New member feel very alone could use some advice

[Jiko]

Hi, I was diagnosed hypothyroid in 2012 and my current dosage is 75mcg levothyroxine. I was previously taking 150mcg. I feel very alone with being underactive and my symptoms are so bad every day it is very distressing. Constipation, joint pains, feeling cold, dizziness, hair loss, eyes looking baggy and black, eyebrows thinning, swollen thyroid, losing appetite. I am 32 but feel like 92. Any advice appreciated.

OCT-2017

TSH 7.31 (0.2 - 4.2)

FREE T4 13.8 (12 - 22)

FREE T3 3.0 (3.1 - 6.8)

[crimple]

You are under medicated and it is no wonder you feel awful. TSH is too high for someone on levo (should be 1 or less) and T4 and T3 are way too low. Do you have any results for Antibody tests, Vit B12, VitD , iron ferritin and folate. If vits etc are low your body cannot use the levo and if you have antibodies you need to try a Glutne free diet. Who decided to reduce your levo so drastically, by half?

[Jiko in reply to crimple]

Hi I have antibodies results below.

Thyroid Peroxidase antibodies 770.5 (<34)

Thyroglobulin antibodies >1100 (<115)

GP decided to reduce my dose

No idea what to do about vitamins and minerals, they are a complete mess at the moment

[humanbean]

Why was your dose halved?

[Jiko in reply to humanbean]

Hi GP reduced it because of TSH 0.03 (0.2 - 4.2) and Free T4 20.9 (12 - 22)

[SlowDragon Administrator in reply to Jiko]

TSH is largely irrelevant on Thyroid hormone replacement. But GP probably freaked at it being too low

Without testing FT3 as well it doesn't look like you were over medicated

FT4 was in range.

Now you are very under medicated and need 25mcg dose increase. Retesting after 6-8 weeks

Repeating this until TSH is around one and FT4 towards top of the range and FT3 at least half way in range

Likely now you have very low vitamin levels

Ask GP to test vitamin D, Folate, ferritin and B12

If these are too low we can not use the thyroid hormones

Also very likely you have Hashimoto's (autoimmune thyroid disease)

Have you had thyroid antibodies tested? If high this is Hashimoto's

[Jiko in reply to SlowDragon]

Thyroid Peroxidase antibodies 770.5 (<34)

Thyroglobulin antibodies >1100 (<115)

Sorry Free T3 is 4.1 (3.1 - 6.8)

[Baobabs in reply to SlowDragon]

If doctors don't know, why on earth don't they damn well find out? It can't be that difficult when so many of us on this forum have! Utter frustration and annoyance heartfelt with all those struggling with this disease.

[crimple]

So you have Hashimoto's disease but most docs don't like the word and know nothing about the disease and you vits etc are likely to be low. So either get tested by medichecks, used by a lot of people on here (offers on a Thursday) or ask GP to test those vits etc already mentioned. Also GF diet does make a big difference to a lot of people on here including me. Sorry there is a lot to learn, especially when GP is such a ..........!

[SlowDragon Administrator]

Is there another GP you can see? This one has really messed you up.

Essential to get vitamins tested.

Going strictly gluten free is likely to help. But you must be on higher dose of Levo so that a TSH is around one and FT4 towards top of range. Plus vitamins likely to need major supplementing.

With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones 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...

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 [e-mail]. print it and highlight question 6 to show your doctor.

[SlowDragon Administrator]

When getting any thyroid blood test, they 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 and most consistent results