Very confused - should I change treatment or continue trying different Levothyroxine doses

[Goldfinch7]

Hi – I am new to the forum (in fact not used a forum before!), am very confused and really need some advice!

I am 64 and was diagnosed with hypothyroidism (Hashimoto’s) 15 years ago and have been taking Levothyroxine but I don’t seem to be able to find the right dose. When I was first diagnosed, my GP had me switching from 75 mcg to 100 mcg and as I found the 100 too much, I would be dropped down to 75mcg – only to be increased to 100 mcg again. I then went onto HRT and kept to 100 mcg and things seemed to be better. I came off the HRT 4 years ago and the symptoms I experienced on 100 mcg before have returned (my hands shake, I feel jittery, anxious and can’t keep still).. So, I have been to see a private endocrinologist and have ended up doing a lot of trial and error on different doses. He thinks it is a ‘narrow landing zone' that we are aiming for. I am now post-menopausal, but both my GP and endocrinologist have told me the symptoms I get on 100 mcg are menopausal symptoms.

There are confounding issues – I have always taken levothyroxine with breakfast - both the GP and the endocrinologist have been Ok with me doing this as long as I am consistent – after reading the posts here – I am not too sure this correct? Also, for both GP and the endocrinologist I have been told it doesn’t matter on the timings of taking blood tests as long as I am consistent, again from the posts here I am not sure this correct?

For my weight I should be taking about 115 – 120 mcg daily of thyroxine. I am on a gluten free diet.

The dose I am currently trying is alternating 100 mcg (almus brand) and 75 mcg (almus and wockhardt brand) with breakfast which is about 87.5 mcg daily.

Date: 10aug22 – alternating 100mcg and 75 mcg

My results: (for these blood test I followed the recommendations of taking bloods more than 24 hours after taking thyroxine and also the recommendations for testing vitamins).

FSH: 8.8 ( 0.29-4.2) FT3 3.86 (3.1- 6.8); FT4 16.7 ( 12 – 22);

(I do not feel good on this dose; brain fog, walking in jelly feeling and cant focus)

Thyroglobulin antibodies 1,229 (<115)

Ferritin 122 ug/L 122 (13 - 150); Folate serum 4.36 ug/L (>3.89)

Vit B12 – active: 90.1 (50 – 200) vit D : 161 nmol/L ( 50 – 200)

Blood results from varying dose (all the blood tests below were done 2 hours after taking thyroxine)

November 21 100 mcg with water (dose too high)

FSH: 0.22 ( 0.27 - 4.2) FT3 4.6 (3.8 - 6.0 ); FT4 17.89 ( 7.86 – 14.4 ); (this was a different lab)

(I couldnt tolerate this dose – very very shaky, jittery and headaches- cant sit still)

01 Feb 21 75 mcg with food ( dose too low)

FSH: 14.3 ( 0.27 -4.2) FT3 3.5 (3.1- 6.8); FT4 15.5 ( 11 – 21.2) ;

21 March 22 100 mcg with food (dose too high)

FSH: 1.67 ( 0.27 - 4.2) FT3 no data ; FT4 22.6 ( 11 – 21.2);

(This is the dose I have been on for years and I get very shaky hands, jittery body and feel anxious).

8 Aug – alternating dose 100 mcg and 75 mcg ( I did this blood test for comparison with the 10 Aug results above)

FSH: 5.67 ( 0.29-4.2) FT3 3.94 (3.1- 6.8); FT4 19.9 ( 12 – 22);

I am confused as I don’t know what dose I should be on.

I don’t get the shaky hands, jittery and anxiety feelings when I reduce the dose from 100 mcg – so I don’t think these symptoms are due to menopause. But when I reduce the dose slightly from 100 mcg I definitely feel underdosed and get brain fog.

The recommendations seem to be for Levothyroxine the TSH < 1 and for the FT3 to be in the upper half. The only dose that gave me FSH < 1 was 100 mcg with water (and I couldn’t tolerate this dose) but even this dose gave me FT3 in the lower half.

For all my results the FT4 to FT3 ratios are greater than 4 – am I a poor converter of FT4 to FT3?

Should I try 75 mcg with water, or should I ask for a trial of T3?

I am totally confused and also fed up with having to cope with daily symptoms of under or overdosing!

Many Thanks

[SlowDragon Administrator]

Welcome to the forum

Date: 10aug22 – alternating 100mcg and 75 mcg

My results: (for these blood test I followed the recommendations of taking bloods more than 24 hours after taking thyroxine and also the recommendations for testing vitamins).

FSH: 8.8 ( 0.29-4.2)

FT3 3.86 (3.1- 6.8);

FT4 16.7 ( 12 – 22);

(I do not feel good on this dose; brain fog, walking in jelly feeling and cant focus)

Thyroglobulin antibodies 1,229 (<115)

Ferritin 122 ug/L 122 (13 - 150);

Folate serum 4.36 ug/L (>3.89)

Vit B12 – active: 90.1 (50 – 200)

vit D : 161 nmol/L ( 50 – 200)

FSH: 8.8 ( 0.29-4.2)

Presumably you mean TSH?

On levothyroxine TSH should always be below 2

FT4: 16.7 pmol/l (Range 12 - 22)

Only 47.00% through range

FT3: 3.86 pmol/l (Range 3.1 - 6.8)

Ft3 only 20.54% through range

First step is to try taking levothyroxine as recommended….on an empty stomach and nothing apart from water for at least an hour after

Results show you are under medicated and poor conversion

Try taking levothyroxine at bedtime, or in middle of the night can give much better absorption

Retest again after 6-8 weeks

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

Feeling anxious/wired are common hypothyroid symptoms

What vitamin supplements are you currently taking?

You might find it better to split levothyroxine, taking half dose waking and half dose at bedtime

[Goldfinch7 in reply to SlowDragon]

Thank you for your advice!I think anything under 100 mcg will be under medicating for me and I suspected that I was a poor converter.

I am going to try splitting the 100 mcg dose as you have suggested.

I took a summer break from my supplements - this was before I had read the posts here !

So the supplements that I normally take are:

'meno multi support' gives mulit-vitamins and minerals - contains B2, B1, B12, Methylfolate

osteo support and omega3 support and vitamin D

Produced by the natural health practice.

Do you think I should be taking another type of supplement?

[SlowDragon Administrator in reply to Goldfinch7]

meno multi supportnaturalhealthpractice.com/m...

Doesn’t contain methyl folate…contains folic acid

Multivitamins are never recommended on here

Better to just supplement good quality vitamin B complex, a separate vitamin D and separate magnesium

[Goldfinch7 in reply to SlowDragon]

Ah - Ok - on the bottle it said folic acid as methyfolate. Do you think I should be supplementing with Folate ? If so what would you recommend?

Also are you allowed to recommend a brand of good quality B complex?

[helvella Administrator Thyroid UK in reply to Goldfinch7]

This is because of labelling rules.

All folates are listed as folic acid - but the as methyfolate identifies the actual form.

The intent seemed to be to avoid every possible folate substance being identified as if it is an entirely different nutrient. It is clumsy and potentially confusing. But we already often see, for example, B12 listed - followed by "cyanocobalamin", "hydroxocobalamin", "adenosylcobalamin" or "methylcobalamin".

In my view, it would have been better to list as "folate(s)" then the precise form whether folic acid, methylfolate, etc.

[FancyPants54 in reply to Goldfinch7]

You are under medicated on 100mcg. You need an increase in Levothyroxine.

[Jaydee1507 Administrator]

Firstly I'm so sorry you're having a bad time of it. Can't be easy for you.

I can see your Folate is likely not optimal. What are you taking for that, also what B12? people here recommend taking a vit B complex to keep all the B's balanced.

Are you taking your Levo at the same time each day on an empty stomach? Like first thing in the morning an hour before food or coffee? I see you have said you are taking with food sometimes and that can affect absoption. Could be an issue.

Taking Selenium and zinc can help convert to T3.

Just my initial thoughts. I'm sure the experts will be along soon.

[Goldfinch7 in reply to Jaydee1507]

Hi JayDee - thank you for replying,

I stopped taking my supplements for the summer - which I dont think I should have done !The Meno support that I normally take contains Folacin (Folic Acid as Methylfolate) - 400 μg;

Vit B1, B2, B3, B5, B6, and B12 (b12= 25 μg) . It also contains zinc and selenium.

The osteo support that I normally take also contains zinc.

Should I be taking more Folate or B12 ?

[Lalatoot]

Goldfinch you can split your dose. This is gentler on the body. I take mine morning and bedtime.

[Goldfinch7 in reply to Lalatoot]

HI - thank you - l will definitely be trying splitting the dose!

[Hookie01]

Hi, I take the following doses daily -125, next day 100, next day125, next day 125 and so on 100, 125,100, 125, 125 and so on. I have to write put a time table so i don't forget what day is what. Its the only dose I've manged to settle on. It really is trial and error. Good luck.

[Goldfinch7 in reply to Hookie01]

thank you!

[Popoff]

I am sorry to hear about your difficulties. Many of us experience the same kind of issues and keep trying to find the “ideal” dose which most of the time does not exist, and we hover between being under and overmedicated. But eventually you will find a kind of state steady or a band within which you will feel more comfortable. I know there is always the temptation to change the dose but that in itself creates more issues, given that Levothyroxine stays in our system for 6-7 days, so today’s symptoms may reflect today’s dose as well as the dose of the last few days.

Some further observations:

1. I assume that when you write FSH in your post, you actually mean TSH! I think this is what you mean.

2. It seems that small dose changes of your dose (+/- 25mg) lead to big changes in your TSH and thyroid function. Maybe you could try a 12.5 mg change so you could take 87.5 mg (you can split and 25 mg tablet) and then see how that dose affects you and what your blood tests results show.

3. The 21st March test results place your FT4 above the reference range (113.7% of the reference range). The test was done 24 hours after your last levothyroxine dose, so your actual FT4 after taking your medication will probably be 20% above what your FT4 was (may be around 27 or 156% of the reference range; this is an approximation and not an exact number). So, on that dose you are likely overmedicated. Next time you test, you may wish, if possible, to test your Total T4 also in addition to FT4 and FT3.

4. When on T4 (Levothyroxine) thereby it is normal for the FT4 to be at the top end of the range and the FT3 in the middle or lower end depending on absorption levels.

5. Many of us obtain better results by taking Levothyroxine on an empty stomach, about an hour before breakfast, although there are people who have no problem taking Levothyroxine with food. It is worth trying to see what works for you. There are people who actually do better by taking their dose before going to sleep. This is something to check what is appropriate for you. Also try to get the same brand of Levothyroxine all the time. For some of us, changing the brand does affect us differently. If you have changed the brand, try to think if there was a brand that made you feel better or worse.

6. You state that according to your weight you should be taking 115-120 mg of Levothyroxine daily, but your test results show that a lower dose places your FT4 above the range so increasing the dose may not help you. Of course, the formula for estimating the dose based on weight, depends on our absorption level with different sources suggesting a T4 dose of - body weight x 1.5 or 1.6 or 1.7.

7. If everything else does not produce a better outcome, you may wish to try some T3 (about 10% of your best T4 dose) and see how that helps.

I hope that the above and posts by other contributors help you feel better. Good luck.

[Batty1]

Try splitting your dose. I had to do this because I would get shaky.

[Goldfinch7 in reply to Batty1]

definitely trying splitting the dose - thanks!!

[TammyAnnMajka]

I'm going through the same thing! Even ended up getting palpitations so bad I went to the ER. I'm also menopausal and started having more issues with dosing but I know it's the medication. Estrogen especially high estrogen blocks Levothyroxine, no that I'm in menopause I believe my body is taking more of the Levo, I couldn't find the right dose like you. So I've been cutting my 112 Synthroid in half and taking half in the morning and half at bedtime. So far the overmedicated feelings have gone away and I'm sleeping better.

[Goldfinch7 in reply to TammyAnnMajka]

This is what I am going to try - so its encouraging to hear that it is working better for you!

[apelila]

Don't take thyroid hormone with food. Take it first thing in the morning on an empty stomach and wait at least 30 min to eat. 1 hour for caffeine. It's going to be VERY hard to balance your thyroid if you don't also balance your sex hormones. Your FT3 is way too low hence the brain fog. I suspect you are not converting but doc is running the right test to determine that, a separate dose of T3 would better serve you. You have hashimotos which is a autoimmune disease, separate from being hypothyroid and you should address it... it's a lot of work and most likely doc will NOT help you with that.

[Goldfinch7 in reply to apelila]

what do you suggest I do to address the hashimotos .... is it diet related? My thyroglobulin antibodies are 1,229 - the reference range is > 115. These have always been high since I was diagnosed - should I try to bring this down again is it diet related?

(my Thyroid peroxide antibodies are ok <9 - the reference range is < 34).......

[apelila in reply to Goldfinch7]

Mine is not diet related. I went AIP when I was diagnosed, and it made no difference at all. Then I tested and supplemented as needed for D3, B12, iron. Added selenium. Tried LDN for 3 years... antibodies still high. Triggers for autoimmune are most likely: infections, parasites or toxins which are expensive to test and treat. But if you don't start somewhere, your thyroid will continue to be destroyed and worse... you will develop more autoimmune diseases. Going on an anti-inflammatory diet and making sure you have the right nutrition is the easiest thing to do, but most likely is not all that is triggering your autoimmunity.

[Goldfinch7 in reply to apelila]

Thanks - this is really helpful as this its something I hadnt considered!