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Thyroid UK
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Graves, hypo symptoms, no longer functioning, please help!

I'm reaching out to this community some time after initially joining to see if you can help me help my mother.

I initially joined as I was having miscarriages and after 5years of fighting to get help my normal tsh finally slumped enough (from 1.2 to 3.4) to get some t4, and hey presto, we conceived and carried our little boy to term, and now have a very lively 2 year old. Thank you for the help and reassurance that my thyroid symptoms were related despite completely normal bloods for years!

I am back and desperate to help my mum. She is 65, and has had the same hypo thyroid symptoms as me all her life, with normal bloods. When she turned 60 she was diagnosed with breast cancer, and had mastectomy and chemo. A doctor (former gp) advised that breast cancer and low iodine consumption where related, and stupidly we jumped on board the iodine self-administering train without enough research first! 2 years after the chemo, and 4months after iodine started she became very hyper thyroid (TSH of 0.01). She was diagnosed with Graves, and has been on carbimozole ever since (3years). Each time they have tried to take her off of it she becomes hyper very quickly again. She is on half of the recommended minimum dose.

2years ago she suddenly became very unwell (she had been battling fatigue for a long time, but considerably worse since Graves, she has also had spells of sudden elevated heart rate and palpitations, which cardiologists believe are actually not 'heart related' and are unexplained). We had gone on holiday and she was completely floored from the travel. Bed-bound with fatigue, extreme brain fog, complete loss of appetite, nausea, dramatic weight loss, heart palpitations, rapid heart rate (resting was over 100bmp, when her normal rate is 60bpm), waking in the middle of the night with extreme hot flushes/sweats/heart racing, severe anxiety and depression. She felt so unwell she actually started to think she was dying. We all thought the cancer was back.

Anyway the NHS were not interested in helping at all, and just said 'sorry, we think you're depressed', which I believe she is, but not because she feels fundamentally low, but because it is a symptom of something else. My mum is the most adventurous person I have ever known, with such youthful wonder at the world. This is all very much not her! After a very stressful fight, she was eventually admitted to hospital and had her lymph system in her stomach scanned and told it was all clear, unlikely cancer was the cause. She was given anti-depressants to elevate her serotonin to help her 'chronic fatigue' apparently brought on by the chemo/letrozole meds.

The anti-depressant helped a little, but she has never really recovered, and now we are in the midst of the 3rd severe episode in 18months (similar to the one that started on holiday). She says it's like her brain is full of cobwebs and even having a conversation is exhausting her. All of the dreadful symptoms are back again.

So my questions really are, what are your thoughts....? Is this, as I suspect, at least partly still a thyroid issue? Her TSH is normal (between 1-2), her ft4 is normal but not fantastic (13.4). B12 etc all normal.

Can I also ask people's thought on the radioactive approach? It would eliminate the need for the carbimazole.

Her NHS endo just isn't interested, and is the head of the only hospital in our region. What on earth can I do, anyone have a private endo recommendation, someone would look at the bigger picture and symptoms and not just bloods? It would have to ideally be someone who would consider a telephone conversation as we are somewhere pretty remote, and at the moment she would be too unwell to make a long journey.

Sorry for the ramblings! I can't bare to watch my mother disappear before me.

Thank you all so much for any help.

Thyroid results

FT4 (9 - 24) TSH (0.34 - 5.4)

Date Free T4 TSH Carbimazol dose

26/06/2015 FT4: 40.1 TSH: 0.01

04/07/2015 FT4: 50 TSH:0.01 DOSE- (10mg)

23/07/2015 FT4: 30.7 TSH: 0.01 (15mg)

19-Aug FT4: 19.3 TSH: 0.01 (20mg)

16/09/2015 FT4: 19.1 TSH: 0.01 (25mg)

14/10/2015 FT4: 14 TSH: 0.01 (25mg)

11/11/2015 FT4: 10.3 TSH: 4.33 (20mg)

09/12/2015 FT4: 14 TSH: 0.97 (20/25mg)

30/12/2015 FT4: 10 TSH: 5.45 (15mg)

23/03/2016 FT4: 18 TSH:1.21 (10mg)

20/04/2016 FT4: 16.1 TSH: 0.42 (5mg)

11/05/2016 FT4: 11.9 TSH: 0.47 (5mg)

07/06/2016 FT4: 15.8 TSH: 2.06 (5mg)

29/06/2016 FT4: 14.2 TSH: 0.93 (5mg)

17/08/2016 FT4: 14.7 TSH: 1.31 (5mg)

12-Oct FT4: 17.8 TSH: 1.96 (5mg)

01/11/2016 (0mg)

14/11/2016 (10mg)

21/11/2016 FT4: 17.9 TSH: 0.69 (15mg)

06/12/2016 (10mg)

21/12/2016 FT4: 13 TSH: 6.68 (5mg)

01/02/2017 FT4:15 TSH: 2.32 (5mg)

21/05/2017 (0mg)

24/05/2017 TSH: 1.02 (0mg)

31/05/2017 FT4: 17.3 TSH: 0.39 (0mg)

16/06/2017 FT4: 14.9 TSH: 0.32 (0mg)

28/07/2017 FT4: 14.8 TSH: 0.31 (0mg)

23-Aug FT4: 17.4 TSH: 1.28 (2.5mg)

15/09/2017 TSH: 1.25 (2.5mg) Very unwell

03/10/2017 (5mg) Very unwell

07/11/2017 FT4: 15.9 TSH: 2.08 (2.5mg) Very unwell

06/01/2018 FT4: 12.2 TSH: 1.61 (2.5mg)

21/12/2018 FT4: 13.4 TSH: 1.74 (2.5mg) Very unwell

Sorry I had the results all spaced out so they were easier to read, but it's all jumped back when I posted.

Mum was obviously very poorly when she was first diagnosed, and there was a spell mid 2018, but there doesn't appear to be any results in her computer for then, though I know she did have some done around then. She has been unwell through-out, but the severity of the symptoms, and becoming house-bound is what sets these episodes apart.

*Update blood draw 14th Feb 2019

Her basal body temperature is low (between 35.5-36.6), which through personal experience I realise indicates hypo rather than hyper.

We are still awaiting the repeat of her TRab test, and also the cortisol saliva test.

I am at a bit of a loss, none of these look particularly bad? They were drawn on Feb 14th at 10am, on an empty stomach. Her current medication is 2.5mg of Carbimazole. She also takes letrozole daily. Her bloods actually appear better (her FT4 has risen quite a lot compared to where it was 10 days prior to this episode kicking in-blood draw from Dec 21st below)

Feb 14th- 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)

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)

Dec 21st - NHS

TSH 1.74 mIU/L (0.55-4.78)

Free T4 13.4 pmol/L (11.5-22.7)

Ferritin 51ng/mL (30-480)

Sodium 141 mmol/L (133-146)

Potassium 4.4 mmol/L (3.5-5.3)

Chloride 107 mmol/L (95-108)

Urea 4.7 mmo/L (2.5-7.8)

Creatinine 58 umol/L (44-71)

eGRF >90 mL/min/1.73m^2

Bilirubin 9umol/L (<21)

Alk. Phos. 41 U/L (30-130)

ALT 24 U/L (10-49)

Albumin 45 g/L (35-50)

FBC all in range except:

RBC: 5.02 10^12/L (3.80-4.80) High

HCT: 0.464 (0.360-0.460) High

MCHC: 313 g/L (315-345) Low

51 Replies
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I'm so sorry to hear about your mother. Poor lady. She must be suffering enormously.

But, first things first, there is no such thing as 'normal'. It is just doctor-speak for 'in-range'. And just being 'in-range' is not good enough. It depend where in the range the result falls. So, it would be a very good idea if you could scoop up all her results on things like thyroid and nutrients, and post them here with ranges.

Secondly, was she diagnosed on just a TSH result? That proves nothing. She should also have had FT4, FT3 and Grave's antibodies - TRAB or TSI.

She was diagnosed with Graves, and has been on carbimozole ever since (3years). Each time they have tried to take her off of it she becomes hypo very quickly again.

I'm rather confused by this paragraph. Did you mean 'she becomes hypER very quickly again'?

Thirdly, I rather doubt that taking iodine cause her Grave's. You don't say how much she was taking, but iodine used to be used to treat Grave's, because it is anti-thyroid in excess. On the other hand, it can trigger Hashi's. So, it might be a good idea to get her TPO antibodies tested. Unfortunately, doctors often don't seem to know the difference between Grave's and Hashi's, and therefor don't do the right tests. So, we really need to know which tests were done. :)

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Thank you for the reply greygoose.

Yes she is suffering enormously, and I worry about how long her body and mind will withstand this.

I have asked her for her history of results, which she has a record of on her computer. It was like I had asked to attempt scaling Everest :( She looked so troubled and defeated. She can now only see the negatives, and potential problems.

She was diagnosed based on thyrotropin antibodies, all other antibodies were negative. She hasn't had the raised antibodies tested since, as the NHS line seems to be that they will remain high/have no bearing now on treatment.

Yes, sorry, I meant hyper!

I had read somewhere a while back that iodine may cause Graves if the person had been iodine deficient for a very long time, and therefore developed toxic nodules within the thyroid. Then a supply of iodine (she took Iodoral tablets) would allow those nodules to run away themselves and result in Graves(she apparently should have been taking selenium to prevent this?). I have no idea how correct any of this is. I would prefer to think it wasn't the iodine, but the timing was a bit coincidental.

I hope I will get her results list soon, and will post for further advice.

In the mean time if you have any private endo recommendations, especially those who are good with graves, please pm them to me :)

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She was diagnosed based on thyrotropin antibodies, all other antibodies were negative. She hasn't had the raised antibodies tested since, as the NHS line seems to be that they will remain high/have no bearing now on treatment.

You mean thyrotropin receptor antibodies? TRAB? OK, so that's Grave's if they were positive. And, for once, the NHS is probably right, they will remain high and don't have any bearing on treatment. Grave's is an autoimmune disease, and like all autoimmune diseases, there really is not treatment, you just treat the resulting hyperthyroidism - usually with carbimazole. There's not much else you can do except remove/kill the thyroid. The antibodies are just an indication that the disease is present. And, if carbimazole, and/or other anti-thyroid drugs are not helping, maybe removing the thyroid or having RAI is the best way forward. What does her endo think?

Is there no possibility that you can go into her computer and find her blood test results? Because without seeing them, there really is little chance of anyone being able to help. We don't know if she's now gone hypo because she's on too much carbi, or if she's still hyper, because or not enough carbi - and what do you call 'hyper' anyway? Are her Frees very high or is it just that her TSH goes very low?

I had read somewhere a while back that iodine may cause Graves if the person had been iodine deficient for a very long time, and therefore developed toxic nodules within the thyroid. Then a supply of iodine (she took Iodoral tablets) would allow those nodules to run away themselves and result in Graves(she apparently should have been taking selenium to prevent this?).

I'm not an expert on iodine and Grave's, although I know that excess iodine can trigger Hashi's. From what I've read, excess iodine can trigger latent Grave's - but the Grave's would have to be there, dormant, first. But, it's not the toxic nodules on the thyroid that cause the Grave's, I don't think, as I said, I'm not an expert, and it's all academic, now, anyway. What's done is done. But this is why we always counsel against self-treating with iodine supplements on here. You just never know what might go wrong. Iodine is a very tricky substance. And, yes, iodine has to be balanced with selenium, but whether that would have prevented what happened, I don't know. But, the fault is with the doctor that suggested supplementing with iodine. S/he should have known better, but due to their lack of education in that area, they don't realise how dangerous it can be.

I'm not sure there's anything that can be done to correct it. I have read that it could be temporary, but how long exactly since she became ill with Grave's? And this is why we need to see the blood test results, to see how the disease is progressing, and if there's any sign of remission. But, I have to say, she does sound more hypo than hyper.

Sorry, I cannot recommend any private endos, I don't live in the UK. I would suggest you write a new post, asking just that. Then those that do know, can reply. :)

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Hi greygoose,

Many thanks for continuing to add to the conversation.

Her endo recommends RAI, but only to stop long-term carbimazole use. He denies any of her symptoms are related to her thyroid issue. He firmly believes her TSH is normal and so she cannot be unwell due to thyroid.

I guess when I refer to whether she is potentially hyper or hypo I am referring to her symptoms more than her bloods. Her bloods don't appear to be all that bad, though her endocrinologist was unhappy if they started to swing in any one direction.

I have posted her list of TSH/FT4 test results below my initial question. She was diagnosed in June 2015, so 3.5 years ago now :-/

I will be keen to read your opinion.

Thanks!

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He denies any of her symptoms are related to her thyroid issue. He firmly believes her TSH is normal and so she cannot be unwell due to thyroid.

Her endo is a very silly man, who doesn't know much about thyroid. Her TSH is vaguely 'normal' - would be a bit high for my liking, but still… But TSH doesn't cause symptoms. And TSH doesn't always coincide with FT3 levels. And, it's low T3 that causes symptoms. If it were me, I wouldn't rest until her FT3 was tested - either NHS or privately.

I guess when I refer to whether she is potentially hyper or hypo I am referring to her symptoms more than her bloods.

The problem with symptoms is that so many can be both hyper and hypo. And, you can't really know if she's hypo without FT3 tested. Her TSH and FT4 may look good in her latest labs - although her FT4 looks a bit low, to me - but without the FT3 you just cannot know. Unless you have long-term experience and a good knowledge of both thyroid and your own body, it's very difficult to rely on symptoms to tell you if you're under or over-medicated on either carbi or thyroid hormone replacement.

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Thank you greygoose,

It is incredibly reassuring to read that someone with your knowledge is thinking along the same lines as me, both in regards to her bloods/FT4 being a bit low/FT3 needing to be tested/ and her endo being utterly useless at treating thyroid conditions.

I need to organise bloods and a decent endo, and pray that something can be done to help her get her life back.

Thank you

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You're welcome. :)

I'm sure something can be done for her, if you find the right doctor.

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Your mother’s symptoms - hot flushes, rapid heart rate, fatigue, anxiety, weight loss- certainly could be Graves’, but really, she needs antibody tests (TSI or TRAb) to be sure, although a negative test won’t prove conclusively that she doesn’t have it. The problem with thyroid symptoms is that although some symptoms are more likely in hypos or hypers, there is a lot of overlap.

The Admins will be able to tell you how to request a list of endos that people have found sympathetic, and if you start a new post giving an idea of your mother’s location, people may be able to pm you with further names. (We aren’t allowed to post recommendations publicly).

As for RAI, there are all shades of experience here, but if your mother really does have uncontrollable Graves’, either that or a thyroidectomy may give her the best shot at regaining something approaching normal quality of life. However, although you don’t give the ranges for the thyroid levels, from what you say, it sounds as though they aren’t high anyway.

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Thanks Valarian,

I will start a post asking for recommendations for endos.

Do you know, can people have symptoms of being both hyper and hypo? Can they exist together? I have read about people being treated with both carbimazole and levothyroxine.

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'Hyper' means your thyroid levels (FT3, FT4) are above the reference range, while 'hypo' means they are below. Since thyroid levels can't be both above and below the range at the same time, you can't experience (or need treatment for) both conditions simultaneously. The antibody situation can be a bit more complicated, but you will only be treated according to your thyroid levels, or assumed thyroid levels from a TSH test (this is more common if you are hypo).

People treated with carbimazole and levothyroxine simultaneously are hyper with Graves' Disease. The idea is to block natural thyroid production altogether with carbimazole, and replace what the body would have produced with levothyroxine so the approach is known as 'block and replace'. After approx twelve months, both medications are stopped to see whether the Graves' is in remission. The alternative approach, known as 'titration', starts off with a high dose of carbimazole, but as FT3 and FT4 come within range, the dose is reduced ('titrated') down until a low dose (eg 5mg/day or less) is reached. If thyroid levels remain within range for some weeks, the carbimazole will be withdrawn altogether to see if remission has been achieved. This usually takes 12-18 months. The approaches apparently have similar outcomes, and typically thyroid clinics prefer one approach or the other, although block and replace may be counter-indicated - eg if the patient is pregnant.

There does appear to be a lot of overlap between hypo and hyper symptoms, although some are more common with one condition than the other - eg sudden weight loss and feeling over-heated when you are hyper. Few people experience all the symptoms, and some disappear more quickly than others as treatment takes effect.

Here is a list of typical hyper symptoms:

thyroiduk.org/tuk/about_the...

...and this list covers hypo:

thyroiduk.org/tuk/about_the...

This leaflet on anti-thyroid therapy (ie carbimazole, the preferred treatment, or the alternative, PTU) may help:

btf-thyroid.org/information...

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Thanks for this reply Valarian, very helpful! :)

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I just need some clarity. When she was diagnosed with graves did she have hyper symptoms? fast heart beat, over active, weight loss, feeling hot etc and are these the symptoms that return if she stops taking the carbimazole?

Have you tired taking her temperature first thing in the morning for a few days. It appears that she has a complex mix of symptoms which could be either hyper or hypo. People who are hypo can be anxious,unable to sleep with a raised pulse due to adrenaline surges and people who are hypo can lose weight if not eating and this is consistant with the low T4. Can you post full panel of blood results I suspect from your description there is a lot going on thyroid related and would particularlty like to see a ferritin result as well as Vit d, folate and B12. Anti bodies would also been really helpful.

I think this needs more investigation before we can sort out getting her better but it might help if she went gluten free in the meantime.

My suggestions to investigate would be

Temperature first thing before getting out of bed for five days.

Pulse at the same time.

Bloods. You may have to pay to get them done. Blue horizens do some comprehenisive thyroid testing. ( to include anti bodies, ferritin, vit D, folate, b12, TSh, T4 and T3 and if you can get it reverse T3)

Saliva cortisol test.

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Thanks for the reply mandyjane,

Yes when she was diagnosed with graves she had all of the symptoms you list. I rushed her into A&E as she had been very unwell, but then suddenly couldn't climb her stairs, and I seem to remember her heart rate was skirting around 150bpm when they got the monitor on her. She had had a blood draw two weeks before that with the GP, as she wasn't well, and her TSH had come back as 0.001, but no one had called to tell us (now we always call them). A horrible nurse in A&E kept on ranting at us asking why we were there and not at the GPs. Just what mum needed as she felt at deaths door. Our experience with the NHS isn't very good. Though we have had a decent locum GP, and good locum general medicine physician who ordered the lymph scan. No one has picked up on this being a thyroid issue though :(

Those night wake ups sound like adrenaline rushes, she says she is sweating, and heart racing, and wakes with a start like she is having a nightmare.

I will request more bloods. Thanks for the list.

I will also ask her to check her temperature in the morning and pulse again.

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Ooh! It makes me mad when medics tell people with thyroid problems they are depressed! Anyone trying to live life with all those symptoms would inevitably be bloody fed up about it! They need to look at cause and not blame effect! Clearly her thyroid is unstable and a full range of blood tests and someone with knowledge about titration of meds could probably get to the bottom of it and help. Grrrrr!!!! 🤸🏿‍♀️

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So frustrating MissGrace. Just hope I can get her help quickly, before this becomes so severe there is no return. It feels like it's becoming very serious again :-(

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I’m very sorry to hear about the terrible time your mother has and is having. The thyroid is an extremely important factor in our natural balances and electrolytes.

Just a thought but have you thought about TPP or potassium paralysis. It’s not just paralysis it’s also severe weakness. TPP thyroid periodic paralysis can happen when you are over medicated or suffer with Graves. And potassium paralysis kicks in again if you have too much aldosterone from too much thyroxine then suddenly drops. Potassium paralysis is difficult to pick up as you need to capture during an attack which can last days or just a few hours. It’s rare but you never know until it’s ruled out. Please read up on the causes it just might help. But as we know the thyroid is a mine field. It’s finding the culprit and ruling things out that takes too long.

I do hope your mother is alright and that you can find the answe soon. There are great Endocrinologist in Oxford privately. One good thing is that Endocrinologist don’t always need to see the patient as it’s mostly biochemistry which can easily be dealt with over the phone looking at blood results. It’s just knowing which bloods to check.

Best regards

Pam

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Thanks for the info McPammy.

Very interesting about the thyrotoxic periodic aralysis! I have had a little read about it. Perhaps it's something for me to bring up with a good endo. Her potassium levels were normal when she had them checked just before this latest attack really kicked in. I wonder if the attack can last for 2-3months though, as I have read they are short, though perhaps the side affects from it can last longer. I appreciate you adding this to mix!

Pam would you mind PMing me about the endo in Oxfordshire you mention? Thank you :)

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sorry pam that was red rag to a bull with me. I am infuriated by endocronologists reliance on blood results and think it barely adequate. My blood results led to thirty years of medical neglect when my pulse and temp were giving a true picture as was my appearance.

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I totally understand what you are saying. I was just offering this lady a chance to speak to someone if she can’t make it to a good Endocrinologist as she lives in the sticks. My Endocrinologist does tel consultations after he has seen you to avoid long journeys across the country.

Sorry didn’t mean to upset you.

Pam

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No that's fine McPammy. I am being a bit tired and grumpy. No worries and thankyou for your reply.

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Chemo can affect the thyroid, it can cause hypothyroidism

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Hello arciticsun

I have Graves Disease and drank the RAI in 2005.

It must be very hard trying to help your mother with all this, and yes, as already stated it's essential to get some bloods done, rather than jumping to any conclusions.

I wish I knew of this site when I was diagnosed - however you're made the right decision in asking for help from this amazing group of people.

Graves is an autoimmune condition, and your mum's antibodies are attacking her thyroid causing it to appear " hyper " - her thyroid is not the cause of her illness, her thyroid is the victim in all this.

Removal of the thyroid by surgery or burning it to death ( ablation ) doesn't solve the problem, it just removes some symptoms replacing them with a different set of symptoms that the Nhs believe they are more able to manage.

And how's that working for the people on here - ok ? I don't think so.

Graves antibodies TSI and TRAB need to be identified before accepting a Graves diagnosis.

Please do not even consider RAI - it's another toxic substance that goes through the whole body and there can be consequences that in my experience the Nhs do not seem to acknowledge.

There are currently trials for a vaccine to " kill off " the Graves antibody.

Professor Toft, a leading endocrinologist, is not putting any more of his patients forward for RAI due to the lack of care, support and management in primary care.

His article Thyroid Hormone Replacement - A Counterblast to Guidelines - is on this website.

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Hi pennyannie, Thanks for your input about the RAI. She had been resisting it as she felt she didn't want to put anything toxic into her system. We have been getting desperate, so it suddenly has felt like an option. In some ways also we had thought it might put her back on the radar with the endos and needing treatment after, though given our experience and it seems may others on this site, that's probably the wrong way to look at it.

I will encourage her to avoid it for now, and we will try and find a good endo to attempt to normalise things first. Thank you

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Dear All,

Thanks so much for the replies! I appreciate all of them.

Sorry for the ramblings last night. It was a last minute decision to post, after a long day, and doing so as quickly as possible so as to get to bed before toddler awakens!

Tonight is another late one, and tomorrow will be a hectic day. So I will fully read, digest and write back to all the comments over the weekend. Please forgive the delay. Life doesn't seem to pause just now.

In the meantime here are her latest test results for you guys to get a fuller picture:

1. She was diagnosed with Graves with a positive test for Thyrotropin antibodies.

At initial diagnosis her TSH was 0.001, and T4 was 50.

Current results:

TSH 1.74 mIU/L (0.55-4.78)

Free T4 13.4 pmol/L (11.5-22.7)

Ferritin 51ng/mL (30-480)

Sodium 141 mmol/L (133-146)

Potassium 4.4 mmol/L (3.5-5.3)

Chloride 107 mmol/L (95-108)

Urea 4.7 mmo/L (2.5-7.8)

Creatinine 58 umol/L (44-71)

eGRF >90 mL/min/1.73m^2

Bilirubin 9umol/L (<21)

Alk. Phos. 41 U/L (30-130)

ALT 24 U/L (10-49)

Albumin 45 g/L (35-50)

FBC all in range except:

RBC: 5.02 10^12/L (3.80-4.80) High

HCT: 0.464 (0.360-0.460) High

MCHC: 313 g/L (315-345) Low

Greygoose- yes, sorry, that's a typo. It should read hyper!

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Has FT3 never been tested ?

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No never Valarian. Her endo declines to do so, stating it's irrelevant, and not a test the NHS do!?

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Complete rubbish, certainly so far as NHS England and NHS Wales are concerned. I've had FT3 tested every time my endo has ordered my thyroid levels to be tested over the last 18 months. It appears that in some labs used by the NHS, it can only be ordered by specialists, while in others, it is tested automatically if FT4 is over range. The point is, FT3 often takes longer to come within range than FT4, and can be relatively higher at the outset. That said, your mum's TSH probably wouldn't be so high if her FT3 were still sky high.

Bu the way, could you/your mum afford a private consultation ?

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Yes we will take her to a private consultant Valarian, when we figure out which one. Rather spend money on her health rather than anything else. So true that you have nothing without your health.

Interesting your endo within the NHS thinks FT3 is important to test! I feel so frustrated with her care thus far. The oncologist even had her stop her letrozole for 6 weeks to see if that was the issue, all because the endo said definitely not thyroid. The repercussion of not taking that could obviously have been huge. Grrrrrr!

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Hi articsun- sorry about your mum. Have had several bouts of thyrotoxicosis which no one understood. Expect other people looking at your mum's chloride results look high.

Cutting down on salt, and on excess carbs, might help. ||Magnesium. potassium, zinc copper and selenium, might be additional supplements, which might help. May be her diet might be changed. As she has muscular weakness fatigue, may be she has imbalances in other hormones, such as from her adrenal glands. Her cortisol, or stress hormones may also be affected. There is also the possibility that she could have a food intolerance such as gluten, with other food intolerances which cause bloating, swelling, discomfort fatigue. Gluten is known to attack the thyroid as are dairy, egg, and grains.

I found out I had multi grain dairy and egg and banana, - I can't eat all the foods I liked

such as savoury biscuits and cheese, confectionery and cakes - but a change in diet with salt reduction has helped. You find magnesium in bananas, and potassium in tomato juice.

Copper and zinc can be found in plain chocolate, rather than dairy milk. Hope you can find a nutritionist who can give you some more information.

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Hi hawii60,

Thanks for the msg, sorry for the delay in replying...not sure how I missed it!

Yes the chloride is a bit high, I wonder if there is a related health thing causing this, as her diet is actually pretty low in salt. All home cooked, and my father is very sensitive to salt so they don't add much to their food. Lots of home grown organic veg, and also fruit in the summer.

Thanks for the supplement info, and also the cortisol test advice. I ordered one from regenerus. It will be interesting to see what the results say, though I believe her endo might dismiss them as it's a saliva test. We'll find out I guess.

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Gluten is the main food intolerance investigated - so a test for this would be useful. Specialist both Endo and Gastro recognise going gluten free can help peoples. health. If a health visitor/nurse comes to your mum's home may be she could have a blood test for gluten, dairy, egg, and vitamin D deficiency which recent information indicates risk of breast cancer, and risk of infection. The levels should be increased if necessary.

There is an interesting journal article on vitamin d deficiency. written in

June 2017:-

naturalmedicinejournal.com

brain-effect.com

indicates a study of increase of vitamin d to as much as 50.000iu vitamin D per week for eight weeks and then to continue with 4000 iu per week. This was for people with metastatic melanoma who showed improvement with vitamin D. There may not be enough in food if deficient.

I guess your mum could try drinking extra water to lower her sodium chloride levels. As you are so careful with home cooked food, may be there are salts in the soil. The drug your mum was on is quite strong and can have serious side effects with some people. Coming off the drug might be a help. If you look the drug up on the uk government Yellow card scheme online. You do not have to log in any personal details. it gives a graph of all the side effects to different parts of the body and the serious and less serious side effects of this drug.

Iodine can be found in fish paste, and fish and in dairy. If your mum has altered body temperature feeling very hot, this could be due Hashimoto's disease with a Hashi flare. I do hope you can find an Endo and a Gastro intestinal specialist to help you with possible gluten intolerance as this can damage the thyroid and the intestines.

I used an Alphega linked chemist which does is a recent smart test with a finger prick test. The test results are interpreted by the NHS linked qualified pharmacist.

It tests for 64 foods. I screened every food indicated and have been much better.

It took an hour for the results to come through and be ticked as to severity

of intolerance with a friendly chat into case history. I will try and find you a branch in your area which specialises in this test from Germany. It cost 70 pounds. No need to reply.

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Additional tests through NHS pharmacies can link with services for further advice.

Allergy services can be found at Charles Michies Pharmacy 267 Rosemount Place

Aberdeen Scotland e mail rosemount@mcihies.com Tel 01244 4636593

Edinburgh Barnton Pharmacy 195 Whitehouse road Edinburgh city of Edinburgh EH4 6BU Scotland. e mail barntonpharmacy@btinteernet.com telephone 01313393449

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Does anyone know what the high RBC/HCT blood results might indicate?

Also the low MCHC (I know this can indicate low ferritin (it did for me), but last time mum her ferritin checked it was normal)- I will re-request ferritin, but does anyone have any other ideas about it?

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We live in the far north Highlands of Scotland, close to John O'Groats. The nearest/only endo department is at Raigmore hospital (2.5hrs drive south, but luckily they do phone consultations, unluckily even the head of department doesn't seem to have a clue). Any recommendations for empathetic endos who really know their stuff please, please pm me.

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I think she would definably benefit from a month on ferrous sulphate just to get the iron up a bit and I wonder if her carbimazole could be deceased slightly so that she is taking something more like a 3rd of usual dose. I am aware with psychiatric drugs that there can be a rebound effect when people stop taking them suddenly even if they dont really need them anymore and older people are very sensitive to medication change. It might mean cutting a tablet into quarters or halfs to get a slightly lower dose or even having to nibble them to get the right dose. She might also benefit from an Epsom salt bath before bed as I expect like most people her magnesium is low. She might also find a diffuser with some lavender being dissfused into her room at night to help sooth.

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Thanks for all the tips mandyjane, very much appreciated. :)

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Carbimazole isn't a psychiatric drug (I suspect that isn't what mandyjane meant, but reading this one post in isolation, it's how it came over) and the dose shouldn't be altered without recent thyroid level tests, and discussions with an endo.

The aim with carbimazole is to get thyroid production under control and keep it there, to give the best chance of achieving remission. If your mother tries to speed the process up, she is in danger of relapse. By all means ask about a reduction, especially if your mother suddently experiences hypo symptoms, but ask for the next test to be brought forward.

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Just offering my experience not qualified opinion of course but it seems as if we are all on the forum having to do this because of the inadequacies of endos. My assumption when I reply to most posts is that good medical help is unavailable.

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Not sure what your experience of anti-thyroid treatment is, but reducing to a 'third of the usual dose' of carbimazole is a much bigger reduction than endos normally make in one go - especially as arcticsun hasn't mentioned what the current dose is, or when it was last reduced. She has also mentioned that her mother became hyper very quickly every time the endo tried to take her off carbimazole - a two thirds reduction in one go might be enough to cause a relapse, which could land her in A&E again.

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No I was trying to suggest that her current dose which is half the usual dose is reduced to a third of the dose. My maths is not great but I think I am suggesting about a 15 percent reduction.It seems that it has been completely stopped in the past so I am trying to advise re her low levels of thyroid hormone as tiny a reduction as possible. I am not an expert in antithyroid treatment but I am very experienced in helping elderly people with their health needs and am trying to suggest the smallest reduction possible due to her sensitivity. It seems we both agree on the principal of this. Might be helpful to know the exact dose so the maths could be done properly.

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Also I have read that Graves, after diagnosis based on antibodies, shouldn't have their treatment tied to what their TSH is doing. Is this true? Though my mother had a confirmed diagnosis with thyrotropin antibodies, her treatment, or lack of it, since has only been based on her TSH level.

I appreciate all your vast knowledge about this. Thanks all so much.

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yes, bang on: TSH often remains suppressed for quite a while after FT3 and FT4 are within range. When being treated for active Graves', they should really test FT3, FT4 and TSH every time - so maybe every four weeks to begin with, dropping to every eight weeks as thyroid levels come within range, and perhaps a bit less frequently as the carbimazole dose is reduced, provided the response remains as expected. (so they look at graphs over time, as well as the most recent result). If your mum is effectively on low dose carbimazole for the forseeable future, tests may be a lot less frequent - it would be worth posting separately to ask specifically about long-term carbiamzole treatement.

Your mum's TSH appears to have recovered. What is her current dose of carbimazole, and do you have the previous set of results ?

Is your endo a thyroid specialist ? Try googling them to see whether they've published any papers, and if so, what on.

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She is on 2.5mg of Carbimazole Valarian.

I can't find any info on her endo when I google him. Hmmm

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Yes I believe that to be true - but have trouble as my doctor is dismissive - we, Graves people have TSI / TRab antibodies sitting on/ controlling the TSH making us appear over medicated when, in fact, our hormones can be very low.

These antibodies are the reason we have gone overactive, in the first instance.

Imagine not be able to control a thermostat - ?

However :-

I don't know if this still applies when on Carbimazole - prior to the medical intervention of surgery or RAI - though I think it must - taking Carbimazole should reduce our mother's T3 and T4 making her more comfortable, but if these blood readings are not being monitored and adjusted accordingly, how can your mum's progress be monitored on a TSH alone. I think we're right regarding this over reliance on TSH especially when with Graves. I think, if we haven't, we Graves people need a different set of guidelines :

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Thyroid results

(9 - 24) (0.34 - 5.4)

Date Free T4 TSH Carbimazol dose

26/06/2015 40.1 0.01

04/07/2015 50 0.01 10mg

23/07/2015 30.7 0.01 15mg

19-Aug 19.3 0.01 20mg

16/09/2015 19.1 0.01 25mg

14/10/2015 14 0.01 25mg

11/11/2015 10.3 4.33 20mg

09/12/2015 14 0.97 20/25mg

30/12/2015 10 5.45 15mg

10mg

23/03/2016 18 1.21 10mg

20/04/2016 16.1 0.42 5mg

11/05/2016 11.9 0.47 5mg

07/06/2016 15.8 2.06 5mg

29/06/2016 14.2 0.93 5mg

17/08/2016 14.7 1.31 5mg

12-Oct 17.8 1.96 5mg

01/11/2016 0mg

14/11/2016 10mg

21/11/2016 17.9 0.69 15mg

06/12/2016 10mg

21/12/2016 13 6.68 5mg

01/02/2017 15 2.32 5mg

21/05/2017 0mg

24/05/2017 1.02 0mg

31/05/2017 17.3 0.39 0mg

16/06/2017 14.9 0.32 0mg

28/07/2017 14.8 0.31 0mg

23-Aug 17.4 1.28 2.5mg

15/09/2017 1.25 2.5mg Very unwell

03/10/2017 5mg Very unwell

07/11/2017 15.9 2.08 2.5mg Very unwell

06/01/2018 12.2 1.61 2.5mg

21/12/2018 13.4 1.74 2.5mg Very unwell

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Sorry I had the results all spaced out so they were easier to read, but it's all hopped back when I posted.

Mum was obviously very poorly when she was first diagnosed, and there was a spell mid 2018, but there doesn't appear to be any results in her computer for then, though I know she did have some done around then

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There's some very erratic dosing there. But, I can't see any sign of her going hyper again when they reduced the carbi. From those numbers, it looks like they put her back on carbi without doing any tests. I can't make much sense out of it.

07/11/2017 15.9 2.08 2.5mg Very unwell, for example. Could be she was very unwell because her FT3 was low. But, they've never once tested her FT3.

On her latest results, further up, her FT4 is pretty low, so her FT3 could be even lower.

I have Hashi's, not Grave's, so I have never had experience of taking carbi. But, to my untrained eyes, it really does look to me as if she needs a reduction in dose.

As for the RAI, well, endos always want to push people into that. But, an awful lot of people are on carbi long-term, with little ill-effect. The main point here is: would her endo know how to optimally treat her resulting hypothyroidism? I would have my doubts about that.

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It would appear that your mother's TSH hasn't been really low for the last year or two, and her Free T4 hasn't been terribly high. I see from one of your earlier posts further up the thread that the range for Free T4 is (11.5-22.7). Any result below 17.1 is in the lower half of the range.

I wonder if her problem might be caused by low Free T3. Someone who has been hyper has probably got used to quite high levels of Free T3 and high Free T4. Lowering it too far might make the patient feel very unwell indeed. Can you pay for private tests for her? Either of these would be good :

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

You definitely need more information about her thyroid function than you seem to have at the moment, but I doubt very much you'll get it from the NHS.

Since your mother hasn't shown results that are actually hyperthyroid in some time I wonder if her current problem is connected with something else. For example, tachycardia (fast heart rate) can appear in different forms and can have several different causes.

A healthy but not very fit 65 year old who tried to run up and downstairs a couple of times would probably develop a racing heart. This would be referred to medically as sinus tachycardia, but under the circumstances would be perfectly normal, and not a health problem at all. If this same healthy but not very fit 65 year old got out of bed slowly and their heart speeded up to 150 while they put their slippers on, then this problem might be referred to as "inappropriate sinus tachycardia". This is not healthy and would need to be looked at.

There are lots of other causes and types of tachycardia :

mayoclinic.org/diseases-con...

drugs.com/health-guide/tach...

Notice for the link above there are several tabs with info about tachycardia.

Has anyone explained to you or your mother why her heart is going so fast? Is it sinus tachycardia or some other issue?

.

One cause of sinus tachycardia is low iron and/or ferritin (iron stores). It doesn't have to be below the reference range to cause a problem. Just being low in range can be enough.

Your mother's ferritin level is Ferritin 51ng/mL (30-480), which is only 4.7% of the way through the reference range. If her serum iron is also low in range then, in her shoes, I would be taking iron supplements - but I wouldn't take them without knowing both ferritin and serum iron.

To do a full iron panel :

medichecks.com/iron-tests/i...

Note you can get 10% off medichecks tests if it isn't already on offer :

healthunlocked.com/thyroidu...

.

Another possible cause of tachycardia is a medicine or supplement side effect. Check each of the medicines and supplements that your mother is taking and scour any patient information leaflets to see if they mention fast heart rate or tachycardia. One example that is quite common is tricyclic anti-depressants that are also prescribed for neuropathic pain - amitriptyline is one, and so is nortriptyline. They can both cause tachycardia - but I bet doctors never mention it.

You can check for info online at these sites - and check both - you can sometimes get more from one site than the other :

UK site : medicines.org.uk/emc

US site : drugs.com/

Notice the US site also has an interactions checker to see if any of the things your mother takes will interact badly with another medication or supplement she takes.

.

Another possibility is that your mother's cortisol level has gone haywire - it could be far too high or far too low. This is a big subject and its very late. So if you are interested in this let me know, and I'll write more tomorrow.

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Hi humanbean,

Thank you for your very informative post. Lots to consider and think about. Thanks also for the links to the tests and discount info.

I am interested to read about cortisol if you have the time to post.

Thanks again!

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I'm afraid I haven't got the energy to write a lot about cortisol - it's a big subject. So I'll just post links to posts where I've written posts on the topic for people in the past. Some of the links within posts might no longer be available. Note that some of the posts are discussing high cortisol and some of them are discussing low cortisol. It is important that people get tested before trying anything other than basic vitamins and minerals.

1) Member who wrote the post was later diagnosed with Addison's Disease :

healthunlocked.com/thyroidu...

2) healthunlocked.com/thyroidu...

3) healthunlocked.com/thyroidu...

Not specifically about cortisol, but the first post in this thread from another forum might be helpful :

forums.phoenixrising.me/ind...

Good luck. :)

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Hey guys, we have some bloods back. Not sure there is anything here that helps?!

Her basal body temperature is low (between 35.5-36.6), which through personal experience I realise indicates hypo rather than hyper.

We are still awaiting the repeat of her TRab test, and also the cortisol saliva test.

I am at a bit of a loss, none of these look particularly bad? They were drawn on Feb 14th at 10am, on an empty stomach. Her current medication is 2.5mg of Carbimazole. She also takes letrozole daily. Her bloods actually appear better (her FT4 has risen quite a lot compared to where it was 10 days prior to this episode kicking in-blood draw from Dec 21st below)

Feb 14th- 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)

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)

Dec 21st - NHS

TSH 1.74 mIU/L (0.55-4.78)

Free T4 13.4 pmol/L (11.5-22.7)

Ferritin 51ng/mL (30-480)

Sodium 141 mmol/L (133-146)

Potassium 4.4 mmol/L (3.5-5.3)

Chloride 107 mmol/L (95-108)

Urea 4.7 mmo/L (2.5-7.8)

Creatinine 58 umol/L (44-71)

eGRF >90 mL/min/1.73m^2

Bilirubin 9umol/L (<21)

Alk. Phos. 41 U/L (30-130)

ALT 24 U/L (10-49)

Albumin 45 g/L (35-50)

FBC all in range except:

RBC: 5.02 10^12/L (3.80-4.80) High

HCT: 0.464 (0.360-0.460) High

MCHC: 313 g/L (315-345) Low

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