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New member, still not sure if I have hyperparathyroidism - what do you think?

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New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Wed Sep 09, 2015 11:25 pm

Hi, I read about hyperparathyroidism a few months ago and it seemed to fit various symptoms I've had for a long time. I've had some blood tests but unfortunately it's taking quite a long time to get the results. Let me know what you think... By the way reading through this forum has been very useful, thanks for posting so much useful information!

I'm a late 30s male. I've just moved to Newcastle in the UK from Reading. My main symptoms are:

very low libido and impotence - which I've had all my adult life,
tiredness and feeling run down - I guess I've also always had this but it seems to be getting worse in the last couple of years
recurring painful stomach cramps - these last for 4-12 hours and I've had them for about 15 years. They appear at worst monthly.

I've had lots of tests from doctors on these over the years but not found any causes, although lots of things have been ruled out (e.g. anaemia, low testosterone, thyroid problems). I'd recently been referred to an endocrinologist by my GP so I asked for parathyroid related tests as well - PTH, vitamin D, calcium. However they only gave me the PTH result which was 5.3 - within the normal range I think. I'm trying to get the other results through a subject access request at the moment. Hopefully I should have them within a month or so. I was thinking I'd wait to get these before going to see my new GP.

The main reason I suspect hyperparathyroidism is that I've recently tried vitamin D supplements and (separately) a low calcium diet. (I only did the low calcium diet for a few days as I started getting worrying muscle pains in places where I'd recently had sports injuries.) Both made me feel amazing for a couple of days, and relieved the symptoms above plus lots of other niggling problems, but then I felt especially worn out and rubbish for a couple of weeks afterwards.  I've tried a lot of supplements over the years and these are the first things to have any major effect (although I found magnesium supplements help with tiredness sometimes).

On the other hand the reason I have doubts - apart from the fact my PTH result seemed normal - is that I've read that symptoms tend to get worse. Is it reasonable that I could have had it for 20+ years?

Thanks for any replies!

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Hadleigh on Wed Sep 09, 2015 11:56 pm

Hi dennisp and welcome,

Without blood results its a bit difficult to say what might be going on but my first thought is thyroid rather than parathyroid, we can help with both so no worries there. If you can get your past results including thyroid it would hopefully point us in the right direction.
Unfortunately doctors are quite keen on the word "normal" when talking about blood results, all that means is the numbers fall within the range, it doesn't mean the numbers are right for the patient. So although your past tests came back "normal" they may not have been right for you.
The symptoms for both parathyroid and thyroid are very similar so it can be difficult to tell which is causing problems and we are finding many people who suffer with both.
Once you get your results post them on here, hopefully they will give us some clues and we can go from there.
Take care
Nelly
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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Thu Sep 10, 2015 6:22 pm

Thanks for the reply! I'll post my results all together when I have them, hopefully in a few weeks...

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Tigerlily on Fri Sep 18, 2015 7:05 pm

Hi dennisp

How are things going with you?  Any blood test results available yet?

Even though your PTH seems within the normal range at 5.3, if the serum calcium from the same blood draw is over 2.5, say, then the PTH would be inappropriately unsupressed for that calcium level and this would indicate a PTH issue.

I can say from experience that it is perfectly possible to have had a PTH disorder for 10-20 years that is only just coming to the surface, so to speak, and the feeling of being generally "run down" (although applicable in a lot of other health problems) is quite specific for a PTH issue.

Whilst waiting for your latest results, have a look at all the information on www.parathyroid.com as I think it might answer a lot of your questions.

Keep us posted on your test results - Nelly and Edwin will be able to help if it turns out to be thyroid related, so let us know whatever the results are.

Best of Wishes, Tigerlily.

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Fri Sep 18, 2015 8:09 pm

Hi Tigerlily, thanks for the message! My test results have just arrived today actually. They seem to me like evidence against PTH problems, but I'd be interested in your opinions.

Old results
===========

2011

Free TSH 1.30 mU/L
Free T4 13.9 pmol/L

March 2015

TSH 2.41 mu/L

New results (July 2015)
===========

Calcium 2.29 mmol/L
Adjusted calcium 2.17 mmol/L
Phosphate 0.78 mmol/L (this is the only one outside the normal ranges on the printouts - it's just below)
Alkaline phosphatase 65 IU/L
Vitamin D 73 nmol/L
TSH 1.76 mU/L
FSH 3.1 U/L
PTH 5.3 pmol/L

(There's a lot more but I've just posted the ones that seem relevant to thyroid and parathyroid problems.)

So if this is conclusive evidence against parathyroid problems I'm not sure what to do next. If anyone does have any other ideas please let me know. I do seem to have strong reactions to calcium and vitamin D but don't know of any other conditions that would involve this... I'll make an appointment with my GP anyway and see what they think.

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Admin on Fri Sep 18, 2015 11:11 pm

Hi Dennis

You may be experiencing some hypothyroid symptoms, as a TSH above 1 and a relatively low FT4 (ideally should be in the upper half of the reference range) would suggest that you may benefit from hormone replacement.
In case you are wondering, the TSH reference range is a joke and many patients are mis-diagnosed, or under-medicated because of incorrect assumptions about the meaning of the TSH result.

Have a look here for further info http://hyperparathyroid.forumotion.co.uk/f7-useful-website-links

As your TSH is within the reference range, you doc may not agree to testing Free T3 (FT3), despite the fact that T3 is the active (and most important) thyroid hormone. However, it is worth asking, as FT3 is a vital piece of the jigsaw puzzle.

When posting blood results, it is helpful if you can include the ranges, as they vary with different Labs.

Edwin
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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Sat Sep 19, 2015 11:30 am

That's very helpful thanks Edwin. I never really thought about thyroid problems as a cause once I'd had some negative tests on it. I'll suggest doing more tests to my GP, and do some background reading on it.

Here are my test results again with the ranges. (Also I looked into the low phosphate level and this might just be because I'm vegetarian.)

2011

Free TSH 1.30 mU/L (0.02-6.00)
Free T4 13.9 pmol/L (9.5-20.0)

March 2015

Serum TSH 2.41 mu/L (0.27-4.2)

July 2015

Calcium 2.29 mmol/L (no range give)
Adjusted calcium 2.17 mmol/L (2.10-2.55)
Phosphate 0.78 mmol/L (0.8-1.5)
Alkaline phosphatase 65 IU/L (30-130)
25 OH Vitamin D 73 nmol/L (50-140)
Free T4 16.3 pmol/L (12-22)  (left this one out before!)
TSH 1.76 mU/L (0.27-4.2)
FSH 3.1 U/L (1.5-12.4)
PTH 5.3 pmol/L (1.6-6.9)

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Little Audrey on Sat Sep 19, 2015 2:47 pm

Hi Dennis, 

Glad to have you join us all here.    Sorry you're not feeling well, but hopefully we can help in some way.   

Looking at your labs, I don't think hyperparathyroidism is your problem.   

I noticed that you said you are vegetarian.    I also am vegetarian.    I am wondering if possibly your problem is an iron deficiency.     This is very common among us vegetarians.      I diagnosed myself with an iron deficiency about 7 months ago.   My doctors didn't think that was at all probable.     I did some research, took a list of tests to my PA, and asked her to order them for me.     The results revealed a very low ferritin (iron storage) level of 11.   Normal is 11-307.    I learned through my research that an optimal ferritin level for a woman is 70-90.     I KNEW I had a deficiency, but none of my doctors agreed.     I made an appointment with a hematologist.     He diagnosed it immediately!      I have been taking an iron supplement now for 6 months.    My ferritin has risen from 11 to 29.   Still a VERY long way to go, but it is improving.    I just had an appointment with this doctor 2 days ago, which I will post about shortly.   He ordered me to double my dosage for a week and then triple it. 

I do think it would be worth your while to ask your doctor to run a full iron panel, including serum iron, ferritin, TIBC (total iron binding capacity), transferrin, and transferrin % saturation.

The reason so many vegetarians are iron deficient is because heme iron is much easier for our bodies to absorb, and heme iron comes primarily from meat.   Non-heme iron is not easily absorbed, and it is found primarily in plants.

If I were you, I'd try to get your doctors to order the full iron panel.     

Audrey

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Sat Sep 19, 2015 3:50 pm

Hi Audrey, that's something interesting to pursue. My previous GP wanted to check anaemia so I've got results for haemoglobin 162g/L (125-180) and haematocrit 0.495 (0.41-0.51). I didn't realise there were other tests for iron! I did have some of these symptoms before becoming vegetarian, but it's totally worth checking. I'll ask my GP about this as well. Thanks for giving me some new ideas!

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Little Audrey on Sat Sep 19, 2015 4:20 pm

Dennis, when I was diagnosed with the deficiency, my serum iron, hemoglobin, hematocrit, and red cells were all within the normal range.    I started suspecting an iron problem when I noticed my RDW was high.  RDW is red cell distribution width. I started researching and found that this could possibly indicate anemia.   It can also indicate a B12 deficiency.    So I learned which tests I needed to rule out the B12 deficiency (methymalonic acid and homocysteine), and I requested those tests were run as well.     They were, and it appeared my B12 was not the problem.

Since my hemoglobin and red cell count were both normal, I knew I wasn't anemic, but I wondered if I had a deficiency.    I wanted to know what my ferritin level was, because if it was low, that would indicate a deficiency.      So even though I do not have full-blown anemia, I do have an iron deficiency, because my iron storage is too low.

My hematologist (spelling is different since I'm in the US Smile), said he doesn't think iron deficiency can cause any symptoms.   He thinks for a person to have symptoms, they need to have actual anemia, but I think he's wrong.     If you research this subject, you will see why I feel this way.

I do hope you at least get your ferritin checked, but the full panel would be the best.

Audrey

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Sun Sep 20, 2015 11:41 am

Hi Audrey, I'm happy to hear you were able to figure out your deficiency. Unfortunately my self-diagnoses usually well off the mark! I read some more about various types of anaemia and iron deficiency and I do have a lot of the symptoms. (And there's even some controversial opinions that calcium can interfere with iron uptake.) So I think it's well worth me asking my GP about further tests. I'll let you know how I get on...

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Little Audrey on Sun Sep 20, 2015 12:21 pm

Well, it sounds like you're doing quite a bit of research yourself, Dennis.   That's great!   I have learned so much by doing so.    I'd hate to think where I'd be if I didn't!    Keep up the good work!  

That is interesting about the iron and calcium.    I wasn't aware of that.

Yes, I think you should get your iron checked.   If there is a problem, it should be easily fixed, and you would probably feel a lot better.

I have something to post regarding my iron supplements.    I will do that later on today.   

Good luck!

Audrey

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Wed Nov 04, 2015 9:47 pm

Hi, I hope everyone here has been doing ok lately!

I had some more test results and wondered what your opinion is. These are PTH 7.2pmol/L (ref range 1.6-6.9), ionised calcium 1.22 mmol/L (ref range 1.12-1.23). I got these done privately as I didn't think the NHS would pay for an ionised calcium test if my previous results were normal. I wanted to try the test as I read it's more accurate than serum calcium, and I'm still suspicious that calcium is to blame for my symptoms because they seem to come and go depending on how much calcium is in my diet.

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Little Audrey on Thu Nov 05, 2015 2:31 am

Hi Dennis,

I haven't been here for a little while.   Thought I'd better drop in and see what's going on with everyone.   I have a new issue I'm working on now, and I will post about that tomorrow.

Do you by chance have a serum calcium level with this set of labs?   If you could post a serum calcium, I could better help diagnose this.

Audrey

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Thu Nov 05, 2015 9:53 pm

Not this time - the two tests I got seemed expensive enough!

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Little Audrey on Thu Nov 05, 2015 11:10 pm

I would have assumed they would have tested your serum calcium too.   That's a bit odd, I think, that they didn't.  Or maybe they do that more often than I know of.   Do you have any other PTHs with a serum calcium level?

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Tigerlily on Fri Nov 06, 2015 12:01 pm

Hi Dennis
Despite a few things I've been told recently by so-called PTH experts, I still think that a high-in-the-range calcium (whether serum or ionised) paired with a top/above-the-range PTH is suspicious for a parathyroid disorder.
If calcium is high, then PTH should be low, in my view. This was also Simon's belief on the former forum.

I am not an expert, but I had high-in-the-range serum calcium paired with high-in-the-range PTH levels (sometimes above the top of the range - it peaked at 12.77) for two years, before I consulted an endocrine surgeon who could read the biochemistry and offered me surgery. I had 3 enlarged and hyperplastic PTH glands removed in Dec 14 and felt enormously better for it.

Along the way towards a diagnosis, I consulted Dr Miles Levy in Leicester who recommended to me the endo surgeon Mr Fausto Palazzo. I consulted him once privately at the Princess Grace Hospital for a diagnosis and then he kindly referred me across to his NHS clinic at the Hammersmith for further tests and surgery.

If you tell us where you are located, other members might be able to recommend useful endo's or surgeons in your area.

My experience at the PTH Clinic at my local hospital was not good. I was told, in so many words and I recorded the consultation, that the consultant didn't care if the PTH level was 7, 9 or 15, as long as the calcium was in the normal range. And I was offered one single blood test of calcium per year to keep track of the biochemistry! Here is someone who doesn't understand the relationship of serum calcium to PTH, in my view, and I shudder to think how many of their PTH patients are suffering because of this.

It took me two years to get a diagnosis and surgery - from my GP's first request to that hospital for an US and sestamibi scan which was ignored, to my consulting Dr Miles Levy, and finally seeing Mr Palazzo for a firm diagnosis and surgery.

During that two years, I have developed a variety of bone cysts, osteophytes, and other bone lumps and bumps due to irregular calcium deposition. I don't like to talk about pain usually, but these have been very painful - in fact I have been a complete right pain for many months now! I saw a different GP at the surgery this week who agreed that the PTH disorder was to blame and it was not RA or osteo-arthritis or general wear-and-tear. As I was at the end of my tether with the discomfort, I accepted his offer of a nerve block (Gabapentin) and I have spent two really happy days since taking it being almost pain-free. I'm not one for taking any drugs if it's not absolutely necessary, but Im making an exception for this one. The relief is amazing. I still know when a bone or joint is playing up, but I don't actually feel the pain. 

The GP's explanation of how Gabapentin works was interesting too and based on the pain gate theory. Apparently my pain gate has been open for too long, and a rest of from feeling the pain is required. I'll post more on this (and the side effects!) when I have researched it further. But he promised I would feel a new woman after one month on it, and would then be able to discontinue it.

Sorry to highjack your thread, Dennis, with an update of my own. But my advice to you would be to go and see an endo or surgeon recommended by forum members who can read your biochemistry, which in my own view (together with your symptoms) is indicative of a parathyroid disorder. Needless to say, I would wholeheartedly recommend the two I consulted myself.

Keep us posted on your progress - Best of Wishes, Tigerlily.

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Tigerlily on Fri Nov 06, 2015 12:16 pm

Hi again, Dennis
Simon's old forum list of PTH surgeons records these in Newcastle at the Freeman Hospital:

Mr NAG Jones (Consultant Vascular and Thyroid Surgeon), Mr Richard D Bliss and Prof TWJ Lennard.
Mr Jones Sec 0191 213 7148.

I cannot recommend them personally (and neither can this forum), but as they are in your area it might be worth asking for their advice.

See www.newcastle-hospitals.org.uk?services/surgical_specialist_endocrine-and-thyroid-surgery_staff-profiles.aspx (or this might be an old link and not work).

I do have personal experience of another Professor at the Newcastle Freeman Hospital and am having excellent service from him myself in respect of another matter (on which I will post when it has moved further forward).

Good Luck!      Tigerlily.

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Little Audrey on Fri Nov 06, 2015 12:35 pm

Well, I'm sorry, Dennis, I don't know why I didn't realize this before, but when I read ionized calcium in your post, for some reason I was thinking corrected calcium, and we don't use corrected calcium here in the US to diagnose HPT.    That is why I was asking you for a serum calcium level.    Ionized calcium is a whole other story!     Yes, Tigerlily is absolutely right in saying that if serum OR ionized calcium is high/normal, and the PTH is high or high/normal as well, HPT is very likely.   I too had many calcium levels within the normal range, and sometimes my PTH levels were within the normal range at those times, but it was ALWAYS inappropriately high for the calcium levels.   It took me 3-1/2 years to convince my doctors I had the disease.    Even Dr. Norman himself dismissed me the first time I contacted him.   I knew they were all wrong and had to continue fighting for my diagnosis.    I eventually had 2 adenomas removed.   

I have learned through experience that endos are useless, as are most other doctors when it comes to diagnosing HPT.   You would be better off contacting a surgeon.    Hopefully, you won't have to wait much longer for your diagnosis!

Again, I am sorry for not picking up on this earlier.     The old brain just was not functioning properly, I guess.  

Audrey

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by dennisp on Fri Nov 06, 2015 9:49 pm

Thank you both for the replies, this is really helpful! I probably wouldn't have the slightest idea about what might be wrong with me without people sharing their experiences on the internet. I'll let you know how I get on and who I see, though I imagine it will take a while. Fortunately my symptoms aren't too bad at the moment so long as I keep watching my diet very closely.

Don't worry about hijacking the thread Tigerlily, it's very interesting to keep up with how other people are doing. I can't imagine being in pain for months on end - the odd day occasionally is horrible enough! - and I'm glad you've got some relief now.

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

Post by Tigerlily on Sat Nov 07, 2015 4:31 pm

Cheers, Dennis - I'm flying at the moment on this Gabapentin!! Sure hope there are not too many nasty side effects.

In your shoes, I would ask my GP to refer me to someone at the Freeman Hospital who has an interest in parathyroid issues. Have a look to see if the consultants' profiles are on the Freeman Hospital's website.

If you don't have any luck locally, there are other consultants in Sheffield and Liverpool on Simon's list.

Keep us posted on your progress - Best of Wishes, Tigerlily.

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Re: New member, still not sure if I have hyperparathyroidism - what do you think?

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