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Post by Barb1949 on Sun Mar 01, 2015 2:08 am

Hi, I am Barb,  I have had Myxoedema(Hypothyroidism) for many years and following a complete blood screen a couple of months ago my doctor says I have hyperparathyroidism.  She is unable to say if it is Primary or secondary as the blood results are not conclusive.  However, I am seeing an Endo in Dundee in two weeks time and hopefully he will tell me which it is.  I do not know much about hyperparathyroid and until two weeks ago I had no idea what or where they are. I do know, now, that the fact my Vit D was hovering about floor level and my calcium was wrong (quite low) and I have stage 3 CKD, has something to do with it.  That is about all.  I am now taking 4000iu Vit D daily for 50 days then further bloods.  I don't know if there is any bearing but my B12 is also extremely low and Iron and Ferritin are also sweeping the floor.  I am now also on 420mg Ferrous Fumarate daily.
If anyone can give me any idea what to expect I will be grateful Question. It's one thing after another Rolling Eyes.
Cheers
Barb
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Re: New member

Post by Admin on Sun Mar 01, 2015 11:13 am

Barb, welcome to our Forum.

I too have Hypothyroidism, CKD (4 in my case) and a high PTH.

CKD is associated with High PTH, so it is worth discussing this with your renal consultant. Your renal team should also be doing something about your Ferritin if it is low. You should be getting iron infusions if it is low. Tablets are unlikely to be sufficiently effective.
Also, have you discussed your Vit D with the renal team?
I am taking a Vit D analogue, Alfacalcidol, which bypassed the kidney. With CKD, your kidney is not able to process Vit D, hence the analogue.

For B12, I use this: http://www.amazon.co.uk/BetterYou-Boost-Oral-Spray-25ml/dp/B0072D7GPA/ref=sr_1_6?ie=UTF8&qid=1425208188&sr=8-6&keywords=vitamin+B12

Members will be able to offer advice if you can post your blood results along with their ranges.

Edwin

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Re: New member

Post by Hadleigh on Sun Mar 01, 2015 11:31 am

Hello Barb, welcome to the forum

You certainly have a lot going on but your story is very similar to others here. Do you have your blood results ? It is a bit easier to see what's going on if we can see the numbers.

If your calcium is low and PTH high it points towards secondary, primary would give a high/normal calcium and PTH. Secondary is common in people who have CKD. 

Vitd deficiency is the norm for most of us and normally we wouldn't want to take high doses of vitd as it can drive an already high calcium higher but if your calcium is low it may prove useful and it will be interesting to see if your results normalise after the 50 days.

Your other deficiencies are very common in hypothyroid people and with low B12, iron and ferritin you will not be absorbing your thyroid meds properly, this will give you lots of symptoms which are very similar to parathyroid disease symptoms. What thyroid meds are you on ? and do you know your TSH, T4 and T3 levels ? You will also need to supplement B12 if you are very low.

We have a few members who have both thyroid and PTH disease, including myself and hubby so we are happy to talk about that as well.

Hopefully the endo you are seeing is experienced in parathyroid probs, many are not which delays the diagnosis Rolling Eyes fingers crossed you won't have any problems.

Not sure if the above has helped any, my brain isn't really in gear today Rolling Eyes 

Usually a bit quiet over the weekend but others will be along sometime to add their thoughts.

Take care

Nelly
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Re: New member

Post by Barb1949 on Sun Mar 01, 2015 11:30 pm

Hi,
Edwin, I do not have a renal consultant as yet.  I was hoping I could reverse the stage 3 with dietary changes.  Is this possible?  I am already a member of the Thyroid UK forum, this is where I learned about this forum and have been researching hypothyroid for the past three or four months.
Nelly,  I am on 200 mcg Thyroxine, have been for about ten years, but I am noticing over the last three or four years a lot of my symptoms are returning.  I cannot take any more thyroxine as it makes me quite ill with palpitations, breathlessness etc.  I requested an endo appointment and named the one I wish to see after being recommended by someone on  Thyroid UK.  I would like to try adding some T3 to my levo or even try NDT but my doctor is not allowed to prescribe T3 without the endo prescribing it first.  However, since requesting this appointment I have now got this problem with my parathyroids.  I am told the endo is very good with thyroids and hope he can help with this problem too.  I actually work in the same hospital, in the medical school and  the tutors there tell me he is one of the top people for thyroid and is very willing to listen to his patients.  I am seeing him on 12th March and will keep you informed of events.

Blood Results:

                   Nov              Dec            Jan          Feb
TSH             0.03              0.05                          0.02     (9.8 - 18.Cool
Free Th        21.6             18.2                           20.7     (0.4  -  4.0) 
Free T3          4.2                                                          (3.3  -  6.3)

Sodium                            142           142            143      (133 - 146)
Potassium                         4.8            4.7             4.5     (3.5-5.3)
Urea                                 8.2            7.1             5.4     (2.5-7.Cool
Creatinine                          90             68              62      (44-80)
Est GFR                              57           GT60          GT60

Alt                                     23                                         (5 - 55)
Bilirubins                             4                                          (0 - 21)
Alkaline Phosphate               61            63               56      (30-130)
Albumin                              37            36               35       (35-50)
Iron                                     6                                          (5 - 28)
Transferrin                         3.46                                        (2 - 4)
%sat transferrin                    7                                          (22 - 55)
Ferritin                                10                                          (13-150)
Tot 25 O-H Vit D                   23                                        
B12                                    235                                        (200 - 940)
Serum Folate                        3.9                                      (3.1-17.5

Calcium                                             2.18       2.11       (2.10-2.55)
Calc. Corrected                                   2.22       2.16          "      "
Parathyroid Hormone                          20.4      18.3         (1.5 - 7.6)

PLT                                   292                         266        (150-400)

HGB                                  125            123                     (120-160)

Hope you can tell something from these results. Exclamation

Barb
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Re: New member

Post by Hadleigh on Mon Mar 02, 2015 8:26 am

Hi again

Firstly the ranges you have put  for TSH and T4 are the wrong way round. Your tsh is showing as suppressed and t4 over range so this shows you are over medicated on Levo, your t3 is not to bad (wish mine was that high ! ). 200mcg is a high dose and I would think the endo will want you to reduce it. Your deficiencies in b12, ferritin, iron and b12 will have a big impact on your absorption of the Levo so the endo should treat these, hmm don't hold your breath on that one as most think it unimportant!! 

Surprising you haven't been referred to a renal consultant, shocking really as there are many things you need to be doing to preserve the remaining kidney function. Edwin can fill you in on all that.

Your calcium is not indicating primary PTH disease as its low end but your PTH is high so possibly renal related.

You have a few things going on which need looking into so you may not get any quick answers from the endo, hopefully he/she is able to look at everything Smile

Edwin can help with renal advice but he's in hospital at the mo so may not be on the forum as often as usual, but you do need to be under a renal consutant asap.

Nelly
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Re: New member

Post by Admin on Mon Mar 02, 2015 10:08 am

I think that you should ask for a renal referral.

This is the best way to manage a declining kidney function and, at the same time, sort-out your iron/ferritin, Vit D and maybe explain the high PTH.

They will look at blood pressure management.

They will (should) also provide dietary advice, particularly on salt, potassium and phosphate, which will help to stall or slow-down any reduction in kidney function.

Your high dose of Levothyroxine is likely to be because your low iron is interfering with T4 to T3 conversion.
Get your iron sorted and you will not need such a high dose and, most likely, you will feel better.

I wish that I had your Creatinine level !

Edwin
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Re: New member

Post by Tigerlily on Mon Mar 02, 2015 12:08 pm

Edwin and Nelly give excellent advice, Barb. Be guided by them and please ask for a referral to a renal consultant as soon as possible to sort out these issues.

Good luck with the endo appointment on 12 March, and please do report back on how it goes.

Best of Wishes, Tigerlily.

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Re: New member

Post by Barb1949 on Tue Mar 03, 2015 12:39 am

Hi again,
Hadleigh, these readings for TSH and Free TH are indeed the correct way round.  I know I am not actually converting T4 to T3 properly and this is the main reason I wanted to see an endo.  Most of the other problems have surfaced since I requested this appointment. My T3 is rarely this high but my readings are up and down all over the place for the past few years.  I sm to be most stable on 200 mcg levo.  In the last two years my TSH has actually gone between 0.03 and 57.7, and this with only a 50mcg difference in levo.   I have only discovered this during the past week as I requested, and got, my complete medical records from birth to December 2014.  I already have my blood printouts from November to date.  The endo I am seeing has been recommended to me as being very clued up about thyroids; makes a change from being clued up on diabetes as most are.
Admin,  I have no idea what Creatinine is; but this is also up and down all over the place.
Tigerlily, I didn't think the kidney problem was very important as one of the tutors told me Stage 3 is very early and is likely to be reversed with careful management.  She intimated this would be by diet.  Anyway I will ask for a referral to a renal clinic and see what happens.
Oh my, life is such fun............... Laughing
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Re: New member

Post by Hadleigh on Tue Mar 03, 2015 7:51 am

Well that is a truly bizarre TSH range, never ever seen a range that starts and finishes so high, are they done in pmol and mlUL ?

 Our ranges are TSH 0.30-5.00 T4 12-22 T3 3.10-6.80. So if 9.8 is the bottom of your range your TSH should be around that number, 0.03 would be extremely low but going on the usual ranges it would be low but OK. It is possible the print out is wrong Exclamation

You clearly need to get your thyroid sorted then see where you are with other issues. Hopefully the endo knows his stuff.

Nelly
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Re: New member

Post by Admin on Tue Mar 03, 2015 8:39 am

http://www.webmd.boots.com/a-to-z-guides/creatinine-clearance-tests

Creatinine is the most important kidney function test as it gives an indication how well your kidney is removing waste production from your body.  It is used to produce the eGFR (estimated glomuler filtration rate), which is the number that is mostly used to describe the level of kidney function.

I agree with Nelly that your TSH and Free T4 ranges seem to be reversed and your readings would then make more sense.

A couple of thoughts ......
Are you taking your Levothyroxine at least 30 minutes away from other medication, food and drink (apart from water)?
Are you taking any medication that could be interfering with the absorption of the Levothyroxine?
Are you taking your Levothyroxine in the morning on the day of the blood tests?

Do not be surprised if your Endo is not aware that the above can have an impact on things, or that a good level of iron/ferritin is needed for conversion.  Most Endos are focussed on diabetes and have only limited understanding of the things that can effect thyroid hormone conversion and absorption.

Edwin
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