Just needing a moan. Had an awful month. Ended up twice in hospital after a heart attack and had to have an angioplasty and a stent put in.

[Mia1057]

Plus my bloods came back with a positive ANA and I now have another autoimmune disease to add to my Hashimotos and Coeliac in the form of Lupus. If another doctor had told me that my cholesterol was too high and I had to lose weight I would have screamed. Eventually someone thought to test my thyroid found my nodules and my parathyroid increase and guess what my T3 and T4 are too low and my TSH is too high, my antiTPO is very high but they don't understand about conversion so they have just upped my thyroxine to 275mcg. My parathyroid is still climbing and my calcium is too high. So now they have recommended that I get the cardiologist and the endo to work together. But this seems to be impossible to arrange. I just want someone to explain why I now have 3 autoimmune problems and 3 hormone dysfunctions, that are affecting my heart and my brain and do something before I am completely disabled by this.

[Jackie]

HI I am sorry you have had a tough time. Look at it this way, now you have the stent that should mean no more artery problems, so better than before and all done in time. With any Cardiac problems, we need to be under a very good Endo and a very good Cardio. Always best to choose your own. If at the same hospital better but need not be so. Endo will test or GP for PTH ( parathyroid), the first test, probably not the one done in Hospital ( lot of ignorance). It is PTH, calcium and vit D all done together and must be Am. If all over range , high not just over, and D high for you, then it may be the PTH. Next thing is a nuclear scan of the PTH, only can be done at a large teaching hospital. If it is the PTH usually easily curable, it is surgery but fairly straightforward. Of course depending on the results the Endo will refer you to a thyroid/PTH surgeon.However if on a lot of vit D may just need reducing or stopping.

Re your treatment, beware with Endo, some hospitals do not agree with T3 treatment at all. So check first before committed to the Endo. The heart , essential to choose a really good hospital, in case an emergency admittance. Unlikely with an Endo, so best one more important.

They communicate with each other. You also take the letters from them and the bloods each other have done to any consultation.

Try not to worry. You have had a shock but I assure you it could be a lot worse.

Best wishes,

Jackie

[Mia1057 in reply to Jackie]

Hi Jackie sorry my post was not clear I already had all the test done for my parathyroid and I have had diagnosed hyperparathyroidism and hyperaldesteronism for the last 2 years. I am waiting for an operation but the problems with my heart as I also have ventricular hypertrophy and valve problems and unstable angina plus white matter changes in my brain due to chronic hypoxic ischemia, very unstable high blood pressure means that they are unwilling to take the risk of surgery at present which they say is very high. I am on apart from the thyroxine, a statin, 2 anticoagulants, aldactone, a beta blocker, steroids and an immunosuppressant for the lupus, Vit D3, 2 BP medications, and of course a gluten free diet for the coeliac and a low fat, low salt, no caffeine diet both for my cholesterol and my Ménière's disease. I feel that I have spent two years with a diagnosis and lots of tablets but that I am just getting sicker and sicker. Perhaps I just have to learn to accept that I am now chronically ill.

[MaryF in reply to Mia1057]

Please to be on the safe side make sure they test you for Hughes Syndrome, which often goes with Lupus.... and can cause problems including perhaps problems that can appear as Meniere's Disease! The blood tests are simple and cheap. Mary F x

[Mia1057 in reply to MaryF]

Hi Mary after your advice the other day, I did this and the blood were taken yesterday, thanks for the info and the support

[MaryF in reply to Mia1057]

Good, it usually shows up if it is there, but a percentage of patients have it, and it takes a while to show up and this is known as sero negative Hughes Syndrome: ard.bmj.com/content/62/12/1...

Come back to me if you find anything further or need a hand. MaryF x

[Mia1057 in reply to MaryF]

Thanks Mary

[Jackie in reply to Mia1057]

Mia,

Sorry I misunderstood. I also have a PTH problem but as dying from my heart and multiple complex co- morbidities I cannot have surgery for my PTH,. So I do understand. The PTH Op is very successful, takes a long time to develop, so hopefully the wait will not matter.PTH does cause problems all over the body, as I am sure you know, so hopefully it will be a new you after the surgery.I still think being diagnosed is more than half the battle None of those drugs are last resort, so that is encouraging. Do you know not to take Beta Blockers before any thyroid test, it effects the blood result only, not the thyroid itself. false result.?

I have been dying for 4 years now.All I can say, I have had to do most of my own diagnosis and my good consultants expect too as say all beyond them. I am just so complicated, then have everything monitored best that can be done, with frequent horrible admissions to hospital for kidney failure when too acute and Ascites when 2 stone worth. I do understand. However, it really looks to me that you will improve and no reason to think any of this is for life..Just battle on and treat each day as you feel, rest plenty and be positive. I hope that helps. Do not think I am preaching, really I am saying how ever bad it seems do not give up. Your doctors still have plans to help you, take hold of that and try and be positive.

I send my love and best wishes to you,

Jackie

[foxglove in reply to Jackie]

A lovely. positive and understanding reply to Mia, I'm sure you've helped a lot

[Jackie in reply to foxglove]

Thank you Jackie

[bantam12 in reply to Mia1057]

Mia, have you investigated the minimal invasive pth operation? It can be done using just a local anesthetic rather than a full general, this maybe safer for you. There aren't many surgeons in the UK that do it but there is one in Oxford and one in Bristol that I know of. A lot of your issues may be improved once your pth problem is sorted. I'm also waiting for pth surgery, hopefully with the surgeon in Bristol.

[wakeham in reply to Mia1057]

Hi Mia Just wanted to say that I was sorry to read that you have so many problems to live with at the moment, and I know that it can't be easy for you! but I just wanted to say that I wish you all the luck in world in getting better health in 2014.

Regards wakeham.

[Moggie]

So sorry to hear of your troubles - you really are going through the wars aren't you. Lets hope 2014 is your year and you get a good medical team sorted.

Sorry I cant comment on your health situation but just wanted to wish you well.

Moggie x

[EVESARAH]

Go and see Dr Barry Peatfield.

[tilly83]

Hi Mila,

Sorry you are feeling so poorly hope someone can help you on this site.... I know nutrition is very important with autoimmune illnesses, I've just bought this on Amazon - The Paleo Approach: Reverse Autoimmune Disease, Heal Your Body [Paperback]

Sarah Ballantyne (Author)

[shaws Administrator]

Maybe your thyroid gland hormone hasn't been supported enough. Dr Lowe has said that undertreated thyroid gland can cause new serious diseases, such as diabetes, heart etc.

Now that you have a parathyroid gland problem too, this is a link for information:-

parathyroid.com/

I don't know why they only prescribe levothyroxine, T4 as our body produces T4, T3, T2, T1 and other thing we may be unaware of. T3 is required in every single cell in our body for it to function properly, the brain contains the most cells.

I have now seen your other replies and you do have complex medical issues and I do hope they can sort you out and get you back to better health.

[Hidden]

Hi

Don't blame you for feeling the way you do

Just want to send you (hugs) and say I can only imagine how you are feeling. You are having to deal with so much and at the same time.

I also feel if they took our symptoms more seriously and much earlier, we may not have to suffer so severely.

Also we may not accumulate so many other immune disorders that may be have been preventable with the right investigations and treatment much earlier.

Also take the T3 and possible non conversion of T4 more seriously.

Sending you lots of good wishes for 2014 and that you improve to enable you to have your op. x.

[JanW]

Sorry to hear you've had such a terrible time of it, try and look on the bright side they put a stent in which should help and now they know things are affecting your heart they will quickly be onto any more problems you might have. My brother in law had a triple heart bypass last month and it turned his life round, he is taking things slowly just glad to be alive I guess. Just incredible how much medical science has moved on amazing what they can do for heart problems these days just a shame that they don't pay more attention to thyroid and autoimmune problems! seem to think one fix cures all but we all know it won't.

[Burgess]

Aww Mia I am so sorry to hear that,since October I have been ill too, so I will have a moan too .i am desperatly weak my husband wants to call the doctor but it is a complete wast of time ,we don't have a good doctor .and you will have probably heard that Dr Skinner the genius on the thyroid died very suddenly with a stroke.i don't know what we will do now .you sound really bad .i will keep you in my prayers if you don't mind . Do you get B 12 injections ?