Latest Results: After having my dose cut from... - Thyroid UK

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Boatin profile image
Boatin
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After having my dose cut from 125mcg to 75mcg after a slightly over medicated blood result last year, Ive been trying to persuade my GP to increase my Levo after continuing to feel lousy.

I'm now on 75mcg and 100mcg on alternate days, but looking at my latest result this has barely made a difference, and my awful brain fog and dream like feeling is still just the same.

I've been pressing the GP to get my TSH down to 1. Do you think this is reasonable and should I be asking an increase to 100 daily now?

I'm currently taking Thorne Basic B complex and vitabiotics D3 2000 iu daily - both stopped a week prior to blood test. Test done in morning and last dose of levo 24 hrs prior.

Vitamin D still too low even though I'm also out in the sun a lot- any recommendations for a larger dose? And by which manufacturer?

Ferritin consistantly at top of range in lots of blood tests but GP doesn't seem concerned or bothered! Would Hemochromatosis result in a higher result than this?

As ever many thanks for any feedback given.πŸ™‚

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SeasideSusie profile image
SeasideSusieRemembering

Boatin

Was your dose reduced from 125mcg to 75mcg in one fell swoop or was it 2 x 25mcg reductions? Dose changes should only be in 25mcg increments.

I've been pressing the GP to get my TSH down to 1. Do you think this is reasonable and should I be asking an increase to 100 daily now?

It may not be possible to persuade a GP that a TSH of 1 is the aim but you could use the following information:

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw

You can obtain a copy of the article which contains this quote from ThyroidUK:

tukadmin@thyroiduk.org

print it and highlight Question 6 to show your GP.

So those are showing that you can go much lower if necessary and with a TSH of 2.4 and FT4 just 42% through range with FT3 36.49% through range, and yes, you should have an increase in your dose of 100mcg now, retest in 6-8 weeks and you may need another increase after that but make small increases to see what difference they may, it doesn't have to be 25mcg.

I'm currently taking Thorne Basic B complex and vitabiotics D3 2000 iu daily - both stopped a week prior to blood test. Test done in morning and last dose of levo 24 hrs prior.

Just FYI, Vit D doesn't have to be stopped before a test, just take it after the test on the day. This then gives you a measure of what your dose is achieving.

There are better makes than Vitabiotics. I believe they are tablets which are the least absorbable form of D3 and they must be taken with fat for the D3 to be absorbed.. Maybe look at a D3 oil based softgel (my choice is Doctor's Best, clean supplement with no additives whatsoever and easy on the budget). Maybe increase to 3,000iu daily for now, retest in October to see how your level is then.

Also, do you take magnesium, one of the important cofactors when taking D3? This is needed because it helps the body convert D3 into it's active form.

The other important cofactor is Vit K2-MK7, do you take this? D3 aids absorption of calcium from food and Vit 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. 90-100mcg K2-MK7 is enough for up to 10,000iu D3. My choice is Vitabay or Vegavero as they both use the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Your B12 is low even though you are taking Thorne Basic B. It works out at 463pg/ml and 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."

If you want to convert BH's B12 pmol/L to pg/ml then you multiply the result by 1.355 - 342pmol/L = 463pg/ml.

For now maybe add a good quality B12 sublingual (my choice Cytoplan cytoplan.co.uk/vitamin-b12-... ). Just use one bottle and continue with the B Complex as well. This should hopefully take your B12 level to at least 550pg/ml then just continue with the B Complex.

Boatin profile image
Boatin in reply to SeasideSusie

Thank you so much for that info, I'll digest and have a look at the links

Yes they dropped my dosage in one go and I've been struggling to get back to some normal since.

I don't take any other supplements apart from the Vit D and Thorne B12.

Would you take the VitD, K2, Thorn B12 and the drops at the same time but away from my Levo? Should I also be taking magnesium as my levels where at the high end of the range?

I did have a spray for the Vit D as I knew it was more easily absorbed but it gave me headaches.

Many thanks for taking the time to reply - it's really appreciatedπŸ‘ πŸ™‚

SeasideSusie profile image
SeasideSusieRemembering in reply to Boatin

Boatin

Would you take the VitD, K2, Thorn B12 and the drops at the same time but away from my Levo?

D3 and K2 are both fat soluble and will compete for fat for absorption. This is a problem if taking tablets and capsules if they don't contain any fat. If the supplements are oil based or contain fat, eg D3 oil based softgels, the K2-MK7 with the ground linseeds, they they have their own fat and could be taken together, if they don't then take at different times with some dietary fat for absorption. There shouldn't be a problem with taking the Thorne B Complex and the B12 at the same time, or even with the D3 and K2.

Should I also be taking magnesium as my levels where at the high end of the range?

Testing magnesium is unreliable. About 99% of magnesium is stored in bone, muscles and soft tissues, leaving about 1% in the blood. So testing what's in the blood isn't giving an accurate picture of our magnesium status.

A red cell magnesium test is the better indicator of magnesium status, not the standard serum magnesium test; however, this is an expensive test and requires phlebotomy and isn't included in the test bundles.

If you are concerned there are articles about signs/symptoms of too much magnesium, eg

healthline.com/health/food-...

I did have a spray for the Vit D as I knew it was more easily absorbed but it gave me headaches.

It's not right for everyone. I wont use the sprays because they tend to contain a lot of excipients and I dare say your headaches were caused by something your body doesn't like in the inactive ingredients. I take a few supplements so the excipients can add up which is why I try to find supplements with the least amount or none at all.

Boatin profile image
Boatin in reply to SeasideSusie

Thanks for the link.....I now have a medical excuse to eat dark chocolate!! πŸ‘πŸ™‚

tattybogle profile image
tattybogle

Hi Boatin. if you were only slightly overmedicated then chopping dose in half from125 to 75 was unnecessarily brutal.

I became quite badly overmedicated on 150mcg with many symptoms of overmedication that made me feel very unwell ,as well as blood tests that confirmed it..... but a reduction of just 25mcg to 125mcg was enough to fix the problem .

If you felt well enough on 125mcg and did not have any symptoms of overmedication ?... and it was only reduced due to TSH being a little low and /or fT4 being a little high .. then a slight reduction to 112.5mcg might have been all that was needed.

even if you did have symptoms of overmedication then a 25mcg reduction would have been a much more sensible first step than chopping your dose in half.

So , I think it's quite likely that you would be fine on 100mcg or even 112.5mcg.

How long have you been on 75 /100 alternate now ? .. as long as it's been about 8 weeks , and those results above were done after at least 6 weeks on that dose ,then i think it's perfectly reasonable to ask GP to try 100mcg again.

if you look at my reply to this post : ( 4th reply down) healthunlocked.com/thyroidu... you will find 4 or 5 references advising GP's to keep TSH lower than about 2/ 2.5 in all patients on levo... so you may find some of them helpful to lean on your GP with.

And also the fact that you dose was reduced so drastically when the usual recommendation is to adjust by no more than 25mcg at a time may help your argument to get it put back up a bit .

it sometimes makes them more comfortable saying yes to an increase, if you ask " i'd like to have a 'trial' of 'x' dose to see if i would feel a little better on it without my bloods going out of range?" ... a 'trial' is less of a commitment for them to make if they are nervous of the consequences of 'overmedicating' their patients . See my reply to this post : (3rd reply down) for a list of posts discussing the 'risks' of low TSH , if you want to be prepared for the inevitable 'we worry about your heart and bones' conversation with GP. healthunlocked.com/thyroidu...

or..... if all else fails, (and you have enough tablets) you can 'do it first, and ask later '

ie try a slight increase for 6 /8 weeks , then ask for a blood test "because you've tried an increased dose of 'x' for 6 weeks and found it made you feel better" ...then when they've seen the blood test , assuming all results are still in range .. they have no grounds to say no .. so they should increase the prescription to that dose if you are feeling better.

Boatin profile image
Boatin in reply to tattybogle

Hi Tattybogle

Thanks for the info, I do try and carefully word what I say - to make them think it's them making the decision πŸ˜‰.

They dropped my dose after I had a private test as I'd been having odd pains in my head and feeling a bit 'wired. But it was done my telephone appointment with a GP I'd never had dealings with before and basically sounded like he needed to get off the phone!

I'm hoping the results speak for themselves but my surgery is a nightmare to get an appointment with - just trying to speak with a receptionist is a task in itself.

Unfortunately I don't have spare tablets as they only issue on a monthly basis - which is probably why they are so busy!

Many thanks for the guidance

tattybogle profile image
tattybogle in reply to Boatin

yes the monthly prescription for levo is ridiculous isn't it .. presumably means the chemists get paid more, and it must 'cost' more over all when you account for everyone's time .

I could increase my dose with a bit 'extra' cos i used to get 3 monthly prescriptions .. My new practice only gives 2 months , which is ok but if they ever try this silly game of giving me 1 month i'm going to be ... urm ... 'working away in the Outer Hebrides for 2 months at a time ' ? and unable to collect monthly .

I now make sure i always have a big enough stash to do what i want anyway, within reason.

Some people have been known to 'accidentally leave their packet of tablets on holiday and need a replacement' :)

humanbean profile image
humanbean

You might find this useful :

healthunlocked.com/thyroidu...

Having a TSH of 2.4 is not "normal". It is well over the peak of the graph.

The source for the graph is :

web.archive.org/web/2004060...

The source for the table is Table 3 in the following link :

eje.bioscientifica.com/down...

Boatin profile image
Boatin in reply to humanbean

Thanks for that info ill take a look πŸ‘

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