Feeling terrible.....

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Yep, exchange my name for yours in your post and you've got my story too.... it's bloomin' miserable!!!! If I could wave a magic wand and permanently resolve one symptom it would be the sleep thing.  Oh what joy it would be to have a full, undisturbed night's sleep each and every night! Bliss ...... unfortunately I'm still struggling to get to sleep and stay asleep - when I do doze off I wake up every hour almost to the minute.

Jasmine x

Am with you there Gina,
For me the mornings are the worst, I don't know if I sleep with my mouth open but last night was up three times for dry mouth and feeling thirsty, then expelling of said fluid lol. My feet seem to come alive at night as well, especially just below my toes, feel like they have been run over.  I try not to let it frustrate me but that is easier said than done when you feel tired all the time.  
Take care, Sue

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Yep, me too ....

J

Ditto to everything that's being said here.    I still can't sleep through the night 4-3/4 months post-op.   I am usually awake every 2 or 3 hours now, which is much better than every hour, but still stinks.  Once I'm awake around 5:00, I'm awake for good, and I feel more tired than when I first went to sleep!    I thought this was supposed to be the first symptom to resolve!!    

I too have restless leg syndrome.   That doesn't bother me often, but some nights it does.   I have trouble when my cats crawl up on me to sleep, and I get that feeling to constantly move my legs.   If I can't keep moving them, it sort of makes me nauseous.   Yes, it is very hard to explain.

I do have some needles and pins in my hands, but the main problem with my hands is the pain and stiffness in the fingers of my left hand.   Some days I have no pain at all, but some days it's pretty uncomfortable.   It seems since surgery they don't hurt quite as often.

Yep, just hate this disease!!

Audrey

Add me to the list. I'm usually awake 2-3 times in the night, have to have a pee and then wake up for good around 5.30-6 but I actually feel like I've been hit by a bus. I takes me a good hour to hour 1/2 to actually function and feel well enough to have a shower and wash & dry my hair. If I try to do it before that I just feel sick and dizzy. I just to up and sorted by 6.3-7. By around 9 I'm actually feeling better.
The horrible thing is my feeling ok now still consists of back, hip, limb pain, foggy head, bad memory, peeling nails and various other problems. It's awful that these things become the norm for us all.  
Amanda xxxx

That should have said I used to be up and sorted by 6.30-7.  
A x

You are right, Amanda, it IS awful that we begin to feel all of this misery is normal.   I have lost all sense of normalcy.   I can't remember what a good day really is!    If my pain is at a "good" place and not excruciating, it is a good day.   How sad.

Audrey

Ditto that, Audrey.  I can't remember how it felt to be 'normal' as this has been normal for me now for so many years.  I'm so looking forward to the epiphany when it suddenly dawns on me that wow I feel GREAT..... !   

Jasmine x

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I've had two surgeries Gina, the first here in the UK last August which was unsuccessful, my second in Tampa on 18 February this year. So still quite early post op for me and my levels still haven't settled down - calcium and PTH still high - and I'm still getting symptoms but the endocrinologist is cautiously optimistic that all will be well in time.
Jasmine x

I had surgery 24/4/13 one adenoma removed by focused surgery, other 3 glands not checked. I still have high or borderline calcium on every test since and mid range PTH. So there is a good chance I have another one in there. I'm also being checked for hypothyroidism as my levels are messing around. I see Endo 24/4/14.
Amanda xxxx

I've just had 1 surgery.  That was this past November 14th.    I had 2 parathyroid adenomas and 1 thyroid nodule removed.    Had my surgery in Tampa.    Last lab results revealed a calcium of 10.2 and a PTH of 31.7.    Still wondering why the calcium is in the 10s, but Dr. Norman says all is well.    My PTH is half of what it was right before surgery, so hopefully he's right.

I'm also suspecting thyroid as the cause of some of these symptoms now.   I have an appointment with my endo this morning.

Audrey

Good luck Audrey.
A xxxx

Little Audrey wrote:I'm also suspecting thyroid as the cause of some of these symptoms now.   I have an appointment with my endo this morning.

Audrey

Make sure that you get blood tests for TSH, FT4 and FT3 as a minimum.
B12 and Vitamin D will also be useful, because if these are low, the thyroid medication will not be as effective.

Edwin

Thanks Amanda. 

Thank you too, Edwin.   I am ready to leave now.  I will be sure to request those tests.   I still don't understand why she didn't order the T3 last time.   I mean, doesn't everybody know that's what your body actually utilizes?    I am unsure why she would think all is well if she had no idea what my T3 is.   And I do hope she thinks a T4 of 0.65 is too low.

I'll let you all know how it went as soon as I get back.     Thanks again!

Audrey

Good luck Audrey.

Unfortunately, most endos know a lot about Diabetes and not enough about Thyroid diseases.

They think that TSH is a Thyroid hormone, whereas it actually comes from the Pituitary gland and they also think that replacing the Thyroid hormone T4 is all that is needed, not understanding that T4 is not the active hormone.

Yes, I agree with all of that, Edwin.  

I am back.  Appointment went well.   She feels certain I am cured of HPT, but, then again, she never actually thought I had HPT, so although it was nice to hear, I am still a bit doubtful.   Hopefully, she is right.   She was one of the doctors who did read the material I printed for her from Dr. Norman's site, and she was the ONLY doctor who after reading it, decided there might be a possibility of me having a parathyroid tumor and that I should finally contact a surgeon.   So, I respect her for that.    That doesn't mean I will no longer question things!  

She looked at my lab results and told me that since my ionized calcium is normal, and if she adjusts my calcium, it comes out normal, I am definitely cured of HPT.  I reminded her that my ionized calcium never once was out of the normal range before my surgery.   I also told her that when I figured out the adjusted calcium before surgery, that was always normal too.   She assured me that I was cured.

She is wondering if I should see a rheumatologist and/or a neurologist for the muscle cramps and twitches.   I told her I was really thinking these symptoms, along with the tendon issues, are lingering symptoms of the HPT.     Either that, or maybe they're being caused from the underactive thyroid.    She said she has never heard of HPT causing such severe symptoms, and that usually the few symptoms it causes are very benign.         I told her I know of many people with this disease who have these very symptoms, and there actually is a very long list of HPT symptoms, which are very painful, miserable, annoying, and frustrating!     She was not aware of that.  

She was very impressed with my scar and told me that it won't be long now until it won't be noticeable at all.  She said Dr. Lopez did a great job.   I agree 100%!

Then we started to discuss the thyroid.   She looked at my TSH of 0.52 and my T4 of 0.65, and told me that everything was in the normal range, so all looked good.         I asked her again why it matters all that much were the TSH is, if it is the T3 that our bodies actually utilize.    She told me that they generally feel if the pituitary gland is happy, keeping the TSH in the normal range, everything is functioning normally, and there is no need for treatment.   Now, I have to tell you that this woman is very intelligent, I can tell just from talking with her, but this still made no sense to me.   Eventually, I asked her if we could possibly increase my thyroid medication.   She was reluctant, but thought about it for a few minutes and said if we wanted to raise it from 75 mg to 90 mg, we could give it a try.  So that's what we're going to do.   She really doesn't think this will help at all with my muscle cramps, twitches, and tendon issues.

Even though I questioned a few things she said, she was very friendly today and talking to me as if I was more of a friend than a patient, so I felt free to discuss other issues as well.   I love this in a doctor! 

After discussing my bad appointment with my urologist last week, she smiled at me and said, "Maybe it's time you find another urologist."   I told her I am very close to doing so.    I really am not fond of my urologist.  She is always in a great hurry and never gives me a chance to speak or ask questions.  I am not exaggerating, at my appointment last week, she could not have been in the exam room with me for more than 5 minutes!     I had questions I needed to ask her, but I didn't get that chance.   I actually asked my endo her advice about the urologist's suggestion for treatment.   She was very kind to take the time to answer my questions the best she could.    I really appreciated that!

I did discuss my depression.  I told her my PA has been wanting me to take an antidepressant for a few years, since all of this started with the HPT, but I have continued telling her if someone could just get rid of my pain, I would not need an antidepressant.  I have been depressed because I hurt so badly, and it never stops!!    She said she understood.  She said chronic pain is very hard to deal with.    She sure got that right!   My pain has actually been at the "good" place for a couple of days, and I am feeling better mentally.   I know for a fact that if this pain was gone, I would not be depressed!    I know the pain can worsen at any minute, but I am enjoying this little improved period.   I do think increasing the thyroid meds might help with the depression too.  

She gave me an order for more bloodwork.  In 2 months we will be checking TSH, T3, T4, and magnesium.  In 6 months we will be checking serum calcium, ionized calcium, PTH, vitamin D, TSH, T3, T4, along with a comprehensive metabolic panel.    I would like to have my calcium and PTH tested again sooner than 6 months, so I will ask my PA for a script to have that done maybe in 2 months when I have the first set of tests done for the endo.   

So, I guess as appointments go, this was 1 of the better ones.     I am going to give myself some more time to heal, hoping that the muscle and tendon issues will resolve.    If they don't, I guess it will be time to see a rheumatologist and/or a neurologist.   

And, Jasmine, I didn't even need to take the collar out of my purse!!!        

Audrey

That does all sound fairly positive Audrey and you have the increase to try so hopefully that will help you.

Always works best when you can get the doctor on a good day, it's when they are in a bad mood we are all in trouble  

Take care

Nelly

Sounds mostly good Audrey, except for the TSH foolishness.

I would advise getting the Thyroid bloods done as soon as you can, rather than waiting around.

Depression is definitely one of the numerous symptoms of Hypothyroidism, but many docs do not accept this.

I have experienced it myself with low Thyroid levels a few months ago and it has disappeared now that I am taking 20mcg T3.

I know that I am still Hypo and have to wait until next month and my first endo appointment before anything more will happen, as my GP is too scared to increase my T3 so I have to struggle-on with insufficient T3 and what seems to be pointless T4 tablets.

Edwin

You are right, Nelly; when you catch them on a bad day, you might as well turn around and go back home.  My doctor today came in and told me she actually was having a very bad day.  She said the computers were acting up, and she was going crazy with that, and another doctor there was ill, so she was trying to take care of his patients also.    I sympathized with her and told her I wish there was some way I could help, but, of course, I couldn't.    I was surprised she was so patient with me and even smiled several times.   When I was leaving, I asked her about our city's baseball team.  I know she loves hockey and goes to a lot of hockey games, so I asked her about baseball too.   She truly was more like a friend today.   I was very happy with her, even though I still disagree with a few things she said.   I am willing to work with a doctor if they are willing to work with me.

Edwin, I do hope you're right about the depression, and I sure do hope the increased thyroid meds also help with my muscle cramps and twitches.   I do know someone recently posted that eyelid twitches are very common with hypothyroidism.    It would make sense to me that if it is left untreated or inadequately treated, more muscles could be involved.    I am sure hoping this is the case.

I am sorry you have to wait to see your endo to get some help.   Would you mind if I asked your TSH, T3 and T4 levels?    I find that making more comparisons when I'm having problems, really helps me solve  those problems.     I did this a lot with the HPT, and it really helped.

The reason my endo wants me to wait for 2 months to retest my thyroid function is because she wants to see how I do on the new increased dosage.    She said it takes about 8 weeks for a change in the meds to completely take effect.  

Thank you both so much for your input!      

Audrey

Hi Audrey

I am used to waiting on the NHS, but it is not a problem for me.  I wouldn't be here without them.

My Thyroid levels are below.

Remember that the ranges and measurement units will be different on your side of the pond.
Also, my Hypothyroidism is not genetic, but caused by one or more courses of toxic medication over the years.



This comes from an Excel spreadsheet that I maintain for my Thyroid and key renal levels.

With T4 meds, it typically takes up to 6 weeks to feel the full effect of any increase, so docs usually want a minimum of 8 weeks between blood tests.


Edwin

Hi Audrey,
I am so glad you had a positive outcome with your endo today. When I first became hypothyroid In 2004 I started on Thyroxine 50mcg, it was increased to 75mcg 4 months later as I still felt ill even though my TSH was now back in the high normal range. I found my GP much prefers to go by blood results rather than how you actually feel, but I did manage to get it increased to 75/100mcg alternate days which gives me 87.5mcg each day. My TSH does swing a bit but is usually around 1 and although my T4 when they do it is low I feel better than I did but not fantastic. I did ask to be referred to an endo then and was duly sent to the local hospital, saw the consultant, he checked me for Lyme Disease and checked bloods and parting words were "some people go through periods of fatigue" that was 6 years ago and I was not impressed. When all this PHPT stuff started in January and my GP said we will send you to endo, I specifically said I will not go back to that consultant, to which my GP said "why would I send you to see the stroke man?? So I answered well that is whom I was sent to for my poorly treated thyroid problems last time. I really thought I had been seen by an endo, so just shows how they trick us.
Sue in Lincs