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New postoperative patient

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New postoperative patient

Post by shery on Thu Apr 03, 2014 9:24 pm

Hi all,                                                                                                                                                                                                              I always wanted to join the old forum but I could not.I am very happy I can do now. I had my surgery in tampa over 4 months ago. My symptoms were terrible anxiety and depression.I was expecting rapid cure, but unfortunately it is very slow and frustrating.My symptoms started 9 months before surgery and became severe in the last 5 months before surgery.I hope I can feel normal again and restart my study which I could not continue the last 9 months.I am 38 years old female.I am happy that I can contact you here and on the face book.                                                                                                         best wishes, shery.

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Re: New postoperative patient

Post by Lucycatnaps on Thu Apr 03, 2014 9:52 pm

Hi Shery,
It is so lovely to hear that you have had a successful surgery, I am at the very beginning of my journey with this and also for me the anxiety and panic is really hard to cope with. I find it is at its worst first thing in the morning and eases off by the late afternoon. It was precisely that reason that made me go back to my GP in Jan and say something is really wrong as normally I am pretty laid back ( OH may beg to differ) he did all my bloods again and the calcium came back high. I know the flight/fight mechanism is very hard on our adrenals and it does take several months for it to recover when it has been constantly stressed. Don't be too hard on yourself as it is early days, tiny steps etc, but I fully understand how frustrating it must feel. I am sure someone will answer who has had the surgery and knows a lot more than me!
Take care, Sue in Lincs
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Re: New postoperative patient

Post by Hadleigh on Thu Apr 03, 2014 10:21 pm

Hi Shery and welcome to the forum

Sorry to hear you are going through a slow recovery, Audrey is in a similar situation to you so she will be good to chat to.
It must be very frustrating but as Sue says take things slowly and hopefully you will be back to normal very soon.

Take care

Nelly
PS By the way that isn't us on FB, must be another group, I will zip over and have a look !
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Re: New postoperative patient

Post by Little Audrey on Fri Apr 04, 2014 12:19 pm

Welcome to the forum, Shery! So glad you could finally join us!

Sorry to hear about the slow recovery. Nelly is right, I am in the same boat. My surgery was 4-1/2 months ago, and I am still suffering from a LOT of muscle and tendon pain, some bone and joint pain, and nonstop muscle twitches. I believe it is due to all of the pain of the past 3-1/2 years, the depression is setting in nicely now. I try to fight it, but my body is getting tired of fighting. I am so very grateful for the few symptoms that have resolved, but, unfortunately, the painful ones have not. My calcium has not yet dropped below 10.0 post-op, and that is a bit concerning to me. Although, my PTH has dropped to about half of what it was immediately preceding surgery, to the 20s and low 30s. Dr. Norman tells me I am cured, and all is well. He keeps reminding me that it can take up to 6 months for the symptoms to fully resolve. That 6-month mark is getting closer and closer, and things are not getting any better. VERY discouraging! I am really thinking that there might possibly be more to my symptoms than just HPT. I am suspecting the thyroid. My thyroid levels are all in the very low/normal range, so the doctors will not increase my meds. So I keep waiting and praying.

I guess it just takes longer for some of us. My muscles always did have a tendency to be tight even before all of the HPT stuff started, so I'm thinking maybe that's why they and my tendons are being affected the way they are from this disease.

All we can do is continue being strong, pray, and wait. Seems like this whole darned disease is all about fighting and waiting. It will sure be nice to be completely well again and feeling normal!! I know we can do this, but it sure isn't easy, is it?

We must keep our chins up and march on!!

Audrey

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Re: New postoperative patient

Post by Hadleigh on Fri Apr 04, 2014 1:26 pm

Audrey do you have your thyroid results ? if you want to post them we can take a look and someone can maybe offer some advice. Both Mr admin and I have long term thyroid problems.

Nelly
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Re: New postoperative patient

Post by Little Audrey on Fri Apr 04, 2014 1:42 pm

Thanks, Nelly. I appreciate the concern and the offer of assistance.

The most recent results revealed a T4 of 0.65 and a TSH of 0.52. The T3 was not tested this time. I have no idea why it wasn't, since it is the T3 that our bodies actually utilize for almost every function. I don't think doctors fully understand this disease either! I have not yet talked to my doctors regarding these results, but I doubt if the doctors will increase my thyroid medication due to the lower TSH level. I have heard that muscle twitching is a symptom of hypothyroidism, along with muscle cramps. This is why I am really leaning toward the thyroid as the cause of these symptoms that I have been blaming on the HPT. I forgot to mention that here in the US, at my lab, the normal ranges for T4 are 0.61 to 1.12. Normal TSH is 0.34 to 5.56. My doctors feel when the TSH is fairly low, there is no possible way a person could need more thyroid medication, even if the T3 and T4 are very low/normal, as mine is.

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Re: New postoperative patient

Post by Hadleigh on Fri Apr 04, 2014 2:01 pm

Audrey your T4 is too low it ideally should be at least in the top half of the range, shame they didn't do T3 as I would guess that is low as well. Your TSH is low end but still in range which is fine, it's not a good indicator of thyroid levels anyway, patients on thyroxine shouldn't really be treated by TSH levels but doctors don't understand that !

It does indeed look like you could do with an increase to bring your T4 up but you probably don't want your TSH to go too much lower than it is although many people have suppressed TSH and are fine, so a bit of a balancing act to get the right dose. Would your doc be open to you suggesting a trial increase to see if it helped ? go on get your persuasive hat on  Wink 

The other possibility is you might need a bit of T3 added to your T4 dose, Mr admin is the T3/T4 combo expert, works for him. He may have some words of wisdom but he's in transit until tonight.

Nelly
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Re: New postoperative patient

Post by Jasmine2 on Fri Apr 04, 2014 2:40 pm

Nelly, with the stories we've heard about some of Audrey's doctors she'll need to get her studded Rottweiler collar on, not her persuasive hat haha! Shocked
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Re: New postoperative patient

Post by Amanda Lynne on Fri Apr 04, 2014 2:50 pm

Hehehe does she need her fanny pack as well !!! Laughing 
Nelly I've had my thyroid levels tested prior to seeing Endo and this is what's come back.
TSH 2.69 then 2.29
FT4 7.20 then 8.60
Serum Creatinine low 51
I have no idea what these levels mean and as I read that you and Mr Admin are experienced in Thyroid problems I thought I'd run these past you, if you don't mind.
Thanks Amanda xxxx
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Re: New postoperative patient

Post by Hadleigh on Fri Apr 04, 2014 4:36 pm

Amanda do you have the ranges for those test results ?

Our ranges are
TSH - 0.3-5.5 mIU/L
T4 - 12-22 pmo1/L
Serum Creatinine - 45-84umo1/L

Yours may well be different so you really need them to see where you are. I would take a stab at your TSH being a tad to high although probably in range, T4 can't tell without the range as your result would be below on our range

If you have them do post and we can have a squiz at them for you.

Nelly
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Re: New postoperative patient

Post by Amanda Lynne on Fri Apr 04, 2014 5:51 pm

Hi Nelly
The ranges I have got are TSH are 0.34-5.6
FT4 7.5-21.1
I hope this is of help.
Thanks Amanda xxxx
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Re: New postoperative patient

Post by Admin on Fri Apr 04, 2014 9:31 pm

Hi Amanda

Your TSH is heading upwards in the range and your T4 is way too low.

So this means your pituitary is telling your thyroid to put out more T4 so that it can be converted to T3 which is the active part every cell in your body needs.

The problem is doctors will only look at the TSH and because you are in range most will do nothing until it is higher, some will not treat until it is over 10 which is just plain stupid.

A low T4 and T3 means your engine has very little fuel ! Do you think you do have a thyroid problem ?

Have a look at the info on the main ThyroidUK site (not the forum).

Hope that makes sense.

Nelly

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Re: New postoperative patient

Post by Admin on Fri Apr 04, 2014 10:23 pm

If it helps, here are some links:

Creatinine: http://www.rixg.org/results/creatinine.html

Thyroid blood tests: http://www.thyroiduk.org.uk/tuk/testing/thyroid_blood_tests.html

Interpretation of Thyroid blood tests: http://www.thyroiduk.org.uk/tuk/testing/interpretation_thyroid_blood_tests.html
Actually, I am not very impressed with this information, because TSH is really only useful for the initial diagnosis of Thyroid disease.  It is not very useful once under Thyroid medication (not that your doctor will accept this, because they are taught that TSH is the best thing since slide bread and they usually know nothing about T3, which is the active Thyroid hormone).  Many Thyroid patients get diagnosed as depressed, chronic fatigue syndrome, fybromyalgia and other such nasties because doctors focus on TSH, whereas they really need to see what the T4 and T3 are doing.  There are many common symptoms with both Thyroid and Parathyroid diseases.
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Re: New postoperative patient

Post by Little Audrey on Sat Apr 05, 2014 2:01 am

Oh, my goodness, I just got on here to see what I've missed today, and I am laughing out loud!! One of my cats was lying beside me when I cracked up, and he thought I had totally lost it!! Jasmine and Amanda, you're both too much! After that appointment I just had with my urologist, I can tell you I've got my studded collar all ready to go for the next one! Look out, baby! Can't seem to find my fanny pack though. I must go search for that!  Laughing 

Yes, I agree that the doctors rely too heavily on the TSH. You are right, Edwin, once we are being treated for hypothyroidism, the TSH will be suppressed to some degree. I have asked my doctors many, many times why it matters where the TSH is, when it is the T3 that our bodies utilize for just about every function. They always just tell me that it is not good for the TSH to be too low. When I started seeing a holistic doctor about 10 years ago, he did not go by the TSH. He was more interested in the T3 and T4. My TSH was down to 0.06. My other doctors were having fits because it was so low. They kept begging me to stop seeing the holistic doctor. I finally caved and told them that I would stop seeing him, and I would give them all 1 more chance to patch me up and get my body functioning optimally. That was about 6 years ago. I have been struggling ever since. We tried to raise the Armour, which consists of T3 and T4, a couple of years ago, and my eyeballs started aching. When I cut back, they stopped hurting. Although, I don't think my T4 was as low as it is now when we did that. I am thinking I really need to try to raise my meds again now. I have an appointment with my endo on Monday. I will discuss this with her. Hmm.... maybe I'd better wear a collar on each wrist and ankle too!!

Thank you all for the comments and advice!

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Re: New postoperative patient

Post by Little Audrey on Sat Apr 05, 2014 2:07 am

Oh, wait a minute, I addressed Edwin up there in my reply, and I do believe it was you, Nelly. Sorry about that. No problem with the HPT brain HERE!  What a Face 

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Re: New postoperative patient

Post by Amanda Lynne on Sat Apr 05, 2014 8:16 am

Hi Nelly thanks for your reply. In answer to do I think I have thyroid problems, I don't know I have felt so unwell for so many years I don't know what is connected to PTH problems and what would be thyroid problems. Despite reading all the info I can I can't find anything other than blood tests which would separate the two.
When I wrote to Endo about low FT4 result she sent me these tests to do.
Full bloods, U & E, LFT, bone, TSH, FT4, FSH, LH, Prolactin, Oestradol, FT3, 9am Cortisol, IGF 1, GH, PTH.
So I think she seems to be having a good check.
Are there any symptoms that differentiate PTH disease from thyroid problems ? I seem to have so many and when I did the check on the Thyroid site I had loads that are on their list but they also relate to PTH symptoms as well, so I'm confused.
Audrey good luck with your Endo appt I hope you get some help and support. I see mine (unfortunately different one from the one doing tests as she's not available for months) on 24th.
Amanda xxxx
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Re: New postoperative patient

Post by Admin on Sat Apr 05, 2014 8:55 am

Yes well that is the problem Amanda, it's almost impossible to know which is causing the symptoms.

For years I was convinced my symptoms were thyroid related and then I had the high calcium result so the focus switched to pth, still not sure it's all down to hpth but time will tell, or maybe not if surgery doesn't do anything for me  Neutral 

You have a good range of blood test there so hopefully you will find something out from those.

Nelly
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Re: New postoperative patient

Post by Admin on Sat Apr 05, 2014 9:35 am

@Little Audrey wrote:Oh, wait a minute, I addressed Edwin up there in my reply, and I do believe it was you, Nelly.   Sorry about that.    No problem with the HPT brain HERE!    What a Face 

Audrey

Don't worry about it Audrey.
On our shared PC, we sometimes write a post and then discover that we have used the other's login  confused 

Edwin
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