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rubymay 05-19-2006 02:34 AM

Throid totally not working
i am hoping for advice for my mother, who has been very ill. We were told that her Thyroid had completely stopped working when she collapsed at xmas. she used to be a very fit woman, who played golf 3 times a week, however,we had noticed that her hearing wasn't very good for a while, she also sometimes had a slightly yellowing of the skin, but to be honest we put that down to her olive complection,my mum is qite a stubbern lady, who always seemed to see not being well as a bit of a failing, so to be honest we all pretty much ***** footed around her,and were all to afraid to tell her that we thought she wasn't right. Any way when she collapsed she could no longer ignore the ilness.(we understand now that she could of gone into a coma and died. I have just been home to see her (she is on theroxine now, but has to be tested every 2 weeks until they get the dosage right) When I saw my mum I was totally devastated (I live away and had not seen her for 5 months) she has lost about 2 stone and was only 9 stone to start with. her voice has been affected, she has had her vocal chords looked at but that test came back ok, she has been referred for voice therapy. we are all just hoping that her voice will come back to how it should be.I did notice that my mum also has developed a tremour in her hands and also her head is nodding, especially as the day goes on. She had been perscribed a medication, which on reading the litariture that came with it, she discovered it was an anti-deppressant and is now refusing to take it. However my sisters and I beleive it was pescribed because her nerve endings have frayed and think that this would if she would only take it help her shaking symptoms.
I am so worried about her, can anyone please give me some advice, we have been told that her condition, because the thyroid has totally stopped working is very rare. But I really need to know if she will make a full recovery. i also noticed when I went to see her that she is getting stomach problems she was sick one morning and then really poorly for the rest of the day,she also has hardly any energy, i can tell my mum is really worried and upset, as I said she was a exceptionally fit woman befor all this happend.any advice on this would be greatly appreciated.
many thanks.

adamace1 05-19-2006 05:06 AM

Re: Throid totally not working
I'm sorry for you and your familey. I found out last year my thyroid wasn't working at all also, and i was 26 years old, It was awefull, i would pass out, had no energy, lost my voice, ect. ect. It's going to be a long road to recovery but she should start to feel better within a week of taking meds, and then keep getting better from there. Good luck!!! I know she must be alot older then me, but My voice got better within a week, and within a month it was back to normal. I also found out i had an enlarged heart also because of haveing it so long, and my thyroid not working at all. They say that in time it will go back to normal. You say this happend around x-mas How long has she been on meds?

illmakeit 05-19-2006 05:13 AM

Re: Throid totally not working
Hi rubymay, welcome to the thyroid board!

I am so sorry about your mom. I am just a little hypo and my kids are a bit worried about me too. It sounds like she has a ways to go to being in normal ranges and herself again. Can you get the results of the thyroid and other tests? The shaking bothers me - I don't know what it means, there are so many possibilities - things I don't even know about.

If they have not checkd her adrenals, I suggest they do since she was hypothyroid for so long. Hypo for a long time can affect the adrenals.

I'm really new at all this, but just wanted to give you some support and let you know the people here are very caring. They don't, of course, have all the answers, but it sure helps when someone sympathizes with you and knows EXACTLY what you are talking about when you explain a symptom.

Take care - and prayers for your family.

rubymay 05-19-2006 09:46 AM

Re: Throid totally not working
Hello, thankyou so much for your reply, my mum has been on her medication for about four and a half months. I keep trying to point out the positives to her, i.e. her skin is better(it was all flaking off her legs) her hair is better and I do beleive her hearing has improved. But she is still so poorly, my dad found her crying in the kitchen a few weeks ago, upset because she wasn't able to even peel some potatoes, i'm not sure if this was because of the lack of energy or the shaking or both to be honest. I am so glad you are feeling better. May I ask you, was your stomach affected? I am just so amazed at how this illness affects so much.
Many thanks for you help.

rubymay 05-19-2006 09:50 AM

Re: Throid totally not working
Hello, thankyou so much for your kind reply,I'm not sure if my mum has had her adrenals checked, I will ask her.I'm not really sure what adrenals are to be honest!
would you be able to let me know if at all possible please.
Many thanks again, and all the best to you.

illmakeit 05-19-2006 11:11 AM

Re: Throid totally not working
I understand how frustrating it can be when you can't do what you used to be able to. It takes a LONG time to get the meds regulated in some people - most people. Your mom went without help for so long, it may take longer than normal for her to get back to being her old self. Hypo people often are depressed - something to do with the hormones I guess. Once you are regulated, the depression goes away if that was what was causing it and you weren't depressed before. I can say it is VERY depressing to not be able to do what you used to be able to do - and have to ask for help, when you are independent like your mom.(I prefer this to stubborn - since I am too :D )

My stomach was not affected - however, I had very few symptoms when a nodule was discovered last Oct and removed the whole thyroid in January. So your mom & I are on the same page there - no thyroid function - except that I never went very low on the hormones. The day after surgery I started taking Levothyroxine - it just isn't enough yet.

Here is a picture of the Endoctrine glands ( one is the thyroid) and the adrenal glands locations:

Copy & paste all but the [url] and [/url] Click on the pictures to enlargen. There is a LOT of info on the net, but watch what kind of a site you are on - there is a lot of misinformation out there. We can only post certain sites here - which for the most part is good.
They are located on top of the kidneys and produce hormones such as estrogen, progesterone, steroids, cortisol, and cortisone, and chemicals such as adrenalin (epinephrine), norepinephrine, and dopamine. If the the glands produce more or less hormones than required by the body, disease conditions may occur. I don't know much about this yet. Another thing that needs to be watched is your heart when you are hypo - I just don't know about it much yet either. Getting her on the right amount of medicine is the most important thing right now, to prevent any of the other complications. I was just wondering about the adrenals since it has been mentioned so much here that if you are hypo for a long time, adrenal fatigue may set in. So it couldn't hurt to check them.
Take care.

elmhar 05-19-2006 11:26 AM

Re: Throid totally not working
Hi Ruby May,

Adrenals are little glands that sit on top of your kidneys. They are responsible for production of a number of hormones that are critical to survival & healthy functioning.

When one is hypothyroid, the body is put into an emergency state & the adrenals start pumping out extra hormones. Some of these hormones make the body more sensitive to the little thyroid hormone that is available. But over time, the adrenal gland can get worn down from constantly being in high gear.

Optimal adrenal function will help your Mom recover sooner. It will help her body utilize the thyroid meds. That's why it's a good idea to request adrenal function testing. Being that her case is so severe, I would hope that your doc is sympathetic to your request. The worst that can happen is that the tests come back normal. ;)

Has your Mom had her ferritin level checked? Also very impt. Not sure how old she is. Sometimes perimenopausal women have heavy bleeding that reduces blood iron, affecting ferritin, which affects thyroid hormone utilization.

While you are asking for lab tests, you want to make sure that your Mom's calcium & parathyroid hormone levels have been checked. It is not uncommon for the parathyroids to be affected in severe hypoT. This in turn affects calcium levels, which can affect muscle & nerve function.

If your Mom's voice is affected, I wonder whether she has had an ultrasound of her thyroid gland? Could be she has a massive goiter that should be surgically removed. You can run voice therapy all the live-long day, but if there's a physical impingement on the larynx by the goiter, this IMO needs to be dealt with surgically. That sort of goiter can even interfere w/oxygenation during sleep.

When people are severely hypoT, they can be very sensitive to the meds & need a longer time to slowly ramp-up to their optimal dosing.

If this were my Mom, I would provide her with a broad-spectrum multivitamin with minerals. You want to make sure that she is getting plenty of B vitamins, and a little selenium. Softgel caps & liquid multivites are better absorbed than hard tablets. In addition, I would try to find a sublingual (under the tongue) methylcobalamin B12 supplement. Many times peripheral nerve damage can be reversed w/B12 supplementation. But you need to do this in combo w/the multi, as folic acid & other B vites all work together like a symphony.

Please remember that all vitamins & supplements should be taken about 4 hours away from thyroid meds.

If your Mom doesn't have blood coagulation problems, is not on blood thinner med, I would highly recommend she consider trying an EPA concentrate fish oil capsule. It will help her skin & depression improve more quickly. You want to look for a brand that has undergone molecular distillation to remove heavy metals. Some brands are even deodorized & flavored -- quite pleasant to take.

Could you be more specific about the stomach probs your Mom is experiencing? Someone here may be able to help.

Best wishes to you all.

illmakeit 05-19-2006 11:36 AM

Re: Throid totally not working
GOOD JOB Elmhar!!! Thanks - I learned a lot, as always!

rubymay 05-20-2006 04:09 AM

Re: Throid totally not working
Hi, Thankyou so much for your reply,I will proberbly need to read it a few time over to take it all in though!
i have just recently visited my mum in Kent, the day after I arrived she looked ghastly and said she had thrown up that morning. (She put it down to eating eggs the day before) however my mum has eaten eggs in the past and has not had an adverse reaction.I asked her what the pain felt like,i.e was it a sickly pain, a sharp pain or something else and she answered by saying it felt like a really bad be honest my mum has always suffered from stomach upsets and always put it down to either eating onions or cabbage.(like I have previously mentioned, my mum will never admit if there is something troubling her, so my sisters and I spend most of our time guessing) My mum is the most independent of ladies you could meet and in a way she has been her own worst enemy in all this, and if she had only told us long ago about her symptoms we could perhaps of acted on them earlier, before she came to the state of collapse.
To be honest I do even feel slightly guiltly talking about her illness behind her back, as I think she would not be very pleased, but my sisters and I just need some reassurance . my dad has suggested to my mum to make a list and to take it when she goes for her next appointment, she goes every 2 weeks. But my mum just got annoyed with him(Bless his heart) I dont even think she will mention to the doctor about her stomach or the tremours she gets, I think she just goes in there and says she is feeling better, even when she is'nt. I hope I am not sounding too negative here about my mum, I am just so, so worried about her and can't stand seeing her like this.
Hope to here from you soon. Thankyou

illmakeit 05-20-2006 05:14 AM

Re: Throid totally not working
Rubymay - you are trying to help your mum and what you are saying is not negative, it is just who she is. Her personality does make it difficult for her to get help. Perhaps somehow, someone could go in the doctor's office with her and gently remind her that she isn't doing great yet and say "Remember when you got sick and your stomach hurt last Friday" or "Doc it really scared me when she was shaking so much she couldn't continue peeling potatoes? This is just not like her." I think your mum doesn't want to be a bother to anyone - I am independent (okay, stubborn :D )like that. If she refuses to let your dad or one of her children go with her, one of you could call and talk to the doc privately about the situation. Tell him to ASK her if her stomach has bothered her etc. Seems sneaky, I know, however you have your mum's best interest at heart. Also, she isn't thinking clearly - I know I wasn't - lack of the thyroid hormone affects your brain and you are in a "brain fog" as many here will attest to. I couldn't even figure out little things, let alone the checkbook/bills. It would take me forever to put together a shopping list. I couldn't remember things. The list goes on.

It is great you mum has your dad. I took my husband with me to the doc- sometimes male docs don't treat women the same as men and listen better to a man also voicing his concern. AND when you have this brain fog, you forget to mention things.

Maybe some else has some ideas, I know it is difficult to deal with parents - I help take care of mine - Dad will be 88 in June and mom 84 in July. People need to feel useful. It is difficult when you can't do what you used to be able to. My dad will actually say "everyone would be better off if I just died."

Hang in there, this isn't something that can be fixed quickly. It takes a long time to get evreything correct.
Take care.

elmhar 05-20-2006 09:04 AM

Re: Throid totally not working

It's great that your Mom is independent. Perhaps she would benefit from reading some books about thyroid illness?

Low thyroid can really hose up just about everything, including digestion. Hopefully, as your Mom continues to take & adjust to the thyroid hormone, her digestion will improve some & she will have few stomach upsets. But, it's not a bad idea for her to mention this symptom to the doc.

Take care, and learn all you can about thyroid disease. So often the tendency is hereditary. You don't have to go all the way downhill to qualify for treatment.

Best wishes.

rubymay 05-23-2006 05:37 AM

Re: Throid totally not working
thanks for your reply, I had my Thyroid tested a couple of weeks ago, they've said it's ok but want to test again in 3 months time, i am though after reading so much lately about the thyroid and the way it can fall into normal ranges but can then progress to hypothyroidism going to ask if I can have my results, so that without any symptoms i then will know what is 'normal' for me.

I've been reading a book by Diana Holmes which is very interesting, can't beleive how similar lots of her symptoms were to what my mum is experiencing now.
Take Care.

rubymay 05-23-2006 05:44 AM

Re: Throid totally not working
Hello again,
Thanks again for all your help on this.My mum has an appointment on Thursday to have her bloods tested again, I think I am going to phone up and see if I can speak to the doctor as there is no way at all that we would be able to go in with mum,One other thing I wanted to ask you, do you know if weight loss is part of the illness, as whenever I read up on this it seems more likely that sufferers have weight gain. My mum has lost about a stone and a half to two stone. I did notice yestrday on the phone that her voice sounded a bit better though.
looking forward to your reply. many thanks again.

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