Slept well but still tired!!

Hi Deborah, join the club. I've woke up last few mornings feeling terrible. Like I've been up all nite. But have had a good night's sleep. Do u have overactive thyroid or graves disease. You get muscle weakness with graves. It's one of symptoms. Take it easy today. Hopefully you'll feel better in few days. :-)

I am awaiting my blood test results as not had any diagnosis yet, I see my GP on Monday for the results, but I'm expecting them to come back negative as every other one I have has been negative bit this is the first time they have checked for my thyroid , so will have to wait and see what they say x

Ahhh good luck then... hope for you it comes back fine as it's worst illness :-( I've been battling for 2 years now. I have been doing really well but last week has been nightmare. Let us know how u get on.

Thank you, I just want to know what's making me feel like this, then I can deal with it and move on. I'm sad to hear you are having a hard time right now, and I hope you feel better soon. I will be sure to post on here and let you know how I get on with my results. I am shocked at how many of you all suffer like this, I find the way I feel sometimes most unbearable, I guess I must get brain fog and sometimes I can't always focus on things going on around me, my husband says I just don't listen but it's not that I don't listen, I just can't comprehend everything that goes on.... Does that make sense? Do you have this symptom??

I agree with Deborah. It's better to know what you have. Deborah do you have a rapid heartbeat? Besides the eye irritation, that was my most noticeable symptom leading to the diagnosis of Graves. I can't remember whether I felt tired or not or how my sleep habits were at that time. I did have a lot of stress at the time as I had a very abusive coworker who thought she was my boss because she had a change in status of her position. Even if she had been my boss, that's no excuse to be abusive. I started to experience a lot of obsessiveness and anxiety in trying to resolve the issues with her as my boss was travelling a lot and wasn't around to deal with the issue. When he was back, I finally told him that I would no longer work for her and he accepted that. But the stress and anxiety were what triggered my Graves I believe which didn't go away even after the issue was resolved. My disease was diagnosed early before symptoms got out of hand because I had frequent routine blood tests for other reasons and my disease was caught in its early stages.

Keep us posted as to how you are doing.

I get brain fog a lot when my thyroid levels are decreasing, no matter what my TSH levels are. I have autoimmune antibodies consistent with both Hashimoto's and Graves', ie both hypo and hyper thyroid. There is also a condition called "central hypothyroidism" which involves being hypothyroid because the TSH is low and can't rise to stimulate the thyroid appropriately. That is thought to be mainly caused by a pituitary adenoma and extremely rare. To me, it seems like I might have a version that is hereditary -- just my idea. My sister has similar problems to mine, but the autoimmune aspects of diseases in general are hereditary.

As bad as it seems to get a horrible diagnosis, it is really best to find out for sure. The next step is to keep the doctors from killing us off by trying too hard to keep us alive.

Hi Deborah I used to get this alot too.... It is a symptom hun. Get your diagnosis first before you worry x best thing for this illness is to remain stress free. As stress and anxiety make symptoms worse. So let us know when u have results. @fern I don't understand your comment. Doctors are trying to hard to keep us alive :-/. What a worrying thing to say lol. It's very rare that graves disease is fatal. From what I've researched. Unless you have a 'storm' and then most people recover after hospitalization.

I think the reference to doctors by Fern is about doctors being closed minded to new treatments. I have worked for them for 40 years and I see this often. For example, if the majority of doctors believe Radiation therapy and/or surgery is the best treatment for Graves, many of them will push for it to be done, express themselves in such a way that the patient gets the message that this is what the doctor wants to do and will listen to no other recommendations, especially from patients.

I really believe it is important for patients to become partners in their health care, to seek out other opinions from those who have the disease as we are doing on this Board and to seek information in papers published in medical journals and even the Internet and then to make a fully informed decision about what is the best course of action for themselves. I am so fortunate to have a GP who supports me, listens to me, orders blood tests when I request them if he believes they will be helpful to my condition, and in general is flexible, also has integrity and is truthful if he doesn't agree with me and will tell me why.

I see so many passive patients who do not take responsibility for themselves to obtain the very best in health care and suffer because of it. One does not have to be a doctor to ask intelligent questions or to make informed decisions based on gathering all information available.

I agree with Ladykinkavel that Graves is not usually fatal but it can be very uncomfortable.

It has seemed to me that most of the endocrinologists I have been to, have been so worried that I would have a "thyroid storm" or fast heartbeat, or bone loss -- even when my heart rate is nearly always normal -- that they have "erred on the side of caution" keeping me more hypothyroid, thinking I wouldn't go into a myxedema coma and that would be the only real danger I would face being hypothyroid.

Personally, I think being hypothyroid puts a person at risk for infectious disease, and, actually I think some doctors are beginning to recognize the risk of a hypothyroid patient developing heart failure, but the last endocrinologists I talked to didn't mention it. They think I am more likely hyperthyroid than hypo because it is all defined by the TSH except for being "sub-clinical" if the free T4 is in the normal range.

My main concern is that there are more of us that are not "textbook cases" than they allow for.

Whatever the case, I hope you get a good diagnosis and treatment that doesn't make you feel worse than you were before.

I refused RAI, largely because I had been told for years that my thyroid was "in the normal range" while I was suffering from Hypo symptoms. After I refused the RAI, they stopped recommending it for people like me who have the GO [the Graves' Ophthalmopathy, or thyroid eye disease.]

Yes I have heard that RAI worsens Graves ophthalmology symptoms. Good for you for taking responsibility for yourself and not being railroaded into RAI.

Linda, yes I have been getting palpitations which have felt like flutterings and thumping in my chest, I always get breathless with them too, I have had an ECG just waiting to get results on Monday along with blood results from the drs...my legs back and Arms are very achy still though, feels like I have ran a marathon .

Though my disease was caught early and my lab values were relatively low compared to some Graves patients, I was very gratified to have the diagnosis and the prescription for Tapazole. Once on this, the worse symptoms abated very quickly, especially the heartbeat level. I went from an average of 100 beats a minute down to 80 which feels a lot better. I always attribute aches and pains to my arthritis but perhaps it was due to my Graves as well. The most important symptoms abated. The eye problem persisted for a long period of time but finally my ophthalmologist put collagen plugs in my tear ducts to keep my eyes more moistened as they were very very dry and irritated. They last about 3 months and then are replaced. You can get permanent ones that are made of silicone but after hearing what silicone breast implants have caused, I opted to stay with the collagen ones.

I am really excited and hopeful that Sigma Tau will do some clinical trials on acetyl-L-carnitine and Tapazole. I have added this nutritional supplement to my treatment regimen and it really improved my blood values, and helped my prescribed medication work even better.

Keep us posted when you get your lab results. You will feel better soon.

Linda

Linda,

I have been looking into the acetyl-L-carnitine, but maybe you can help me understand it better.

Did you previously post that it tends to raise the TSH while keeping the free T's stable? Or vice versa? or anything on that order?

Yes I did post that. My T3 and T4 were stable on the Tapazole alone but my TSH would not come up and it came up very quickly by adding the acetyl-L-carnitine. I found that though my TSH was in the normal range, I was afraid it would go too high so I have played around with the dose, that is when it is 2.4, I will stop the carnitine until it lowers and if it falls below 1.0, I will add it again. It works very well synergistically with the medication, that is both of them together work better than either of them alone. I would start at a low dose though like 250 mg. The only side effect I have heard people say was that their stomachs become too acidic but this is more likely on higher doses I never had this problem on doses of 1000 mg or less..

When I tried it, initially I used 1,000 mg a day and my TSH went from 0.12 to 1.4, then I dropped it and my TSH fell to .50. So then I took 500 mg a day and it went to 2.4!! So while I am ecstatic that it works so well, I am not sure what a dose would be that would just keep my results in a good steady range.

I am excited because I spoke to the Medical Director of Sigma Tau Pharmaceutical company, the sponsors of the first published study I read and told him of my experience and he is going to be discussing my case with representatives in Italy. I sincerely hope they do a clinical trial with this. My boss told me when I showed him the one study I read about that was done with L-carnitine that it would not harm me.

If you are going to try this, I would suggest getting blood tests done no later than a month after starting it so you know how it is affecting you.

Hope this information is helpful to you.

Linda

Fern, I notice that you said that you have both Hashimoto's and Graves? I am not sure how Acetyl-L-carnitine works in that condition. It is a natural amino acid found in the body and in a low dose should not be harmful but if you are trying it, perhaps it would be better to get blood tests done 1-2 weeks after starting it.

I also got my carnitine levels measured before I started on it and after I was on the supplement. Before I started on it, my carnitine levels were low.