thyroid function phpt and calcium levels

Hi everyone, 
I am interested to hear anyone's thoughts on the role of calcitonin in phpt and thyroid issues. I have read that calcitonin produced by the thyroid lowers calcium levels. So would this be true for someone who has an underactive thyroid. The lack of hormone is causing not enough calcitonin to be produced.... thus resulting in higher blood calcium levels. Just trying to get my head a round a few things. Since starting thyroxine 6 weeks ago... Unfortunately feeling worse on it than before but besides that..... my calcium levels previously were 2.65 2.69 2.70 2.74 then I started taking thyroxine and 2 weeks after calcium was as 2.71 then 2 weeks ago calcium was 2.61.... this is making me doubt I have hyperparathyroid and maybe I was lacking calcitonin caused by my underactive thyroid.  But I don't think this would cause osteopenia, dehydration and frequent fir St and urination. I'm really confused and doubting myself ahain as usual! It could be co incidence that caloud levels have come down as I know they fluctuate the latest one of 2.61 is still elevated but closest to normal. 

Some days i just wish I knew what was causing whay and that I wasn't completely bonkers!!! 

Anyway I hope everyone is ticking along as well as possible today 
rachel xxx

Hi Rachel

Sorry i missed this post, put it down to my brain fog !

I can't really answer your question but thyroid problems can and do affect everything. I suppose it is possible Mr M may want your thyroid stable before making a decision on hpth or not.

When I first went to the Endo about hpth she wanted to reduce my Levo and do other thyroid tests as she was convinced my calcium and pth would sort themselves out, despite me being on a stable dose for years.
When they didn't she had to admit I might have been right !!

You will feel worse on Levo to start with, it can take many months for levels to settle down and to get to the right dose. I hope you are getting regular bloods done, usually 6-12 weeks depending on your dose and levels.

I saw Mr M today, he really is a nice man and very helpful.

Have you had one of your scans ? Did they spot anything ?

Nelly

Hi nelly I hope your doing okay, it's a tricky one I understand what your saying. ... I'm a little worried I may look a little silly when I meet him and he will say it's my thyroid. My thyroid is only borderline I have found out and I'm presuming this wouldn't cause the osteopenia and some other symptoms. 
I have been taking thyroxine since August and had my bloods a couple of weeks ago my tsh was down to 2.9 from 9.8 so seems to be working. 
I had the nuclear medicine scan monday but it needed to be interpreted so I'm hoping when I have the ultra sound friday the consultant if there is one present maybe able to tell me something. 

Rachel xxx

Tsh of 2.9 is still to high so you have a way to go, usually a tsh of around 1 is where people feel better but more important is T4 and T3 as they tell more than tsh but very few Endos accept this !!!! 

You certainly wouldn't want this op done unless necessary so if it did mean waiting a bit while your thyroid settled then better than an op you didn't need.

Good luck with the next scan

Nelly

Thanks for the knowledge.  I have had my t4 tested and that was borderline of 11.9 I don't think my tto has ever been tested. 
My the has always been all over the place from 4.6 to 8.0 to 9.8 I'm just trying to piece together my calcium levels and see if they correlate and decrease when my tsh does..... hmmm puzzling II'm not sure if thyroid problems can  cause osteopenia and frequent urination and dehydration. My mind questions it all 
xx

Your thyroid levels were not borderline, they showed definite hypothyroidism. Your Endo is presumably sticking to outdated guidelines of not wanting to diagnose until tsh is 10.

The current guidelines give tsh 5.5 as top of the range, this will vary slightly depending on assay used. 

Thyroid problems can affect bone density but this is another contentious matter. Hypothyroidism can affect just about every cell in your body so the list of possible symptoms is endless and no 2 people will have exactly the same ones although quite a few are common for most.

The whole thyroid issue is a minefield and treatment success comes down to us, the patients, learning as much as possible because we all have to be able to manage this ourselves. Left up to the majority of GP's and Endos we would all be kept on inappropriate doses because they don't understand how to correctly interpret the results, that is of course if you are lucky enough to be diagnosed in the first place.

Mr Admin and I could write a very thick book on this subject  it would a never ending story.

Nelly

Here's some bed-time reading on Hypothyroid symptoms that may be experienced.

300 Hypothyroid symptoms:

http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/

This is facintating!  There is every symptom under the sun. Again it's hard to differentiate between hpt issues... i have no idea anymore! I shall just have to wait and see. I still don't think I am on the right dose for thyroid issues. Because I was so called borderline I think she just put me on the lowest dose but hey ho! 
I am also interested in the speed of bone loss, I am presuming it is a gradual thing over the years no just months and a couple of years maybe longer. I'm lost as to what to think I just don't want to look silly in front of Mr. M! 

Rachel xxx

Your Levo dose should be increased until you are symptom free and your tsh is down to around 1, your T4 closer to the top of the range and T3 around midway in range.

You should be getting thyroid blood tests every 6-12 weeks after each dose change until you are stable and well, although some symptoms don't get better. As i said it can be a challenge  getting the right meds and dose and its up to you to take charge as doctors are generally happy to leave us undermedicated because they are just looking for bloods somewhere in the ranges but we all need different levels so 'somewhere" in range is useless.

If your GP is saying you are now on the right dose he/she is wrong because your tsh is too high. What dose are you on now and for how long ? It can take 18-24 months to get it right so not a quick fix.

Nelly

I am currently taking 50mg of thyroxine. I have no idea if this is standard procedure to start someone on.  I have a book about hypothyroidism it's facinating reading about how people are regularly undermedicated. This is really helpful nelly thankyou!  

I've looked over my bloods with regards to hpt issues. It seems consistent my phosphates are low or just within range and my magnesium is at the top end everytime. My urea is always way out of range and I have a gfr of lower than 90. I'm assuming my kidneys maybe overworked. This is the part I'm thinking pth issues along with the osteopenia and raised calcium.  

Xx

25 and 50mcg are starting doses, rarely would 50mcg be enough as a maintenance dose. If i were you i would be asking for an increase to 75mcg and re-test in 6-8 weeks with the aim of getting tsh to around 1.

I believe Mag is usually low in hpth and high in fhh, i have never had mag tested so can't compare.

Nelly

Okay thankyou I will go back to my gp at some point and ask maybe it's early days but I was thinking a higher dose would be beneficial.  Hopefully tommorow I will find something out at the ultra sound and maybe a consultant will be present. Just have to wait and see what Mr M says on Tuesday! Just hoping he doesn't think I'm a time waster

Rachel xxx

LOVE the cartoon, Nelly!!!!

Audrey

Rachel how did the the scan go today, did they spot anything ?

Hey Nelly,  today was unsuccessful I'm not sure about mondays scan will have to wait until Tuesday.  The dr who did the ultrasound was very nice and before he did the us he said this was only to guide the surgeon.  I can't help feeling dissapointed it makes me doubt everything even though I have a diagnosis.  I really have had enough of it all. 
I don't know what to think and where to go from here I'm guessing I will find out tuesday

Rachel xxxx

I know its disappointing but don't despair, wait and see what Mr M has to say.

When I first saw him I hadn't had the scans done so he had nothing to look at, I did ask him what would happen if nothing showed up and he said it would make it more difficult but he would probably just have to go hunting for it. I didn't know what my scans had shown until a few mins before I went into theatre, the ultrasound hadn't shown anything clearly enough but the mibi had, although in the end it wasn't in exactly the same place as the mibi showed ! 

Try not to worry yourself to much, not long to wait

Nelly

Thanks Nelly thats made me feel much better.  I didn't think things would be straight forward.  Maybe something will show up in the mibi. Like you said he may suggest doing something exploratory but I'm sure surgeons would prefer to know something was there rather than diving in but hey we shall see. It's been a strange day I didn't get my hopes up but I had a little tiny glimmer of hope. 
I'm anxious about tuesday and how long I will have with him and what will influence his decisions.  Again today I heard he was a very nice man, and praying he won't think I'm mad! 
Xx

Good luck tomorrow Rachel, I will look forward to an update on your meet with the lovely Mr M.

Nelly

Thanks Nelly, 
I'm looking forward to it but anxious. I had an email from my endo this morning saying she was looking at both my scans this afternoon and the accelerated bone density loss in my forearm is classic of hpt. I expressed in an email my concerns and she said Mr M will take into consideration everything not just the scans. 
I've put together a letter for him and I'm just thinking of some questions and what to ask him and what he will ask me do you have any advice.
much appreciated rachel xx

Personally i wouldn't bother with giving him a letter, could be a waste of precious appt time while he reads it and I think he might rather chat to you, just my opinion but handing over a letter while you are actually there for the appt seems a bit strange. Of course you do what you think best.

Try not to over think what might happen or be said, just go with the flow. Good idea to jot down any questions you have so you don't forget but in reality he has your scans, he will ask about symptoms and either talk about the op if that is what he plans or if not an op at this time then the plan for further monitoring.

Honestly Rachel he is really friendly and I'm sure you will get on fine, whatever the outcome I believe he would only do what is in your best interests.

Nelly

It's so good to hear that someone this good on your side, Rachel and Nelly.

Go with the flow of the conversation, Rachel, would also be my advice. And also take a list of points that you don't want to forget to ask about.

Best of Luck and let us know what happens.

Love from Tigerlily xxxx

Thankyou both for your words of advice,  I have a list to take but may have to improvise as I'm not sure what direction it will go in, hoping that I feel with it enough as well not to come across vague like I normal do when I don't feel too great
rachel xxx

I haven't been on here often lately, and I'm sorry I've missed so much. Too much going on here. Too many appointments, too much research, etc. It is a shame all of our illnesses take us away from the things that mean the most to us.

May the force be with you, Rachel!!! Can't wait to hear how it goes!

Audrey

Hi everyone just an update on todays appointment.  
Both my scans were negative.  And after a long conversation I am being put on cinacalcet for 28 days. Then if I feel better I will be considered for surgery.  I am disappointed as my endocrinologist knows I am struggling but they want to be sure the parathyroid is too blame. I am dissapointed but i thought this might happen.  If anyone else has tried cinacalcet I would be greatful for some advice
rachel xx

Don't be to disappointed, he hasn't said a definite no and sent you packing. Had a quick read up on Cin and it seems to be a good option for you to try.

Was it the negative scans or your blood levels that made the decision to hold off on surgery ?

Having experience of 2 neck ops myself I really believe you wouldn't want this surgery done on the off chance of finding something and failing as it makes it more difficult going in a second time if needed, so best to be sure before diving in blind.

I'm not sure anyone on here has tried the Cinacalcet approach so you may be the first, be interesting to hear how you get on.

Anyway did you get on ok with Mr M ?

Nelly