Carbimazole & Weight Loss?

[fish_turner]

I've lost 2st 10 this year through healthy eating and running, as well as my over active thyroid it turns out! Diagnosed in July and started Carbimazole 5mg 2 x daily 4 weeks ago. Resting HR is improving already (from 100 to 80). I would like to keep losing weight (I have 2st to lose to get my BMI in the 'overweight' category), but conscious this may be difficult on these meds. Does anyone have any advice please? Seeing the private endo tomorrow.

[PurpleNails Administrator]

What is the cause of your hyper? Doctors should check this but don’t always investigate, instead they treat all low TSH as hyper.

As weight loss is common when hyper regaining it once on carbimazole is expected. We are advised to be careful as we have become accustomed to larger apatite. At this time you won’t have have much control over metabolism and appetite so focus on adding nutritious foods.

Not everyone is the same. I gained weight when hyper & lost weight when levels in range.

10mg daily dose (5mg x2) is a really low starting dose, many start on 40mg, 60mg in severe cases. I had mild elevation from a nodule and started on 20mg. I’m wondering what your levels were to begin with.

Do you have access to your results?

For Full thyroid function you need

TSH

FT4

FT3

There are 4 thyroid antibodies

Thyroid Peroxidase (TPO)

Thyroglobulin (Tg or TGab )

If Graves suspected

Thyroid Stimulating Immunoglobulin (TSI)

TSH receptor antibodies (TRAb)

Also important to test

Folate

Ferritin

B12

Vitamin D

Nutrients often low if thyroid levels high or low.

If you are seeing a private endo ideally these should all be tested first.

[fish_turner in reply to PurpleNails]

This is what I can see in the NHS app from my bloods so far. Dr thinks a sever cold in June was the cause.

Thyroid results

[PurpleNails Administrator in reply to fish_turner]

TSH suppressed and FT4 & FT3 look high, although we need the ranges to see by what extent. FT3 is particularly high most ranges being for eg (3.8 - 6.0) your levels would be 6x the norm,

I can see they have tested TPO and TRab which I suspect are well above the range.

Antibody ranges are usually shown as a limit eg ( <1 ) or range (0 - 1)

Positive TRab is sufficient to confirm diagnosis of Graves but I am surprised you have been given a dose of 5mg 2x daily on that high a FT3 reading. It may not have sufficient impact to lower levels into range. Usually doctors are extremely keen to bring levels down quickly leaving many on too high a dose & willing to leave levels low as hypo considered safer than hyper.

Usually retesting is offered at 6 weeks post commencement of medication this will show how carbimazole have affected levels, adjustments are expected to keep within range. Do not allow doctors to judge dose by TSH alone this will not re reliable indicator after being hyper and may stay low when normally it would rise with lower levels. FT4 and FT3 levels need to be checked.

Your HbA1c results of 30 is very good. This measures the glucose attached to red blood cell so considered to be an accurate measure of the passed 3 months. Being hyper can increase it.

The usual range is

* HbA1c below 41 mmol/mol (6.0%): Non-diabetic

* HbA1c between 42 and 47 mmol/mol (6.0–6.4%): Impaired glucose regulation (IGR) or Prediabetes

* HbA1c of 48 mmol/mol (6.5%) or over: Type 2 diabetes

[fish_turner in reply to PurpleNails]

Here are the ranges too, thank you so much for all your help so far

Test results

[PurpleNails Administrator]

July FT4 (9.1 - 19.05) 29.9 (209%)

Sept

FT4 (9.1 - 19.05) 25 (159.8%)

FT3 (2.67 - 5.70) 18.10 (506.56%)

Now we can see the range you can see how high above the range your levels are.

As suspected your TPO & TRab are both well above range.

Do you have a further blood test scheduled to see how carbimazole is working?

Have you found an improvement in your symptoms?

Between July & September your FT4 is showing decline. Unfortunately no FT3 to compare.

Do you remember the time the tests were taken. FT4 is lowest in morning and rises after eating.

The percentage shown is how high your levels are. With Graves it’s not rare for levels to be in excess of 3 / 4x the norm.

Your FT4 is double the norm but your FT3 is disproportionately high (over 5x). FT3 driven Graves is a known phenomenon and occurs in 15% of cases.

The hope will be the FT4 & FT3 balanced out once the are under better control but if this proves difficult (eg low FT4 but still high FT3) don’t panic. There are other methods to combat this. Instead of relying on cabimazole to reduce the the levels equally and adjust the medication to keep you in range. Known as titration. You can use an alternative approach known as Block and replace method. B&R means you take higher doses of anti thyroid to entirely block your own function then a suitable level of replacement levothyroxine is taken.

It’s fully explained here

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

There is also this site. Which has many leaflets about thyroid issues.( 17 in total)

btf-thyroid.org/Pages/Categ...

These are the leaflets hospital often hand out so they are factual. I’m sent ‘out of date’ copies frequently. I find doctors prefer dish them out rather than answer question. Read them in advance.

There a warning card regarding anti thyroid which may be useful.

Info on Eyes issues. Has any one mentioned to be vigilant for eye concerns?

Graves occurring after a virus and other traumatic or stressful event is often noted. Graves is said to be stress driven, how severe was this cold?

Has the GP referred you to endocrinology, the wait can be months is this why you went private? Let us know how that goes.

This is much further in the future but usually anti thyroid medication is given for about 18 months the aim being the condition goes into remission. Some need longer but protocol limits the time recommended you remain on carbimazole.

Then definitive treatment options are recommended. Eg surgery or Radioactive iodine treatment. Such treatment result in hypothyroid and referral back to GP for management. Medics view hypothyroidism as an easily managed condition (and the majority of the time it) but full testing is not alway completed & many on this forum and the main thyroid forum have struggled to find the help they need.

NHS usually offer Radioactive iodine treatment as 1st option which ablates the thyroid, if you have contact with young children, pregnant women and TED this wouldn’t be suitable.

Nearer the time you can do further research. Don’t be rushed into a decision.

[fish_turner]

Gosh, I am in tears with your kindness. Thank you so much for caring about a stranger on the internet and taking time out of your day to do this!

My GP hasn’t scheduled my next blood test yet. Should I push for this?

I’d say I’m completely back to ‘normal’ now, & from the looks of my heart rate data (the symptom that triggered me to get tested) it looks that way - I went into hospital for an ECG due to racing heart and shaking limbs.

Both blood tests were shortly after midday, and I tend to have a cereal/nut bar around the same time each morning.

I was advised by my GP to go private as the waiting list is so long (I thankfully have insurance through work), so I’m seeing someone at the BMI in Windsor on Thursday. Is there anything in particular I should ask for?

Heart rate data from garmin

[PurpleNails Administrator in reply to fish_turner]

Six weekly testing is standard until stable.

Firstly you need to see how you respond on dose given.

My initial instinct was that 10 mg was too low a starting dose to impact levels. Your FT3 Being particularly high. As you feel better it’s a good sign the levels are coming down. If the level isn’t adjusted then there’s a chance the levels will continue to drop making you hypo which is also to be prevented.

I would request thyroid function be tested and ideally the nutrients (folate, ferritin, B12 & Vitamin D for the 6 week mark. Especially if symptoms alter or worsen.

If GP not willing there are private options. Home blood testing kits via post & finger prick sample.

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

Some packages include all Thyroid function, nutrient and Antibodies.

Antibodies are useful for diagnosis, but not necessary for continuous monitoring . Longer term there is an argument to recheck before testing remission. Low antibody levels being a good indicator. Often NSH refuse to recheck levels.

Many say gluten free diet helps improves symptoms. There no test for gluten intolerance only celiac.

Ask your specialist if they agree you have Graves / confirm diagnosis.

They may just want to looks at results but when I went to my appointment

they examined my neck to see if any serious swelling or any asymmetry. One side more swollen than the other may need investigating eg a scan.

Take a bottle of water with you, they may want to feel you neck while you swallow.

My doctor asked me to show her my stomach. I’m not sure why, she wasn’t very polite about the view either!

She did glance at my eyes. (I won’t go into that) but mention any eye issues & ask for an ophthalmology referral if any TED signs.

Ask What will the treatment plan be.

Ask how often you will be monitored.

[fish_turner in reply to PurpleNails]

I’m so grateful for all of this, thank you. I’m somewhat concerned on the eye front - never worse glasses until mid 2018 and my prescription has changed 3 times since then - mostly astigmatism but thinking this may be thyroid related.

I’ll make sure I go armed with all of this, can’t thank you enough for your help, really.

[PurpleNails Administrator in reply to fish_turner]

I never needed glasses until 3 years ago. Also astigmatism & had 3 new prescription since.

I also have worsening dry gritty eyes & mis alignment which are all signs of TED (and some other issues not typical, like in growing lash & spots near lid) Because the Misalignment had been there since childhood the specialist said not to do with thyroid. I been back and forth since, & I don’t have Graves I have a hyper nodule negative for autoimmune. This also makes them insist not TED but Ive read TED can occur without TSI /Trab formation.

Do you have any of these symptoms?

* Change in the appearance of the eyes (usually staring or bulging eyes)

* A feeling of grittiness in the eyes or excessive dryness in the eyes

* Watery eyes

* Intolerance of bright lights

* Swelling or feeling of fullness in upper or lower eyelids

* New bags under the eyes

* Redness of the lids and eyes

* Blurred or double vision

* Pain in or behind the eye, especially when looking up, down or sideways

* Difficulty moving the eyes

[fish_turner in reply to PurpleNails]

None of this, but good to know what to look out for!