Thyroid weight gain...best eating plan? - Thyroid UK

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Thyroid weight gain...best eating plan?

CMBB27 profile image
13 Replies

Hi, I posted previously explaining my GP had decreased my Levo (125 to 100 then 112.5) and I gained 2 stone within a matter of months. I then was referred to the endocrinologist who could not understand why my meds had been reduced at all.

My dosage was increased To 125 daily three weeks ago and although the symptoms have lessened my weight still continues to go up dramatically even though I’m following slimming world. My GP allowed a further increase to 137.5 as of yesterday. It seems I have no control over my weight. Does anyone have any advice on eating plans or insight into why this is still happening as it’s really affecting my mood.

Thanks in advance.

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SlowDragon profile image
SlowDragonAdministrator

When dose is reduced inappropriately then frequently vitamin levels drop. They may be now very low and need supplementing to improve

You need to get FULL Thyroid and vitamin testing 6-8 weeks after each dose increase (or change in brand of Levothyroxine)

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

Ask GP to test vitamin levels and thyroid antibodies if these have never been tested

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).

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

CMBB27 profile image
CMBB27 in reply to SlowDragon

Thank you. I just worry waiting 6-8 weeks my weight is going to be even more out of control.

My last tests were not morning tests and although I asked for the full thyroid tests they only done TSH. In previous tests I posted it was suggested I had a conversion problem but the endocrinologist said I didn’t. It’s absolutely soul destroying, I don’t even want to be seen in public it’s making me so depressed :(

SlowDragon profile image
SlowDragonAdministrator in reply to CMBB27

Vast majority of members on here forced to get private testing to test FT3 and FT4 alongside TSH (and BOTH thyroid antibodies if never been tested before)

Ask GP to test vitamins and thyroid antibodies now

Get full Thyroid testing in 6 weeks

Do you always get same brand of 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.

Teva is the only brand that makes 75mcg tablet.

CMBB27 profile image
CMBB27 in reply to SlowDragon

I’m sure the brand for my 100’s is different to the 25’s. Would that matter?

SlowDragon profile image
SlowDragonAdministrator in reply to CMBB27

It could do

Generally it's advisable to stick to one brand

Some different named boxes are actually same brand inside

List here

thyroiduk.org.uk/tuk/treatm...

SlowDragon profile image
SlowDragonAdministrator

Four months ago you had low ferritin

healthunlocked.com/thyroidu...

Ferritin needs to be at least around 70 (halfway through range)

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

FERRITIN

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

A month ago you said you suspected you may have low vitamin D again

Did you start using Better You vitamin D mouth spray?

healthunlocked.com/thyroidu...

Did you get vitamin D tested by GP?

If not suggest you test here £29

vitamindtest.org.uk

As you have Hashimoto', Are you now on strictly gluten free diet?

If you take too much Levothyroxine so that FT4 is very high and TSH very low it can sometimes make conversion worse

Roughly where in the UK are you?

Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists who prescribe T3

You need to get vitamins tested and OPTIMAL before even considering trial of T3

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

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TsH in order to have high enough FT3

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

CMBB27 profile image
CMBB27 in reply to SlowDragon

Thank you. I am in Tyne and Wear. I have been supplementing Vitamin D but it’s a low dose. I asked my endocrinologist about the vitamin Tests and he said it was irrelevant, if might help the symptoms but not the function of the thyroid?

I haven’t done anything about the ferritin on the back of this.

Following on from previous posts I signposted a friend to medichecks and her GP Won’t acknowledge the results so I will push my own gp to test. Thanks so much.

SlowDragon profile image
SlowDragonAdministrator in reply to CMBB27

Yes...we have all met endocrinologists like that

Patients find the reverse....that getting vitamins optimal is essential

GP is unable to offer vitamin D testing more than once every two years, despite it being well known that vitamin D and Hashimoto's is extremely linked

All Patients with autoimmune thyroid disease should have vitamin D tested annually

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

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

ncbi.nlm.nih.gov/pmc/articl...

Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.

Same applies to low B12 - extremely common in hypothyroid patients

All patients who are hypothyroid should have B12 tested

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

ncbi.nlm.nih.gov/pubmed/169...

Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.

Folate supplements can help lower homocysteine

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

Low ferritin frequent in hypothyroidism

endocrineweb.com/profession...

Many hundreds of patients on here find getting vitamins optimal by regularly testing and supplementing is first step

Frequently has to be done privately as NHS refuses to acknowledge the link

pennyannie profile image
pennyannie

Hello CMBB

Looking back on your previous posts it's apparent that your conversion of T4 to T3 is low. You conversion of T4 into T3 was coming in at around 1/7 whereas a conversion of between 1/3 - 1/ 4.5 is where most people feel " at their best " - whatever " that is " !!

It is essential that your vitamins and minerals are optimal as conversion of T4 into T3 within the body can be compromised if ferritin, folate, B12 and vitamin D are not high in their ranges. Four months ago your ferritin was not optimal, where is it now, are you supplementing ?

I think as previously suggested a current full thyroid panel plus the vitamins and minerals needs to undertaken and then people on here will be able to advise on your next steps back to better health.

I think with the current restrictions on prescribing T3 through the NHS you may need to consider self medicating and purchasing the T3 thyroid hormone yourself and the bloods can be actioned privately if your doctor refuses to do them for you.

I am with Graves Disease post thyroid ablation with RAI in 2005 and having been refused a trial of T3 last year I a now self medicating and doing ok.

CMBB27 profile image
CMBB27 in reply to pennyannie

Thank you.

I haven’t done anything about the Ferritin following my Endo saying vitamins weren’t relevant? Vitamin D I take a low dose supplement.

I spoke to the Endo about a possible thyroid conversion problem and he said it was clinically impossible as my TSH was within range.

It’s so confusing. Thanks again

pennyannie profile image
pennyannie in reply to CMBB27

Yes, I know, I've been where you are.

Your aren't converting T4 into T3 because you are not optimally medicated and I doubt T4 alone will solve this issue. The body runs on T3 not T4, and if you are unable to convert the T4 to T3 you will be suffering many symptoms. Simply keep increasing the dose of T4 doesn't necessarily solve the conversion problem.

One knock on of this can be low vitamins and minerals as you are not metabolising your food and are experiencing upsetting weight gain. We have already identified half of the essential vitamins and minerals are low in range, and ultimately, without supplementation your symptoms will only get worse.

It took me a year to build up my ferritin and I was housebound with related issues as to the consequences of having had the radioactive iodine thyroid ablation treatment.

I think you must consider yourself in all this.

The endo isn't living with your health issues, and ultimately is processing people through a system and is obliged to recite the NHS dogma, which isn't working for you.

I know it's a massive learning curve, it's daunting and disconcerting but you can change things around for yourself by gaining the knowledge to question the treatment options open to you through your doctor.

CMBB27 profile image
CMBB27 in reply to pennyannie

Thanks a lot, that helps a lot. I will get repeat bloods and post back for your help if that’s ok. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to CMBB27

I only made progress after joining here and seeing time and time again posts about importance of OPTIMAL vitamin levels

Now get T3 on NHS - More on my profile

Currently post code lottery on getting T3 prescribed on NHS due to outrageous identical price charged to NHS by all 3 pharmaceutical companies

Some CCG much more reluctant than others

South Tyneside CCG prescribing rate

openprescribing.net/analyse...

North Tyneside

openprescribing.net/analyse...

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