Parathyroidism: Has anyone been diagnosed with... - CLL Support

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Parathyroidism

onu1tadi2
onu1tadi2

Has anyone been diagnosed with parathyroidism? I finished treatment for cll in June but by Sept had this problem Canadian doctors do nothing. US doctors perform 15 minute almost bloodless operation to remove affected parathyroid glands (very tiny near thyroid glands) causes metabolism to allow calcium into blood causing slow deterioration of bones and fatigue

13 Replies

I had Hyperparathirodism primaria.((PTH and Ca jonis. was +++).After parathiroidectomy one gland all is normal.It was PH:Adenoma.

onu1tadi2
onu1tadi2 in reply to Name-1

Doctors here in Toronto generally, out of ignorance or budget considerations, do not support having operation. I do not agree with this and wonder what it will do to me I do not think wait and see approach makes sense

onu1tadi2
onu1tadi2 in reply to Name-1

Thanks for your reply. Did your parathyroid condition cause any symptoms and how long did you wait for surgery after diagnosis?

Name-1
Name-1 in reply to onu1tadi2

No symptoms.I had surgery after about one year.

cllady01
cllady01Volunteer

If you haven't done so, and are able to do so, see an Endocrinologist and ask for a work up for parathyroid problem.

You should be able to relate any symptoms you are having that will help the Dr. know where to start in looking for the source of the problem.

If you were told by a General Practitioner there is a problem ask for the specifics and get the blood report the GP is referring to to take with you for the Endocrinologist to see.

The test for parathyroid levels is not one done my GPs and not done without a suspicion by Endocrinologists in US.

It is possible to do nothing when some symptoms arise, but there may be a need to adjust some otc vitamin D and/or calcium. And there may need to be an operation.

All depends on the specifics of your parathyroid problem. The testing has to be done before anything else is done--it is an intricate system of aiding and controlling of minerals in the body when they are needed--not too simple to get at, but well worth the effort to get the right Dr. on the job.

Wishing you a quick connect to Endocrinologist and exploration.

JigFettler
JigFettlerVolunteer

Hi onu!

Do you have any details on the 15 min almost bloodless surgery. A friend, non CLL, has hyperPTH, UK. And is looking at surgery.

Pls email privately if you wish.

Jig Fettler

Thank you

onu1tadi2
onu1tadi2 in reply to JigFettler

I just saw an endorsement endocrinologist who is scheduling me for tests. She said the operation is available in Toronto at Toronto Western hospital and others. Seemed to indicate because I have strong bones will wait to let bones deteriorate some before treatment. I do not like that.

JigFettler
JigFettlerVolunteer in reply to onu1tadi2

Hmmmm. Tricky. My friend has had her PTH ok. 2nd time. Into scar tissue. Found a tumour... tumour as in a lump, not as in cancer...!

She's doing well.

Keep an eye on yr bones. My friend was told she needed he operation because she was peeing her bones out... 😲

Not in Toronto. Plenty of info on google for USA My Toronto GP avoids topic but i have appt with endocrinologist. Do not know if she will avoid idea too. Maybe government being too stingy with budget.

Lola69
Lola69 in reply to onu1tadi2

We have the same problem in Montreal!

Have u sought a 2nd opinion ?

Not that easy to do. Before I went for CLL treatment I did see a top level clinical researcher, but doctors resent it. The GP I have, put things in my record that were simply not true. And it made the second opinion guy at first seem a bit hostile. Once he spoke to me and asked me how much I knew, etc., he became very friendly giving me details and diagrams of what happens with antibodies etc. But with the parathyroidism, the GP told me she would have to spend two weeks researching for a specialist of my choice (being a bit sarcastic) even though I gave her names and phone numbers, because I was not immediately happy with her choice. The CLL specialist last year also told me that if I went to another specialist they would agree with her. I think some of this discouragement has to do with the hospital budgeting and of course supporting their colleagues. Also it takes a year to see some endocrinologists. The upcoming appointment I have required only a 5 month wait.. Our system is much kinder to the affluent who can afford private doctors and treatments of their choice -- or a trip to US. Sorry I am a bit negative. My Obin treatment with small dose of Chemo worked very well--i had no symptoms from it, although I was at stage 4. -- and remission by third month. A nurse of 25 years in Oncology really made all the difference.

I’ve been diagnosed as well. Blood calcium high normal for years, once going above. Endocrinologist ran parathyroid level which was also elevated. Had scan which suggested small lesion on 1 gland but was deemed inconclusive. Values remain high but are again within normal. As others have been told, I’ve been told to wait until I have further symptoms, which seems stupid. But I understand the surgery isn’t necessarily that easy. The glands are very small. I know of people in whom it had to be repeated. There’s also the matter of insurance approval.

onu1tadi2
onu1tadi2 in reply to Barbshow

Lots of US doctors say wait and see wrong is approach. Parathyroid growths do not get bigger. Nothing changes except they cause deterioration of bones. Why wait until it gets bad? You cannot recover the bone calcium once or is gone can you? They all emphasize getting an experienced surgeon who has done hundreds of parathyroid operations. Stats show they have higher success. Poor surgeon can botch voice glands.

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