worse, went up to 50mcg. And on it went until I was on 80mcg of T3 dosed over multiple times per day, plus that one 200mcg T4 tablet as it was the only way I could keep my temperature normal and stop the other symptoms.

Eventually my hypo symptoms were so severe I was becoming hypothermic. It was really scary and I am not someone who is easily frightened. The doctor could not explain it as my TSH was undetectable and my T4 and T3 above the top of the range, but I had serious hypothyroid symptoms and for a short while my temperature was in the 34Cs. What it matched symptom wise was something called consumptive hypothyroidism, normally that's seen in infants and it's rare and they die. I was almost hospitalised because the doctor had no idea what was going on as I should have had severe hyper symptoms on such a high dose but I no hyper symptoms whatsoever.

By the stage that hospital was being considered I was on 100mcg of T3 per day and 200mcg of T4. Then I started researching deiodinase enzymes, which my endocrinologist didn't even have any working knowledge of other than having heard of them, didn't actually know what they could do though. So that day I stopped taking T4 and took 120mcg of T3 for several days. That was the only T3 dose that stopped they hyperthermia and raised my temperature back up to a high 35C. After a few days my temperature was in the low 36Cs. So I cut back the T3 slowly for the next fortnight. I was feeling hypo still but not really badly anymore by then. I started up on 50mcg of T4 and was by then on 60mcg of T3 over three doses per day. I stayed like that for a month whilst I kept researching and found out the size of the dose could trigger a D3 increase.

I started to split the T3 again from 20mcg doses into 10mcg doses, after I had stopped doing that months back because 10mcg had stopped working for me. That helped and I slowly worked down from 60mcg to 30mcg and felt increasingly better. It was hard to decrease the dosage because I would feel tired and cold for several days during the last few hours of the dose wearing off as I was spacing the doses further apart whilst I waited for the D3 to decrease. I eventually realised I couldn't go any lower than 30mcg of T3 and so I started to play with the T4. I found that 50mcg was triggering a D3 increase and ensuing hypo symptoms after playing around with dosage sizes for about 6 weeks.

I had got hold of 100mcg tablets by then and was breaking them into 50mcg and dosing once per day (50mcg) total with three doses of 10mcg of T3 (30mcg total). I felt pretty good, warm enough, but I would get tired and cold and grumpy with it by the tailend of a T3 dose and they were only lasting 6 hours. I knew that originally they lasted 11.5 hours when I had first started taking them and I still wasn't feeling as good as I did when I originally started on T4 and T3.

I then had 75mcg T4 tablets and broke them in half and that was when I started feeling really significantly better. But I wanted to feel like I did when I first started taking the medication. So I started breaking the T4 and T3 into four pieces from the advice of someone here, approx 18mcg of T4 per dose and 5mcg of T3 per dose. Within a week I no longer needed as much T3, it just lasted and did its job.

Now I'm on 75-100mcg of T4 dosed over 4-5 times per day depending on how I feel, and 10mcg of T3 dosed at 5mcg twice per day. I feel warm, I'm losing weight, I can think clearly, my body is no longer swollen or constipated, my hands don't shake, etc.

My experience backs up the link I sent you where the writer explains that the work of the deiodinase enzymes it's proving to be more important than the blood result thyroid levels. If I keep my dosages low enough so that it doesn't peak highly in my blood I then don't cause my body to create an overabundance of D3 and so though my hormone levels are low, they're being converted well by D1 and D2 and I feel really good. I feel like I can handle life and go back to work after being unable to work due to extreme fatigue and brain fog for years.

TickTockTock profile image
TickTockTock

You can read about deiodinase enzymes here: restartmed.com/thyroid-deio...

The one thing he leaves out in that link is that it can help to split the doses because for some people having a large amount of thyroid hormone dumped into their blood stream can trigger detrimental changes in deiodinase enzymes.

I was on 200mcg T4 and 20mcg of T3 for a while and felt fantastic for six months and then I started feeling hypo again. The only explanation I've come across is that as my body healed it was better able to respond to the hormones in a more 'normal' way, and in a healthy body that was an unessecarily high hormone level. Deiodinase enzymes are like the accelerator and the brakes in a car, with D3 being the brakes.

The heart palpitations are associated with hyperthyroid symptoms. The body will try to protect itself from hyperthyroidism by creating more D3. It's also possible for some cells in the body to be hyper whilst some are hypo, so that just makes people feel extra weird, but that's getting into genetic problems. Irritability can be a symptom of either hypo or hyper but if you're also getting palpitations it's likely hyper related.

As your hormone levels are lower now, despite the higher dose, it's not going to be an absorption problem, the most likely, and common, problem is a D3 increase. The D3, if high enough can take the medication you just took and convert it useless rT3 and T2 at an alarmingly fast rate which is evidenced by the lowered hormone levels in your results and the change from warm feet back to cold and the hyper symptoms showing up.

Even though the pituitary is sensitive to changes in thyroid hormone levels it can take a while for the changes to filter all the way down the system to effect noticeable changes in the deiodinase enzymes. Every change I made to lower the D3 with medication changes took between 1-2 weeks to be felt.

I'll come back and detail how I cut my medication down and felt better.

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