Just wanted to update my palps/medication saga and to share my latest findings.
After having the many blood tests done by my endo and lots of follow up appts he made me for an adrenal stress test, bone scan and the final one today an echocardiogram to say I feel in between something akin to a pin cushion and a laboratory animal, with the countless tests, needles and scans I have now had, would be an understatement. Saying that, at least I know he has given me a thorough going over and everything that could have been checked has been checked.
The bloods showed up that I was low in iron (could have strangled my GP as I had been pointing out that my RBC - red blood count - wasn't right for over a year) and also that I was low in vitD again.
Went back on 50,000iu vitD for a week (which started up my palps again big time) and started on 200mcg's iron supplements. Had a iron blood test done by my GP last week and it showed that my iron levels had not moved much so she told me I had an absorption problem and to take it with either orange juice or VitC. Started taking it with Lambert's VitC powder and within three days my heart palps stopped. That was a week ago and they haven't returned so, fingers crossed, hopefully I have seen the last of them.
Having now research low iron/thyroid issues I find that, not only does it stop T4 converting to T3, but it also causes the symptoms of being hyperthyroid if you are on T3 (which I was) and the main symptom being erratic/fast heart rate. It can also play havoc with the adrenals. So could this have been my problem all along - something as simple (or neglectful) as my iron levels causing all this due to the fact that my GP was, once again, looking after the purse strings and not the patient? May have been different if she had just overlooked the warning signs but I had pointed them out at least three times - she even did me a little drawing regarding my RBC - unbelievable.
To say that this illness is a battle is an understatement - you think you have your meds right only for them to go haywire again months or years later, you think you have your supplement regime sorted only for levels to drop again and start causing you problems. If it wasn't for this site and the advise and help from the many well informed people on it were would we all be? up the creak without a paddle, that's where.
I also think that one of the most important tools in fighting this battle is yourself - to do your research, keep a check on your results and keep checking (and double checking) what advise your doctors are/are not giving you is a must and one of the most important tools I have found is the word "WHY". If you don't understand something ask, if your unsure of something ask and if your told no about something ask why.
Finally I would like to say a HUGE thank you to a lovely lady I met through this site - she had been with me all the way through my heart/medication issues. She has patiently listened, advised and guided me through good times and bad. I wont name her but just need to say how precious her friendship is to me.
Moggie x
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Moggie
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Thanks Moggie - folks should look at obvious 'simple' stuff first....
I'm sure I read somewhere that upping the Vit D on it's own could trigger palps, but I don't know where I saw that.....
Since I've got my Vit D up, TSH is down to 1.69 (not that means anything really, except it's been 3.7-5.24 for 2 and half years (I'm undiagnosed). I was wondering if the Vit D did this (as not on any other meds) so it's interesting you say palps (OK yours is a kick start dose!)
I must get GP to check irons, do you take spatone? GP won't do B12 'tho - although I've read a quarter of Thyroid sufferers have PA (or was it the other way round?). J
I take it that spatone is a iron supplement? if so no I don't take it, I have been given ferrous sulphate (I think). I am the type of person that does not take supplements unless I know I am definitely low in something - possibly the wrong way to go with a GP like mine but that's my
It sounds like you have a GP like mine regarding blood testing. I am getting pretty fed up with her attitude and her ignoring blatantly obvious results when bloods have been tested. If it wasn't for my endo I know I would still be struggling with the palps issue. He did untold tests BUT only mentioned two "wonky" ones - I managed to get a print out of all my results (after a fight with his secretary) only to find there are another nine wonky ones and I'm getting pretty sick of research and double checking why this is out and why that's not right - the doctors should be doing this not the patient.
This is the second "kick start" does I have been on. Last June my VitD levels went from 12.8 to 154 and only 8 months later they are back down again - no explanation given, just given more VitD to take.
Thanks for your reply - as you might be able to tell by my rant I am feeling pretty low today. I have pieced quite a lot of info together and (I don't know if I am worrying myself unnecessarily) I think there could be something going on with my parathyroid that the doctors haven't picked up on - so yet another battle and, hopefully, more tests to confirm/rule out my suspicions. If the endo wont do the thyroid scan I want I don't know were that will leave me.
That's really interesting to hear, off to get some iron supplement as am veggie.... glad you are feeling better and like you I find this site incredibly helpful...x
Hyper parathyroidism is not as rare as GP are taught and is lilnked to hypo thyroid disease (GP's are taught they are completely separate - rubbiish!) Vit D is often surpressed in hyperparathyroidism - body tries to stop too much calcium being absorbed. That's way supplementing with vit D is not always the right thing to do without knowing the whole picture. If you have high PTH and high calcium I would be getting on to GP - this site has a lot of info... the calcium has to be converted to UK numbers. Sorry more research!
Thanks for that - I have been doing a lot of research myself on the subject so that I can go back to the endo on the 30th and put my findings to him, which are:
I have a high ALP level of 316 (80 - 260) Alkaline Phosphatase - this result has been steadily getting worse.
A high Parathyroid level of 9.8 (0.95 - 5.7) which again is steadily getting worse.
Continuing low vitD levels which when treated with 50,000iu supplements will increase but drop back down again.
The most interesting thing I have found is that, if you look at my blog above I mention that when I take vitD my palps get worse and apparently this is a classic sign that the problem is with the parathyroid NOT a VitD problem.
Lets hope my endo takes me seriously and says yes to a scan. If he says no I will be asking him to explain his take on the situation. I must admit that when I feel instinctively that something is wrong I tend to be like a dog with a bone, I just wont give up until I am satisfied.
Thanks for taking the time to answer and for the link.
Hi Moggie, As I understand it Vit D is a pro hormone, pretty powerful. You are very clued up. I think you may know more than your endo!! Good luck!
Jackie here and I are seeing very good endo (private though, in Warwickshire) if you need her info PM one of us.
I,m having the calcium/PTH conversation on Saturday with her. I do understand too that hypercalcimia can result from over replacement with thyroid hormones..
My brother had op for HPT 5 tumours, one down in his chest! His PTH and calcium were very high indeed.
I'm not saying its a tumour - and I hope your brother is now well - but when you have an auto immune illness then this can strike anywhere, and attack anything (or so I have found out). I don't fully understand it myself at the moment, just know that even though my thyroid levels are "normal" I am still getting symptoms - so am still searching for answers - and I do agree with my endo as he doesn't think they are all thyroid related. Maybe they are not thyroid related but they could be parathyroid related.
Would be interesting to hear what your endo's take on the calcium/parathyroid issues are if you feel like sharing.
Don't worry you didn't alarm me - cancer was the first thing that come to my mind when I was doing my research as its the first thing that comes up when you google my blood results/symptoms. I had already worked out that if it was a tumour it would probably be benign. It was good of you to take the time and trouble to try and help and offer your knowledge.
Will look forward to any info you may get from your endo.
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