Hashimotos and water retention

[Manjiajk]

Has anyone had bad water retention with Hashimotos? If so, how can it be reduced/gotten rid of? Thanks.

[SlowDragon Administrator]

Taking enough replacement thyroid hormones to bring TSH down to around 1. Most importantly to test Ft3 and Ft4

Your last test results 4 months ago TSH was 76 ...so extremely hypothyroid

It takes many months to recover from very low Ft4 and low Ft3

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to regularly test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood 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)

If/when also on T3, (or NDT) make sure to take last dose half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Remember to stop taking any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results. (Eg in Vitamin B complex)

[Manjiajk in reply to SlowDragon]

My results are now apparently in the “normal range” and have been since July last year. My TSH had gone up to 106 in May so was very high.

[SlowDragon Administrator in reply to Manjiajk]

How much levothyroxine are you currently taking?

Do you always get same brand of levothyroxine?

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood 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

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

For thyroid including antibodies and vitamins

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

[Manjiajk in reply to SlowDragon]

I’m on 150mcg per day. I always use Actavis. I take vitamin D, folate, ferritin and B12 and every day. Previous blood tests have shown my levels to be good. I’ve just recently moved and have just registered with a new GP but will try to get hold of my last blood test results. I do have thyroid antibodies. I must admit, I feel so tired all of the time so something’s not right.

[SlowDragon Administrator in reply to Manjiajk]

Can you add your actual results and ranges on vitamins and thyroid

Frequently they are in range, but far from optimal

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

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten intolerance. Second most common is lactose intolerance

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either due to 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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

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 strictly gluten free diet for 3-6 months

If no noticeable improvement, reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

[Manjiajk in reply to SlowDragon]

I’ve been gluten free for years as I can’t tolerate it. I’ve just ordered Blue Horizons blood test kit. I will follow your advice on testing and then post my most recent results once they’re complete. Thank you for your help.

[SlowDragon Administrator in reply to Manjiajk]

Likely, with gluten intolerance, conversion of Ft4 to Ft3 is poor

Many of us need the addition of small dose of T3 alongside levothyroxine.....but it’s a battle to get prescribed due to cost

First step is full thyroid and vitamin testing

[Manjiajk in reply to SlowDragon]

This whole disease is a battle! I’ll up date you in a few days, once results are in. Thank you again.

[Manjiajk in reply to SlowDragon]

I’ve just managed to get my blood test results for December and my TSH was 4.49- so this needs to be brought down to around 1?

[Lalatoot]

This is a common hypothyroid symptom. It will only sort itself out when your thyroid hormones are at their optimum levels for you.

To achieve this you need to learn as much as you can about hypo. Keep results of all your blood tests. Monitor your symptoms. You are aiming to get your tsh one or lower with ft4 and Ft3 over halfway through their ranges at levels that you personally feel well at. Along with this your B12, folate, ferritin and vitamin D need to be well over half way in their ranges.

[Manjiajk in reply to Lalatoot]

My results are now apparently in the “normal range” and have been since July last year. My TSH had gone up to 106 in May so was very high. So I need to have a TSH of around 1?

[SlowDragon Administrator in reply to Manjiajk]

Frequently when adequately treated, TSH is well below one

Most important results are Ft3, followed by Ft4

Ft3 needs to be at least 50% through range, man6 people need Ft3 more like 75% through range

Median TSH graph of population NOT on levothyroxine

healthunlocked.com/thyroidu...

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 at

[e-mail]

If you have lactose intolerance then frequently need higher dose of levothyroxine than guidelines

[Manjiajk in reply to SlowDragon]

If I am below the range but my GP believes me to be within range, how do I go about rectifying this?

[SlowDragon Administrator in reply to Manjiajk]

You will see thousands of posts on here about getting vitamins optimal

and getting Levothyroxine dose and brand optimal

If Ft3 remains low after this....

Getting T3 prescribed is possible with perseverance...and finding right endocrinologist

Post code lottery...some CCG areas are worse than others

But FIRST step is FULL private testing

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

Also if taking iron stop these a week before, if wanting to know accurate iron levels

Always do test early morning on Monday, Tuesday or Wednesday

As early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Come back with new post once you get results

[SlowDragon Administrator]

previous post

healthunlocked.com/thyroidu...

How much levothyroxine are you currently taking?

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Guidelines on dose by weight

NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

As you have hashimoto’s are you on strictly gluten free diet?

[Manjiajk in reply to SlowDragon]

I’m on 150mcg per day.

[SlowDragon Administrator in reply to Manjiajk]

So is you weigh yourself in kg x 1.6 = around 150mcg ?

What vitamin supplements are you currently taking?

[Manjiajk in reply to SlowDragon]

No, that would mean I’m taking more Levo than I need.

[SlowDragon Administrator in reply to Manjiajk]

Then that suggests lactose intolerance..

Very common, especially if gluten intolerant

Lactose intolerance often recovers improves over time once on strictly gluten free diet

coeliac.org.uk/information-...

[Manjiajk in reply to SlowDragon]

I can’t tolerate lactose either.

[SlowDragon Administrator in reply to Manjiajk]

So you need to be on lactose free levothyroxine tablets or lactose free levothyroxine liquid

[HashiFedUp]

Exercise is the best way of getting rid. Keep moving and dont sit around!

[Manjiajk]

I’m extremely active, but it’s still not shifting.

[SlowDragon Administrator in reply to Manjiajk]

If Ft3 is low, exercise can actually make Ft3 even lower

Important to always test FT3 and Ft4. NHS rarely tests Ft3

[SlowDragon Administrator in reply to SlowDragon]

Remember to stop taking any supplements that contain biotin a week before any blood tests

ALWAYS get blood test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

[SlowDragon Administrator in reply to Manjiajk]

We ALWAYS Recommend getting FULL thyroid and vitamin testing via Medichecks or Blue Horizon BEFORE seeing any thyroid specialist...otherwise first consultation is waste of time and money

First step is to get all four vitamins tested and supplement to bring to optimal levels

Levothyroxine dose increased/brand changed to lactose free tablets or possibly liquid levothyroxine

[Manjiajk in reply to SlowDragon]

I’ve just received my Medicheck test kits today so I’ll have my test results before the first app.

[SlowDragon Administrator in reply to Manjiajk]

Only do test on Monday, Tuesday or Wednesday morning ..post off

Post a bit slow at moment...so Monday or Tuesday only perhaps

[Manjiajk in reply to SlowDragon]

OK. Thank you.