secondary hyperparathyroid with muscle and eye problems

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I rec. Radio iodine treatment for Graves desease 11 months ago, yet my general health and mobility has deterioted. Levothyroxin has gradually been increased to 125, now 100 micrograms daily. I practically begged my GP to re refer me back to endocrinologist as I can barely walk somedays due to swelling and inflammation especially in my legs, I am also struggling with incredible amount of weight gain and watering eyes drooping of one eye.Did finally see endo again 2 weeks ago, my calcium has been on low side for last 18 months and I have low vit D. He says I now have secondary hyperparathyroidism. Does any of this sound familiar? Now taking vit D.

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  • Posted

    Oh Janice,  feel so bad for you.  I am no expert on any of this and have lost faith in the private sector as well as the NHS as many of us have done. I am struggling to a point with so called primary hyperparathyroidism and come up against a brick wall as the endocrinologists are so ignorant.  However, it does sound like secondary if you have low calcium.  If you are on facebook, I suggest you join a private group where everyone has written their experiences and you might get some advice from there and will certainly get some sympathy and perhaps help,  its Hyperparathyroid UK Action for Change

    Good luck, hope to see you there

    Elaine 

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    • Posted

      Thanks Elaine, its good to know someone is listening..I am on facebook so will try your suggestion.

      Bye for now

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  • Posted

    Hello Janice:

    My name is Shelly and I am an RN in the USA.  I have Hashimoto's disease,  since 1987,  but I know both sides of the thyroid very well.

    Okay first of all, I am sorry to read what has happened to you.  RAI is being misused by doctor's who think it will be easier to make you Hypo. RAI was designed for Cancer of the thyroid and not made to cure Graves.  Also RAI kills off the Parathyroid glands which sit at the corners of the lobes of the thyroid, so if they are gone, you will have no calcium.

    Now LEVO is a synthetic med, and made to work with a thyroid gland and since you now do not have one, the med takes longer and it is harder to work in you.  Your liver and intestines and other organs have to absorb it and make it work.

    The swelling is a bad side effect of LEVO and poor thyroid levels.  Make sure you take LEVO an hour before eating and you need to have good ferritin and iron levels to make it work well. 

    Calcium will have to be taken as you must have all the minerals in the body good or you will see your muscles ache and lose strength.  Most thyroid patients have low Vit. D.  There is linkage to this plus we lose the ability to make it from sunlight as we age. Also it will lead to osetoporosis if not treated.

    I am going to suggest some lab work (BLOOD) levels you should have done. you need a mineral panel to include: Potassium, calcium, magnesium, sodium, B-12, ferritin and iron, and selenium, also  ablood cortisol level.  Ask your GP to do these tests. Also TSH, T4 and T3 levels.

    You may have to switch to NDT but NHS will not support it because it is off patent. It is made fro a Pig's gland and is very close to a human's one. brand name are Thyroid S and Armour Thyroid.

    Keep us posted on how you do.

    Regards,

    Shelly

     

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    • Posted

      Thankyou Shelly. It is good to hear other perspective. I have had alot of these tests will put up the those results I can find, Dr's here are not good at providing their patients with their results. As for the levothyroxine. ..I agree I have felt all along that the medication have had an adverse affect (I have always suffered side effects from most medications)however feel so limited with options here in the uk. If I continue down this road , (downhill )I am thinking I may be able to access better care in France. I need to look into this. What have i got to loose?

      Regards

      Janice

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    • Posted

      Hi Shelly. I managed to gather results I have although I realise there may be more needed

      Tsh 0.07 free t4:21.4

      Normal U &E .Liver function

      Glucose:5.4

      Vit b12:334

      Ferritin:75.4

      HbA/c:5.6%

      Total cholesterol, up ( 6.1)

      ESR (?) Slightly risen

      PTH elevated 18.6

      Low corrected (?) Calcium 2.19

      Magnesium (normal) 0.83

      Hope you can make some sense of these

      Kind regards

      Jan

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    • Posted

      Hello Janice

      I will comment on what is abnormal results here. The other results are okay.

      TSH is low at 0.07 which indicates Hyperthyroid symptoms and too much Thyroxine in your body.

      T4 is way too high and should be between 4.5 to 11.2 and at 21.4 that is too much.

      ESR is  Slightly elevated which means autoimmune problems and inflammation in the body and since you had Graves it picks that up. It is better than highly elevated.

      PTH elevated and that can effect the calcium in the body. Do you take Calcium and I think you said you do.

      Cholesterol level can be off when TSH is not in normal range.

      From the blood it looks like you have too much Levo in you as your TSH and T4 are off the charts.  You should ask the doctor based on these results you need a 75mcg dose or  100mcg dose. 

      Regards,

      Shelly

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    • Posted

      Hello Shelly, thank you so much. You agree with the dr. These tests were taken a few weeks ago and the dr reduced thyroxine to 100 per day. As I don't feel any better perhaps im still taking too much. Dr also advised me to start vit d, which I have. No vit c, not yet. I am having nerve and muscle testing next week and still waiting for an eye dr appointment. I will be seeing the endo dr again im March. So I haven't quite been abandoned yet. Although I had to practically beg to get this far! I'll keep you posted

      Kindest regards

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    • Posted

      Hello Janice:

      You may have to go down to 75mcg but reduce it slowly.  It bothers the body more when you do a sudden change up or down.  Go down in 25% less increments.

      I also take VIT. D manyof us are low in it as we age and thyroid people tend to be low in it.  It will help muscles and bone strength out a lot. You will feel much better as you get that back in normal range.

      Keep me posted on how you do.

      Shelly

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  • Posted

    Janice darling I know exactly what you are going through! I am dealing with the same exact thing! It has taken me 5 years to find answers and I am so happy to share them with you. First of all doctors should not be taking thyroids out of womans bodies all the time! Not every case is necessary!

    You still have a chemical imbalance. Most endocrinologists have no knowledge on these cases, why do I still have thyroid symptoms with no thyroid? They are only skimming the top when the thyroid hormones go so deep. Get a blood test of the entire thyroid panel and especially the reverse T3 that is where you will find the answers. In the mean time you should get acupuncture so the depression doesn't take over your life.

    There's a light at the end of the tunnel, you just have to fight for it..

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    • Posted

      I have not heard of reverse T3? Do you think I could discuss this with my Dr? depression is becoming a problem so yes I need to address this.

      regards

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    • Posted

      Hello Janice:

      Let me explain what is what with the thyroid gland.

      The thyroid is a butterfly shaped gland located on top of the trachea. (Your windpipe) on the corners are little glands called the parathyroid glands.  They make calcium in the body.

      There are 4 hormones made by the thyroid T1, T2, T3 and T4.

      Levo is a synthetic drug made to act like T4.  Thyroxine 4 (T4) is normally converted into T3 (liothyronine) and is called the useable hormone.

      T3 is needed by the body everywhere!  Your heart, other organs and brain use it.  When you have no thyroid the body must use the liver and other organs to absorb it.

      Reverse T3  is when your body is getting rid of excess T3 via the liver  and can be checked by a blood test.  The normal level should be 9.2 to 24.1.  

      From what hear on this forum is that NHS does not really allow this test and you need a good Endocrinologist  who know the thyroid to push for the test.  

      Depression can happen as we are ill, and if medication is not working well on you, not enough of the hormone is helping.  We all are different and some of us need another type of thyroid med, regardless of NHS policies.

      There is no shame, in addressing depression and if the brain chemicals are low they have pills for it.

      First let's get some blood work and ask for a copy of it and post it here and we can help you or at least get you in the right direction!

      I have asked a lady on here named Barbara98940 who had reactions to Levo, and she will send you a private message. She knows a lot from her years of experience and she is in the UK.  I am in the USA, and she can help you a bit more since she buys NDT (natural dessicated thyroid).

      Any questions feel free to ask,

      Regards,

      Shelly

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    • Posted

      Thanks Shelly,,especially for uk link. I have an appointment for muscle and nerve tests in a couple of weeks and awaiting results of tests that rheumatologist took. Also await appointment with optomologist. Will then see Endocronologist in about 6 weeks time so that he can look at the whole picture. This is a new endo. And so far I feel he is a big improvement on the last I had. So I'm going to educate myself as much as possible prior to seeing him again and I will definitely want to discuss the form of thyroxine.
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    • Posted

      Shelley - I've found Janice at last! But I need some sleep as it's 1am! So I'll reply another time.

      Shelley, Janice, one thing it's important to mention...check the range on your T4 result. I think the UK ranges are different to US. My lab's T4 range is 9-19. By this range, although you are still over medicated it's only by a bit. Also if increasing/decreasing your dose I found it best to do it by a quarter of a 25mcg tablet every 2-3 days. This gives your body time to adjust and avoids the swings in levels and side effects. It takes 6-12 weeks for a change in dose to be reflected in the blood tests.

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    • Posted

      Shelley, thank you for the vote of confidence! smile

      My knowledge comes from working out, over 25 years, what's best for me.

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    • Posted

      Hello Barbara:

      Yes, you are right on the T4 as our range is 4.5 to 11.2  in USA.  It most likely has to do with the equipment used. I will note UK range in my notes.

      Thanks,

      Shelly

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    • Posted

      Shelley, I have found that within the UK different labs use different ranges. In my search for a decent endo.I have had blood tests done by different hospitals and have been told different ranges. Wouldn't it be nice to have some standardisation?
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    • Posted

      Hello Barbara:

      Same in the USA, ranges can vary.  I agree 100% on standard ranges. It would be simple to do, I guess they want to keep us on our toes, LOL.

      Shelly

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