Can Graves be controlled...How can I help my mum? - Thyroid UK

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Can Graves be controlled...How can I help my mum?

arcticsun
arcticsun
31 Replies

So I have a question that keeps whirling around in my head.

Is Graves controllable?

My 65 year old mother is having her second episode of severe symptoms in 18months. Diagnosed with Graves in 2015, confirmed with positive test for TRAb, she has been on Carbimazole ever since. Her endo is disinterested, and has told her to have RAI. Though he denies her symptoms have any relation to her thyroid. I am in the process of having her consult with a private endo.

Anyway, her TRAb are currently elevated :

1.72 (0.00-0.81 IU/L)

1. I do not know if they are elevated beyond where they have sat since her 'somewhat' recovery from her initial diagnosis, as they have not been tested in between. Do any of you experienced Graves people think this is a very elevated? Are these dreadful episodes that leave her bed-bound being caused by the Graves flaring?

2. Could it really be that her Graves is just uncontrollable, leaving her is a position where the options really are surgically remove her thyroid, or try and hang in there, and risk these continuous, dreadful attacks until there is the potential for her to try the immunisation that's being trialled?

3. Would optimising vitamins have any real affect on the antibody levels? We know that her active b12 is low in range and I plan asking her gp to trial b12 shots for her, but I just wonder if this is really going to help this other major issue?

4. If she has surgical removal of her thyroid, will she still have these episodes, only it will be even more concentrated on her eyes and heart? I read that these are then the focus of the attacks once the thyroid is removed, and given that she has heart palpitations and raised heart rate, and sore/gritty eyes with blurred vision already this seems like a scary prospect.

Feeling very frightened tonight that I might not be able to save her from the hell that's she's in :-( and just want to understand a bit more about all this before speaking to the specialist.

31 Replies
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jimh111

I’ve not got much knowledge on Graves’ but from what I’ve read and talks I’ve been to it’s important to get the best treatment you can as early as you can. I believe Graves’ usually dies down and whilst it is ongoing there are various treatments. If thyroid hormone levels are high beta blockers and anti thyroid drugs such as carbimazole can be prescribed. Eye problems can be mitigated by the use of eye drops and steroid treatment.

If high hormone levels can’t be controlled I think surgery is a better option than RAI. There is some evidence that RAI can increase the risk of eye problems. Many patients who have RAI are fine but a few do very badly.

I’m sure some patients with Graves’ will reply. There are some patient support groups specifically for patients with Graves’ or thyroid eye disease. If she is experiencing eye problems I would push very hard for her to see an eye specialist.

A disinterested endo. is disgraceful, I suspect the recommendation for RAI is their least effort option. RAI can be a valid treatment, when chosen on the basis of clinical assessment, not when motivated by laziness.

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arcticsun
arcticsun
in reply to jimh111

Hi Jim,

Thanks for the reply. I hope mum's new private endo (recommended on here) might be more helpful than her NHS endo has been. Yes her NHS endo just wants her off of his books :(

I think I am just trying to see what the way forward may be, if there is a real way forward, so that I might be able to gauge if this new dr is heading in the right direction when we consult with him. I wonder if her Graves might abate at some point, but I realise it isn't a question with any definitive answer.

Thanks again.

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HiddenThis reply has been deleted
arcticsun
arcticsun
in reply to Hidden

We've finally kicked him to the side :-)

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purple64

Avoid RAI. I still have elevated antibodies but my TSH, t4 levels are within range. At the moment I take 5mg Carbimazole daily. I also take vit d 1000 mg and magnesium 375. You can relapse with graves and removing the thyroid or having rai will not soviet the problem of the antibodies you will become under active. I would find another Endo or ask GP to refer to another Endo. Keep us posted and good luck.

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arcticsun
arcticsun
in reply to purple64

Thank you purple.

Yes mum has a consultation soon with a new endo that was recommended on here.

I wonder if her episodes, where she is so floored she is house/bed-bound, are being caused by the Graves or if it's something else.

Do you know if b12 being low could affect the auto-immune disease? I know it can affect health in itself?

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purple64
purple64
in reply to arcticsun

I'm not sure about B12 might be worth asking when you see new Endo. I have to say I get days when I am so exhausted its as much as I can do to put one foot in front of the other. I do get dizzy and I am waiting for cortisol test results. Low cortisol can cause exhaustion I think. Maybe ask for that to be tested as well if it hasn't been done. Let me know how she gets on. Take care

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arcticsun
arcticsun
in reply to purple64

Hi Purple, she has actually just had her cortisol results back, and her levels are low in the morning, and still low at lunch time. Better by dinner time. So it looks like adrenal fatigue is a factor as well, though it's no great surprise given what she's been going through. I really hope you are soon without days where you feel so exhausted. Thanks for the input, much appreciated.

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purple64
purple64
in reply to arcticsun

Are they going to do anything about the low cortisol 🤔. Thank you . I can only say from personal experience the symptoms and maybe some clues. It's a very frustrating disease

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arcticsun
arcticsun
in reply to purple64

We did the saliva cortisol ourselves through regenerus lab. I have my doubts that any of the doctors she will see will do anything about it. Though I will ask her new private endo what he thinks about it. If we have no luck through the official channels I plan to ask Dr Peatfield's patients on here what his approach is...what supplements etc.

It is so very frustrating. Such a relief that this forum exists, or I would be so lost about what to do and where to go. I am also finding Elaine Moore's website, and the ability to ask her questions on her forum very helpful.

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fibrolinda

When were her TSH free t4 and free t3 tested and what were they, just checking she hasn't dropped to hypo levels.

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arcticsun

Hi Linda,

Thanks for replying. She had a blood test 10 days ago.

14th Feb 2019 Medichecks

TSH 1.95 mIU/L (0.27-4.2)

FT4 19 pmol/L (12-22)

FT3 5.18 pmol/L (3.1-6.8)

21st Dec 2018 NHS

TSH 1.74 mIU/L (0.55-4.78)

Free T4 13.4 pmol/L (11.5-22.7)

Her ranges are all rising, so I wonder if she is heading towards hyper again. Is this what tends to happen with a Graves flare do you know? Though her TSH is also rising...hmmm

Her FT3 wasn't tested ever until 10days ago. Her NHS endo declined on the basis 'it's not needed'...……...I know!!! :(

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jimh111
jimh111
in reply to arcticsun

TSH does jump about a bit naturally. It could be that on 21st Dec her fT3 was higher and this led to the lower TSH. Forgot to say smoking is very bad for Graves', just in case she smokes. There is some evidence that selenium supplemtation can help, it's not strong evidence but there's no harm in trying. It may be that it works for some and not for others.

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arcticsun
arcticsun
in reply to jimh111

Thanks jim, no she doesn't smoke, and never has. She's a goody two shoes when it comes to healthy living. Wish it was serving her better!

I will look into Selenium- Thank you!

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Valarian
Valarian
in reply to arcticsun

The December FT4 looked a bit low anyway. FT3 and FT4 were both in range last time (how much carbimazole is she taking currently ?) Do you know what her TSH was at the test prior to Devc 2018 ?

You mention B12, has your mother had a full vitamin panel done ? People with thyroid problems may have other deficiencies, including vitamin D, whch must be hard enough to maintain during winter in the north of Scotland. even for healthy people.

Re the eye problems, discuss these with the new endo - they may suggest referral to a specialist. Quite often it's just a case of monitoring or eye-drops, but note that you need to get TED ruled-out or sorted before considering RAI.

As for RAI or TT - neither are a first choice option for any of us, but if your mother's Graves' can't be controlled effectively with carbimazole, maybe it would be worth weighing up the pros and cons, hopefully with the support of a more understanding endo.

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arcticsun
arcticsun
in reply to Valarian

Hi Valarian,

Thanks for the reply, sorry for the delay...life!

She takes 2.5mg Carbimazole a day.

She was tested in June 2018: FT4: 12.2 TSH: 1.61

Yes she had a full panel:

Serum Folate: 10.21 ug/L (>3.89)

Active B12: 57.9 pmol/L (37.5-188)

25 OH Vit D: 117 nmol/L (50-175)

Ferritin: 88.1 ug/L (13-150)

Iron-Serum: 24.93 umol/L (5.8-34.5)

T.I.B.C.: 47.13 umol/L (45-75)

U.I.B.C.: 22.2 umol/L (24.2-70.1) LOW

Transferrin Saturation: 52.9% (20-50%) HIGH

CRP High Sensitivity: 0.41 mg/L (<5)

The b12 was flagged to me as low in range, and also Folate. How does vit D look to you? Elaine Moore has also red flagged the iron results and previous fbc results as perhaps indicating hemochromatosis. Hope that NHS will test for this, as private test is £300, but have my doubts :(

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purple64
purple64
in reply to arcticsun

When I mentioned at the hospital that the GP never test T4 or t3 he said they won't. The only way I get them done is when the endo gives me a blood test card to take to GP 🙄😤

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arcticsun
arcticsun
in reply to purple64

Mum's current endo refuses to ever test FT3, as it's irrelevant!

I have had her recent bloods done by medichecks. I think the new endo will want FT3, but as he is private a imagine the GP will decline to run them...

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purple64
purple64
in reply to arcticsun

If it's a private endo they will run far more tests than an nhs one from what I've heard. I have been debating whether to go private but GP has to refer me first! Good luck and keep us posted

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arcticsun
arcticsun
in reply to purple64

Thanks purple, good luck to you too!

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Maria444

I have Graves. I had to take Rai because it was difficult to control the thyroid. My problems with my eyes are dryness and feeling like glass inside tem. They were a little bit sticking out and swolen and I was given selenium for some time and worked well. I put clinitas in my eyes everyday. Bright light bothers the most. So sun glasses.

For Graves diet and vitamin D is very important. No gluten, no dairy and loads of fruit and veg. Best to eat fish from cold water like haddock and Cod and salmon. Avoid almonds, soy and when eating broccoli or coliflower cook them well and never ever eat grape fruit. It is important that your vitamins are leveled otherwise the medicine will not work. I was told to take 500mg vitamin C with the T4 I take T3 as well. In six months I lost 2 stones. I am 52 and was in avery good shape before I went back to swimming and power walk

You need to have patience because it takes time for the medicine to work. Set a goal an your mind to it

I wish your mum the best

Oh you can have goat 's milk a little

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arcticsun
arcticsun
in reply to Maria444

Hi Maria,

Sorry for the delay in getting back to you.

Thanks for the diet/vitamins advice.

Mum says her eyes are gritty, and her vision is now blurred. Her eyes don't appear swollen just now. Thanks for describing your eye symptoms.

I hope it will be easier to find patience once we feel like someone cares about how poorly she is, and is trying to help us, help her. It's very frustrating that nearly 4 years on she seems as sick as ever, and there is no one within the medical world who particularly cares, or shows any willing to get to the bottom of it rather than tell her she has now developed ME.

Thanks again for taking the time to try and assist us.

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Maria444
Maria444
in reply to arcticsun

No good. Try to change tbe diet and eat mediterranean without bread and dairy

it takes time but it is worth

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pennyannie

Hey there again !

Graves is an autoimmune disease, and realistically it is when the antibodies start attacking the thyroid, that you get symptoms that you know need you to go to your doctor.

The thyroid is a major gland responsible for the whole body's metabolism, including the mental, physical, emotional, spiritual and psychological wellbeing of a person.

So, when it goes under attack, or goes a bit haywire, it can be very distressing and hard to understand and or manage.

Conventional medicine for thyroid disfunction doesn't really pay much attention to the antibodies, the treatment is the same irrespective of the numbers, as they can't control the autoimmune aspect of the disease anyway.

What they can offer is anti thyroid medication like Carbimazole to try and block the over production of the thyroid hormones, and there are several treatment options to try.

I was diagnosed at 56 and offered only Carbimazole, and was told I was to have radioactive iodine treatment, which was perfectly safe, in about 15 months time.

The Carbimazole medication resolved my worst symptoms and I put my trust in the hospital doctors, and was totally compliant, not knowing anything about Graves Disease.

Looking back, knowing what I do now, I truly believe my age was the deciding factor in my treatment options being nil.

I was in a one way street going to radioactive iodine, and yes, it is very lazy doctoring.

And yes, it is the quickest, cheapest treatment option to get you off the outpatient lists and discharged back out into the wilderness to the unsuspecting primary care doctor.

Some people achieve remission on anti thyroid medication.

Some people stay on the anti thyroid medication for years.

Some people get offered alternatives to Carbimazole

And yes, this all takes time and money over a period of years.

Obviously the name of the game is reduce the antibodies - 64 million $ question.

This will come down to the individual and that may mean diet and life style changes.It might mean removing stress triggers, it might mean learning to put yourself first and being a bit selfish, and looking after the " you " which maybe has been on the back burner for far too long.

It is vital that the basic building blocks for better health are in place.

Ferritin, folate, B12 and Vitamin D all need to be at optimum levels for any thyroid medications to work.

This is especially true when the thyroid is malfunctioning as the metabolism of essential nutrients from food may not have been happening.

I see you used Medichecks for your mum's thyroid results, maybe an additional test for these vitamins and minerals would be prudent and then repost with the results and ranges so considered opinion and suggestions, can be offered to you.

Please do not waste energy worrying about her thyroid blood test - that bit is out of your control - it looks as though her T3 and T4 are now in range - sending a hug -

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arcticsun

Hi pennyannie,

Thanks for continuing to help us!

We have had her vits and minerals tested:

Serum Folate: 10.21 ug/L (>3.89)

Active B12: 57.9 pmol/L (37.5-188)

25 OH Vit D: 117 nmol/L (50-175)

Ferritin: 88.1 ug/L (13-150)

Iron-Serum: 24.93 umol/L (5.8-34.5)

T.I.B.C.: 47.13 umol/L (45-75)

U.I.B.C.: 22.2 umol/L (24.2-70.1) LOW

Transferrin Saturation: 52.9% (20-50%) HIGH

CRP High Sensitivity: 0.41 mg/L (<5)

B12 was flagged as being too low, and also folate not great.

Elaine Moore has suggested that she is tested for hemochromatosis as she has high/low results that correspond with this, and may also disguise the B12 actually being pernicious anaemia.

Cortisol saliva test shows low cortisol both first thing in the morning and at midday.

Yes I think she should try and avoid any drastic, irreversible intervention with her thyroid! I will continue to plow through all the info so I am armed to discuss this all with her new doctor.

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pennyannie

Hello " up there "

Yes, I'm no SeasideSusie but there do appear to be some areas there that need looking into.

You have certainly covered all the basis, when are you seeing the new doctor ?

How's your Mum doing ?

Best wishes from me " down here " in Cornwall.

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arcticsun

Hehe...opposite ends of the country! We are literally 10miles from John O'Groats! :-)

Mum has a 30min telephone appointment on Monday evening. Feeling a bit nervous about it, as one does tend to pin hopes on each new intervention (I saw so very many 'new' doctors, mostly private, when my husband and I were trudging through the world of miscarriage/immune issues, so I'm very familiar with this feeling).

Mum isn't doing too great. Sunday was a better day, but today we went to visit and had to leave shortly after as she just felt too unwell for company. All troughs just now, but hopefully we'll find some peaks soon.

Best wishes from 'up here' :)

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SeasideSusie
SeasideSusieAdministrator
in reply to pennyannie

I gave my interpretation of the Active B12 result on a previous thread of arcticsun's a few days ago here

healthunlocked.com/thyroidu...

Other nutrient levels were fine.

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pennyannie

Thank you, I'm not equipped and know that you are, sorry, didn't realise you had already replied.

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SeasideSusie
SeasideSusieAdministrator
in reply to pennyannie

Not a problem pennyannie it's not practical for us to check previous threads all the time before replying, the member name was familiar so I had a look to see if I'd responded before :)

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pennyannie

Hey there, it's me again with a little P.S.

I don't know if you have this paper but it is on this website, but I don't know how to resurrect it for you:-

Professor Toft article from December 2017 Journal of the Royal College of Physicians

Edinburgh : Thyroid hormone replacement - a counterblast to guidelines :

and I quote from page 3 :

" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy or surgery in patients with Graves disease irrespective of age or number of recurrences of hyperthyroidism. "

I think that says it all - don't you.? Take good care of yourself as well as " Mum " .

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