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Hi I am just wondering - how long does it take to feel better on 25mcg levo? I feel tired all the time, energy feeling like it's going down as time goes on, cold feet and been breathless. Diagnosed hypothyroid 2010, have always been on 25mcg. Thank you

Dec 2017

TSH 8.3 (0.2 - 4.2)

Free T4 12.9 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

Jan 2012

Cortisol 341 (140 - 700)

Jan 2017

TPO antibody 708.5 (<34)

TG antibody 269.3 (<115)

Aug 2016

Anti tissue transglutaminase antibody 2 (<1)

40 Replies
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Mei80,

Has your doctor never suggested an increase?

Have you had any tests? Do you have any test results (including reference ranges, if possible)?

The standard starting dose is 50 micrograms - reduced to 25 micrograms in those with heart issues, or older (different ages are quoted).

Where are you? In the UK?

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Never had an increase suggested, I will include thyroid tests now. I am based in UK

thanks

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Theoretically when diagnosed as hypothyroidism the aim is a TSH of 1 or lower, with a Free T4 and Free T3 in the upper part of the range. B12, Vit D, iron, ferritin and folate also have to be at an optimum so that our body functions as it should do.

Unfortunatley few doctors appear to know, or even understand, anything about dyfunstional thyroid glands.

So, on this forum members mainly Do It Themselves and recover.

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Hi Mei80 :) I'm still on a big learning curve about hypothyroidism but from everything I've read so far on these forums, 25mcg is a very small dose and is unlikely to achieve much at all. At the very least you should have been retested six weekly after starting this dose and your dosage increased until you were on an optimal dose. I understand that typically that can be around 100-200 mcg. I'm not surprised you've not felt any improvement! :O

I'm actually sat here with my jaw dropped open that you've been stuck on that dose for so long. Did your doctor never re-test or follow this up?

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I have had follow up bloods every 6 - 8 weeks but never had my dose increased

Thanks

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Have you ever had any test to check your Adrenal Function also?

Did any Doctor give you a reason for only prescribing 25mcg?

When you put your results on here, please include dates of tests, normal ranges in brackets and any comments.

If you haven't had blood tests to check levels of :

Vitamin D

Calcium

B12

Folate

and Ferritin

then I would ask GP for them asap.

ALSO

Ask if you ever had Thyroid Antibodies tested. If not ask for them too. (TPO, Tg).

When was last time you had Liver & Kidney blood tests?

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Hi I had cortisol checked 5 years ago and my cortisol was what I thought low

Jan 2012

Cortisol 341 (140 - 700)

It wasn't done with me fasting or unstressed which I have read should have happened

No reason for why I am on only 25mcg after all this time

Jan 2017

TPO antibody 708.5 (<34)

TG antibody 269.3 (<115)

Will post vitamin and mineral results

Liver and kidney function last checked a year ago will post these too

Thanks

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Your raised Antibodies confirm you have :

Hashimoto's Autoimmune Thyroiditis .

This has caused your Hypothyroidism.

Make sure to ask your doctor to test for Nutrients levels as above , also.

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ps

Have you been told you have any heart conditions or any other conditions?

Or COPD or Asthma?

On any other medication?

Why is doctor doing Thyroid Function blood tests every 6 to 8 weeks for 7 years and then not acting upon results?

Very strange, don't you think?

x🐥

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I have low heart rate and a family history of heart disease, no COPD or asthma or taking any other medication.

I think GP is worried about my low weight

Thanks

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So, are you very underweight?

Do you eat well?

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Hi not underweight, just struggling with putting weight on and making it stay there. I have 3 meals a day so yes I eat well

Thanks

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Wonder why doctor is concerned then?

I think most of us Hypos gained unexplainable weight (due to slowed metabolism). However I have "met" a few people on here who actually lost weight with Underactive Thyroid.

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I've just noticed your Anti tissue transglutaminase antibody test result.

Have you been told that you have Celiac's disease then?

Are you on a strict Gluten free diet?

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Some do, many don’t. Hypothyroidism has many symptoms. Not everyone has all of them, and some hypo people have none, just low hormone levels and slower metabolism.

I never gained a bunch of unexplainable weight and I know of many others who haven’t either. I did gain 5ish pounds of what was mainly water weight in 5-6 months after being diagnosed and before I started medication. I’ve never been overweight or thin. More average, muscular and fit. Once my thyroid levels improved and my metabolism increased, I went back to 129. My biggest symptom and struggle has been very low bodily temperature, pains and intolerance to excerxise, taking days of recovery. I have Hashi’s, too.

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Believe you need to have bloods done Minus the levo as even a small amount can change reading/ Levo should not be increased/decreased any any more than 25mcg (at a time......... but starting you and leaving you on 25mcg seems wrong!

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I feel so tired all the time

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Hi 11asia1, I just took a quick look at your profile and see you have joined the forum just today so am guessing this is your first post. Welcome :) You might want to start a new post of your own so that you get replies to any specific questions you have. The tiredness is horrendous, isn't it.

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Care to write your own post instead of putting it on mine as it will get lost? Thanks

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25mcg isn't even a standard starter dose. Unless frail or elderly patient should be started on 50mcg dose

Dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range.

You are very likely extremely under medicated.

This causes extremely low vitamin D, folate, ferritin and B12

Have you had these tested? If so can you post results and ranges.

Low vitamin levels stop Thyroid hormones working.

Presumably you have high thyroid antibodies? The fact you are having dose checked every 6 weeks. Most are lucky if it's checked once a year.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Is this how you do tests

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

Low vitamin levels stop 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

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

Are you by any chance, slim or petite? Thin Hashimoto's patients seem to struggle even more to get correct treatment. GP's believe we must all be fat to be hypo. But many really struggle, like coeliac patients, to keep weight up.

This is because, like coeliac's, the gut is so badly affected nutrients aren't absorbed

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I am slim and petite

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Suspected as much

Get your vitamin levels tested and ask for full testing for coeliac disease

Post your thyroid test results and vitamin results and ranges when you have them on new post

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Thyroid results included in post

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All tests done early morning and fasting and leaving off thyroid medication for 24 hours

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Is there another GP you can see at the practice? Have you always only seen same one

These results need immediate and serious attention

For a start the Anti tissue transglutiminase antibody result is almost certainly positive for coeliac disease

This was done in Aug 2016. You should have had endoscopy within 6 weeks of that result to confirm it and then strictly gluten free diet

celiac.org/celiac-disease/u...

Most patients with coeliac disease loose weight or struggle to maintain weight as gut is so badly affected and can not absorb nutrients

Strictly gluten free diet is essential but not until confirmed by endoscopy. You need to push to get this done as soon as possible

Why has nothing been done?

Second

With coeliac or gluten intolerance vitamin levels are almost certainly extremely low. You need vitamin D, folate, ferritin, B12 and magnesium testing urgently

Third

Your thyroid results show you are seriously under medicated for Hashimoto's.

The aim of thyroid replacement hormone (Levothyroxine) is to start on dose (usually 50mcg) and increase in 25mcg steps until TSH is between 0.2 and 1 and FT4 towards top of range and FT3 at least half way in range

Retesting 6-8 weeks after any dose change

Your GP has been extremely negligent

Can you take supportive friend or family member along with you to get sorted

You need endoscopy ASAP

Vitamins tested

25mcg dose increase in Levo, retesting in 6 weeks, and likely several more increases over coming months/years

You can say you have taken advice from Thyroid UK, the NHS recommended thyroid support group (but don't mention Internet forums)

Come back and let us know how you get on

With Hashimoto's you are entitled to free prescriptions (in case GP not told you that either)

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If getting endoscopy and/or colonoscopy and if checking for celiac disease, if you’ve gone gluten free, you must start eating gluten again for the biopsy to be correct. Some calll it “the gluten challenge”. It’s multiple weeks of eating gluten again.

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Thank you I have results of vitamins and minerals

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Suggest you put them on new post where more people can comment

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You are desperately undermedicated, TSH should be under 1 and free T4 and free t3 in the top quarter of their ranges. Ask your GP for a dose increase right away. If refused, see another GP. 25 mcg is a starter dose for the elderly, frail and heart disease patients. You should have had your dose increased every 6 weeks until bloods in optimum ranges.

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Or at least over half range on both ft3 and ft4, closer to 3/4 on ft3, but not over. This is where people report the least symptoms. Easy to go hyper if in upper 1/4 range. Ideal range varies a bit per person. For me, if both my ft3 and ft4 were ever as high as being in top quarter of range, I’d be raging sick with hyper symptoms. I was pretty hyper with just my FT3 being just at 3/4 range, while my FT3 was just over half.

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You are undertreated. You probably need a dose close to the full-replacement dose. The T4-only full replacement dose is approx. 1.7 micrograms per kg body weight. You should be aiming for: FT3 about 75% up in range, and FT4 at least 50% up in range. Don't let the doctor use TSH to decide what the correct dose is; TSH isn't a good diagnostic method, and it's even worse for determining dose.

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BTW, did the doc do the TPO and TG antibody tests? If your hypothyroid is caused by autoimmunity, you should know that, since it is sometimes possible to get rid of autoimmunity.

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Jan 2017

TPO antibody 708.5 (<34)

TG antibody 269.3 (<115)

Not sure if I have autoimmune, been told negative by GP

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That result is very definitely Hashimoto’s

Your antibodies are extremely high

If your GP thinks that result is negative they should not be practicing as a GP, they haven’t got a clue

See a different GP urgently

You have autoimmune thyroid disease (also called Hashimoto’s)

To be negative for Hashimoto’s TPO must be less than 34 and TG less than 115

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You are autoimmune, and obviously your GP is clueless. There are a whole bunch of alternative docs on youtube who discuss antibody reduction. Also, you might seek out the books by Izabella Wentz, one of which talks about the root cause of thyroid autoimmunity. It is likely that you have a gut health issue (my autoimmunity was launched by gluten enteropathy).

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Understand, my doctors just tell reception to tell me, 'normal, no action ' to stay in 25 or even half it to 12.5 . ................................

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Then you need to get copies of results and take control

Get your vitamins tested and antibodies too if not been done

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'Done'

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Have lovely eve

All will wait xx

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You are seriously underdosed. If you don't want your health to be seriously harmed you have to change your doctor. Our Heart and Brain need the most T3 hormones as do the millions of T3 receptor cells. Levothyroxine is T4 only and has to convert to T3 which is the only Active Thyroid Hormone.

50mcg is a starting dose and we used to get increases to bring doses between 200 to 400mcg prescribed. Nowadays we are restricted to keep results in a range and doctors have absolutely no knowledge how unwell we can be if our thyroid hormones are not at an optimal.

Your TSH at 8+ is far too high when the aim is sufficient thyroid hormones to lower TSH to 1 or below and Free T4 and Free T3 in the upper part of the range, not middle or lower.

Your doctor should do a Full Thyroid Function Test - not just TSH and T4 but:-

TSH, T4, T3, Free T4, Free T3 and I note you have thyroid antibodies which mean you have an Autoimmune Thyroid Disease called Hashimoto's - the commonest form of hypothyroidism.

If GP wont do all of these you can have the ones not tested through a private lab and we have two. They are home pinprick tests.

GP has to test B12, Vit D, iron, ferritin and folate.

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

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

Going gluten-free can help reduce the attack of the antibodies of the thyroid gland.

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