Thyroid meds side effects? Odd symptoms ?

Hi Jan/schnauzerdaisy 

I’m Anne, one of the Community Champions here on the Online Community and I'm sorry to read about the symptoms you have. It all sounds very debilitating. Although I'm not a member of this group I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I hope your treatment team are able to resolve these issues for you.

Hi I had my thyroid removed In July  2024 and still on calcium supplements, was sent to endocrinologist but discharged me with a reduction in calcium, calcium went back down PTH was low range 2.7pmol, gp wrote back to endocrinologist and all endocrinologist said was to increase calcium again and another blood test gp has not even contacted me yet. I have not been told if its permanent but I guess it is. And no plan. My tsh was 2.64 in December and endo said it was fine I'm not sure if it's supposed to be suppressed. No one seems to manage anything properly. Endocrinologist dismised my symptoms of low calcium. My knee been stiff and mild pain when bending since thyroidectomy, im under physiotherapy for it now. Sorry for going on a bit.

I'm sorry to hear about your symptoms too it's very difficult as we all seem to have mixed messages and no real clarity.  I have joint pains too and a Dexa scan showed osteopenia have you had one of these?  Having said that the hospital gave me no advice or follow up with this and I have to use dr google which is def not ideal.  
i was told to forget about tsh suppression but told zi could have higher meds if I wanted to keep it suppressed.  That has thrown me as I'm nit medically trained and have no idea !  I have a review due shortly so will tackle it all then.  It's just every zi have with the palpitations and dizzy spells that are worrying and nobody can find out why!

ibso hope you can get some answers and zi think we can't stop questioning our doctors although recently zi think I'm considered difficult and over anxious! Yes I'm anxious but I think this is normal when things are not right with our bodies! I can't just accept without understanding or being taken seriously rather than just being told not to worry .  I know the teams are very busy but it's not easy to navigate and get answers.  Just don't give up and hopefully we will both get there 

Hi I have not had a dexa scan. Are you on calcium supplements. I seem to be ok on the dosage I'm on apart from odd twitch and occasional tingle Endocrinologist said knee nothing to do with calcium but physiotherapist said knee pain can be linked to calcium and the timings are an indication. I have not been told much, I guess I may be on calcium long term but has not been diagnosed yet and its nearly 2 years. I just want a plan as I read  calcium problem is  supposed to be monitored every 3 months. I get tsh done but only once a year unless I have symptoms.

I'm on 2 calcium tabs per day and they just seem to melt me at the lowest level of normal range.  I do have bloods every 6 months.  I was told that my parathyroid glands should start working after my thyroid was removed but sadly they haven't! I do get cramp in my hands and feet and I confess father's bad I just take an extra calcium,  I will raise it at my next review.  
calcium will affect bones so im also going to raise my Dexs  scan results at my revues next week i think calcium plays a vital role and last thing ai need is to develop isteopiris!  I'll let you know what the advice is and maybe a DECA scan would be good idea for you too. At least then you will know Huw things stand? 

it's not easy navigating all the issues but I have learned that unless I raise concerns and ask the right questions things can get pushed aside.  I'm taking lust with me this time and I will go through each concern and request current answers and what can he done to help me. 
its exhausting but ive decided its the berthing to give me peace of mind.  They are v v busy with so many patients so this way I can narrow down the conversation to my own issues and hopefully get a plan of action that addresses things fir me  xx 

S o sorry about my typos but hope you can see what I'm saying

Hi your the same as me for calcium I'm on 2 adcal d3 a day and blood test for adjusted calcium always at lower end of normal, in December endocrinologist reduced it to one a day and discharged me and it went back down so now back on 2, got blood test in 2 weeks. I'm going to push for calcium check every 6 months. I still get twitching and odd tingle and sometimes itch feet. I just don't get why they are not diagnosising it. Also get achy fingers not sure if that's a symptom. My PTH is in range but at the low end, so I guess it's not going any higher when calcium is low.

Oh sorry I think I've repeated myself.