Another newbie in need of some advice

First topic message reminder :

Hi all

Been following the forum for a few weeks now, and having had a week of going round in circles thought I would say hello and take the liberty of asking for some advice.

Around November went to see GP about a lump in my neck - having previously had goitre removed 17 years ago, and then cysts aspirated 7or 8 years ago i thought it would just be more of the same. Scan confirmed it is another cyst but my blood tests showed "borderline high" calcium levels. GP decided lump not big enough and calcium levels not high enough to do anything and told me to go back in 3 months.

Recently re-tested and Calcium still borderline high, but PTH also borderline high, so this time GP ordered a 24 Urine Calcium test. By this time I have of course googled it and learned about HPT and was amazed to find that there might actually be an explanation for the myriad of symptoms I have had for at least 5 years (all the usual, disturbed sleep, exhaustion, poor memory, tinnitus, thinning hair, thirst, irritability, numerous aches and pains etc etc etc) and which various GPs have all pretty much attributed to me being a hypochondriac, at least that is how they made me feel. 

Was no surprise to me therefore when the urine test results came back "abnormal" and GP advised he was referring me to see a specialist in Endocrinolgy. Thus began my trip around the NHS consultant merry go round. 

To cut a long story short, my local hospital in Northampton can't even tell me how long I will have to wait to get my first appointment to see a consultant, and the next two nearest hospitals have waiting time of up to 120 days. I really feel that my symptoms are getting worse particularly palpitations which I'm finding pretty worrying, so trying to arrange a private consultation. 

As a member of a Friendly Society I can claim up to £1500 for consultations and tests to get a diagnosis, but it has to be with a consultant who has an NHS post as well as private practice, as I will have to be referred back to NHS for any ongoing treatment or surgery. Advice from my GP and local hospital as to who to contact, and how, was look on the Internet! Very helpful.

After two days of trawling the net, and making umpteen phone calls I've come to the conclusion there is not an Endocrinologist actually in Northamptonshire or Milton Keynes area. 

BMI tell me that the nearest consultant they have is Neil Gittoes in Birmingham. The other possibility I have noted through this forum is Dr Miles Levy at the Spire Hospital in Leicester. 

Leicester is the easier option location wise, but if anyone thinks travelling further afield would be better I would be grateful for any insight? Would really appreciate any advice or information as to what to do next.

Thank you

Awww, thank you all very much for your good wishes, it means a lot. 

Feeling a little nervous about it, though thanks to all of you I feel much better equipped to deal with this now. 

Will let you know how I get on. 

Kate Xx

He's a really nice chap Kate, in my experience very patient, will hear you out and be very honest with you without the BS you get from some endos!  He's very sympathetic and understanding of just how debilitating the symptoms can be, and also an advocate of early surgical intervention once a diagnosis is established. He's not one of the 'wait and watch' brigade, unless that's the patient's choice.  I'm sure you'll do fine with him.  

Jasmine x

Hi All

I had my consultation with Dr Levy yesterday, and as Jasmine said, he was very patient and understanding. Actually listened to my long list of woes, and didn't once make me feel like I was wasting his time!

I took with me print outs with the results of all of the blood and urine tests that the GP had ordered in the last 6 months, and he agreed that it all points to HPT. However he said that the levels are not particularly high, and there are currently no issues with bone density so wants me to have my vitamin D levels checked (for some reason this hasn't been done before now) and to see if anything shows up on an ultrasound scan before we consider potential treatment.

He said that the scar tissue from my previous surgery and the cyst I currently have on my thyroid, might make it difficult to find anything via ultrasound but he has referred me to the same guy that Tigerlily mentioned (Amman Boli/ Stromboli, lol) as he thinks if anyone can find an adenoma if there is one, it's him. 

Luckily I am a member of a Friendly Society that will fund consultation and tests to get a diagnosis, so I have been able to arrange scan for next week. Seeing Dr. Levy again on 17th June to review all of the results and discuss what happens next. 

In the meantime, he did suggest I might like to consider taking some vitamin D3 (1000iu per day)  http://www.hollandandbarrett.com/shop/product/holland-barrett-vitamin-d3-tablets-25ug-60099316. 
Not sure whether to give it a go or just wait for the results of the blood tests. If I'm not Vit D deficient and start taking them, will it make me feel worse? 

Thanks 

Kate Xx

Hi Kate

Just a quick reply - I've exhausted myself today for some reason and am ready for bed.

But that's a great result and I'm glad you can get your US done soonest and see Dr Levy again without delay.

I was taking 2000 iu Vit D3 daily to keep up my levels, but have now decided to stop taking it in the summer and see if my Vit D falls back again as it did before. I would wait until you've had your blood taken to check your Vit D before supplementing, if you choose to do that.

I've been re-reading all the Vitamin D pages on Dr Norman's site www.parathyroid.com - that's what's probably tired me out! You might get some good information on Vit D if you have a look at these as well.

So glad you had a good consult and are moving forward.

Love from Tigerlily xx

Thanks Tigerlily, I think I will wait. It's only a few weeks after all. 
Have you managed to get an appointment with Stomboli? (I did have a little smile when Dr Levy mentioned him). Xx

All sounds good, Kate! I knew Jasmine wouldn't steer you wrong!   

If I were you, I wouldn't take the vitamin D, but you need to use your own good judgement on that. Tigerlily is right. You really need to check out Dr. Norman's website and his info on vitamin D if you haven't already. When my PTH was first found to be high at 112.0, my calcium was only 9.8, and my vitamin D was in the 20s. My doctors prescribed 50,000 IU of vitamin D twice weekly! I told them I didn't think it was a good idea because I had already read Dr. Norman's information. The insisted I needed it. I did take it for a couple of months, as I watched my calcium go higher and higher. I finally just told them I was not going to take it anymore. My calcium continued to climb without it. I would hate to have seen where the calcium would have gone had I continued taking it. Again, you need to make this decision for yourself. I just wanted to share my experience.

Audrey

I haven't heard back from Dr Levy since my consult, Kate, so I expect I shall hear next week. The next PTH clinic with his team is in the 3rd week of June, so I hope to be slotted in then.

Yes, Amman Boli, that was his name - other wise known as Strom!
 Bless him! I hope we are able to benefit from his US experience and get these things visualised at last.

Keep us posted, and I think it's a good idea not to 'muddy the waters' by taking the Vit D just yet.
As you say, it's not long to wait.

Strokes to the lovely Ted - Love from Tigerlily xx

Ah yes, the amazing Mr Boli, Strom to his friends! He did my US too and he was very thorough, and very kind. Mine was negative in the end but he spent ages going back and forth in search mode, with me virtually upside down at one stage.  Dr Levy did say to me that if Strom couldn't find it, it's not there, but don't despair if he doesn't find it as I went on to have two positive MIBIs and an adenoma removed.

Jasmine x

Had scan today with Mr Boli. Unfortunately he couldn't find anything even after aspirating the cyst on my thyroid, so no further forward. Have to wait and see what Dr Levy says when I see him next on 17th June

Kate

Sorry to hear that, Kate, but don't despair. As Jasmine said, sometimes they don't show up but they are still there.

It sounds as though Mr Boli gave it his best shot and I'm sure Dr Levy will come up with some more ideas when you next see him.

Hang on in there. It's not too long to wait.

Love from Tigerlily xx

Yes, that is very true! I had a negative scan the morning of surgery and then had 2 tumors removed. Don't let it get you down, Kate! Dr. Lopez told me the only reason they do the scan the morning of surgery is to make sure the tumors aren't in any strange places where they shouldn't be. It doesn't mean there are no tumors behind the thyroid where they belong!

Audrey

Aw thank you for your support Tigerlily and Audrey. 

Kind of expected it really due to my previous surgery and with everything everyone has said about their scans, so not giving up hope. It just would have been to be lucky and have a straightforward diagnosis. 

Onwards and upwards. Xx