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Hi from newbie and wow

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Hi from newbie and wow

Post by kevsky on Fri Mar 17, 2017 10:46 pm

First topic message reminder :

Hi all,
 I may be a new member of the "club" in all ways.
Started a few weeks ago when my bloods where checked, i'm afraid I am not yet able to
use all the correct terminology so please bear with me.
After constantly seeing my Dr's for various aches pains Hyperparathyroidism was mentioned.
I have started the ball rolling by seeing a Endo privately.
I have today had a ultra sound but nothing showing.
I now have to see the Endo to see whats next but in the meantime
I would be grateful on opinions of my Blood results as below

07/12/2016      PTH 120 ng/L
" "                vit D 27.8
     
then checked again on
02/03/2017    vit D 27.3
                   White cell count  10.6
                   Calcium 2.71
The initial blood tests in December where not picked up on by my GP!
Only when going at the end of February to moan again about how I felt did the GP ask
why I had not seen anyone about the first results! so I was then sent for the second lot of bloods dated
02/03/2017.
Due to delays and as I pay to a scheme that covers initial consultation I saw an Endo privately 
More to this than I have typing power to cover but my GP practice in turmoil with GPs leaving
and All staff also!!
hope this makes sense and if anyone has an opinion on my blood results so far
Kev

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Re: Hi from newbie and wow

Post by Selby on Sat Dec 09, 2017 3:47 pm

Hi Tigerlily and Edwin,

Well, well, well! Guess what I got in the post this morning...

I received the blood result from Nottm. from my last visit. I wasn't aware of what had been requested but it was a thyroid function test in response to my complaint of severe sweats.

It's very brief, simply saying that the result was 'nicely in the normal range, the TSH level being 0.8 milliunits per litre, and therefore the thyroid can't be blamed for my 'night sweats'?'. (I didn't say 'night' sweats)

Until I was lured into PTH problems, I'd read much about the thyroid, and was convinced that all of my symptoms matched those for thyroid dysfunction - even down to having had Carpal tunnel syndrome.

It's tempting to consider searching for a source of T3 to experiment with - except that I don't know how to evaluate or control the results - or even know if I want to take that responsibility!

Should a patient have to do such a thing? XX

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Re: Hi from newbie and wow

Post by Tigerlily on Sun Dec 10, 2017 1:36 pm

Good luck, Selby!

You can always obtain copies of test results/imaging reports etc via the Medical Records Department where they were done. I do this routinely now for ultrasounds, MRI's etc so at least I know what they should be talking about!

Keep us posted - Tigerlily xxx.

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Re: Hi from newbie and wow

Post by Tigerlily on Sun Dec 10, 2017 1:41 pm

Our posts have crossed above, Selby.

Looks as if it is not your thyroid that is to blame.

I would look closely at your renal issues and try and get a result for them, as you are in some discomfort with your feet, and follow Mr Chadwick's recommendations and testing for PHPT. If it is primary HPT, it wont go away - and the carpal tunnel goes with the PHPT symptomatology as well.

Let us know how you get on - Tigerlily xxx.

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Re: Hi from newbie and wow

Post by Admin on Mon Dec 11, 2017 4:37 pm

Fluid retention in one foot more than the other is normal for me over the many years of my reducing kidney function.

With CKD, fluid retention carries risks.  Too much retained fluid poses risks to breathing and heart as the excess fluid can put pressure on the lungs and heart (from personal experience).
Also, blood pressure will normally be increased (fluid in the bloodstream effectively increases the blood volume).

Limiting fluid intake is very helpful for the above reasons, in my opinion.  It eventually enabled me to stop taking medication for high blood pressure.

If you can limit your fluid intake to something less than your outflow, you should gradually reduce the swelling.

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Re: Hi from newbie and wow

Post by Admin on Mon Dec 11, 2017 5:01 pm

@Selby wrote:
It's very brief, simply saying that the result was 'nicely in the normal range, the TSH level being 0.8 milliunits per litre, and therefore the thyroid can't be blamed for my 'night sweats'?'. (I didn't say 'night' sweats)

Until I was lured into PTH problems, I'd read much about the thyroid, and was convinced that all of my symptoms matched those for thyroid dysfunction - even down to having had Carpal tunnel syndrome.

It's tempting to consider searching for a source of T3 to experiment with - except that I don't know how to evaluate or control the results - or even know if I want to take that responsibility!

Should a patient have to do such a thing? XX

There is no such thing as 'normal' with thyroid blood tests (and most others).

'Normal' is what is usually shown on the lab report, but this is referring to whether your result falls within the reference range for that test. on that particular blood testing machine  So, it is a statistical 'in-range normal'.

This is something that I learned with my years of reading while trying to find out why I had hypothyroid symptoms with 'normal' results.

No one knows what levels are 'normal' for you, me or anyone unless you had your TSH, FT4 and FT3 tested way before having any of the symptoms.

Sadly, what TSH actually indicates is quite different to what doctors have been taught and it is one of the main reasons why so many people have hypothyroid symptoms with 'normal TSH and even 'normal' Free T4 levels, as they either fail to be diagnosed or fail to be prescribed appropriate doses of replacement thyroid hormone.

Bouts of feeling hot is one symptom of Hyperthyroidism.  You are more likely to feel cold with Hypothyroidism.
Do you have your Free T4 and Free T3 levels from the same blood test as the TSH?
These will give you are more reliable indication of a thyroid hormone issue.

When you post blood results for our comments, please include the reference ranges along with the results.

You mentioned considering taking T3.  Are you currently taking any thyroid replacement hormone?

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Re: Hi from newbie and wow

Post by Selby on Mon Dec 11, 2017 8:42 pm

Hi folks,

Unfortunately Edwin I wasn't supplied with a copy of the blood result - just the brief letter from the consultant, reporting the result precisely as I quoted, therefore I suspect he only requested a TSH test....what do you think? Do you suggest that I request a copy of the result from the hospital?

My concern is how to proceed from here Surely my experienced consultant  endo. should be fully conversant with the thyroid - although of course the parathyroid is said to be nothing to do with the thyroid...so where do I turn? How do I drive the situation further short of discovering another, specialising in the workings of the thyroid - and who's prepared to try treating with T3!

I'm reluctant to pressure the GP or express my dissatisfaction with the way things are developing, and possibly create bad feeling but neither am I happy in this trap!

Through joining Health Unlocked 3 years or so ago after being diagnosed with Fybro, I came to identify much more with it's other disorder, my symptoms were more in tune. I began to research, making thyroid dysfunction matches frequently, so I researched and read articles and books by Drs. who were mentioned frequently as those who'd helped and happily supported their patients - mainly in the 50's and 60's etc.

Then, of course, I became aware that those wonderful people were of the old school, and largely now retired, and discovered the 'political' situation that has arisen in recent times, creating the blockage - largely a dishonest, unsolvable one while-ever the Phama's are able to orchestrate costs.

No Edwin, I'm not taking T3 or any thyroid replacement hormone - I worry about embarking into self-treating without expert support - although I'm well aware that thyroid patients have themselves become expert out of need! The situation is disgraceful. I'd be grateful for any advice....and am not against experimenting with help.

Surely there must be doctors scattered around the country to whom we can appeal for REAL help for REAL problems not fully understood and treatable by many others....

Meanwhile, I'll concentrate on discussing on 22nd Dec. with my GP, a referral for the kidney dysfunction which seems to be evident - and another Vit.D test.

Useful to know Tigerlily, that I'm entitled to request blood test results from the appropriate hospital Medical Records department, I didn't know that - and it does seem as though it's wise to be armed with the evidence too.
I'll have a go at getting some results and if so pass them on to you. Is it as simple as making a phone call?

I hadn't thought about reducing fluid imput to help the old feet - but that too makes perfect sense! I suppose it would be useful to measure the output - in order to know how much input is too much. Trouble is that I sip water to combat my permanently dry mouth these days, in addition to the four mugs of tea that I drink each day, and a couple of times a week - a glass of wine or a small beer - while I'm prepping our evening meal...does that sound excessive to you two?

Hope I haven't sent you to sleep with all this tedious info today - I'm happy to share!

Love to you both.

From Selby. X

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Re: Hi from newbie and wow

Post by Tigerlily on Tue Dec 12, 2017 12:21 pm

Hi Selby - yes, call Medical Records and ask them what their procedure is for obtaining copies of tests/imaging etc. It costs about £10 at my local hospital and they will put imaging on CD as well.

In your position I would wish to understand why the PTH is so high. Ask your GP on 22 Dec for another test of Calcium, PTH, and Vitamin D, so you can get a run of these tests and put them on a simple graph. As they say on parathyroid.com - you need to be able to see the pattern and not just the fluctuations on any one day.

There is such a thing as normocalcemic primary hyperparathyroidism, where the calcium is not overly high but paired with an inappropriately unsupressed PTH level. I would want to know, in your position, if it is this that is causing the high PTH, or possible kidney problems. Read up on secondary HPT on parathyroid.com. There is a lot of useful information on that site.

At the moment, you are an enigma!

Tigerlily xxx

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Re: Hi from newbie and wow

Post by Admin on Tue Dec 12, 2017 3:31 pm

Never tedious when discussing my pet subjects :-)

Requesting a printout of your blood results is something that I recommend, both at hospital and at your GP surgery.
They cannot refuse, as we are all entitled to access our medical records.
Sadly, some make this more difficult than others.

At hospital, when you are with a consultant or being discharged, you should get a positive response to a results printout request and it can be done while you wait, if they are feeling cooperative.

It may be contentious, but i have the impression that Chronic Fatigue Syndrome and Fibromyalgia labels were invented in the late 1970s following the adoption of TSH as the holy grail of hypothyroidism in the mid-1970s.

So many patients were complaining of hypo symptoms and the guidelines stated that it could not be hypothyroidism if the TSH was 'normal'.  So the conveniently vague Chronic Fatigue Syndrome and Fibromyalgia labels were needed to explain the ongoing hypo symptoms and it seems that you have been caught-up in this misdiagnosis tragedy that affects so many people.

Most endocrinologists know a lot about diabetes and very little about hypothyroidism.
I took the trouble to select an endo that specialised in thyroid only, but she was in the same 'UK guidelines rule' club as most endos and GPs.
Very disappointing, but I managed to get a suitably weasel-worded discharge letter that was sufficiently ambiguous that enabled my GP to continue prescribing my T4 + T3 combination, based-on me accepting responsibility for the so-called risks of taking T3. (Endo did privately admit to not wanting to risk her career by deviating from the guidelines, as did my GP.)
Fortunately for me, the discharge letter combined with my GP (a male) accepting that I am obviously better on T4 + T3 was sufficient for me to continue with T4 + T3.
However, I also have the distinct advantage of being male with a disease that predominantly affects females (sorry to mention this).

I can't comment on your fluid intake levels, but I suggest that you try dropping one cuppa or using smaller mugs to see if this makes a difference.
Measuring output is a little extreme at this stage (a Nephrologist will probably request the occasional 24-hour collection), but making an incremental reduction and seeing if it has any impact over a couple of weeks is the way that I would approach this.
it's also worth thinking about other, less obvious, sources of fluid, such as milk on cereal (I use just enough to soak my Shreddies).

There's a lot of misleading and confusing information on Thyroid forums, so I suggest that you develop your own 'filter' to decide which posts are useful.

The Thyroid UK and the Thyroid Patients Advocacy websites have a lot of very useful reference information.  The Thyroid UK forum on Healthunlocked is more of a challenge, with the exception of useful links to medical papers, articles, etc.  The moderation of this forum is very poor, in my opinion.  The Thyroid Patients Advocacy forum is better, as all posts are moderated before appearing.

Thyroid Patient Advocacy website and forum

Thyroid UK forum on Healthunlocked



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Re: Hi from newbie and wow

Post by Selby on Sat Dec 16, 2017 6:09 pm

Hi both - job done, I've sent for the records from Nottm., I just hope the application form arrives promptly so that I can get the info back in time for the 22nd, and then I can ask my GP the questions - and hopefully move forward. I've always claimed copies of bloods done here, so have a complete set, and in future I'll claim Nottm. blood results at source too! What about the scans, if available, would you recommend having a copy of those for the record? See - I'm learning!

Interesting...I too rejected the term Fibromyalgia - a daft 'made-up' word probably fashioned in the US!
HealthUnlocked - while I still scan through the Thyroid UK forum for useful bits sometimes, offers little that relates to me - side-effects of Fibro. that some people experience sound quite dramatic and bear little relation to mine. You make a good point about the '70's link Edwin, which chimes with mine - an all-round fresh term for an emerging, but as yet unresolved collection of 'isms'!

I think I'm coming to realise that instead of leaving my situation drifting in the hands of the 'professionals'. I've got to be a grown-up and either take control - and invest in expensive private help no doubt while doing so, or spend my time doing what I enjoy - being 'creative', treating the headaches and the sweats - and just grow old(er)! I'm 82... so it's a bit of a dilemma.

I'll certainly seek out a Nephrologist and sort out the 'kiddley' business which will determine whether I'm normocalcemic or have secondary PTH, (Mr. Chadwick made those observations), and perhaps things will become simpler as a result of that.
I just don't want to waste lovely valuable time or become immersed in 'illness'....it's not my thing.

I might have in my favour my new buddies Tigerlily and Edwin - who seems to have incurred similar symptoms to me....am I right in saying so Edwin? And therefore could offer me valuable encouragement if I contemplate the possibility of self-treatment - if it's available in my case.

I'll catch up on parathyroid.com and also Thyroid Patient Advocacy - which is new to me - and thank you both for all of your excellent advice - I've learned more from you both than anywhere else...or have I said that before...?

Oh! By the way do either of you have trouble with yer eyes? I had mine tested and new specs in the summer - and already they are almost useless - bah! XX

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Re: Hi from newbie and wow

Post by Admin on Sun Dec 17, 2017 12:54 am

Just a word of caution. Please do not assume that private Endos will be any better than NHS Endos when it comes to the diagnosis and treatment of Hypothyroidism.

I learned a long time ago that I needed to take responsibility for managing my various medical conditions and learning enough to have meaningful conversations with specialists in different disciplines and in different hospitals.  I have found that most specialists have responded well to me playing an active role in my healthcare.  I want to know what is happening, why and what I can do to help, as this enables me to have realistic expectations of what I can and probably cannot do with my body.

Myself and Mrs Admin both have Hypothyroidism and Hyperparathyroidism, but for completely different reasons and with different symptoms, so I am not on my own when it comes to acquiring and sharing knowledge on these and our other collection of medical conditions.

I have been motivated to put a lot of time into acquiring info on Hypothyroidism once it became obvious that the level of education for doctors was extremely poor, thanks mostly to the highly misleading guidelines, and I needed to find a way to take some action on my continuing symptoms to improve my quality of life.
Spotted today, this is, I think, the best paper that I have read for both patients and doctors (both GPs and Endos).
The Diagnosis and Treatment of Hypothyroidism - August 2017 Update

Trouble with eyes.  Er yes.  Both me and Mrs Admin.
New glasses, but not always appropriate.
I my case, my focal points move from day-to-day.  There are particular distances were I sometimes need to wear long distance or reading glasses and sometimes not.
My wife had new glasses recently and hardly ever wears them, preferring her old glasses.
If it makes you feel any better, we are both in our 60s.

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Re: Hi from newbie and wow

Post by Selby on Sun Dec 17, 2017 2:27 pm

Interesting...I reckon my eyes vary between lousy and reasonable too. I'm comforted by that information - although I don't know whether to get a new prescription - or whether the eyes will stabilise.

I do understand about taking responsibility for you health situation when a firm diagnosis is made - but what if there is no evident adenoma - and what treatment can be available if that situation continues? I seem to be between a rock and a hard place. Do T3 and T4 help me?

What is Mrs Admins situation - has she had an op. - and is that then the end of the disorder...(I'm assuming that it's she who has the HPT). The common side effects of thyroid disorder and HPT are so similar that with - in my case - fairly normal Calcium levels and no adenoma - I'm left feeling mildly confused and without resolution after seeing the consultant whom I don't meet again until the spring of next year.

Does that all make me sound whimpish?!

I've filed your links which are full of info on how to treat - but what is the evidence for the diagnosis? Perhaps it's purely within the blood test results, in which case, I'll have to await...

I am a reasonably intelligent person with rocks in my head! Things will evolve I'm sure, so allow me a little license Edwin! Please, please don't give up on a girl, all support is highly valued - and I'll read anything providing I can understand the big words - at the moment - oh and - commiserations to Mrs Admin too.

PS

I can't stop reviewing the mental picture I have of you wringing out you Shreddies each morning....ha ha ha!

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Re: Hi from newbie and wow

Post by Admin on Mon Dec 18, 2017 5:09 pm

I will leave Mrs Admin to continue the HPT discussion on evidence, diagnosis, blood tests, etc.
Hers is primary, whereas mine is secondary (due to CKD).

For Hypothyroidism, Free T4 (FT4) and Free T3 (FT3) should give you a better indication than TSH.
Both are recommended to be in the upper half of their respective reference ranges.
Sadly, 'Evidence' for diagnosis by most GPs and Endos will be a 'high' TSH, so you should not assume that you will get a diagnosis of Hypothyroidism, even if you have low FT4, Low FT3 and several obvious symptoms.
This is the scandal that is the reason for so many people looking for help on the Healthunlocked Thyroid UK and Thyroid Patient Advocacy forums.

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Re: Hi from newbie and wow

Post by Selby on Mon Dec 18, 2017 6:23 pm

Is it possible for me - having being diagnosed Hyperparathyroid - to have similar symptoms, and treatment with T3 & T4, as patients with Hypoparathyroid dysfunction - assuming I chose to self medicate?

Do the thyroid hormones work by restoring the dysfuction - either way - to an acceptable level to maximise wellness....I think that's what I'm still not clear about....!

Yes! I seem to be stuck with the 'minimal proof syndrome'! I've got to work out how to persuade Mr Chadwick otherwise to begin with...!

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Re: Hi from newbie and wow

Post by Admin on Tue Dec 19, 2017 12:01 pm

There are grey areas with both Hyperparathyroidism and Hypothyroidism diagnosis.
Symptoms are different, but there can also be some common symptoms.

My view is that both conditions need to be assessed by a combination of blood results and a number of symptoms, plus any obvious indications from scans in the case of HPT.

It is not unusual for someone to have both conditions, but it not be assumed.

With Hypothyroidism, replacement hormone can and should provide relief for the symptoms, but - and there is always a 'but'. There are different causes of the symptoms of Hypothyroidism (primary, secondary, tertiary, central).  The general default is an assumption that the Thyroid gland is under-performing, but this may not always be the case and, therefore, replacement hormone(s) may not always be what is needed to restore wellness.

More on this later.

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Re: Hi from newbie and wow

Post by Selby on Fri Jan 05, 2018 7:32 pm

Greetings Tigerlily and Edwin,

Just to pass on blood results for Vit D - currently a bit low at 67 nmol/L and

Serum urea level (XMOR) above range at 9.6 mmol/L (2.5 - 7.Cool

Serum creatinine level (XE2q5) above range at 110 umol/L (45.0 - 84.0)

eGFR using creatinine (CKD-EPI) per 1.73 square metres (XacUK) below range at 40mL/min (90.0 - 200.0)

I've made another GP appt. for next week to discuss the GFR further - I think that's what you'd be advising me to do...?

Hope you are all refreshed for the new year!

Shirley X

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Re: Hi from newbie and wow

Post by Tigerlily on Fri Jan 05, 2018 7:51 pm

Hi Shirley - this is more Edwin's department than mine - so I will just wish you a happy new year. Sorry I can't help any further on kidney issues.
Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by Selby on Fri Jan 05, 2018 9:00 pm

Thank you for the moment - I'm sure we'll meet again!!! X

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Re: Hi from newbie and wow

Post by Admin on Sun Jan 07, 2018 2:48 am

Hi Shirley

With these results, I would expect your GP to refer you to a renal clinic for regular observation (including blood pressure, Creatinine, Urea, Potassium, Phosphate, PTH, Calcium) and dietary advice.  Low Vit D comes with reduced renal function and a Nephrologist will probably prescribe Alfacalcidol (a vitamin D analogue).

You may need to be pro-active about this to ensure that you are under the care of renal specialists.

Suggested reading:
Stages of Chronic Kidney Disease


Merry New year.

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Re: Hi from newbie and wow

Post by Selby on Sun Jan 07, 2018 2:14 pm

Thanks - as ever Edwin...will do, (Am exercising muscles for Wed. as we speak)!

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Re: Hi from newbie and wow

Post by Selby on Fri Jan 12, 2018 4:43 pm

Hi Edwin,

Saw my GP on Wed..she judged my eGFR to be 'going down nicely'! I showed her my swollen feet - even underneath so she offered a urine test - creatinine etc. I haven't heard from the surgery - can I learn anything from asking for the result?

I don't know how I can move forward now.

Did I mention that she offered me oestrogen gel to see if it helped with the sweats to add to the HRT I take, which is only potato starch with Progest (can't spell it!) apparently! I don't know if it helps at all - but thought it may add something to the dreadful state of my hair!

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Re: Hi from newbie and wow

Post by Admin on Fri Jan 12, 2018 11:17 pm

Hi Shirley

Er, eGFR going down is never 'nice', as it shows a reducing renal function.

Whether you can learn anything or not depends on what has been tested, but I am not sure that a urine test will be particularly useful.
Creatinine and Urea blood tests are the traditional indicators of renal function.

Maybe it is the time to strongly request a referral to a renal clinic/nephrologist.

I can't offer any comment on Oestrogen and HRT - wrong gender ;-)
However, I do suggest trying to resolve one issue at a time.  I offer this from personal experience of managing multiple medical issues and their related symptoms.

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Re: Hi from newbie and wow

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