Second endo appointment and VERY confused ...

[chellegsd]

Hi All, Was diagnosed as hypo last June and was put on 25mg of levo. So far as my doctor was concerned this had sorted my problems as i was back within range - yet i was still feeling awful - fatigue, muscle pain, weight gain, dry skin/hair, hair loss, osteoarthritis etc. Kept returning to doctor but b/t said i was in range and they refused to up my dosage as said I would become hyper instead. After a lot of pestering they referred me to an endo.

In the meantime I saw another specialist who has been monitoring my high cholesterol for the past few years and he said although my TSH levels were in range my symptoms led him to suspect under treatment and he wrote to my doctor suggesting upping the dosage to 50mg which they did in April.

Saw first endo mid April and he agreed that i was being under treated and agreed with increasing the dose even if on paper it looked like i was becoming hyper but suggested i remain on 50mg for 6 weeks . He also suspected i might have hyperparathyroid and would do another b/t to confirm this.

Fast forward to this morning - second endo appointment but not with the same guy. Explain I'm still feeling awful - he doesn't want to up my dose as my last b/t showed i was in range (sorry he read this from the computer so i didn't see what the level was). He suggested i try NDT for 6 weeks but was unable to prescribe this to me - did say i could see an endo privately and they could give me a private prescription (£75 consultation & £25/month for private prescription) or I could get it online (but he couldn't officially advise that) but then went on to say to start with a grain no more ... when i asked what the difference was between levo and ndt he said something about T3 or T4 but tbh I was pretty confused by then.

He did confirm i was hyperparathyroid and suggested due to my age I could have an operation which should help. Should help!!! Told him I wasn't happy to have an operation on a 'maybe help' and he agreed that the levels were only slightly high so would monitor this for the time being. Have another appointment booked for end of July.

So am hoping you good people will be able to help fill in the blanks. Is hyperparathyroid something to do with me being diagnosed hypothyroid? Has anyone had the operation and did it work? Has anyone tried ndt when levo hasn't worked and did it make a difference? Should i buy it online and if so any ideas where to start? or pay to see an endo privately? And why can a private endo prescribe it if the nhs guy can't (he even said i might be seen by him privately).

Sorry for the long post and thank you for taking the time to read it. Kindest regards x

[shaws Administrator]

If you were hyperparathyroid I'd have expected you to have had a consultation with an 'expert' kowledgeable about it. Instead of leaving you wondering what's wrong with you.

It is a separate from hypothyroidism but it is to do with the hyperparathyroid gland not the thyroid gland.

I don't want to worry you more than you are at present but I think you should read this link:-

and insist your doctor refers you to someone who knows what he's talking about rather an appointment with one who makes a suggestion and leaves you 'high and dry'.

blog.parathyroid.com/diagno...

This is one phrase we will all agree about:-

But all endocrinologists are at a disadvantage when it comes to parathyroid problems and diagnosing hyperparathyroidism because they are not surgeons and thus they have never even seen a parathyroid gland, nevertheless a parathyroid adenoma (tumor). We (my partners and I) have a tremendous advantage over any and all endocrinologists… we get to look at dozens of patient’s blood calcium levels, vitamin D levels, parathyroid hormone (PTH) levels, etc, and THEN we get to operate on those people and look at their four parathyroid glands. (Yes, we look at all four glands since this is the only way to get short-term cure rates over 90% and long term cure rates over 80%). As I say to my patients regularly, “would you take my advice on restoring an antique Corvette if you knew I had never seen a Corvette?”.

blog.parathyroid.com/diagno...

Ask GP to refer you a parathyroid surgeon for an exam.

[chellegsd in reply to shaws]

Thank you for your reply and links. I will make an appointment with my doctor and hopefully she'll be able to explain more or refer me to someone who can. Thanks again