exhausted: Hi everyone. Feeling totally exhausted... - Thyroid UK

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DylanA profile image
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Hi everyone. Feeling totally exhausted I opted to go for private blood tests as GP insisting TSH was the only test needed. Results came back as follows:

TSH 0.7 T3 3.2 T4 17

Peroxidase antibodies 489.9

Anti thyroglobulin antibodies 5.2

I spoke to a GP about the scary antibody levels and was told that as I have thyrotoxicosis my antibodies will always be high. Am I looking in the wrong direction linking my tiredness with my thyroid.

vitamin D level was 58

B12 190. Foliage B9 8.7

Also putting on weight for no reason and like many of you fed up with being told it’s all menopause.

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DylanA
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SeasideSusie profile image
SeasideSusieRemembering

DylanA

Did you do the test as we advise:

* No later than 9am

* Water only before test

* Last dose of Levo 24 hours before test

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

How much Levo do you take?

Do you take any supplements?

Please add reference ranges that came with your results, these vary from lab to lab so we need them to be able to interpret your results.

Is your B12 Active B12 or Total B12. Big difference. With Active B12 that result would show you are over range, with Total B12 it would show you are likely to be B12 deficient.

Folate, again could be very low of reasonable depending on range.

What was your ferritin level?

DylanA profile image
DylanA in reply toSeasideSusie

Hi - yes complied with advice.

These are the ranges:

Vitamin D. 50-200 result 58 nmol/L

Vitamin B12. 138-652. Result 190 pmol/L

Foliage vitamin B9: 7-46.4 result 8.7 nmol/L

TSH: 0.35 - 4.94 Result 0.7 ulU/mL

Free T3: 2.4 - 6. Result 3.2 pmol/L

Free T4: 9-19. Result 17 pmol/L

Peroxidase antibodies: 0 - 5.61

result 489.9 IU/mL. !

Antithroglobulin antibodies: 0 - 4.11

Result 5.2 IU/mL

This is all the info I have. Should I be worried about my antibody levels or is that just telling me what I already know. Ie hypothyroidism.

I am currently on 100mg Levothyroxine

Many thanks

SlowDragon profile image
SlowDragonAdministrator in reply toDylanA

So your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease

If you haven’t had coeliac blood test done yet GP should test now BEFORE considering trial on strictly gluten free diet

Was test done early morning and last dose levothyroxine 24 hours before test

FT4: 17 pmol/l (Range 9 - 19)

Ft4 is 80.00% through range

FT3: 3.2 pmol/l (Range 2.4 - 6)

Ft3 only 22.22% through range

Shows poor conversion rate of Ft4 to Ft3

For GOOD conversion rate we need OPTIMAL Vitamin levels

Your vitamins are currently terrible. Extremely common with Hashimoto’s

Very common to need to supplement vitamin D and vitamin B complex continuously to maintain optimal vitamin levels

Request GP do full iron panel test for anaemia including ferritin too

SeasideSusie profile image
SeasideSusieRemembering in reply toDylanA

DylanA

Peroxidase antibodies: 0 - 5.61 result 489.9 IU/mL. !

Antithroglobulin antibodies: 0 - 4.11 Result 5.2 IU/mL

Should I be worried about my antibody levels or is that just telling me what I already know. Ie hypothyroidism.

The elevated antibody levels confirm that the cause of your hypothyroidism is autoimmune, ie Hashimoto's, which is the most common cause of hypothyroidism.

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.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Some of yours are low.

Vitamin B12. 138-652. Result 190 pmol/L = 257pg/ml

B12 is particularly low. This is the Total B12 test 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."

Some people with B12 in the 300s have been found to need B12 injections.

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

If you don't then you could supplement with a B12 sublingual along with a good quality B Complex until your level reaches over 500, once at that level you can drop the B12 sublingual and just continue with the B Complex.

Suggestions for B12 supplements which include two forms of bioactive B12 - methylcobalamin and adenosylcobalamin which you might want to check out:

Cytoplan sublingual B12 lozenges

cytoplan.co.uk/vitamin-b12-...

Nature Provides sublingual liquid

amazon.co.uk/Bioactive-METH...?

Note that the Nature Provides supplement contains a much higher dose than the Cytoplan one.

Folate vitamin B9: 7-46.4 result 8.7 nmol/L

This is very low, not deficiency but extremely low, only just within range. Eating folate rich foods may help, also supplementing with a good quality, bioavailable B Complex.

I have used Thorne Basic B for a long time and always been happy.

If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.

When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).

As mentioned above, do not start a B Complex until further testing of B12 has been carried out (if necessary) and B12 injections or supplements started.

Continued below due to character restriction.

SeasideSusie profile image
SeasideSusieRemembering in reply toSeasideSusie

Vitamin D. 50-200 result 58 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.

Your current level of 58nmol/L = 23.2ng/ml

On the Vit D Council's website

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

you would scroll down to the 3rd table

My level is between 20-30 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. The nearest you can buy is 4,000iu. You could take 4,000iu daily (28,000iu per week) but it's often cheaper to buy 5,000iu and take 6 days per week (30,000iu).

Retest after 3 months.

Once you've reached the recommended level 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...

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.

Was Ferritin tested? Low ferritin and/or low iron bring their own symptoms, one of which is fatigue, and a good ferritin level is needed for conversion of T4 to T3.

TSH: 0.35 - 4.94 Result 0.7 ulU/mL

Free T3: 2.4 - 6. Result 3.2 pmol/L= 22% through range

Free T4: 9-19. Result 17 pmol/L = 80% through range

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.

Your FT4 and FT3 results show poor conversion of T4 to T3. This could be due to your low nutrient levels, we need optimal levels for thyroid hormone to work properly and good conversion to take place.

Optimising your nutrients is your first priority, once these are optimal if your conversion is still poor it would be worth considering adding some T3 to your Levo.

DylanA profile image
DylanA in reply toSeasideSusie

thank you so much for all this info. I am seeing a GP in 2 weeks and you have given me lots to bring up with her.

shaws profile image
shawsAdministrator in reply toDylanA

I will be interested in how the GP responds as many don't seem to have been taught about how best to diagnose/treat those patients who have a dysfunctional thyroid gland.

DylanA profile image
DylanA in reply toshaws

I will let you know! I have been thinking hard about how to structure the conversation in a way that doesn’t make me sound like I am self diagnosing or claiming to know more than them!

shaws profile image
shawsAdministrator in reply toDylanA

I'm sure you will do well.

SlowDragon profile image
SlowDragonAdministrator

Low B12 and low folate

Assuming you are not vegetarian or vegan?

B12 is so low GP should test for Pernicious Anaemia before starting on B12 injections or daily supplements

Do you have Low B12 symptoms ?

If yes request testing for Pernicious Anaemia

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

Otherwise start on daily B12 supplement

After about 2 weeks, addin a separate Vitamin B complex

Daily B12 drops 

healthunlocked.com/thyroidu...

Or

B12 sublingual lozenges 

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

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

Two weeks after starting B12 start supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......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

 

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.

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

healthunlocked.com/thyroidu...

DylanA profile image
DylanA in reply toSlowDragon

thank you so much for all your advice and info. A lot to take in. I will definitely be investigating the pernicious anaemia question as my mum suffers from it and could be familiar

shaws profile image
shawsAdministrator in reply toDylanA

Ensure you request a blood test for Pernicious Anaemia.

My mother had this condition (I also have it) but after a few years with a 3 monthly injection her GP told her that 'blood is fine and you don't need any more injections'.

Both my sister and I thought that was 'good'.

Little did we know what was ahead as Mum developed stomach cancer due to the withdrawal of B12 injections.

nhs.uk/conditions/vitamin-b....

I have frequent B12 injections.

DylanA profile image
DylanA in reply toshaws

Yes I definitely will as my mum has the same. Many thanks for your reply

SlowDragon profile image
SlowDragonAdministrator in reply toDylanA

Absolutely definitely test BEFORE starting on any B vitamins

Make sure to tell GP that your mum has PA

And get iron panel and coeliac blood tests done too

Meanwhile working on improving low vitamin D will help

SlowDragon profile image
SlowDragonAdministrator

Low vitamin D

Aiming to improve to at least around 80nmol minimum and over 100nmol maybe better

Low vitamin D

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Only add one supplement at a time waiting 10-14 days before adding another

Starting with vitamin D……then likely B12 (if GP not agreeing to B12 injections)

Then vitamin B complex…..followed by magnesium

SlowDragon profile image
SlowDragonAdministrator

lastly

It’s extremely common to develop Food intolerances

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels 

Low vitamin levels affect Thyroid hormone working 

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common. 

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies 

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

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