Any advice welcome: Hi, new to the group. Had an... - Thyroid UK

Thyroid UK

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Any advice welcome

Emily911 profile image
28 Replies

Hi, new to the group. Had an under active thyroid for over 10yrs now. My dosage was pretty stable but the last few years it has to-yo’d. I’m now taking 150mcg Levothyroxine.

My problem is I am just struggling to lose weight. I’m classed as obese now and my blood pressure is higher than its ever been. I do Hiit sessions 3-4 times a week and generally eat lean chicken and veg.

I lost weight before I was diagnosed, with WW. I’ve recently done the body coach and I lost weight but it’s very hard to sustain.

I am also going through the menopause and I suffer from arthritic knees so have found it difficult to keep up with running/jogging

I’m after advice, who’s found SW or WW the most realistic?? Also exercise? I’m not a natural but I’m

Willing to try most things

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Emily911
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SlowDragon profile image
SlowDragonAdministrator

Extremely common for conversion of FT4 to FT3 to get off balance the longer we are on Levothyroxine, or especially around menopause

Low vitamin levels are extremely common and can make conversion worse

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.

UK GP practices are supposed to offer 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.

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 Thyroid antibodies are raised or if under medicated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

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

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Come back with new post once you get results and ranges

Emily911 profile image
Emily911 in reply toSlowDragon

Thank you, yes I do have access to my records online. Sounds like I need to figure out what’s what!

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

So can you add your online results and ranges for

TSH

FT4

FT3

TPO antibodies

TG antibodies

Vitamin D

Folate

B12

Ferritin

You may find, like thousands of others, with NHS testing, GP has only tested TSH which is completely inadequate

How long since Thyroid levels last tested?

If a while, ask GP to retest thyroid levels including vitamins and antibodies

Make sure to do blood tests as early as possible in morning and fasting and last Levothyroxine dose 24 hours before blood test

Emily911 profile image
Emily911 in reply toSlowDragon

Only got my tsh , vit d, ferritin. Only the tsh is abnormal. Test on 14th jan 23 apr and 10 may

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

Can you add your most recent results and ranges for TSH, vitamin D and ferritin then

Is TSH too low or too high?

Just testing TsH and not test FT4 and FT3 is completely inadequate

Vitamin D - level needs to be at least around 80nmol and around 100nmol may be better

Ferritin at least half way in range

B12 and folate need testing

Emily911 profile image
Emily911 in reply toSlowDragon

April 19.....

Serum TSH level (XaELV) 31.5 miu/L [0.3 - 4.2]

Serum ferritin level (XE24r) 79 ng/ml [30 - 400]

Dec2017 - Serum total 25-hydroxy vitamin D level (Xabo0) 72 nmol/L

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

So when you got very high TSH in April....

had you

had change in brand of Levothyroxine ?

Been on any other new medication ?

Taking any supplements with biotin in?

Or any other obvious changes

What did GP do about very high TSH?

Emily911 profile image
Emily911 in reply toSlowDragon

Increaed my dosage to 150 from 125. No brand change as far as I’m aware, not taking any other meds and not taking supplements.

Lots of questions you ask, not sure why? What are you thinking?

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

Well it's an extrodinary jump in TSH after 10 years on steady levels

Have you had bloods retested since dose increase?

Levels should be retested 6-8 weeks after any dose (or brand) change

Aim of Levothyroxine is to increase dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) most important to test FT3 and FT4. Just testing TSH is completely inadequate

Vitamins need to be regularly tested too

Emily911 profile image
Emily911 in reply toSlowDragon

These are previous results...

Jan 19 Serum TSH level (XaELV) 5.3 miu/L [0.3 - 4.2]

Dec17 Serum TSH level (XaELV) 15.9 miu/L [0.3 - 4.2]

Cant go any furtherback

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

Just testing TSH is completely inadequate

But such high TSH suggests you have needed dose increase for some time

Dose should have been increased after both Dec 2017 and Jan 2019 results. Did that happen?

Very important to test vitamin levels and thyroid antibodies

High thyroid antibodies confirms cause as autoimmune thyroid disease (Hashimoto's) and malabsorption and gluten intolerance are common with Hashimoto's

Recommend getting full Thyroid and vitamin testing after you have been on constant 150mcg dose, taking it at bedtime/middle of night

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 (note recommended to avoid calcium rich foods at least four hours away from Levo. No soya. Tea and coffee at least 30 mins away (better to leave at least an hour)

Research into affect of coffee

thyroid.org/patient-thyroid...

Emily911 profile image
Emily911 in reply toSlowDragon

I take the meds everyday, before breakfast on an empty stomach. Just wondering if I’m doing something wrong so they are not absorbed?

radd profile image
radd in reply toEmily911

Emily911,

Taking thyroids meds on an empty stomach is the right way to take them. But how long do you wait until you eat breakfast ?

Emily911 profile image
Emily911 in reply toradd

Probably no more than 20minutes. I also don’t use water, I just swallow them. I’ve read in places people say definitely use water

radd profile image
radd in reply toEmily911

Emily,

Yes, taking meds with water is better. I always do.

Also absorption in the gut can be impaired if meds are taken with calcium, iron and some foods so it’s best to leave at least 30 minutes before eating.

Emily911 profile image
Emily911 in reply toradd

Ok, I’ll start to take with water now. My friend takes her meds at bedtime, what do you think about that idea?

radd profile image
radd in reply toEmily911

Emily,

It suits some people better. If you want to try it, do but just ensure you are still taking meds on an empty stomach.

Wouldn’t suit me coz I always get the munchies in the evening. 😂

Emily911 profile image
Emily911 in reply toradd

😊 you are not alone... how long would you say gives you an empty stomach ? 3hrs? More or less?

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

If taking at bedtime you need to leave minimum of two hours after a meal. Perhaps 3 hours if it's a feast

Nothing apart from water for at least an hour before and after taking Levothyroxine

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Quite a few members take Levothyroxine in middle of night when get up for the loo

Keeping a weekly pill dispenser by the bed makes that easier and your much less likely to forget to take them

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

Yes definitely with water

greygoose profile image
greygoose

Sounds like you're on a low-fat diet. You do know that eating fat doesn't make you fat, don't you? The body needs fat, that's why it tastes so nice, and gives food flavour.

SW is based on low/no-fat, so I wouldn't recommend that.

But, is your weight-gain actually fat? Or is it water? If it's water, no amount of dieting and exercise will get rid of it. What you need is a decent level of FT3. Have you had that tested? :)

Emily911 profile image
Emily911 in reply togreygoose

No the body coach wasn’t low fat, it was eating the right fats, only eating limited carbs (rice potatoes bread) after exercise.

greygoose profile image
greygoose in reply toEmily911

Animal fat is one of the good ones, so no need for lean chicken. :)

RockyPath profile image
RockyPath

The subject has been studied exhaustively in the US and the conclusion is that the brain remembers the higher body mass (which represents security against famine), and it cunningly adjusts metabolism to keep at the body mass you are trying to escape.

Two and a half years ago I sustained a brain injury that apparently broke this feature. It was stunningly easy to lose 20% of my body mass and I’ve maintained this post-menopause shape that’s reminiscent of being 20.

You’d need a carefully aimed blow, but even the neurologist doesn’t know where the magic spot is.

snow22 profile image
snow22

I also started to struggle more with weight - also tiredness - after being on Levo for 10 years and being menopausal. So I joined this forum and I found the advice on here has been very helpful, including going on a gluten free diet. This is to help the auto immune thyroid condition. If you put this in the search bar above, you might be able to find out more about this and what is recommended and why. There is also an auto immune diet, of which you can find details online, which is also recommended for arthritis. For exercise I can only manage walking and swimming, as physically and energy wise I cannot do any more. Would like to do cycling but a little wary of it in London.

Emily911 profile image
Emily911

Blood not redone yet, not been on the new dosage long enough

SlowDragon profile image
SlowDragonAdministrator in reply toEmily911

If you change time of day when you take dose, to evening/middle of night, wait 6 weeks to retest

Make sure to get vitamins and thyroid antibodies tested plus FT3 and FT4

Likely to have to test some/most of these privately

Emily911 profile image
Emily911

Yes dose was increased both times

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