How long till I feel better: New here Taking... - Thyroid UK

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How long till I feel better

Emmie7 profile image
8 Replies

New here

Taking 150mcg Levothyroxine and diagnosed in 2012

When will I feel better on this

Symptoms list

Pins and needles

Wrist pain

Dark and pale patches on skin

Eyelid puffiness

Hard stools

Periods becoming irregular

Depression

Cold intolerance

Cold hands and feet

Weight gain

Breathlessness

Sighing a lot

Thyroid results I have been told are thyrotoxic

T3 taken away in August

Felt better on this

Result on the 150mcg Levothyroxine below

TSH 0.03 (0.2 - 4.2)

FREE T4 21.2 (12 - 22)

FREE T3 4.3 (3.1 - 6.8)

Thank you

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Emmie7 profile image
Emmie7
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8 Replies
SeasideSusie profile image
SeasideSusieRemembering

Can you give us a bit more information please Emmie7

Why was your T3 taken away in August?

Was it your GP or endo who did it?

What were your results when you were on Levo + T3 and what dose of each were you taking?

Have you had thyroid antibodies tested - do you have Hashimoto's?

**

On 150mcg Levo :

TSH 0.03 (0.2 - 4.2)

FREE T4 21.2 (12 - 22)

FREE T3 4.3 (3.1 - 6.8)

Your conversion is poor, you need your T3 back to bring your FT3 up to nearer the top of it's range. If T3 is added back in you could reduce Levo slightly.

**

Some of your symptoms are indicative of low nutrient levels. Have you had the following tested, if so please post results with their reference ranges and say if you are supplementing and what dose

Vit D

B12

Folate

Ferritin

Full blood count and iron panel to see if you have iron deficiency anaemia.

Emmie7 profile image
Emmie7 in reply toSeasideSusie

T3 taken away because endo said he was no advocate of T3

Endo took it away

2 sets of results when on 10mcg T3 and 75mcg Levothyroxine are

TSH <0.02 (0.2 - 4.2)

FREE T4 20.6 (12 - 22)

FREE T3 5.6 (3.1 - 6.8)

TSH <0.02 (0.2 - 4.2)

FREE T4 20.3 (12 - 22)

FREE T3 4.7 (3.1 - 6.8)

THYROID PEROXIDASE ANTIBODIES 298.5 (<34)

THYROGLOBULIN ANTIBODIES >1300 (<115)

SeasideSusie profile image
SeasideSusieRemembering in reply toEmmie7

Emmie7 T3 taken away because endo said he was no advocate of T3

Was that the same endo who prescribed it in the first place. It's so unfair. If it's a different endo then if you're doing well on T3 and he can see that, there's no reason to take you off it just be cause he's no advocate of T3.

**

On 10mcg T3 and 75mcg Levothyroxine:

Did you feel better when your results were

TSH <0.02 (0.2 - 4.2)

FREE T4 20.6 (12 - 22)

FREE T3 5.6 (3.1 - 6.8)

(these look pretty good)

than when your results were

TSH <0.02 (0.2 - 4.2)

FREE T4 20.3 (12 - 22)

FREE T3 4.7 (3.1 - 6.8)

Nothing really wrong with these other than your FT3 is a bit low.

**

By the way, is your endo saying you are thyrotoxic because your TSH is suppressed?

**

THYROID PEROXIDASE ANTIBODIES 298.5 (<34)

THYROGLOBULIN ANTIBODIES >1300 (<115)

Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. You can swing from hypo to hyper and back to hypo again as the antibodies wax and wane. Dose adjustments can be made during these temporary swings, and readjustment when things go back to normal.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. 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.

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

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

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Gut and absorption problems tend to go hand in hand with Hashi's. Do you have any vitamin and mineral results?

Emmie7 profile image
Emmie7 in reply toSeasideSusie

Due repeat bloods for thyroid next week ready for endo consultation and I tihnk thyroid levels are lower now because of how I feel and how my symptoms are gradually coming back

Emmie7 profile image
Emmie7 in reply toSeasideSusie

Taking 210mcg ferrous fumarate once a day for iron anaemia, 800iu vitamin D once a day for vitamin D deficiency and 1 folic acid tablet a day for folate anaemia

FERRITIN 61 (30 - 400)

MCV 76.2 (80 - 98)

MCHC 388 (310 - 350)

HAEMOGLOBIN 112 (115 - 150)

MCH 28.1 (28 - 32)

RBC COUNT 4.45 (3.80 - 5.80)

WBC COUNT 6.13 (4.00 - 11.00)

HAEMATOCRIT 0.42 (0.37 - 0.47)

IRON 7.2 (6.0 - 26.0)

TRANSFERRIN SATURATION 15 (10 - 40)

FOLATE 2.2 (2.5 - 19.5)

VITAMIN B12 137 (180 - 900)

VITAMIN D 25.5 (25 - 50 DEFICIENCY. SUPPLEMENTATION IS INDICATED)

SeasideSusie profile image
SeasideSusieRemembering in reply toEmmie7

Emmie7

FERRITIN 61 (30 - 400)

MCV 76.2 (80 - 98)

MCHC 388 (310 - 350)

HAEMOGLOBIN 112 (115 - 150)

MCH 28.1 (28 - 32)

Taking 210mcg ferrous fumarate once a day for iron anaemia

You are being treated incorrectly for your iron anaemia. Check out the following to discuss with your GP and ask for the appropriate treatment.

NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines)

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

FOLATE 2.2 (2.5 - 19.5)

VITAMIN B12 137 (180 - 900)

1 folic acid tablet a day for folate anaemia

What about your B12 deficiency? Is your GP doing nothing about that? Have you been tested for Pernicious Anaemia? With your B12 level you probably should be on B12 injections. You should not be supplementing with folic acid until further investigations into your B12 deficiency have been carried out.

Please post on the Pernicious Anaemia Society forum for further advice then discuss with your GP healthunlocked.com/pasoc Quote your Folate, B12, Ferritin and Iron, MCV etc results, mention what you have been prescribed, and also mention any signs of B12 deficiency you may be experiencing which you can check here b12deficiency.info/signs-an...

If your GP has ignored your B12 result he has been extremely negligent.

**

VITAMIN D 25.5 (25 - 50 DEFICIENCY. SUPPLEMENTATION IS INDICATED)

800iu vitamin D once a day for vitamin D deficiency

Again, you are being treated incorrectly. 800iu D3 isn't going to ever raise your level. It is hardly a maintenance dose for someone with a reasonable level.

You are 0.5 away from severe deficiency and you need loading doses. Check the following and discuss with your GP.

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 30 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)."

Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (not a paltry 800iu) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily (not 800iu), 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 City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

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.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

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

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

As mentioned, as you have Hashi's then you could very well have gut/absorption issues which is contributing to these dire nutrient levels. SlowDragon has information and links which can help.

humanbean profile image
humanbean

The doctor who said your results were thyrotoxic has said it because your TSH is below the reference range. As far as doctors are concerned this is all they need to know about your results, and you are at risk of having your meds reduced to try and bring your TSH up higher. This belief amongst doctors keeps hundreds of thousands of people ill.

From the point of view of patients the TSH is irrelevant once treatment is started with Levo or other thyroid hormones. It doesn't tell us anything about symptoms or how well we feel. As far as we are concerned the most important level that indicates how well we feel is the Free T3, which ironically is the test that rarely gets done.

T4 is converted within the body to T3. Some people convert from one to the other with no difficulties, other people have problems. The best ratio between Free T4 and Free T3 is 4 to 1 or less.

Your ratio is 21.2 to 4.3 i.e. 4.9 to 1, in other words you have too little T3. You would probably feel better with less Free T4 and more Free T3, but getting this out of your doctor may be practically impossible. (Free T4 is affected by the amount of Levo you take, Free T3 is affected by how well you convert T4 to T3.)

The other issue people have with thyroid problems is that it affects the stomach - we usually have less stomach acid than normal, and this reduces the amount of nutrients that can be extracted from our food. So we end up with multiple deficiencies which we need to supplement. Do you have any results for iron/ferritin, vitamin D. vitamin B12 and folate? If you do, please post them with the reference ranges.

Edit : I wish my typing wasn't so slow. I see the thread has moved on without me!

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working. Sadly few endo's have any idea about the importance of these nutrients or that Hashimoto's even affects the gut. Certainly little idea or suggestions as to how to gut it. That we have to do ourselves

With Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

scdlifestyle.com/2014/08/th...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

One last point

When you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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