Graves - Dental issues & blood tests

[LonelyPlace]

I have severe Graves with high antibodies (TRAb just under 8 the last twice had it done) since 2016 - now on 3rd episode. This time on Block/Replace (Carbim 40/Levo 100) for last 11 months. Haven't had any bloods done for while now - due to get them done later this month (T3/T4/TSH) also this time getting TRAb done also. Last bloods they said were ok (T3/T4 in range but TSH low but said this was ok).

However have not been feeling well on this. Feel tired all time/lethargic/fatigue and also have trouble sleeping - sleep 2-3 hours then awake for hours and having to sleep during day that tired from lack of during night. I still get heart racing & breathlessness issues sometimes and also have severe heat intolerance - that bit of heat we had a few weeks back - only around 25 deg. or so caused me to feel overwhelmed and sweating like mad. I am normal weight range. I can't work anymore due to Graves and few other conditions so I can't afford lots private tests/treatment. Due to inadequacies with GP treatment, I now have to get my bloods done at hospital endo clinic and just a short telephone appointment with an endo nurse for results. I have only seen my consultant once in over a year since I asked to be changed from another one who was useless. I thought I would get an appointment once a year with the consultant but my endo nurse says not - no plans to see him apparently so I don't have much support or opportunity to address any problems - the nurses are not that good and after 10 minutes are eager to get onto next patient. When I did see endo last I said I didn't want any treatment at the minute and would remain on Carbim so think that's probably why he won't see me - just seem interested in getting everybody to accept RAI (or alternatively surgery). I have fairly bad quality of life now and don't really want it diminished any further/feeling worse.

I mentioned my symptoms to the endo nurse at the last 3 telephone appointments but she just says the thyroid bloods are okay must be due to something else (which I don't feel is necessarily true from when they started) and speak to GP. I saw one GP before who was quite dismissive about it all, goes on about costs of tests and various things I had asked about and then says to take it up with endo???? Unbelievable really - talk about pass the buck! Anyway just seen another GP at practice who has said will do complete bloods for symptoms she said and gave me blood card to take to hospital (to get done at same time as upcoming thyroid ones) - says on card FBC/HbA1C/Haematinics/LFT/URE which I believe are full blood count/diabetes/vitamins including B12, folate, ferritin/liver function/kidney function. Finally I am getting these done and I am pleased about this as I can't afford private tests (unless I choose not to eat/pay household bills) but I did ask if the Haematinics one includes all vitamins/minerals like Vitamin D/phosphates as I have been low in these before. She said phosphates can vary and be low anyway (I read they can affect bone density if low) and vitamin D - she said NHS don't test vitamin D and they advise everybody should be taking supplements from Oct to March and going out in sun for 15 minutes a day (if we ever get any!) without any factor 50 on apparently!

So would this be a comprehensive set of bloods as you reccomend - doesn't include Vitamin D and not sure if it would include any other vitamin/minerals or not, TBH. Is she right that just should take Vitamin D for 6 mths/yr and not test at all? Can't complain though as just glad they are finally doing these as don't feel right.

Also since October last year had lot dental issues going on with gums/teeth - won't go into it all but last 111 dentist I saw said I need at least 3 extractions to upper teeth - 3 near the back (but not wisdom) as well as a number of fillings & stuff but said they can't do it. Said because of Graves I am at greater risk of complications/infection and won't heal as well/quickly and said would need to be done on NHS so has sent me to a specialist dental centre well out of my city/area (just for the 3 extractions I believe it is - didn't mention about the other stuff so don't know how will get rest done). He said otherwise would need to wait 18m - 2 years for local NHS hospital to do it. Does anybody know if this is correct with Graves - that you can't undergo normal dental treatment (particularly for extractions) due to complications and have to go to hospital/specialist dental centre? And what will they do at this centre that will likely lead to less complications/risk of infection etc. I ask myself?? I've never heard or been told this before and even when I mentioned to endo nurse quite a few months ago about dental probs (before I was referred to this specialist centre) she didn't highlight this to me at all - that it would be a problem - in fact she said if I could get an NHS dentist thro' 111 to grab it as very hard to get. Not been able to speak to nurse about it since. Can't help but feel that with this 111 dentist it is another case of passing the buck?? Anybody know any different?

Thanks for any replies.

LonelyPlace

[SlowDragon Administrator]

she said NHS don't test vitamin D

With autoimmune thyroid disease you should be able to get Vitamin D tested as you are at especially high risk of vitamin D deficiency

Exactly what vitamin supplements are you currently taking

And insist B12, folate and ferritin tested annually

[LonelyPlace in reply to SlowDragon]

I don't currently take any vitamins/minerals. But the GP said NHS won't test Vit D but that NHS advises everybody should just automatically be taking it anyway apparently - well at least for 6 mths of year.

It's not something I've ever been keen to do - just take vitamins for the sake of it without knowing - you could take too many and some can be toxic in high doses (in fact vit D made my elderly mother in law ill when she was taking some vitamin liquid and tablets) and just taking them doesn't account for what you are getting from food. I know there have been some studies which have shown taking vitamins all the time can actually shorten your life - although vit D is still reccomended to take but others maybe not so much.

The Haematinics blood test that the doctor has requested I have - I'm not sure exactly what it does cover - although she said it includes B12, Folate, Ferritin/Iron. I think it only really includes these - well that is what Dr. Google seems to say anyway.

[pennyannie in reply to LonelyPlace]

Hey there again ;

When metabolism isn't quite right and either a ' little ' hypo or hyper the body struggles to extract key nutrients through food - no matter how well and clean you eat and low levels of the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D will compound health issues further than necessary.

The body needs a good supply of these nutrients to be able to replenish and restore its core structure - and having optimal core strength nutrients appears to be a given especially when dealing with an AI disease.

As for the dentist I would have thought extractions and fillings a normal part of every day life and since you are stable and on medication for Graves - I can't see the problem.

[LonelyPlace in reply to pennyannie]

Thank you Pennyannie for your reply.

Okay well at least I know the GP is going to test my ferritin, folate, B12 so I can see how these come out but they won't test Vit D or other vitamins by the looks of it or minerals either like phosphates which I know I have been low on in past.

I don't know if it would cost me much to do these other vitamins/minerals that GP won't do (I believe you can do home fingerprick tests so don't need to have a local testing centre?) Alternatively I could just take Vit D regardless of levels as GP says, but I still won't know whether low in others (and if they could be causing any of the issues?)

Also I agree with you on the dentist issue and have a feeling the 111 dentist just didn't want to do it/didn't know much about the condition and didn't want any responsibility if anything went wrong. As I said the endocrinology nurse, when I mentioned my dental problems around Jan/Feb, never told me that it would be any problem to undergo dental work. The only problem I could see would be if Carbimazole had caused the immunity issue (with low neutrophils) and then got an infection through having dental work but I have been told the risk is quite small - approx. 5 in 1000 people in a year on Carbimazole are likely to get Agranulocytosis - so only 0.005% per year and I can't see what this other dental centre could do about that anyway as they surely won't be able to prevent an infection from dental treatment I wouldn't have thought - maybe could have bit better infection control measures though possibly? Not sure.

Thanks very much for your wise words and help Pennyannie as always.

LonelyPlace

[SlowDragon Administrator in reply to LonelyPlace]

Many members test privately, either including ferritin, folate and B12

Or

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Vitamin D is associated with thyroid disease

Link re Graves’ disease and vitamin D

ncbi.nlm.nih.gov/pmc/articl....

verywellhealth.com/why-is-v...

[LonelyPlace in reply to SlowDragon]

Thank you very much SlowDragon for your help and all the information on private testing, vitamin D, co-factors and other articles/research papers.

I will have a read through it now and will get Vit D tested as even though not working now £62 is not a fortune to test twice a year and vit D supplements are very cheap in some stores e.g. Savers/Home Bargains etc.

Thanks once again

LonelyPlace

[SlowDragon Administrator in reply to LonelyPlace]

Holland and Barrett often have Better You vitamin D on 3 for 2 offers

[LonelyPlace in reply to SlowDragon]

Thanks for letting me know that SlowDragon, I'll have a look. 🙂

[Knowsnothing]

Phone 111 again and speak to someone else, I have graves and have had a tooth out at the dentist they just give you a different anesthetic.

[LonelyPlace in reply to Knowsnothing]

Hi Knowsnothing

I didn't know that, nobody has told me this - not even the endo nurse when I mentioned about going for dental treatment but thank you I'll make sure I ask them when I go.

All the best

LonelyPlace

[Yoga54]

hi Lonely Place, I have Graves’ disease currently in remission from block and replace therapy after 18 months of treatment and my blood tests at the hospital 6 months ago showed my vitamin D was really low, I had no idea they had tested it and I was put on a high loading dose for 4 weeks and I’m currently on a maintenance dose on prescription for the foreseeable future and I have noticed a massive improvement especially muscle aches and bone pain and energy levels. Keep pushing for a vitamin D test. I have regular check ups at the dentist and they aren’t concerned about Graves’ disease either.

[LonelyPlace in reply to Yoga54]

Hi Yoga54

You're lucky you are able to be tested and able to get on prescription with your GP.

I was similar in that I had very low vitamin D around 2014/15 I think it was when I had a blood test and was put on high dose of about 40 drops liquid vit D per day for a while but then they just stopped it and haven't been tested since - as I said I have asked a couple of times including just lately at GP appointment but said the NHS don't test Vit D, even though I suffer tiredness/fatigue etc. and also have tingling sensation in my feet which I read can be a symptom. GP said I, and everybody else, should just take it regardless - so just put onus back on me and something I have never been that keen on doing unless there is a real need as getting too much of some vitamins can sometimes be as bad/sometimes worse than not enough, although not sure is case with Vit D unless in very high doses but calcium (also mentioned in study below) should not be taken in excess. But I do know low Vit D has been linked with many conditions including autoimmune conditions and I was diagnosed with Graves in 2016 - after I had low Vit D - not sure for how long I'd had it. I now wonder if that is what lead to me getting Graves which is a severe and horrible disease for me and really limits my life a lot.

That article SlowDragon highlighted above "Vitamin D Deficiency and Its Association with Thyroid Disease" here:

ncbi.nlm.nih.gov/pmc/articl...

looks interesting although is study into an underactive thyroid and low levels of vit D & calcium but also says:

"Vitamin D is known for its primary role in bone and mineral homeostasis, and it has been shown recently that its deficiency is associated with various diseases such as cardiovascular disease, cancer, infection, and adiposity as well as osteoporosis. Interestingly, it has been shown recently that vitamin D has potent immunomodulatory effects and plays important roles in the pathogenesis of autoimmune diseases."

Vitamin D deficiency is a global health problem. Over a billion people worldwide are vitamin D deficient or insufficient. Yet no international health organization or governmental body has declared a health emergency to warn the public about the urgent need of achieving sufficient vitamin D blood levels. It has been recognized to be involved in various immune functions as well as bone and muscle development. Vitamin D deficiency has been shown to be associated with autoimmune diseases, including rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), inflammatory bowel disease (IBD), multiple sclerosis (MS) and type 1 diabetes (T1DM), and that vitamin D supplementation prevents the onset and/or development of these autoimmune diseases.

"Other articles have demonstrated that patients with Graves’s disease also have low levels of Vitamin D. A different gene in the Vitamin D receptor was shown to predispose people to autoimmune thyroid disease including Graves’ disease and Hashimoto’s thyroiditis."

"In addition, recent numerous studies have shown the relation of vitamin D and various autoimmune diseases. Vitamin D receptor (VDR) gene polymorphisms and vitamin D status are associated with different autoimmune diseases. Furthermore, vitamin D supplementation prevented the onset and/or development of several kinds of autoimmune diseases in humans and animal models. These results suggested that vitamin D deficiency might cause the onset and/or development of several kinds of autoimmune diseases."

It is interesting and this is not highlighted much to thyroid patients by medics - probably as they aren't keen to test for it. Can't understand why as if it prevents some of these diseases it would save more money in long run than it costs, surely? The costs of all this treatment for ill health must be massive and if just some is prevented would save a fortune but seems all about short term savings and not long term gains - pretty much how governments seem to operate and to want to push more of us into private treatment.

I think from a lot of what I have read it is an issue in many conditions so I think I will have to do private test for Vit D and calcium and if low will start to buy some and take a maintenance dose as likely will not get anything on prescription through NHS unfortunately.

I hope you continue to do well in remission. This is my 3rd episode and each time has got worse so am terrified about coming off B&R as my heart symptoms are severe with chest pains/very fast heart rate/breathlessness/profuse sweating and feel like will have a heart attack and takes ages in A&E to be seen here. I was okay after my first episode when I had a little over 3 years of remission - I thought it had gone but then relapsed. Then after 2nd remission only got 3 months then recurred even worse and wanted me to stay in hospital although I didn't - I went home and stayed in bed a few weeks as partner was at home and hate hospitals - was in there in 2014 with something else. Graves can be a very nasty/scary disease although not everyone gets severe symptoms. I have not had much help from NHS - apart from want to push me to have RAI/surgery which I don't want - especially after reading on here all the problems with these options - would prefer to keep thyroid. Don't want quality of life to get any worse than it is or I won't really have any.

All the best to you,

LonelyPlace

[Yoga54 in reply to LonelyPlace]

Thank you for your reply, I was diagnosed in March 2022 thinking I was going through the menopause at 54, hadn’t heard of Graves’ disease and only went to the doctor because my heart was racing and I was sweating and hyper. Thankfully I got an immediate referral to the hospital and put straight on carbimazole then block and replace for 18 months then after 2 negative antibody tests I was able to come off that. I was absolutely terrified and for the first 10 days all of my symptoms came back to haunt me but I kept going and now I feel so much better, I’m fully aware it can come back I just take each day at a time it’s all I can do and although I have a good family and friends I don’t think anyone really understands how awful it can make you feel so I just wanted to say you’re not alone, it’s hard and overwhelming at times but you have to keep going, I wish you all the best.

[LonelyPlace in reply to Yoga54]

Hi

I am glad you are now doing okay and hope you are one of lucky ones and continue to do so - some do and get complete remission and some seem to only have mild symptoms (such as bit sweating or whatever) and some don't even bother taking medication I've read.

I was okay after my 1st episode when I was just on carbimazole 18 mths as I had remission for just over 3 years but since relapsed twice with hardly any remission between (about 3 mths) and endo said I have it severe and also with my TRAb being consistently high unlikely to achieve remission for very long.

It's an awful disease that now totally dominates my life - I can't work, don't go out anywhere, terrified to come off medication - this time I'm on block&replace for last 11 months but feel worse than when just on carbim after previous relapses - completely tired/drained/lethargic all the time etc. I think they put me on that this time so they don't have to bother with me as much as they would if just on carbimazole (as would need to do more monitoring). I often sit in bits and rue the day I ever got this thing and wonder why? I feel guilty that my partner's life is badly affected by it as well.

After reading a lot over the past 8 years I'm not keen to have RAI or surgery and end up with even worse life maybe - if that's possible?? So battle on but feel like this thing may kill me as it affects heart badly (like it did a friend/aquaintance of mine due to his Graves who died of heart attack in early 50's). Can't say I get much help from NHS either. They just seem to want you to have RAI (or otherwise surgery) and if you don't opt for these seem to be left but also if you do opt for them and then they don't work out that similarly you seem to be left. Feel Graves is a terrible hand to be dealt with poor/limited treatments that are the only/same ones since 1940's/50's seemingly. There is not much useful research it seems.

Keep well and look after yourself.

LonelyPlace