Under active Thyroid and cant lose weight at al... - Thyroid UK

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Under active Thyroid and cant lose weight at all. PLEASE HELP !

Astro16 profile image
29 Replies

Hello all you lovely folk ,

I am looking for some advice, i have an under active thyroid and am on 125 levothyroxine, I am nearly 60 and i am finding it nearly impossible to lose weight, i actually put on yet another stone recently, but i hardly eat, as i also have a hiatus hernia.

First i stopped eating bread as it bloats me , now i cant eat eggs as they badly affect my tummy as i tried having two eggs and half a banana, for breakfast, but its become silly, and i only lose weight if im ill. I dont want to be ill to lose weight as two eggs gave me such bad diarrhea, i nearly lost a stone in a couple of day s, that was very unpleasant . For my lunch i now( as its summer , have cut raw carrots , radish , a bit of humus , a tiny veg samosa and a tiny onion bhajee . I have cut down my alcohol greatly , i drink about 5 glasses of water , as if i drink any more my body holds on to it ! i try and only eat breakfast and lunch , and definitely nothing after 18.30! The other day I had a small very small soup like half a cup of veg soup and put on half a stone

I went and saw this horrid doctor who said its middle age spread, and said she was passing me on to a social prescriber ,( something less qualified than a doctor ) , as she ( the doctor )said what do you want me to do for you? i replied that i wanted her to help me lose weight, since ive been passed on to the council s Well woman programme and they just laughed and said youre eating too much, and some silly on line nutritionalist , who also said i eat too much! Ok im only small , but the plate i eat from is the size of a side plate. I dont eat a great deal , yet I cant lose weight , i cant eat more becuse of my hernia and I cant exercise as i have collpsed muscles in my legs after a bad hip opperation, ! im getting so frustrated , I really hate myself, I cant wear the clothes I want , i feel like a complete failure, and its hurting me to walk as mylegs hurt because of the collapsed muscles,and I really dont know what to do , ive tried the cabbage soup diet, that didnt work, i tried the putting health at the top diet, ionly lost 10 lbs and could only eat fish and spinach !! I dont eat meat, i eat fish. Ive tried so many diets , im beginning to believe them when they say diets dont work !! Im so depressed about all this ! The doctor did say your homes are out of ballance, so i looked it up on google, who informed me that an endocronologist deals with hormones, why didnt my Doctor refer me to one of them ! My Chemist said they dont give advice on diet pills as often one cant take them with various prescription medicaton !!!! I am at my whits end !!! Can any one give me advice before i end up puttin on more weight and kill myself with heart failure or something ? I dont eat any processed foods, i usually cook for my son and myself in the winter, and keep our diet as healthy and as much propper food as possible , but with my thyroid condition, and menopause, and high blood pressure , and anxiety , i feel a complete and utter failure , ive even tried walking lots but end up in tears as its so pain full !!!!

Astro

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29 Replies
DippyDame profile image
DippyDame

Poor you,...you are not a failure, you are unwell

Without a full thyroid test we cannot see what is going onTest...

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies

Many of us test privately to access all of the above

thyroiduk.org/help-and-supp...

This may not solve all your problems but it will be a start in the right direction

Also suggest you ask to have a coeliac test

nhs.uk/conditions/coeliac-d...

But one step at a time because right now you're faced with several,issues and you need to start with checking out what you already know about ....hypothyroidism.

Hypothyroidism can cause many symptoms and correct medication can help resolve some/all of them

thyroiduk.org/if-you-are-un...

This might help

thyroiduk.org/if-you-are-hy...

We're all in this mess together so come back with any info you have and members will help

Oh....and I should add you are legally entitled to request any lab results from reception at your surgery

Good luck....

Astro16 profile image
Astro16 in reply to DippyDame

THANKYOU, I am going to see if i can get my normal doctor to refer me to an endo as they apparently deal with hormones too, and getting a full blood test for my thyroid is really hard at my doctors at the moment, actually getting to see my own doctor is nearly impossible sinc e covid. I appreciate your answer alot and will see what i can do about the blood test , but i would be happier if the doc would refer me to an endo ralther than passing me on to some social prescriber , and even i dont know what unqualified soul that is .

Thankyou , im still very unhappy and if i can wake myself up early enough to book a phonecall from my doctor, that may help as this horrid GP i saw kicked me out after 5 min and id booked a double appointment!!!

Thankyou for taking the time to reply x

Astro

fiftyone profile image
fiftyone in reply to Astro16

not sure if it's any conoslation, but I have been taking a high level of levothyroxine for years. I take maybe up to 2hrs exercise a day. I eat a lowish carb diet, I have had all my levels, ferritin, vit D etc. checked and I STILL DON'T LOSE ANY DAMN WEIGHT!!! Need to lose a stone.

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

How much levothyroxine are you currently taking

Please add actual results and ranges on thyroid

TSH, Ft4 and Ft3

Just testing TSH and Ft4 is completely inadequate

Plus please add actual vitamin results and ranges

fiftyone profile image
fiftyone in reply to SlowDragon

taking 175mcg daily (for some 2o years). My F4 is usually about six points above the range and my T3 is usually high but within range. My TSH is totally suppressed. Having regular B12 injections and taking iron tablets. Been told my vitamin D is fine and to be honest I am always in the sunshine in the summer, but take vit. D in the winter. I sleep well, no anxiety, calm personality, not losing any weight but regular daily exercise, maybe up to around two hours, walking/swimming regularly plus strength and flexibility exercises.diet, very low sugar and lowish carb cos I am type 2 diabetic. Just take metformin. Age 77. Also on HRT for 8 months.

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

Come back with new post once you get full results

Likely to need to be strictly gluten free

If you’re only eating low gluten levels probably not worth testing for coeliac, just go absolutely strictly gluten free

Are iron supplements and B12 injections prescribed by GP ?

never take iron supplements without getting full iron panel test done 3-4 times a year

Suggest you get Dio2 gene test done too

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

fiftyone profile image
fiftyone in reply to SlowDragon

thank you for your reply. Not coeliac (was tested by doctor). yes all B12 and iron under doctor's supervision, My full thyroid results were exactly as I said - fully suppressed TSH. FT4 about 6 points above range and FT3 within range.

I avoid:

normal desserts, bread and breaded products, rice, pasta, pastry, wheat products, potatoes, batter. Do eat porridge regularly and small amount of pulses. Occasional treats: slice of cake, one small piece of sweet chocolate.

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

Only 5% of Hashimoto’s patients are coeliac

A further 80% find strictly gluten free diet either helps significantly or is essential

It takes 3-4 months for gut to recover each time you eat gluten

That means ….watching out for cross contamination too…don’t share cutting boards, separate toaster for gluten free toast, separate butter etc etc

Home made Gluten free cakes are excellent

Optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

As you have B12 injections it’s recommended to also take daily vitamin B complex

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

fiftyone profile image
fiftyone in reply to SlowDragon

just one thing, I am not Hashimotos, as far as the doctor knows

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

Suspect you have had high thyroid antibodies test results in past ….especially as GP has done coeliac blood test

Hashimoto’s diagnosed by high TPO or high TG thyroid antibodies or by ultrasound scan of thyroid if both antibodies are negative

NHS refuses to test Thyroglobulin antibodies unless TPO antibodies are high

Significant minority of Hashimoto’s patients only have high TG antibodies

You need to test BOTH TPO and TG antibodies privately

20% of Hashimoto's patients never have raised antibodies

Have you had ultrasound scan of thyroid

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

fiftyone profile image
fiftyone in reply to SlowDragon

I have never had antibody tests. When I was first diagnosed, 37 years ago, I was just told I had an underactive thyroid. doctor did coeliac test because I was having bowel problems. Strangely, this problem has been completely solved by taking iron tablets!!! who'd have thought?

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

Because we need optimal vitamin levels for levothyroxine to work….improving low vitamins is essential

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

Many members find having Ft4 too high and over range causes issues

May be better to reduce levothyroxine slightly to bring Ft4 to 60-80% through range and then, assuming Ft3 drops too low, have T3 prescribed alongside levothyroxine

fiftyone profile image
fiftyone in reply to SlowDragon

your advice re thyroxine will so not suit me at all. Firstly I cannot get T3 ont he NHS. Ihave tried asking. Secondly a week after reducing my thyroxine dose, I feel quite poorly and I get pulsatile tenitus. Then takes about three weeks to get back to normal after putting up my levo again. I presume I thrive on high T3 (within range) and seem to need very high T4 to get it. I agree it might be better to lower levo and have T3, but NHS clearly don't agree. I used to take vitamin B tablets but found my stomach does not absorb B12, wehter it absorbs other B vitamins I have no idea but I have fortified milks, unsweetened yogurt, nuts so not aware of suffering from other B vitamin deficiencies. I used to take B vitamins until I discovered they was useless cos my B12 malabsorption problem.

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

But you likely still need the other B vitamins as well

You are now getting B12 via injection

It’s becoming easier to get T3 prescribed as price drops

But you may need to start via private consultation initially

Over 59,000 prescriptions for T3 in England in last year

Up from 57,000 last year

Typically 6 prescriptions per person per year

openprescribing.net/analyse...

Roughly where in U.K. are you

Some CCG areas are worse than others

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

fiftyone profile image
fiftyone in reply to SlowDragon

I'm in cumbria. (Morecambe Bay Health Trust) Don't fancy going down the private route for T3. I sometimes read people can have problems on T3 as well.

SlowDragon profile image
SlowDragonAdministrator in reply to fiftyone

332 prescriptions in last year

openprescribing.net/analyse...

If you test positive for Dio2 gene it may help get T3 on NHS

Astro16 profile image
Astro16 in reply to fiftyone

I wish i could do all those things , having wasted muscles in my left leg after hip surgery means movement is limited , !!!!

Astro16 profile image
Astro16 in reply to fiftyone

Its very very frustrating isnt it, but i cant exercise,as after my hip opperations the muscle in my left thigh is wasted , and i cant dance any more or walk properly, when i used to walk 7 miles a day in the job i did for 30 years, and now i weigh 1 stone more than my 30 year old son,, i feel horrid and hate myself cos moving hurts .

fiftyone profile image
fiftyone in reply to Astro16

This sounds really depressing. Is there any rehabilitation service - physiotherapy?? Are you able to swim? It's always a matter of doing whatever you can or devising your own activity. Obviously walking is out of the question at the moment. What about these 'foot pedalers' I've seen advertised on TV, where you sit down. I do hope you eventually find something which brings you a bit closer to normality.

Astro16 profile image
Astro16 in reply to fiftyone

Dear fiftyone

Yes this is depressing, i have to go to the gp to get referred to physio, however i have already dont that , ages ago and id didnt help my collapsed muscle at all. I used to swim, but after a hip replacement one isnt allowed to swim as the frogs legs thing can dislodge hips too , i keep trying to tell the gp about all this and the silly woman there keeps sending me to well woman at the council who just laugh at me and think i eat too much, which i dont, im having food allergy probs at the moment , so have to see the gp about that , and also i only have a small breakfast and a small sideplate of food early afternoon, I do walk , but am very slow, and even a tortoise could beat me , it hurts so much to walk on the pavements, i can walk on carpet and in home and on grass,but not on concrete ! i asked the chemist about diet pills , but it turns out that one has to consult a gp as most diet pills one cant take on certain meds !!! Thankyou for taking the time to reply ! i do have an old exercise bike , but i used that every day for several months and i didnt lose any weight at all !!! so foot pedlar things i dont think would work,

its just my middle, and boobs and hips, not my legs, and arms !! but i want to see if the gp will refer me to an endo as they deal with imballances in hormones which i think its whats happening, becuse of the menopause, but I cant do Hrt, since i had breast cancer and my cancer was hormonal !!!

Thankyou for taking the time to reply

Astro x

lilliput profile image
lilliput in reply to fiftyone

Exactly the same here. Just trying to get BMI to under 30

SlowDragon profile image
SlowDragonAdministrator

BEFORE considering booking any consultation with thyroid specialist endocrinologist

We always recommend getting FULL thyroid and vitamin testing done

Plus coeliac blood test, if still eating gluten

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Do you have Hashimoto’s

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

What vitamin supplements are you currently taking

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Come back with new post once you get results

Meanwhile

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

Read posts on here regularly

You will see your experience is not unusual and it can get better

You’ve made the first step ….by joining this forum

You can read members own journeys on their profile page too

Astro16 profile image
Astro16 in reply to SlowDragon

Thankyou , i will consider all you said, imay hve to print out your reply , as it quite involved, thankyou . I am still very depressed about all of this , but your help is greatly appreciated .

Thankyou

Astro

SlowDragon profile image
SlowDragonAdministrator in reply to Astro16

Come back with new post once you get copies of your thyroid and vitamin results

See what’s been tested…..

Members can advise on next steps after this

SlowDragon profile image
SlowDragonAdministrator

Apologies Astro16

Your post was rather hijacked

Come back with new post once you get full thyroid and vitamin testing done

Astro16 profile image
Astro16 in reply to SlowDragon

Thankyou Slow Dragon, i have just got an appointment with my usual Gp on 19 aug, so heres crossing fingers !!!

Thankyou x

Astro

SlowDragon profile image
SlowDragonAdministrator in reply to Astro16

Strongly recommend getting hold of your thyroid and vitamin results from receptionist or register for on line results BEFORE consultation with GP

Otherwise you are going in “blind”

You’re legally entitled to copies of your own blood test results

Ideally want results from last 5 years

Most recent thyroid test results and ranges for

…TSH, Ft4 and Ft3

Do you have autoimmune thyroid disease - confirmed usually by high thyroid antibodies at original diagnosis

Have you had ultrasound scan of thyroid

If yes, what were results

When were vitamin levels last tested and what were results and ranges

Ideally you want test results before consultation

Ring receptionist, ask if blood test results are available to view online, if you register for online access to your medical records

If test results not online, request printed copies of blood test results for last 3 years (or you choose how long)

Allow 2-3 days …then go pick up results

Come back with new post once you get hold of results

Far too frequently only TSH is tested…..completely inadequate

When were you diagnosed as hypothyroid

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Approx how much do you weigh in kilo

ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Batty1 profile image
Batty1

How much thyroid medication are you taking?

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