Maintenance dose of Levothyroxine??

[cc120]

When your blood tests and/or your feeling well on the Levothyroxine dosage you are on, do you then change to a maintenance dose?

[helvella Administrator Thyroid UK]

No. If you are doing well on, say, 100 micrograms a day, then keep taking 100 micrograms a day.

A working thyroid pumps out a similar amount every day. And that is what you need to replace (so far as possible) from the tablets you take.

Whereas, with something like iron deficiency, you can be on a medium to high dose for however long it takes your levels to recover. Then you can drop to "just enough" to keep you there.

[cc120 in reply to helvella]

Thank you helvella. How will you know what is a just enough dose?

[helvella Administrator Thyroid UK in reply to cc120]

SeasideSusie has answered in large measure as I would have done. Plus, feeling right.

When I had been on levothyroxine for quite a while, I went to see my GP. He was amazed at the way I rather bounced in. That probably made him comfortable with the fact that he had prescribed levothyroxine at what was quite a low TSH by current standards.

[SeasideSusie Remembering]

cc120

If you are taking, say for argument's sake, 150mcg Levo, and your test results come back at a level where you feel well, then that is the right dose for you and you stay on that dose. So whatever dose you are on, if you feel well, that is the dose you need. Once stable then it's normal to have thyroid function tests once a year.

[cc120 in reply to SeasideSusie]

Thank you SeasideSusie. Would you say sweating profusely when physically active and sleeping over 10 hours signifies you need to increase dose?

[SeasideSusie Remembering in reply to cc120]

I have never been troubled by profuse sweating, I have been hypothyroid for 45 years. Diminished sweating is a symptom of hypothyroidism, increased sweating is a symptom of hyperthyroidism. Excessive tiredness is a symptom of hypothyroidism.

What dose of thyroid replacement hormone are you taking and what are your current test results (including referece ranges) for

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

If we have the full picture we may be able to give more useful answers.

[cc120 in reply to SeasideSusie]

Hi SeasideSusie

Was taking 75mcg at the time the following blood tests were taken on 27/03/19, but as was sleeping for up to 20 hours I have increased to 150mcg as this site stated (drugs.com/dosage/levothyrox... that for severe Longstanding Hypothyroidism (I was undiagnosed for 10 years) can adjust dose in increments of 12.5 to 25 mcg/day every 2 to 4 weeks. When I was finally diagnosed, approx 4 years ago, my TSH had reached 8.1 (0.27 to 4.20)

27/03/19

TSH 0.07 (0.27 to 4.20)

FT4 19.1 (10.8 to 25.5)

FT3 3.5 (3.1 to 6.8)

Thyroid antibodies

- Tested a few years ago as negative, not tested since

Vit D 23 (50 to 174) started supplementing D3 5000iu K2 100

B12 510 (180 to 999)

Folate Not done this time

Iron 17 (14 to 30)

Ferritin 3.02 (2.00 to 3.60)

Transferring binding capacity 76 (50 to 85)

When I attempted to increase iron levels a couple of years ago, taking furrous fumerate 210 x day for 5 months, iron decreased from 12 to 9, but ferritin doubled the upper range level.

[SeasideSusie Remembering in reply to cc120]

cc120

drugs.com/dosage/levothyrox...

That's for initial doses when first diagnosed. It goes on to say

Dose should be individualized with regular monitoring of clinical status and laboratory parameters.

I think your GP has let you down.

Here is your problem:

TSH 0.07 (0.27 to 4.20)

FT4 19.1 (10.8 to 25.5)

- this is 56.46% through it's range

FT3 3.5 (3.1 to 6.8)

- 10.81% through range

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well. Your TSH is OK, your FT4 is on the low side and your FT3 is dire and shows that you don't convert T4 to T3 well enough. It's low T3 that causes symptoms.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

Dr Toft has recent published a new paper which says that some people benefit from the addition of T3

rcpe.ac.uk/sites/default/fi...

In my opinion you need the addition of T3.

Thyroid antibodies - Tested a few years ago as negative, not tested since

Worth repeating, both Thyroid Peroxidase and Thyroglobulin antibodies. One negative doesn't exclude autoimmune thyroid disease aka Hashimoto's. You would need a few negative results over time. Also, you can have Hashi's without raised antibodies.

Vit D 23 (50 to 174) started supplementing D3 5000iu K2 100

Presumably the unit of measurement if nmol/L? In which case this is Vit D deficiency and your GP should be prescribing loading doses. If you confirm that it is nmol/L I will give you information about the NICE Clinical Knowledge Summary so you can discuss this with your GP. Magnesium is also needed when supplementing with D3, it's required to convert the Vit D into it's active form.

B12 510 (180 to 999)

What is the unit of measurement? If ng/L or pg/ml it's a bit low, according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Folate Not done this time

What was your level previously?

Iron 17 (14 to 30)

Ferritin 3.02 (2.00 to 3.60)

Transferring binding capacity 76 (50 to 85)

When I attempted to increase iron levels a couple of years ago, taking furrous fumerate 210 x day for 5 months, iron decreased from 12 to 9, but ferritin doubled the upper range level.

Your serum iron is very low in range. Iron is complicated and I can't suggest anything for this. Has your doctor said anything or have you been under a haematologist?

[cc120 in reply to SeasideSusie]

Thank you very much SeasideSusie.

I had another blood test by urologist on 1 July 2019, who said will test thyroid as I was sweating so much. Awaiting results.

My GP is directed by my endo, whose letter to my GP following the last appt & the test on 23.3.19, was:

' Currently on 75mcg, she has not had any recent blood tests. She tried to increase her Thyroxine to 100 mcg, but was not able to tolerate. She has not noticed any improvement in the fatigue. (I had told her was an improvement but not much). she also complains of insomian and recently she had UTI and she is finding difficult to control her bladder. I have checked her baseline bloods. Her FT4 etc, (as per list provided above). Her iron and B12 was normal but vitamin D was only 23. She needs Vitamin D replacement. Her full blood count was normal. Her blood pressure was 123/84mmHg. I will see her in the clinic in six month's time.'

T3 - Can you message a good source for T3. I have requested a prescription of T3 from endo, via GP to fax letter as endo never received letters and had to wait 2 years for follow up appt.

Antibodies - It took some convincing first time GP had Thyroid Peroxidase and Thyroglobulin antibodies tested. Endo never tested them. I will try again with GP but she seems to think I am a hypocondriac or have an ulterior motive in pretending to be unwell.

Vitamin D - Vit D 23 (50 to 174) nmol/L- can you let me know dosage of magnesuim please?

Vitamin B12 - B12 510 (180 to 999) ng/L.

In 06 Jan 2014

, Before supplementation B12 260

(190– 663 ng/l), Folate 8.1

(4.60 – 18.70 ug/l)

16 Sept 2014

to 09 Dec 2014 - gave myself B12 injections, cyanocobalamin 1000mcg x day,

- During this time - B12 >1999

(190– 663 ng/l), folate >20

(4.60 – 18.70 ug/l)

On 16 June 2015

, 6 months after no supplementation:

B12 1380

(190– 663 ng/l), Folate 6.1 (4.60 – 18.70 ug/l)

On 18 Sept 2015

, 8 months after no supplementation:

B12 >2000

(190– 663 ng/l), Folate 6.4

(4.60 – 18.70 ug/l)

30 Jan 2017 blood test: B12 1579 ng/L (190 to 660); Folate 5.8 ug/L (no reference)

Iron - have never been referred to an haematologist. The letter to GP from endo states iron and B12 levels normal ?!?!!? Should I try convincing GP to refer me?

[SeasideSusie Remembering in reply to cc120]

cc120

T3 - Can you message a good source for T3. I have requested a prescription of T3 from endo, via GP to fax letter as endo never received letters and had to wait 2 years for follow up appt.

I can't recommend one but if you make a new thread asking for recommendations of a supplier you can then contact myself or another Admin to see if we have any feedback on them.

However, before taking T3 it's essential to get all nutrient levels optimal.

Also, taking T3 tends to lower FT4 so I think it might be worth an increase in Levo first to try and raise your FT4 level. If you haven't been able to tolerate an increase in the past, presumably 25mcg, then try increasing slowly by 12.5mcg, or even lower, at a time.

but vitamin D was only 23. She needs Vitamin D replacement

Is your GP prescribing the loading doses? He should follow the NICE treatment summary for Vit D deficiency: cks.nice.org.uk/vitamin-d-d...

"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.

Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Once these loading doses have been completed you will need a reduced amount so you should make sure that you are retested after you have finished the loading doses so that you know how much you should then take going forward. Most doctors, if they continue prescribing, only give 800iu daily which isn't enough. If GP wont retest then do this privately (link below) and post your new result at the time for members to suggest a new dose to bring your level up to what's recommended by the Vit D Council/the Vit D Society - which is 100-150nmol/L - and then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Your GP won't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

thefamilythathealstogether....

drjockers.com/best-magnesiu...

can you let me know dosage of magnesuim please?

You take the dose suggested on the pack, it's usually somewhere between 350-450mg.

Check out the other cofactors too (some of which can be obtained from food).

Vitamin B12 - B12 510 (180 to 999) ng/L.

As you have previously supplemented to a good level and now it has reduced again, I imagine taking a good B Complex containing methylcobalamin will improve your level. The methylfolate included will keep your folate at a decent level. Good brands recommended here are Thorne Basic B and Igennus Super B, both contain the bioactive forms of ingredients.

The letter to GP from endo states iron and B12 levels normal ?!?!!? Should I try convincing GP to refer me?

The letter states normal because they're within range, but that doesn't mean optimal (which is essential for us hypos).

These are optimal levels for an iron panel, according to web.archive.org/web/2018083...

Serum iron: 55 to 70% of the range, higher end for men

- yours is 18.75% through range

Saturation: optimal is 35 to 45%, higher end for men

- you don't have this result

TIBC (total iron binding capacity) or Transferrin: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron

- I'm not sure what your "Transferring binding capacity" is but you can see it's fairly high in range

Ferritin: Low level virtually always indicates need for iron supplementation; high level with low serum iron/low saturation indicates inflammation

or infection; high level with high serum iron and low TIBC indicates excess iron; over range with saturation above 45% suggests hemochromatosis - yours if 63.75% through range so it's neither low nor high.

Should I try convincing GP to refer me?

Your serum iron is low in range but will be considered normal so a referral is possibly not likely. I think you should ask your GP what he suggests to try and improve your serum iron but point out that your ferritin appears to be adequate. As I said, iron is complicated, and I can't suggest anything.

[cc120 in reply to SeasideSusie]

Thank you SeasideSusie.

I will post for T3 sources.

Vitamin D - I will email GP cks.nice.org.uk/vitamin-d-d... and follow up with an appt.

Will request retest after you have finish the loading doses.

Will the GP add K2 and magnesium or should I add myself?

B12 - I will begin supplementation with B Complex containing methylcobalamin (Thorne Basic B and Igennus Super B).

What dosage would you recommend?

You would have thought an endo would know that this needs to be optimal for someone with hypothyroidism!!!

My % iron saturation: 22% (15 to 50)

Iron - I will try asking GP what she suggests to try and improve my serum iron, pointing out that my ferritin appears to be adequate.

[SeasideSusie Remembering in reply to cc120]

Will the GP add K2 and magnesium or should I add myself?

Doctors know little to nothing about nutrients so wont know that cofactors are needed when taking D3. This is something we have to supply ourselves.

B12 - I will begin supplementation with B Complex containing methylcobalamin (horne Basic B and Igennus Super B).

It's one or the other of those brands, not both. Thorne Basic B suggested dose is 1 x capsule which gives 400mcg methylcobalamin and 400mcg methylfolate. Igennus is 2 x tablets which gives 900mcg methylcobalamin and 400mcg methylfolate. You could, of course, only take 1 tablet if you felt you needed less. I have only used Thorne Basic B and have been very happy with it.

My % iron saturation: 22% (15 to 50)

So this is on the low side.

[cc120 in reply to SeasideSusie]

Thank you SeasideSusie.

B12 - I was just noting the two diff recommended brands

Iron - so 22% saturation just indicates further body not utilizing iron well?

[SeasideSusie Remembering in reply to cc120]

Iron - so 22% saturation just indicates further body not utilizing iron well?

I don't know, as I said iron is complicated, if it's not simply low ferritin then it's beyond me I'm afraid which is why I often suggest discussing with GP.

[NWA6 in reply to cc120]

You could be ever so slightly over medicated with these two symptoms but Hypo and hyper can often mimic each other. If either symptom bother you, embarrass or impact on your life you have two options, increase or decrease meds. If I were you I’d decrease first, see how I feel then either stay on that dose or back up to what you were on and if necessary increase.

Do it slowly though, so for instance if I’ve needed to decrease I’ve done 175/150 every other day. Maintain for 6wks then 175x3 150x4 or 175 x2 150 x5. You get the drift.

[cc120 in reply to NWA6]

Thank you Paula6, I was sweating as much if not more when I was on 75mcg for a few months.

[NWA6 in reply to cc120]

Well I’m not that surprised to hear. Do you know what one of my worst symptoms were of under medication?? BO!! Body odour! 😩 It was so embarrassing, hubby assured me that it was mostly me that could smell it but did acknowledge that it was there. I had to shower twice a day and use a paste (homemade vinegar and bicarbonate mix) I had no wet patches, nothing to show that I was sweating. So I know it’s not the same but I can empathise 😔

Is it time to look into T3?

[cc120 in reply to NWA6]

Thank you Paula6, I have tried T3 in the past but had to procure from the web. I think I might have increased too quickly but was to woolly headed to really take store of whether it helped or not.

Have requested T3 from endo and waiting to hear back. I think I read that they can't prescribe this anymore?

[humanbean]

Sweating and insomnia could be adrenal/cortisol related. Too much or too little cortisol can cause all sorts of problems for people trying to normalise their thyroid hormone levels.

There are ways and means of improving cortisol levels, depending on whether they are too high or too low, but it might be that you need better thyroid hormone levels before you can improve cortisol, OR you might need to improve cortisol before you can achieve better thyroid hormone levels.

I'm thinking specifically of your low in range Free T3, but the balance between Free T4 and Free T3 needs to be right for you. When that balance is right your cortisol levels may become more normal by themselves (I'm assuming they aren't currently okay based on your symptoms), or you may still have to help them along in other ways.

[cc120 in reply to humanbean]

Thank you humanbean.

What are the ways to improve cortisol levels, increase and/or decrease, please?

[humanbean in reply to cc120]

To lower cortisol I have used adaptogens - specifically Holy Basil in my case, but some people do well with ashwaghanda, I think.

Some articles on the web make adaptogens sound miraculous - they are alleged to be able to lower cortisol if it is too high and increase cortisol if it is too low. I don't believe in miracles. I do believe adaptogens lower cortisol when its high, but I don't believe it can increase it.

In the case of low cortisol that needs increasing (I am NOT talking about levels which are dangerously low and need help from a doctor), the main ways of improving levels is to decrease stress - and in fact this helps people with high cortisol too. Most people think of stress as being something imposed from outside, i.e. a bullying boss, a child which won't sleep and therefore destroys your own sleep, lack of money etc... But stress can be self-imposed as well, and those causes can be helped :

1) Try to get plenty of sleep and try to stick to a routine of going to sleep and getting up at the same time. As a life-long insomniac myself, I know that one can be impossible.

2) Eat enough. So many people with hypothyroidism get in the habit of eating far too little in the hope of controlling weight gain - and I think it rarely works. Not eating enough stresses the body. Another thing to point out is that a low fat diet is not healthy. There are only three macronutrients - carbs, fat and protein. The body can survive without carbs but can't survive without fat and protein. Also, naturally sourced saturated fats are not harmful despite what we've been told for decades.

3) Get vitamins and minerals optimised.

4) Get thyroid hormone levels optimised.

5) Do some exercise but not too much that you deplete your thyroid hormones, particularly your T3 levels. Too little and too much exercise are both stressful.

6) The adrenal glands need sufficient salt and other electrolytes to function properly. Look up a recipe for an adrenal cocktail and include one or more of them per day.

7) Do something fun at least once a week.

8) Do something relaxing for a little while every day.

9) For low cortisol people sometimes do well with adrenal glandulars or adrenal cortex supplements.

[cc120 in reply to humanbean]

That's very helpful humanbean. Thank you.

Would you say, from my symptoms/test results, that I am high / low or mixed cortisol levels?

[humanbean in reply to cc120]

I can't tell, and nor can anyone else, based only on symptoms. There is a lot of overlap in symptoms between high and low cortisol. Not only that, people can be high at some points in the day and low at others. You would need to do a saliva test to find out one way or the other.