TSH LEVELS

[SusieR68]

I have had my thyroid levels check again this week and the results are T4 13.5 (11.0- 23.00)

TSH 13.1 (0.27 - 4.5)

I m taking 50 mg Levo daily and have been told this is ok and they will retest in 3 months? Isn't the TSH still too high?

Thanks

[greygoose]

It's much too high, should be one or under. And 50 mcg is just a starter dose. It should have been increased after six weeks. It really is a bad idea to go for another three months with that high TSH. I think you need to see another doctor, because this one is rubbish!

[SusieR68 in reply to greygoose]

Thank you, my GP is being very problematic at the minute. I have just driven the 40 mile round trip to collect a copy of the results. I tried to speak to a doctor whilst I was there, but have been put on a ring back by on the on call gp.

[greygoose in reply to SusieR68]

Typical!

[SusieR68 in reply to greygoose]

On call has agreed to increase Levo to 75 (if I insist!!) Got to love the quality of care😊

[greygoose in reply to SusieR68]

If you insist! Of course you *********** insist! Do they think you like feeling ill? Incredible!

[SusieR68]

Thank you. I am extremely disappointed by standard of treatment. Its not just my thyroxine levels that are being ignored either sadly. May be time to find a new GP.

[SusieR68]

Thank you

[SlowDragon Administrator]

Do you know if you have high thyroid antibodies? This is Hashimoto's also called autoimmune thyroid disease

Seems likely as you also have Pernicious Anaemia

Have you had your vitamin D, folate and ferritin tested. These are likely to be low and may need supplementing

As others have said you are very under medicated. Dose needs increasing in 25mcg steps (retesting after 6-8weeks each time) until TSH is around one and FT4 towards top of range and FT3 at least half way in range

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:
[e-mail]

If you have Hashimoto's this 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...

[SusieR68 in reply to SlowDragon]

Yes I have hashimotos hypothyroidism. Yes, my b12 was 166, folate and ferritin also low, GP told me to use supplements which I did. Only to be read this will skew future bloods. So floundering at the moment. Asked for intrinsic factor to be checked, they agreed but then didn't check. He was also going to check cealiac antibodies, but didn't do this either.

[SlowDragon Administrator in reply to SusieR68]

He sounds useless

So if you have extremely low B12 you should be getting regular injections. Are you?

Ferritin, did you get full iron panel. GP should prescribe ferrous fumerate supplements or if extremely low iron infusion

What about vitamin D?

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

[SusieR68 in reply to SlowDragon]

Was diagnosed and given treatment for bit D deficiency and still on treatment 2 years ago. They will no longer check bit D levels "if you are taking the supplement you won't need checking". Thinking about changing GP, but wonder if I'll be jumping out of the frying pan into the fire. Many GP services around here are not good.

[SlowDragon Administrator in reply to SusieR68]

So I guess you are on 800iu prescribed by GP

It's very often not enough

We get many turn up, been on 800iu years and still deficient

Private testing here

Better you mouth spray tends to work better with Hashimoto's as it avoids poor gut function

betteryou.com/vitamin-d-tes...

vitamindtest.org.uk

[SusieR68 in reply to SlowDragon]

That makes sense, when I was initially tested for vit d, they thought I had fibromyalgia, started off on 25000iu once levels were up dropped to 800iu. The pains did stop at that point. But then 2 years later positive test for hashimotos

[SlowDragon Administrator in reply to SusieR68]

Hashimoto's probably the problem all along.

That's fairly typical

Strictly gluten free diet can be astonishing improvement, even if you have absolutely no gut symptoms

Essential to get all these vitamins optimal

Many GP's are useless on Thyroid, especially Hashimoto's

Vitamins are low BECAUSE Hashimoto's is not correctly treated. You are likely to need several dose increases

[SusieR68 in reply to SlowDragon]

Im guessing the best way forward with hashimotos is gluten free?

[SlowDragon Administrator in reply to SusieR68]

Well I would say definitely try it. At least 6 months.

If you feel better and also even if you don't particularly notice much difference you may find antibodies drop slowly

Personally it was astonishing improvement, pretty quickly and had absolutely no gut symptoms beforehand.

[SusieR68 in reply to SlowDragon]

Excuse my ignorance, if its going to work will this improve my vitamin uptake? I am really not as slow to get my head around things but I have been struggling with brain fog😊

[SlowDragon Administrator in reply to SusieR68]

Gluten free diet helps heal gut lining.

Lowers TPO antibodies slowly over time

Literally thousands of posts on here about how gluten free diet helps many/majority with Hashimoto's

healthunlocked.com/search/g...

You will still need to supplement vitamins to improve, but eventually as gut heals, may need less supplements

[SusieR68 in reply to SlowDragon]

Thank you so much for your advice, it is truly very appreciated.