worried about weight gain

[ShellBellc1979]

Hi this is the 3rd time I've had graves disease in 9 years! I'm just wondering if my consultant will try to push me to have RAI this time as I was told I couldn't be on medication too long or often last time. Also I've worked really hard this year to lose lockdown weight & I'm worried about gaining again. Any advice much appreciated xx

[SlowDragon Administrator]

Welcome to the forum

Please add most recent thyroid and vitamin results

Plus say what medication you are currently taking, and what vitamin supplements

[ShellBellc1979 in reply to SlowDragon]

Hi I haven't getting the results yet my gp just told me I was very overactive again! And started me on 20mg of carbimazole yesterday thank you

[SlowDragon Administrator in reply to ShellBellc1979]

Always get actual results and ranges

Essential to test vitamin D, folate, ferritin and B12

[ShellBellc1979 in reply to SlowDragon]

I'm not sure my gp will give me these results, no disrespect to them but Don't think half of them know what their doing, the one I saw last week was trying to indicate I had an alcohol problem because of my tremor even though I was telling her I knew what was wrong as I've had it twice before 🤦🏻‍♀️

[PurpleNails Administrator]

Usually you lose weight when hyper and gain what you lost when on right level of medication to stabilise thyroid levels.

Medics say if you gain more its because you are accustomed to having larger appetite.

I think it's often due to high a dose of medication (carbimazole or PTU) making levels go too low.

You need to be dosed by FT4 & FT3 not TSH. After surgery or RAI inadequate replacement also can result in difficulty losing weight,

I've taken carbimazole over 3 years. Doctors do encourage RAI after around 18 months on carbimazole or once you relapse but ultimately they can’t force you to undergo treatment. Nor can they remove medication (unless taking it become an issue).

The risks are low with long term carbimazole, but they are there & doctors tend to over emphasise them to persuade you to undergo their preferred treatment.

[ShellBellc1979 in reply to PurpleNails]

Thank you can I ask why you've been taking carbimazole for so long? This is the 3rd time I've been taking them but it's usually stopped after 18 months

[PurpleNails Administrator in reply to ShellBellc1979]

My hyper is not autoimmune - I have a toxic or hot nodule.

RAI was suggested at my first appointment as nodules do not have possibity of going into remission. I raised option of surgery but was told RAI was the treatment. I was able to see an ENT surgeon & he said RAI was most straightforward but would operate if I chose. Then he discharged me, so I’d have to battle for surgery.

The endocrinologist specialist has also discharged me now - to GP for monitoring.

I fine with this, as neither the specialist or GP really have a clue how to fine tune adjustments. The GP tests me - when I remind them it’s due.

The endo specified the FT4 should be around 15 - but neglected to state range.

As I have access to results so knew my levels were really too high. The range used was different - so the increase looks little but as just within range they seemed to have ignored it.

Plus they hadn’t noticed my carbimazole was up for review and I could order any more so I had to actually speak to a doctor, something I try to avoid.

They GP agreed to slight increase as I convinced her I’d been taught how to manage it by specialist nurse (which was mostly true). I’d only visited consultant 2x the rest of the time the nurse would call & we discuss dose changes.

I was a little surprised the GP then asks when I’m planning to have RAI? I really thought I wouldn’t have to have any more of these conversations once discharged by specialist. I just explained I’m a carer and arrangements weren’t in place. Wasn’t keen right now.

I could just say - no, I’m never going to have it but why create a clash. For now I’m on long term carbimazole, with every option open.

18 months is the usually aim for being on carbimazole., but remaining on carbimazole if it makes you hypo isn’t appropriate. Stopping carbimazole at 18 months if you are still going to go hyper also isn’t appropriate.

There lots of research showing remaining on low very dose carbimazole longer term (for years) is a much safer option that repeatedly restarting carbimazole. The higher dose & resuming medication is riskier than continually staying on very low dose.

It’s very important you track and monitor your own results.

Either set up online access (if available) or collect printed results which will have lab ranges. - ranges vary between labs so very important.

Don’t accept verbal of handwritten results (too much room for error) and never trust a doctor saying ok. Ok just means in range. Doesn’t tell you what been tested, (they might have not tested what you actually need) where in range the result is or where if the result right for you.

What has doctor tested?

[ShellBellc1979 in reply to PurpleNails]

Wow that's pretty worrying I'm learning more from this forum in 1 day than I have from so called specialists in 9 years! I'm not sure what they tested to be honest j need to arm myself with the information I've been given on here from now on, I just attended my gp last Tuesday after experiencing some symptoms for a few days, got a phone call on Wednesday to say I was overactive again, and to wait for endo appointment. I've been ill all week so rang back up yesterday & they sent me a prescription for 20mg of carbimazole which I started last night

[PurpleNails Administrator in reply to ShellBellc1979]

The doctor may not have completed a full test. Often they look at TSH only. I was told many times my results were ok, but I later found out sometimes the tests weren’t requested or didn’t come back. The results which were available were in range but the missing results might have shown I had hyper.

My elevated levels was missed repeatedly for about 5 years so I’m now firm with knowing what’s to be tested and viewing the results.

Is the 20mg a single dose or 2x 10mg. Initially it’s beneficial to take in 2 smaller doses? So spacing the dose out 12 hourly eg 08.00 & 20.00 or whatever time suits is ideal. Taking 1 dose is safe but leaving a wider gap between doses might allow a window to start producing more hormone.

Propranolol often prescribed with carbimazole. It can help with symptoms while carbimazole addresses route cause, Have you previously had this?

[ShellBellc1979 in reply to PurpleNails]

It's just 1 single dose I did think it strange as last time I was prescribed it in 2 doses. I had propronal Last 2 times but haven't been prescribed this time

[PurpleNails Administrator in reply to ShellBellc1979]

If rising levels have been caught early you might not need split dose or propranolol.

Has a repeat test been arranged for 6 weeks time. GPs often make referral then do not more. But specialist can take a long time to arrange consult and blood test.

Don’t allow yourself to be left in limbo. GPs can arrange thyroid function test or hospital team can sent blood request form for you to arrange test at practice, hospital or walk in clinics.

Just make sure everyone knows what supposed to be happening. I was left months after my referral because the hospital sent me a blood test form but the practice wouldn’t let me book a draw because I didn’t have an appointment through yet. The hospital were waiting for results before scheduling appointment.

[ShellBellc1979 in reply to PurpleNails]

I received letter this morning from endo to say I should have appointment by 14th October

[PurpleNails Administrator in reply to ShellBellc1979]

That is actually quite quick. Some report they don’t hear anything for months. You’ll need a repeat test before October. Likely the dose will need adjusted.

[bookish]

Are you already gluten free, or on autoimmune type diet?

[ShellBellc1979 in reply to bookish]

Hi no I'm not I have just been calorie counting & excersing, but the way I'm feeling at the minute exercise is the last thing I want to do!

[bookish in reply to ShellBellc1979]

Exercise will probably make you worse at the moment, with active Graves'. To be honest I wasn't thinking about the weight, but about you still having ongoing underlying autoimmunity. I found that a gluten free autoimmune diet slowed my autoimmune/inflammatory conditions (not Graves') down noticeably. Not gone, but better. Getting vitamins and minerals optimal means making sure that you are able to absorb from diet or supplements, and often an unidentified food intolerance is playing a part there. Some foods are more commonly 'culprits' than others, so if you can't test the lot (expensive) a trial elimination diet is a good alternative. Might be worth a try if you haven't. Lots of info online about AIP type diets. I used Datis Kharrazian mainly ( drknews.com/autoimmune-gut-.... The idea is to restrict and then slowly reintroduce, not to get panicked about everything you eat and reduce to only a few foods for a long period of time (in fact that is the opposite of what you want to do). Best wishes.

[ShellBellc1979 in reply to bookish]

Thank you so much I will have a look x

[pennyannie]

Hello ShellBellc and welcome to the forum ;

Well, considered Graves is an auto immune disease and there is no cure, it's for life anyway :

All the mainstream medical can do to help relieve the symptoms is prescribe Anti Thyroid drugs like Carbimazole or Propylthiouracil ( PTU ) to block your T3 and t4 rising any higher and buying you time in which the hope is your immune system calms down by itself.

The most recent research is suggesting that the longer the AT drug is prescribed, the better the outcome for the patient - pubmed.ncbi.nlm.nih.gov/338...

Graves as it is a poorly understood and badly treated auto immune disease and once triggered, it's likely to happen again, and it's all a question of degree of incapacity for you, the patient.

As to why you have Graves Disease is the question, and you may need to look within yourself as it's said to be driven by stress and anxiety, though there can be a genetic predisposition, or it can pop up out of the blue through a sudden shock like a car accident or the unexpected death of a loved one.

If well on the AT drug there is no reason why you can't stay on this treatment - though it is the most expensive option and probably why not encouraged by the unenlightened endocrinologist and hospital.

RAI on the other hand is the cheapest option but having had this treatment myself, and having been badly let down by the NHS and now self medicating to be as well as I can be - I can't recommend this toxic substance to anybody : ncbi.nlm.nih.gov/30667296

You may like to dip into the Elaine Moore Graves Disease Foundation website as this was where, along with this amazing forum I started my thyroid journey, around 10 years after RAI thyroid ablation for Graves and very unwell.

I now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.

Please start reading as you will likely have to become your own best advocate.

[ShellBellc1979 in reply to pennyannie]

Thank you so much for your reply & I'm sorry to hear you have been left with extra health problems 😔 I was and still am very reluctant to have RIA treatment it just doesn't sit right with me.When I first found out I had graves 9 years ago my sister and mam all had it within months of each other. Luckily they have both stayed in remission although my mam now has vitaligo which is another auto immune disease.

This might sound silly but we were on holiday when my symptoms started up this time on a boat trip to be precise & my 16 year old son jumped from the boat along with many others but he didn't jump far enough out & hit the side of the boat on the way down winding himself, Luckily my brother was already in the water so got hold of him, I was in shock couldn't stop shaking & literally haven't been the same since 😳

[pennyannie in reply to ShellBellc1979]

Well yes, it's likely this incident has triggered your immune system response.

I was verbally abused and physically threatened by a man I employed as my assistant manager and spent the next few months going through company disciplinary procedures against him.

In the middle of all that I got diagnosed Graves and when I asked what and why, just told to stop smoking and when i said I'd never smoked anything in all my life, just got a shrug of the shoulders and told at my very first endo hospital appointment that I was to have RAI the following year, which I duly did as at the time, I simply didn't know any better.

I believe I was undiagnosed hypothyroid for very many years and this incident simply flipped me as my only symptoms were insomnia, and dry gritty eyes plus of course, the fatigue and weight excess I'd lived with for years .

I did loose some weight within the 18 month window being treated with AT drugs and this was the first time in my life I could eat for England and loose weight and thought it wonderful - though it was short lived

Graves can wax and wane throughout one's life and there are 2 sets of antibodies generally referred to as TSI - a Thyroid Stimulating and a TR ab - a Thyroid Receptor Blocking antibody - so each as extreme as the other - and they can fight for control.

Basically one set stimulate thyroid hormone production resulting in typical hyper symptoms and excess stimulation whilst the other set can block thyroid hormone production causing typical hypo symptoms - currently on analysis the NHS do not make a distinction between these 2 extremes - though you experience the consequences.

At any given time you can have blocking or stimulating antibodies in ' power ' and there are also phases where both negate each others ability to do anything and you feel relatively well, for you.

If your doctor can just prescribe some AT drugs, this may not be such a big deal - and just stay out of the hospital setting, as let's face it, you know the drill anyway, as the system will likely be looking for a final quick fix.

[ShellBellc1979]

Thank you so much I really appreciate you taking the time to respond and share your story with meI'm so pleased I have found this forum I'm learning more in 1 day than I have in 9 years from so called specialists. My letter has arrived from the hospital saying I should have appointment by 14th October. I will make sure I'm armed with all the information I'm gathering before I attend

[SlowDragon Administrator]

suggest you get vitamin testing done before seeing endocrinologist

Vitamin D, folate, ferritin and B12

Privately if GP is unhelpful