Cannot control weight

[sjogrens101]

Hi I have Hashimoto’s, Sjogren’s Syndrome, am border line Lupus, with heart and neuropathic problema also. Yay, go me !

I cannot lose weight. I suffer from fluid retention (about 30 years) which is sometimes under control but not often. I eat, according to my husband, like a bird. I’m allergic to gluten and dairy so no cream cakes, donuts or chips for me and I rarely use gluten/ dairy free substitutes and very rarely eat sweets. I cook all fresh food ie no pre-prepared foods. I am on a ton of medication including weekly injections of methotrexate and 6 monthly Rituximab infusions. I also take alternate days 50/75 mg of Levo at around 6-30am with a large glass of water before eating/drinking anything else at around 10.30am

These are my last Thyroid results which of course our ‘normal’ ie within range. but I know they cannot be optimal. The labs were taken on an empty stomach without any meds having been taken at 10-45am.

Any advice on how to improve things would be great.

THANK YOU 🙏

FT3 3.43 (1.40-4.40)

TOTAL T3 0.97 (0.80-1.90)

FT4 0.97 (0.70-2.00)

TOTAL T4 7.69 (4.70-12.40

TSH 0.187 (0.17-4.50)

[SlowDragon Administrator]

Essential to regularly test vitamin D, folate, Ferritin and B12

Have these been tested? Add results and ranges if you have them

If not, request GP does so

You are on very low dose Levothyroxine. FT4 is low

See GP to discuss dose increase. Initially perhaps just to 75mcg daily

Bloods should be retested 6-8 weeks after each dose increase

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

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 in top third of range and FT3 at least half way in range

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

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)

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

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-...

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. Teva is the only brand that makes 75mcg tablet.

[sjogrens101 in reply to SlowDragon]

Thank you so much for taking the time to reply. I was B12 and Vit D deficient but after monthly B12 and weekly liquid Vit D supplementation for 3 years, both are now at the top end of the range. Folate is low due to Methotrexate and I take 10mg per week to try to help this. Ferretin is being checked with my monthly bloods tomorrow.

I get my Levo in Spain as I am here often, the brand here is Eutirox and it does contain a very small amount of lactose !! I shall check out the Tevo brand you suggest.

Thank you again for all of the information.

[SlowDragon Administrator in reply to sjogrens101]

So are you definitely lactose intolerant?

[sjogrens101 in reply to SlowDragon]

It seems I’m allergic to the protein casein. I can eat a little butter and even have a little lactose free milk in tea, but lactose free cheese and other products cause joint swelling/pain as does all regular dairy products.

[SlowDragon Administrator in reply to sjogrens101]

Ok - yes approx 60% of Hashimoto's patients are lactose or casein intolerant

Casein is apparently not in sheep, goat or camel(!) milk

[sjogrens101 in reply to SlowDragon]

I was told I couldn’t have ANY cheese and goat cheese was a go to food for me. Sad !!

Haven’t seen many camels around but if I do ......

[SlowDragon Administrator in reply to sjogrens101]

here's link all about dairy

thyroidpharmacist.com/artic...

[sjogrens101 in reply to SlowDragon]

Thank you for sharing the link.

I may have to try the Camel Milk now, may, not certain if I will ... might just go without

I found Izabella Wentz book so helpful.