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Post by amandalinc on Sun Nov 13, 2016 1:25 am

Hi


I have been ill since about 2009 with extreme fatigue and was diagnosed with bowel cancer in 2011 for which I was successfully treated. However the fatigue did not go away and around 2013 I was told it could be M.E/C.F.S, however I have recently come across an article on hyperparathyroidism and the list of symptoms resonate with me - 


Loss of energy & Muscle weakness
Poor concentration & memory loss
Low Vitamin D levels
Anxiety & Depression (Medication taking - Duloxetine & Pregabalin)
Painful bones
Aches & pains (diagnosed as Fibromyalgia)
Difficulty sleeping (Medication taking - Amitriptyline & Quetiapine)
Bloating (diagnosed with Adenomyosis)


I have also suffered with Pancreatitis in 2013 and just recently been having chest pain issues mainly in my sleep with is believed to be caused by sleep apnea but hasn't yet been confirmed (E.C.G & blood tests confirmed no heart attack), plus I get high heart rate at times (nothing excessive but my resting H.R is 70 but it can be 90+ just after standing up for too long or sitting on the floor playing with my son). 


I have seen an Endocrinology Registrar twice but nothing has been picked up. I have my results from Oct 2014 which are as follows:


Ferritin 11
ESR 40
Corrected Calcium 2.19
Liver Function normal
Cholesterol 5.9
Triglycerides 2.79, non HDL 4.7
TSH 1.7 and Free T4 9.8, F.S.H 7.2, L.H 13.8, Oestradiol 485, Vit D 52, thyroid peroxidase antibodies 5.
Previous tests Jan 2014 showed a Free T4 of 10.3, Free T3 of 3.3 and TSH of 2.1 


Non of the above mean much to me but I am presuming that the corrected calcium of 2.19 would indicate that hyperparathyroidism isn't the problem, is this the case? 


Sorry to have waffled on so much. 


T.I.A
Amanda

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Re: New Member

Post by Admin on Sun Nov 13, 2016 4:01 pm

Hello Amanda and welcome to our forum.

For suspected Hyperparathyroidism, you will need your Parathyroid hormone level (PTH) tested.

My (and Nelly's) initial reaction is that you have Hypothyroidism.

It is always useful to provide the ranges with results, as ranges can differ between labs, but your FT4 (free T4) and FT3 (free T3) look to be way too low.
T3 is the active thyroid hormone.
Unfortunately, docs focus on TSH and believe that this is the best indicator for hypothyroidism diagnosis and treatment.
In the real world of patients who have had to take control of their medication, a TSH of more than 1 is typically a good initial indicator of thyroid hormone deficiency.

May people aim to get their FT3 and FT4 in the upper half of their ranges.
Around 20% of the T3 hormone comes from the thyroid hormone, but the rest comes from the conversion of T4.  Things that can inhibit conversion include low iron (or ferritin), which needs to be mid-range.
I do not know your ferritin range, but it looks very low.

By the way, docs reliance on TSH can result in a ME/CFS mis-diagnosis, because they are in denial about it being hypothyroidism due to their belief in the TSH range as being 'normal' (there is no such thing as 'normal', unless you have had your TSH tested before having any symptoms (which almost never happens).

There is a view that ME/CFS were 'invented' as a way to explain hypothyroid symptoms once docs started to use TSH test in preference to diagnosis from symptoms in the mid-1970s.

I recommend that you have a look in our reference section:
http://hyperparathyroid.forumotion.co.uk/t388-useful-website-links

For help with getting a diagnosis and appropriate hormone replacement, I suggest that you have a look here: http://www.tpauk.com/forum/forums/main-forum-for-discussing-all-things-thyroid.16/

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Re: New Member

Post by Hadleigh on Sun Nov 13, 2016 4:32 pm

Hi Amanda

I'm afraid unless your doctor looks at and understands your T4 and T3 levels you won't get any help on the hypothyroid front, they only look at TSH and unless that is out of range you are deemed to be normal, there is no normal as everyone has their own set point within the range and as Edwin says we don't generally know what our set point is.

Your calcium is not ringing any alarm bells but it is possible to have hyperparathyroidism with a normal calcium level, you would need a high pth and a very clued up Endo to make the connection, sadly clued up GP's and Endos are as rare as hen's teeth !

If you haven't had your B12 tested that would a good thing to do, low B12 can cause all sorts of symptoms, you could also try some VitD supplements as low levels can also cause problems, if you can get your parathyroid level tested you can rule in or out hyperparathyroidism, however as your calcium is good your GP may not be willing to do a parathyroid test but worth a try.

Hopefully others will be along to add their thoughts, unfortunately the symptoms of hyperparathyroidism and hypothyroidism are very similar so it's difficult to diagnose either without tests that are clearly abnormal, even then it's usually a long road before a doctor will commit to a definite diagnosis.

Do let us know if you have more questions or results you want opinions on.

Take care

Nelly
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Re: New Member

Post by amandalinc on Sun Nov 13, 2016 8:11 pm

Thanks Edwin & Nelly. I REALLY appreciate your feedback, especially as I have been told this before by a pharmacist friend of mine, but the problem is getting a G.P. & Endocrinologist to have the same opinion as you - how do I make them listen!. I am already on Iron and Vit D supplements from the G.P and have been for years. I have also been having Vit B12 injections every three months at the G.P. which doesn't really seem to have made much difference.

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Re: New Member

Post by Hadleigh on Sun Nov 13, 2016 9:43 pm

What dose of vitd are you on ? your level is still low considering you have been supplementing a long time, I would also check your b12 level if you feel it's not improving. If your Gp won't cooperate with tests then you can get home test kits from Medichecks, many of them are finger prick tests so easy to do, I have done several and results are usually back within a couple of days.

Unfortunately doctors are very good at ignoring the obvious, especially with thyroid issues. Both Edwin and I are hypothyroid so we have first hand experience of the appalling treatment and there is no easy answer, can you see another GP in your practice ? one who is a little more open minded and will do further tests possibly looking at pituitary and adrenal problems, either of these can give low TSH, T4 and T3.

Another possibility is the medication you are taking is affecting your thyroid, depression, anxiety and sleeping problems are all symptoms of thyroid disease but the medications used to treat these can also affect the thyroid.

You are in a difficult situation and I think you are going to struggle to get a doctor to listen, you need to convince your doc that your T4 and T3 are to low and causing the symptoms, every cell in your body needs T3 to function, bit like the fuel in the car, if the tank is empty the engine won't start !

Do keep us posted and we are happy to answer any questions.

Nelly


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Re: New Member

Post by amandalinc on Mon Nov 14, 2016 12:21 am

Nelly, you are so kind. These results are from 2014 which is before I started the Vit D & B12, the last time I had them tested they had normalised. 
Thank you so much for taking time out of your day to get in contact. x

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Re: New Member

Post by Hadleigh on Mon Nov 14, 2016 8:31 am

No problem, happy to help ☺

Do you know what your results are now ? ask your surgery for a print out of them so you have a record and can keep track of everything. You do need to see where you are within the vitd and b12 ranges, if you are just within range your doc will consider it normal which of course it isn't !

However having said all that getting those sorted won't cure your symptoms if as we suspect you have hypothyroidism of some sort, if the Endo you saw isn't helpful ask your GP for a referral to a different one, try and find one who is willing to think outside the box and possibly give you a trial of thyroxine.

Keep fighting, you will get there.

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Re: New Member

Post by amandalinc on Tue Nov 15, 2016 4:25 pm

Hi Nelly 

Can I just ask, can thyroxine be harmful if it is taken when it is not needed?

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Re: New Member

Post by amandalinc on Tue Nov 15, 2016 4:50 pm

I did have a thyroid test done via Medichecks in July this year and the results were higher than before: 

THYROID STIMULATING HORMONE   3.44            mIU/L        0.270 - 4.200

FREE THYROXINE                            13.26          pmol/L    12.000 - 22.000

FREE T3                                          4.18           pmol/L        3.100 -6.80

Does this mean that it is unlikely that it's Hypothyroidism? Sorry to ask so many questions.

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Re: New Member

Post by Hadleigh on Tue Nov 15, 2016 6:11 pm

A lot of people do self medicate, obviously I can't advise doing that. Thyroxine is prescription only med but it is possible to buy NDT (natural dessicated thyroid) or T3 from various sources abroad, not something I have ever done. You can also buy online various thyroid support tablets and some have good reviews but I have no experience of them myself. I think as you are taking several other meds you would have to be very careful about taking any thyroid med without a doctor on side to monitor you.

You results do show your thyroid is struggling, TSH of 3.44 is to high, T4 is much to low, T3 is low but not to bad so you do have some fuel in the tank ! Has your GP seen those results ? If he/she only looks at TSH it should be obvious it is heading in the wrong direction and you could be trialled on a low dose of thyroxine but many doctors won't prescribe until levels are out of range.

Sorry not really very helpful for you, I would keep trying with your GP, ask for a 3 month trial to see if it helps with symptoms. Let us know how you get on and please do ask if you have more questions, we are happy to help.

Nelly

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Re: New Member

Post by amandalinc on Wed Nov 16, 2016 12:56 am

Thanks Nelly, I wasn't thinking about self medicating, just wanting to know incase my G.P turns around and says that it's too dangerous to trial if my results aren't what they would expect of someone with Hypothyroidism. 


Just one other question, I have put on a lot of weight over the past few years and when I lay on my back I feel like I can't breathe properly, is this a symptom? feeling like something is stuck in my throat? as I don't want to bring that up with the G.P if she is just going to turn around and say that it's because I'm over weight. 


As you can probably understand from my attitude about G.P's I have had a lot of negative reactions from doctors in the past and I'm made to feel like I am a hypochondriac, it even took over two years to diagnose the bowel cancer, so I am lucky that it was found really!


Thanks again.

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Re: New Member

Post by Hadleigh on Wed Nov 16, 2016 5:49 pm

Sorry Amanda I started a reply this morning but then my tablet died, again. So, no it's not dangerous to do a trial of meds, you will know if it's improving symptoms or making you feel worse, as long at T3 and T4 don't go over range you would be fine, if you got hyper symptoms then you would know it. Three months is the minimum time you should try them for as Levo can take many months to take effect, usually docs will only give three months as they are convinced that's enough time, and to scared to do longer !

Yep weight gain, breathlessness, throat problems are all very common symptoms along with over 300 others, http://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/ tick off the ones you have and try presenting it to your GP. If she starts on about Levo causing heart problems and osteoporosis if taken when not needed its a load of rubbish, heart and osteo probs are more likely with untreated thyroid than when treated.

Your experience with doctors is pretty normal, you will find most people on this forum had to diagnose themselves as doctors were either not experienced enough or just not interested. I have ongoing issues with undiagnosed problems and total brush off from those that should be sorting me out ! It's particularly difficult for us ladies to get decent treatment as we are seen as neurotic, hypochondriac, anxious, menopausal and all the rest !

Hope that helps a bit, take care

Nelly
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Re: New Member

Post by amandalinc on Thu Nov 17, 2016 12:25 am

Oh Nelly, you are so wonderful! I wish I could take you along to my doctors appointment with me. 

I have an appointment with a G.P that is pretty good at listening but unfortunately she only works part time and I can't get an appointment until mid Dec! 

I'd like to thank you again and I'll try my best not to bother you again.

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Re: New Member

Post by Hadleigh on Thu Nov 17, 2016 10:29 pm

You are welcome, I hope the info proves useful but as I said you may well have to battle on until your levels go out of range, it's very unfair but until doctors open their eyes to the new research and numerous studies very little will change.
It would be a good idea for you to have a look at the thyroid forums, TPAuk as the link above from Edwin and Healthunlocked Thyroiduk forum,  we think the most useful one is TPAuk for info.

Don't ever feel you are bothering us, you aren't, we are happy to chat any time Wink

Take care
Nelly

Ps Amanda don't worry if you see your New Member post has disappeared, it hasn't, we just moved it to the main section so more people will see it, now in the top one titled Hyperparathyroid Diseases,Questions, Advice and Discussion.
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Re: New Member

Post by amandalinc on Mon Dec 19, 2016 7:24 pm

Hi,

I had my appointment with my G.P but she won't offer me a trial of Thyroxine as predicted. She is however going to do the thyroid antibody test. 
I got my hopes pinned on this being the answer to all of my issues, now I am feeling so sad and disheartened....

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Re: New Member

Post by Hadleigh on Mon Dec 19, 2016 7:57 pm

Oh dear but not surprising I'm afraid. Lets hope the antibody test proves useful, assuming she can interpret the result ! If they show you do have an autoimmune problem she may be more helpful, fingers crossed for you.
Keep plugging away, you will get there eventually Smile

Take care
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Re: New Member

Post by amandalinc on Mon Dec 19, 2016 10:18 pm

Thanks Nelly. x

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Re: New Member

Post by amandalinc on Mon Dec 19, 2016 10:19 pm

and wishing you a Happy Christmas x

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Re: New Member

Post by Tigerlily on Tue Dec 20, 2016 10:21 am

Hi Amanda
I've not been on the forum for some time, but have just noticed your post - so sorry to hear of the long road you are travelling on the health front, but Nelly and Edwin's advice is invaluable, so do continue to ask any questions. I'm sure they won't mind.

Your 2.19 corrected Ca would seem to argue against a PTH problem, and your TSH of 3+ would be regarded in the US as too high and an indicator of hypothyroidism. I had to wait until my TSH reached 10+ before my endo would agree that I had low thyroid function. By then she had diagnosed autoimmune thyroiditis. My anti-TPO antibodies were around 500 at that time and are over 1300 now. I am now with a new endo and although the anti-TPO antibodies are too high, my low thyroid is now being better treated.

May I ask which part of the UK you are in? A few of us here have some experience of which endo's are helpful with thyroid problems, so we may be able to point you in the right direction.

Happy Christmas, meantime, and no doubt we will chat again in the New Year as you keep us updated on your progress (which we hope you will).

Best of Wishes, Tigerlily.

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