Help needed please: I am new, please help my TSH... - Thyroid UK

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Help needed please

SammieD profile image
5 Replies

I am new, please help my TSH is 70.5 (0.2 - 4.2) FT4 12.7 (12 - 22) TPO antibody 1300 (<34) I take 25mcg levothyroxine diagnosed 2012 thankyou

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SammieD
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cjrsquared profile image
cjrsquared

SammieD we need more information. Why are you only on 25mcg of levothyroxine which is not even a treatment dose. Have you been on different doses in the past? If you have only been on 25mcg since 2012 your doctor is grossly negligent, or has something else been happening?

Just to add raised antibodies mean you are positive for autoimmune hypothyroidism, also called hashimoto’s disease.

SammieD profile image
SammieD in reply to cjrsquared

Always been on 25mcg

cjrsquared profile image
cjrsquared in reply to SammieD

Ok. 25 mcg is a starting dose for the elderly of those with an underlying cardiac condition, it is sub therapeutic not a treatment dose. You should have had a repeat blood test after 6 weeks and levothyroxine increased in 25 mcg increments, then repeat blood tests etc until TSH was around 1 or clinical symptoms had improved. On that regime it often takes about 6 months to reach a treatment dose and feel better. As you have positive antibodies you have hashimoto’s disease, which causes 90% of hypothyroidism in the uk. This is where the body produces antibodies which attack and destroy the thyroid over time, leading eventually to requiring a full replacement dose of hormone. There is some research that suggests going gluten free even if not gluten intolerant can slow down and reduce antibody flare ups.

It is also important to have vit b 12, vit d, ferritin and folate checked as these are often low in hypothyroidism meaning that our bodies are not able to utilise levothyroxine ( also called t4) a pro hormone by turning it into t3 the active hormone at cellular level.

You need to urgently change doctors and require a dose increase and to follow the regime for repeat bloods at 6 weeks. Ask your gp to do the additional blood tests then start a new post so others can advise.

I appreciate you just feel dreadful at present but once you start to improve read up more on hashimoto’s and the importance of good nutrition. Good luck.

Clutter profile image
Clutter

SammieD,

You are very undermedicated. GP needs to increase dose to 75mcg and thereafter in 25mcg increments until TSH is 0.2 - 1.0.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

It takes 7-10 days for a Levothyroxine dose increase to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

You should have a follow up thyroid test 6-8 weeks after increasing Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

SlowDragon profile image
SlowDragonAdministrator

Good grief. See another GP urgently.

How long since this test was done?

What has GP said or done?

Standard starter dose is 50mcgs. Bloods retested after 6-8 weeks after each dose increase.

dose should be increased in 25mcg steps (retesting 6-8 weeks later each time) until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Your GP has been extremely negligent to leave you like this

Insist on 25mcg dose increase in Levothyroxine immediately

Highly likely to have extremely low vitamin levels as result

Have you had vitamin D, folate, ferritin and B12 tested? If so add results and ranges.

If not insist on these being tested and also blood test for coeliac disease. This will encourage them to test vitamins

Vitamins will need improving with supplements if too low

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

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

Ask GP for coeliac blood test first

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...

thyroidpharmacist.com/artic...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne:
tukadmin@thyroiduk.org

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