Endo Prescription - advice please: Hi all, I... - Thyroid UK

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Endo Prescription - advice please

Needleandthread44 profile image

Hi all,

I visited an endocrinologist for the first time yesterday with my Dad (72 yrs). I'd really appreciate any feedback from this forum on the prescription he has been given. We went to see an endo privately because we were at a bit of a loss with GP test results which were always just showing normal. The GP advised going privately to get a more in depth investigation - not just thyroid but overall. My Dad's main symptom is fatigue, also aches and pains.

His levo was increased from 75mcg in June to 100mcg following a raised TSH (4.68)

His most recent test results from Medichecks are:

TSH 1.2 (0.27 - 4.2) (his GP's test showed 0.9 the same week)

T4: 15.6 (12-22)

T3: 4.47 (3.1 - 6.8)

Serum Folate >19.8 (3.89 - 26.8) (had previously been on 5mg Folic acid for 4 months following a test result showing 3.4. Same happened last year his folate was right down to 3.1 and then increased to 20 after being on the 5mg of Folic acid but then gradually declined)

Active b12: >150 (had trialled intramuscular injections paid for privately) GP test result showed serum b12 at 1033 (191-663)

Serum Ferritin: 197 (not sure)

Vitamin D: 61 (not sure)

Anti TPO: 188

Anti TG: 412

So...........

The GP has prescribed

An increase in Levothyroxine - 100mcg/125mcg alternative days

- 800 Vitamin D3

- To continue taking the 5mg Folic Acid long term

- 100 Thiamine (B1)

- 50 Pyridoxine (B6)

- Intramuscular Hydroxycobalamin B12 - 1 every 3 months.

So my questions are

- overall what do you think of this prescription?

- Should Dad really be taking 5mg Folic acid long term? I asked the endo about whether it is better to take a B Complex - with folate - as in the methylated version and he kind of looked at my blankly and said no that this is what he normally prescribes

- Is there something else that Dad should be taking along with the D3?

- If it were you would you not take the prescribed vitamins and instead take the Thorne basic vitamin B complex??

- Also is there a risk that with the increase in Levo that dad could go hyperthyroid? With his TSH already quite low?

Would greatly appreciate any thoughts/feedback. This forum is a godsend!!

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17 Replies
SeasideSusie profile image
SeasideSusieRemembering

Needleandthread44

When posting results we always need the reference ranges as these vary from lab to lab. I do know Medichecks ranges as long as they've used Eurofins County Pathology or The Doctor's Laboratory to process the tests. They recently seem to have used a different lab which I noticed did have a couple of ranges different fromthe other labs.

TSH 1.2 (his GP's test showed 0.9 the same week) [0.27-4.20]

T4: 15.6 [12-22]

T3: 4.47 [3.1=6.8]

Did your dad do the test as we advise@

* No later than 9am

* Water only before the test

* Last dose of Levo 24 hours before the test

* No biotin, B Complex or any other supplement containing biotin for 3-7 days before the test

Then if so:

TSH - don't worry about the difference, the range is probably different and even if it is very similar the difference in the result can be down to a different time, eating or drinking anything but water, or natural fluctuation.

FT4: 36% through range

FT3: 37% through range

FT4 and FT3 are well balanced and show good conversion; however, those results do show undermedication so it was correct to increase his dose of Levo. Retest in about 8 weeks or so to check levels to see if another increase is suggested.

- Also is there a risk that with the increase in Levo that dad could go hyperthyroid? With his TSH already quite low?

No. He has hypothyroidism so it's a physical impossibility for the thyroid to regenerate and become hypERthyroid although it is possible to be overmedicated. This is why it's important to test FT4 and FT3 to check those levels. It's the FT3 over range that would suggest overmedication. TSH is useful for diagnosis but once diagnosed and on thyroid hormone replacement it is of little use, it is a pituitary hormone not a thyroid hormone, we need to look at the thyroid hormones (FT4 and FT3) to see our thyroid status.

Serum Folate >19.8 (had previously been on 5mg Folic acid for 4 months following a test result showing 3.4. Same happened last year his folate was right down to 3.1 and then increased to 20 after being on the 5mg of Folic acid but then gradually declined)

The problem here is once the folic acid has improved the folate level we don't stop supplementing, we change to a B Complex containing 400mcg methylfolate which should maintain the new level. Stopping altogether just means that the level will drop and most likely end up with folate deficiency again. I don't understand why doctors don't realise this and encourage patients to buy the appropriate supplement to maintain the new level, but then again they're taught very little, if anything, about nutrients so they most likely don't realist - they just treat the deficiency and that's the job done, if it comes back treat it again!

- Should Dad really be taking 5mg Folic acid long term? I asked the endo about whether it is better to take a B Complex - with folate - as in the methylated version and he kind of looked at my blankly and said no that this is what he normally prescribes

If his level gets back up again like before, just go with Thorne Basic B (or other bioavailable B Complex [not containing Vit C as this affects the absorption of the B12 in the supplenment] and make sure it contains 400mcg methylfolate).

Active b12: >50 (had trialled intramuscular injections paid for privately) GP test result showed serum b12 at 1033

Are you sure the Active B12 result showed >50? The range for Active B12 with Medichecks is usually 37.5-188 or 25.1-165. So it should show an actual result because the testing equipment would measure greater than 50.

Active B12 below 70 suggests testing for B12 deficiency so it's imperative that an actual result is given to know whether it is above or below 70.

The GP test is a different test, it is Total B12 and measures the total of unbound (free/active) B12 plus bound B12. We can have a good Total B12 but a low Active B12. The Active B12 test is said to be more useful as it measures what is available for the cells to use.

Vitamin D: 61

- Is there something else that Dad should be taking along with the D3?

The unit of measurement will be nmol/L.

You might want to check out a recent post that I wrote about Vit D and supplementing:

healthunlocked.com/thyroidu...

and you can check out the link to how to work out the dose you need to increase your current level to the recommended level.

His current level of 61nmol/L = 24.4ng/ml

On the Vit D Council's website

web.archive.org/web/2019070...

you would scroll down to the 3rd table

My level is between20-30 ng/ml

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).

So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 3,700iu per day. So you can see that the suggested 800iu is totally inadequate, it is barely a maintenance dose for someone with a good level already and hardly likely to raise his level.

Retest after 3 months.

Once the recommended level has been reached then a maintenance dose will be needed 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. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

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.

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 D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - 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.

Vitabay and Vegavero are either tablets or capsules.

Vitabay does do an oil based liquid.

Vitamaze is an oil based liquid.

With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.

They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.

If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form

natureprovides.com/products...

It may also be available on Amazon.

One member recently gave excellent feedback on this particular product here:

Here is what she said (also read the following replies):

healthunlocked.com/thyroidu...

If your dad takes a blood thinning medication then you are urged to do your own research because there is conflicting information about Vit K. K1 is the blood clotting form but some articles suggest that K2 can also have this effect.

Another important cofactor is Magnesium which helps the body convert D3 into it's usable form.

There are many types of magnesium so we have to check to see which one is most suitable for our own needs:

naturalnews.com/046401_magn...

explore.globalhealing.com/t...

and ignore the fact that this is a supplement company, the information is relevant:

swansonvitamins.com/blog/ar...

Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

Serum Ferritin: 197

This looks like a good result, I belive the male reference range may be 30-400 and it's recommended that ferritin is half way through range.

Anti TPO: 188 (<43)

Anti TG: 412 (<115)

These raised antibody levels confirm autoimmune thyroid disease, know to patients as Hashimoto's. Did you already know this?

Fluctuations in symptoms and test results are common with Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. It would be best to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

- 100 Thiamine (B1)

- 50 Pyridoxine (B6)

- If it were you would you not take the prescribed vitamins and instead take the Thorne basic vitamin B complex??

I don't know why these particular B vitamins have been prescribed and it might be prudent to ask. 50mg B6 is quite a big dose, the recommended dose for long term supplementing with B6 is 10mg as large doses can cause nerve damage and other problems. So does he have a particular need for this amount daily - worth asking the question.

There is probably no harm in the 3 monthly B12 injections but I would double check his Active B12 result. If he can get his B12 injections on the NHS so much the better but paying privately might be expensive. If he needs regular B12 injections then pop over to the Pernicious Anaemia Society forum here on HealthUnlocked as many members there self source B12 at a much cheaper cost than paying for private injections and they can point you in the right direction:

healthunlocked.com/pasoc

DippyDame profile image
DippyDame in reply toSeasideSusie

What a brilliant reply!!

SeasideSusie profile image
SeasideSusieRemembering in reply toDippyDame

Ah, thank you DD, one aims to please 😁

Needleandthread44 profile image
Needleandthread44 in reply toSeasideSusie

Thank you so much!! Apologies - have now added ranges. Also yes the Active B12 was >150! (not 50). Really appreciate the detailed response

SeasideSusie profile image
SeasideSusieRemembering in reply toNeedleandthread44

OK, so the Active B12 test was presumably after a B12 injection? Do you know what his level was before the injection? Did he have symptoms of B12 deficiency?

Needleandthread44 profile image
Needleandthread44 in reply toSeasideSusie

Yes he had a series of b12 injections throughtout May/June so that is why the result is high. Never tested active b12 before now but at one point his total serum b12 was down to 137. When on oral b12 or b12 spray it always stayed around 400. He did notice some improvement when paying for the b12 injections previously. The ones prescribed now will be on NHS once every three months. There should be no issue in taking the b complex alongside the 3 monthly injection should there? Thanks again you are a fountain of knowledge!!!!

SeasideSusie profile image
SeasideSusieRemembering in reply toNeedleandthread44

There should be no issue in taking the b complex alongside the 3 monthly injection should there?

No, we need B Complex when taking B12 to balance all the B vitamins and maintain his Folate level.

Needleandthread44 profile image
Needleandthread44 in reply toSeasideSusie

Thank you again. Truly appreciate all of the information and advice

waveylines profile image
waveylines in reply toSeasideSusie

Wow very comprehensive Seaside Suzie. Fantastic.

DippyDame profile image
DippyDame

We really need reference ranges... please can you edit your post to add these. Tap 'more' to find the edit button

But, last question first! Unless T3 is above the ref range your Dad will not be overmedicated

If we are hypothyroid the chances of becoming hyperactive are physically impossible...

The terms "overmedicated "and "hyperactive" often seem to get confused on here!!

TSH is not a reliable marker for dosing, for a start it can fluctuate during the day.

It is a pituitary hormone not a thyroid hormone, and reflects the overall free normone levels but not that of each one...FT4 and FT3

Without those, accurate thyroid hormone evaluation is impossible

To support thyroid function/ T4 to T3 conversion we need optimal levels of Vit D, vit B12, folate and ferritin

Vit K is usually added with Vit D

betteryou.com/pages/vitamin...

It does sound as if he has been undermedicated....

Once we have those ref ranges you will receive more detailed responses

Needleandthread44 profile image
Needleandthread44 in reply toDippyDame

Thank you! I have added the ref ranges

DippyDame profile image
DippyDame in reply toNeedleandthread44

As suspected your Dad was undermedicated!

Maintain the increased dose of levo for 6/8 weeks then test again... the results will point the way forward

His conversion looks good so no problem there.

Raised antibodies indicate thyroid autoimmune disease.....hormone replacement is the same but a gluten free diet helps many.

SeasideSusie has already given you excellent advice!

Good luck!

Needleandthread44 profile image
Needleandthread44 in reply toDippyDame

Thank you so much!

Jaydee1507 profile image
Jaydee1507Administrator

Your Dad sounds a bit like mine. Wish he would have let me help him. He was hypo and B12 deficient in later life. Ended up horribly anaemic that seemingly nothing treated.

Firstly I'd switch out the folic acid for methylfolte, in a good B complex like others suggest here. Check blood levels and if it's not enough then top it up and keep taking what is helping, do not stop!

Let him have the extra Levo, its highly unlikely to make him go over and will likely help.

Well done for reaching out for your Dad. x

nellie237 profile image
nellie237

I have seen some posts where 5mg Folic Acid is prescribed on repeat........if I remember correctly it is usually when taking Methotrexate.

I agree with SeasideSuzie that you need an explanation for why these have been prescribed.

Needleandthread44 profile image
Needleandthread44 in reply tonellie237

Thank you!!

Hi all

Many thanks for your responses - just an update on where we are.

I contacted the consultant to check the details of the prescription, he said

he didn't need to take Vitamin K2

that he could stay on the 5mg folic acid there would be no harm

that 50mg Pyridoxine was the usual amount he prescribed and there were no issues with any of his patients

and that he would suggest taking the prescription rather than the Thorne B basic complex.

My dad is keen to go with what he says to trial it for at least 3 months but I am a bit concerned having done my own research. The amount of vitamin D is probably not enough as you say seasidesusie but I am more so worried about the calcium issue as he has had kidney stones in the past! I am considering just buying some k2 for him to take. I had also purchased the Thorne B basic vitamins but it is unlikely that Dad will take them until he finishes the prescription. I am going to buy some 400mcg methyl folate and try and get Dad to take that instead of the 5mg folic acid.

As for the 50mg Pyridoxine, it actually says on the side of the box that taking more than 10mg for a long time can cause tingling and numbness!!

Anyway that is just an update on where we are. A million thanks to everyone who responded, this forum is so fantastic.

Just out of interest - has anyone ever gone to see a Nutritionist rather than an Endocrinologist and if so how did you find this?

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