Not feeling any better, any ideas?

[ianskelly]

Hi all, I had my TSH levels checked last week and they came back at 1.87 (this time last year when i had my first test I was 8.42) my serum free T4 was 21.8 (normal range 11-23)my thyroid peroxidase antibodies when tested last june (my doctor won't re test them) where 489( normal range 0-59) despite the big improvement in the tsh my actual symptoms (severe brain fog/ lack of energy/ lack of body hair and eyebrow hair/ ear ringing) haven't actually gotten any better, had the tsh and t4 done last week as I have a second appt with my endocrinologist next wednesday and I will ask him obviously, but as the last appt lasted 5 minutes I am not really hopefull (he did manage to tell me t3 not going to happen as no evidence it is helpfull...) p.s I went gluten free 6 weeks ago but not noticed a change

[SeasideSusie Remembering]

ianskelly

my thyroid peroxidase antibodies when tested last june (my doctor won't re test them) where 489( normal range 0-59)

No real need to repeat antibody testing once you've tested positive. You have Hashi's, it wont go away, just the level of antibodies will fluctuate.

I went gluten free 6 weeks ago but not noticed a change

Not everyone benefits from a gluten free diet; however, a trial of a few months may be needed to notice a difference.

TSH: 1.87

FT4: 21.8 (normal range 11-23)

When are doctors going to realise that we need FT3 testing as well to see if we are converting T4 to T3 well enough. Obviously you need FT3 testing at the same time as TSH and FT4. Ideally your TSH would be below 1 - see article by Dr Toft, past president of the British Thyroid Association and leading endocrinologist, in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

[e-mail]

Increasing your dose of Levo to lower your TSH will most likely take your FT4 over the top of the range. In which case testing FT3 is essential, if that is low then your conversion is poor and you need T3 added. Dr Toft's most recent article states that T3 may be helpful for many patients

rcpe.ac.uk/sites/default/fi...

In particular:

….It is instructive to consider the history of thyroid hormone replacement in order to appreciate that many of our policies have, to some extent, been accidental rather than planned. Thyroid extract was first used some 125 years ago with good effect and remained in widespread use until the 1950s when a suitable synthetic LT4 preparation gradually supplanted it. The doses employed were 200–400 μg daily. Although T3 was discovered as the second thyroid hormone in 1952 it was not used to any extent therapeutically as patients seemed content with LT4 alone, long before the demonstration that circulating T3 was largely derived from deiodination of extrathyroidal T4. The seismic shift in the treatment of hypothyroidism, however, was the result of the development of sensitive assays for TSH which showed that, in order to restore serum TSH to normal, the dose of LT4 required was of the order of 75–150 μg daily. Higher doses caused suppression of TSH consistent with hyperthyroidism. The resultant dose reductions were tolerated by the majority of patients but this was the beginning of significant dissatisfaction with adequacy of the recommended treatment of primary hypothyroidism which remains problematic today. The previously high doses of LT4 would, by the law of mass action, have overcome any impaired D2 activity in affected patients. Little attention has been given to a study, important in retrospect, which showed that it was difficult to increase serum T3 into the hyperthyroid range with LT4 unless serum free T4 concentrations were markedly elevated at around 35–40 pmol/l. This was an elegant demonstration that exogenous subclinical hyperthyroidism was a different entity from endogenous subclinical hyperthyroidism, even although serum TSH was suppressed in both conditions. In other words, a low serum TSH concentration in patients taking LT4 did not necessarily indicate overtreatment.

In short, what he is saying is that for Levothyroxine to be effective, the patient needs a dosage between 200 and 400 mcg daily. But since the focus of the medical profession had shifted to the TSH, the medical profession has erroneously decided that the TSH has priority over the wellbeing of the patient.....

[SlowDragon Administrator]

How much Levothyroxine are you currently taking?

Is it always the same brand of Levothyroxine?

As you have Hashimoto's it's absolutely essential to regularly test vitamin D, folate, ferritin and B12

Just testing TSH and FT4 is completely inadequate

TSH is very unreliable when on Levothyroxine and especially with Hashimoto's

Poor conversion of FT4 to FT3 is common especially if vitamins are low. So just testing FT4 and not FT3 is useless

It can take months to notice any improvement in symptoms after going gluten free. Many people do see a slow steady drop in TPO Thyroid antibodies if gluten free. But you would have to test privately as NHS rarely repeats antibodies testing

Ask GP to test vitamin levels

Getting Full Thyroid testing would have to be done privately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[ianskelly in reply to SlowDragon]

Hi I am on 100mg levo, changed about 2weeks ago from teva to different company (cant remember which and havent got them with me, I do the tests as above, I will ask to have my vitamins re done (last time was in Decemeber and they where in normal ranges) interestingly i had a ceoliac test in december that came back abnornmal (3.30g/l normal 0.8- 2.80) but my doctor said that it was nothing to worry about and i don't need to stop wheat!

[SlowDragon Administrator in reply to ianskelly]

So you got a weak positive test result

After a positive coeliac blood test you should be referred immediately for endoscopy. Necessary to remain on high gluten diet until endoscopy is done . Should be six weeks wait maximum.

If it's much longer you may need to consider private endoscopy. (About £1500-£2k)

But GP should have referred you back in December so push for NHS endoscopy asap

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. Dairy is second most common.

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

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

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

restartmed.com/hashimotos-g...

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

[SlowDragon Administrator in reply to ianskelly]

Always get actual results and ranges on vitamin levels

Vitamin D for example GP would say over 50nmol is ok. NHS isn't obliged to treat if over 50nmol. But most Hashimoto's patients need vitamin D at least around 80nmol and around 100nmol may be better

Vitamin B12 and folate frequently need supplementing to maintain near top of range

Ferritin often either too low due to Anaemia or too high due to inflammation of Hashimoto's

Always get printed copies of your blood test results and ranges or register for online access to your medical record and blood test results

[ianskelly in reply to SlowDragon]

do you think it maybe agood idea to test t3 through medicheck (ive seen it for £29.99) and hope results back before next wednedays appt with the endocrinologist ?

[humanbean in reply to ianskelly]

It is a good idea - but don't get just Free T3. You really need the full set - TSH, Free T4 and Free T3 all done at the same time to get the most information from it.

medichecks.com/thyroid-func...

Full price is £39 but you can get 10% off with the following discount code :

healthunlocked.com/thyroidu...

[ianskelly in reply to humanbean]

thank you humanbean

[SlowDragon Administrator in reply to ianskelly]

Ideally testing thyroid and vitamins ....zero pint testing just FT3

As absolute minimum you need TSH, FT4 and FT3

But really need vitamins tested too. Ask GP to do so?

Always do any thyroid test as early as possible in morning and fasting (drink plenty water day before and before test to be well hydrated)

If did test Monday morning, would be cutting it fine to get results by Wednesday

Only do a blood test on Monday, Tuesday or Wednesday morning. Post off straight away.

If you ordered a kit tomorrow, would have it for Monday, but likely results would be emailed to you Wednesday pm

Also just read you are taking BIOTIN

Essential to stop any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

If you stopped all B vitamins today, that's likely long enough gap, if testing on Monday

If you are going to have endoscopy to confirm coeliac disease you will need to stay on high gluten diet until endoscopy

You may, or may not think it worth having endoscopy. Obviously if coeliac is confirmed, you get gluten issue taken more seriously than "just" gluten intolerance

You will need to retest thyroid and vitamins 6-8 weeks AFTER going strictly gluten free

[ianskelly in reply to SlowDragon]

thank you for all your comments slow dragon.

[BadHare]

It takes a full 3 months to clear the effects of gluten, & even one breadcrumb will cause a reaction if that's an issue.

How are you micronutrient levels? I've tweaked my diet &

supplements, & found the natural forms of B12 help,

especially once I started injecting.

I saw a pituitary "expert" last year, but he seemed just as cluless as all the other endos I've seen. Have you thought about sourcing your own NDT or T3?

[ianskelly in reply to BadHare]

yes I have thought about t3 , I've read hashimotos protocol hence me going gf so taking b12, probiotics, magnesium and biotin and pepsin but I'm not really sure about the process of getting ndt or t3 or the costs etc. I need to do something the brain fog etc is terrible.

[SlowDragon Administrator in reply to ianskelly]

When you see Endocrinologist you need to point out you have had weak positive coeliac test and should have endoscopy

Vitamins need retesting if GP doesn't do this week

Ask Endocrinologist for DIO2 gene test. They are unlikely to admit such a test exists, let alone offer it

But one endocrine Centre in Kent offers this test on NHS, so why can't others?

[Vasiliki99]

i cant agree more there is so little help for my body with thyroid i need t3 but it did not make massive difference still a bit be good i just feel ill