Weight gain

[Foxxyyh]

Has anyone gained a lot of weight with hypothyroidism? I have gained about 25lbs and don't want to leave my house. I am basically a recluse. I can't go to town, or work, I just about manage to make it to the store, but struggle because I have no transport and exercise is a non starter. I am always out of breath. I have isolated myself and pushed away friends because they've commented on my weight

[PurpleNails Administrator]

welcome to forum.

You haven’t been diagnosed very long have you? Standard starter dose is 50mcg. You were started on less. Do you know why?

Really important to get a hold of blood tests results & see how your progressing. Results, with lab range.

For full test you need TSH, FT4, FT3. TG & TPO Antibodies. Levo wont work well unless key nutrients optimal. Have B12, Folate, ferritin & vitamin D been tested.

It is likely you’ll need further increases until you are on a replacement dose which is right, usually this is gradually by 25mcg daily increase after retesting levels every 6-8 weeks.

Low ferritin often cause of breathlessness.

Many find losing weight difficult until on right dose.

[Foxxyyh in reply to PurpleNails]

Because I have an appointment with an endocrinologist and I'm on the waiting list. Appointment is in 1 year from now. Doctor wanted to wait until I saw the endocrinologist so I put myself on the lowest dose to be on the safe side. I will have to come clean with the doctor soon to have bloods done. Not looking forward to that.

[PurpleNails Administrator in reply to Foxxyyh]

Are you in UK or else where?

GPs can treat hypothyroidism, most diagnosed with hypothyroidism never see an endocrinologist.

Is your TSH in “normal” range? But FT4 & FT3 low?

Adding replacement initially tops up levels, but by 6-8 weeks it replaces thyroid natural output, & TSH is affected & lowered, making you appear “less hypothyroid” on paper. It Isn’t always progress to start on low dose & now started you need regular testing & replacement adjusted.

[Foxxyyh in reply to PurpleNails]

I realize that. That's why I'm going to put the doctor in the picture about buying my meds. He told me outright I need levothyroxine but wanted me to wait a year. Maybe I need a higher dose but I'm going to wait and see what my doctor suggests. I'll probably get a telling off for treating myself. I'm in UK

[PurpleNails Administrator in reply to Foxxyyh]

If he knew you needed levo why make you wait a year?

Makes no sense.

Doctors tend to step back entirely once you have started treating yourself.

[Charlie-Farley in reply to Foxxyyh]

Hi Foxxyyh

You are on a dose for a small child- this happened to me.

First off you need (quickly) a full thyroid panel. If you are in the UK you will NOT get this on the NHS. I can’t believe your doctor. He reckons you are hypothyroid but doesn’t want to treat you and make you wait a YEAR to see an endocrinologist.🙄

You can get a private blood test - finger prick you can do yourself or veinous draw, but you need a phlebotomist for that.

I’m going to tag SlowDragon in and ask her to provide her brilliant info dump which I was a lucky recipient of at the start of my diagnosis. In the meantime click on my face and read my bio - I think you will relate.

[SlowDragon Administrator in reply to Charlie-Farley]

Just did it as you were typing 😊

[Charlie-Farley in reply to SlowDragon]

You are a star!

[Foxxyyh in reply to Charlie-Farley]

I have upped my dose to 50mcg for the past 4 days. Looked in the mirror, still fat, still have puffy face and chin, fatigue, goitre looks very noticeable and I have a strange dimple/indentation in my throat area which the doctor just looked at and said a

[Charlie-Farley in reply to Foxxyyh]

Read my bio Foxxyyh I think you will relate to it. Just click on my face.

It won’t be resolved over a few days and it can take a while to see benefits in the mirror. I did find going gluten-free helped.

[Foxxyyh]

Also the goiter is pretty big now it can visibly be seen by others.

[PurpleNails Administrator in reply to Foxxyyh]

We are trying to understand why you are waiting a year & why need to see an endocrinologist at all. GP do not usually refer, is there something unique about your results? Some other endocrine issue? Scan of thyroid by ENT required?

As it is, you understandably began treating yourself, but that’s might mean you are expected to continue treating yourself. Staying long term on an inadequate dose is of no added benefit, but does pass the expense & responsibility of obtaining a safe & reliable source to you.

A swollen thyroid is common with autoimmune thyroiditis (Hashimoto’s) the thyroid swells as it is having to work hard to try and make sufficient hormone. Adequate replacement can improve / resolve it.

[Foxxyyh in reply to PurpleNails]

I am on NHS waiting list for an ultrasound scan and I'm told I have to wait 47 weeks, almost a year . That's the waiting list. I have only been on of the meds for 2 weeks so was hoping it would just take time and patience. I have had side effects, sickness, some diarrhea and anxiety. I was afraid to go up to 50mcg Incase it had the reverse effect eg. Hyperthyroidism.

[PurpleNails Administrator in reply to Foxxyyh]

A years wait list is appalling. Pre covid I was sent for thyroid scan direct, it took under 3 months. Was cleared as benign but months later it was noticed the function test had not been done. Post Covid lockdowns I developed a different neck lump. Direct scan was refused & had an additional consult via ENT to get to scan, but also within a few months.

Endocrinology won’t be conducting scan, that will be ENT / radiology. Ultrasounds can only look at the health of thyroid it can’t determine function. Blood tests are used for assessing function. They look at these things as separate issues.

There is a private option for scan, if you are near to - or can travel to London?

See link

thyroiduk.org/testing/priva...

2 weeks is early days, it might not be the effects of hormone rising, you might be reacting to excipients of pills.

I think to advise you accurately you need to share your results when you have them, then we can advise the correct information.

[Foxxyyh in reply to PurpleNails]

I will do that. I can't go to London I live in Wales and am not financially well off to afford a private appointment anyways. We just about make enough money for bills. I have had to have quite a lot of time off work from always feeling "unwell" and I don't get paid for sick days. I'm just taking each day as it comes at the moment. I get breathless at night for some reason, not sure if there is a connection with the underactive thyroid or not, and I've been sleeping a lot lately and just basically feeling depressed and not "with it".

[SlowDragon Administrator]

can you add results that GP had before starting on levothyroxine

Hypothyroidism is almost ALWAYS managed and treated by GP

There’s 2 million people in U.K. on levothyroxine

Why on earth would GP not start levothyroxine immediately?

Standard STARTER dose is 50mcg

Starting on just 25mcg makes you even more hypothyroid

Get FULL thyroid and vitamin testing 6-8 weeks after each dose increase

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

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 that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Foxxyyh in reply to SlowDragon]

As the doctor refused treatment until I had seen the specialist I took it upon myself to order the thyroxine. But aware that I may over dose I decided 25 was the best as a starting dose for now. My belly is still looking pregnant and I have a terrible large goitre and neck swelling. I don't know where to go from here

[SlowDragon Administrator in reply to Foxxyyh]

Get full thyroid and vitamin tests yourself via Medichecks

Highly likely you are more than ready for next increase to 50mcg

Your GP completely out of order not to start levothyroxine

What were results from GP that caused GP to refer you

[Foxxyyh in reply to SlowDragon]

For some reason he wanted me to wait for my specialist appointment in almost a year from now. I was getting more and more sick and didn't want to wait any longer. He said he would prefer to see what the results of my scan are first. I told him I've changed my lifestyle, dieting, walking a bit more. He told me none of that would help me lose weight. I have discarded my size 8 clothes and had to shop for size 12. I'm utterly embarrassed and upset. I've never struggled with my weight before.

[SlowDragon Administrator in reply to Foxxyyh]

Majority of hypothyroid patients gain weight until on eventual final dose levothyroxine

That’s likely to be at least 100mcg

Get tested and assuming results show under medicated then increase to 50mcg daily

Retest again in another 2-3 months

Repeat until symptoms resolved and labs show GOOD Ft4 and Ft3 ….plus OPTIMAL vitamin levels

[Lottyplum in reply to Foxxyyh]

After reading your post, I have to say, what a distressing situation and what appalling treatment you are receiving (though not receiving) from your GP. I am so very sorry for the stress+distress you're going through.. but you are at the right place for help. The info+support is 2nd to none+I am sure with their help you will find your way through.

[SlowDragon Administrator in reply to Foxxyyh]

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

[SlowDragon Administrator]

Levothyroxine doesn’t “top up” failing thyroid, it replaces it

Essential to get on high enough dose as fast as possible

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Hedgeree]

Hi Foxxyyh,

As SlowDragon has mentioned, do you have any recent blood tests results? If you post them and their ranges then forum members can make suggestions to help you.

[Batty1]

I have a question what did you feel like BEFORE you decided to buy your own Levo?

[Foxxyyh]

The same as I do now, Fat, absolutely devoid of energy, tired in the afternoon, sometimes had to take a power nap during the day, sudden rush of feeling cold and shivering, puffy face and neck, depressed and anxious.

[mrskiki in reply to Foxxyyh]

I can empathise, I used to buy size 8, and am now also out of breath and tired, anxious. I don’t look or feel like ‘me’ anymore. I’m not sure I recognise myself in the mirror, silly incident where I checked my security cameras, and was wondering what a woman was doing. Was me 😳. Leaving the house for work- I find I wear elasticated comfy clothes as never know what size I’ll be, and cover up well with tunics and a loose coat as self conscious. I don’t think your friends probably realised what they said, they just noticed a change, at size 12 you would still look slim next to many people, just not in your own mirror. Still hopeful to get my weight back down a bit even if not back to where I was.

Hopefully when you get some blood test results they may help with way forward. It’s difficult when you’re tired things take a bit longer but you can still get there xxx

[Foxxyyh in reply to mrskiki]

I am dreading telling the doctor that I self treated. But I know I have to because I need blood tests done and I'm going to have to be honest with him about taking the levothyroxine.

[SlowDragon Administrator in reply to Foxxyyh]

No point testing until been on constant unchanging dose of levothyroxine for 6 weeks

How much levothyroxine are you taking

Get vitamin D, folate, ferritin and B12 tested now

You also need thyroid antibodies tested

[Foxxyyh in reply to SlowDragon]

I'm on 50mcg a day now. I increased the dose because I'm fed up not seeing any change in my symptoms. Every morning look in the mirror, yep same puffy face and large stomach. Then to be told by someone I know that o look pregnant I'm at my wits end.

[SlowDragon Administrator in reply to Foxxyyh]

You have to be patient hormones are slow to get started

It takes 6-8 weeks for each dose increase to have affect

3-4 weeks after an increase you should start to be aware of some symptoms improving ……then as you get nearer 6-8 weeks you may notice symptoms starting to return, this is because your body is getting use to current dose and becoming ready for next increase

Likely to need several further increases over coming year but it has to be done SLOWLY

ESSENTIAL to get vitamin levels tested and both thyroid antibodies

Test with thyroid levels privately if GP won’t test now

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee