dizziness, nausea, fatigue, light sensitivity, headache, cold hands/feet, joint/muscle aches, weakness, What is it?

[trixi138]

I am a 26 y-o- Female. For the past 3 months now I have been having strange symptoms like nausea, dizziness (extreme at times), headache behind the eye and sensitivity to light, joint/muscle aches and stiffness mostly in hands and feet but occassionally like a full body flu-type attack, weakness in wrists, cold feet and hands that feel like they are plunged in ice water whenever I take a hot bath/shower, constant feeling of cold so that I just can't get warm, occasional hot flashes and chills, exhaustion and sleepiness all day but hard to stay asleep, and memory problems/disorientation like a brain "fog", flashes and shadows out of the corner of my eyes, and some other symptoms not listed. I have a history of Graves Disease diagnosed at 12 years old and treated for several years with PTU. I had a relapse at the age of 18 and had radioactive ablation of the thyroid done. I have recently seen a rhuematologist due to a slightly elevated RH factor (14) and he drew more labs to detect Lupus and other autoimmune connective tissue disorders, all of which came out negative or normal including the CCP test for rheumatoid arthritis. Though my TSH levels have been hard to keep stable (recently miscarried at 8 weeks with a TSH of 40), this last test was normal (Currently taking thyroxin 100 mcgs and Cytomel 10 mcgs) including antibody and FT4 and FT3 levels. Blood count and lIver tests were also normal. Xrays of hands and chest were normal. Opthamologist visit reported normal eyes except for slight dryness. Other than these, I have a history of repeated low vit D levels, atypical PCOS as determined by cystic ovaries on ultrasound and borderline insulin resistence, but no androgenic factors. I go to neurology in a month's time and also back to rheumatology. I know there are autoimmune disorders of the nervous system that can cause some of these symptoms, but I have not noticed numbness or nerve-like pains or extreme muscle weakness that seem to be found in most of them. I know it is possible that I have the early stages of rhuematoid arthritis as I do have a family history of it, but some of these symptoms don't seem to fit. Any ideas about what could be going on with me and further testing I need to pursue? Thank you.

[christsavesall]

That is funny... And wonderful too that you knew to take it, has it helped you as much as it has helped me and my mother?

[PlateletGal]

Yes... and these supplements are often recommended by the fibro/CFS experts. I also take ACTYL Carnitine & COQ10. I used to take a supplement (actually.. it's a sugar) called "D-Ribose".  It has been proven to be helpful for many fibro/CFS patients. It worked for approximately 6 months.. gave me extra energy and then for some reason, it stopped working for me.

[christsavesall]

Lol, that's so funny about the D-ribose, that is the first thing I told my friend about to help her with her Fibromyalgia! After that I started searching all natural things and found out about Iodine and how important that was and then also about the importance of the other supplements listed. I have also found that COQ10 is great for Fibro people, havent found out entirely why, but I know it is...

[PlateletGal]

I'm glad to hear that. I am one of the Community Leaders in the fibro/CFS forum and I see many fibro patients on drugs such as Lyrica and it seems like 99% of them are not getting better. In fact, we recently had a poll in the forum and none of these people were seeing any improvements. I can't tell these people what to do, but I often suggest to them that they should consider listening to the fibro/CFS experts. Many of these experts recommend supplements such as magnesium & D-ribose.

[Weesy68]

Thyroid peroxidase antibodies are implicated in both Grave's disease and Hashimoto's Thryoiditis and they can co-exist and cause most if not all of your symptoms.  Does ablation mean you had all of your thyroid destroyed?  If not, then if there is any part of your thyroid still functioning then that could be the problem.  There are also related diseases and conditions caused by the pituitary and anterior pituitary as well as adrenal glands that can cause those problems.   The adrenal glands are involved with PCOS as well.  Vitamin D is the only vitamin that acts like a hormone inside the body and is involved with hormonal function.  So if you have something wrong with your adrenals/pituitary or thyroid it can affect your Vitamin D.  You might ask your doctor to take labs of your growth hormone, DHEA, ACTH, cortisol levels as well as test your ferritin levels since you can have iron deficiency anemia with low levels of ferritin while your hematocrit and hemoglobin appear to be normal.  I had low ferritin a few months back and it caused serious brain fog, fatigue aches and pain and I was never colder in my life.  If you are having to wear sweats to bed and pile blankets on top of that and you are still cold, my guess is you are anemic, but if they do not test your ferritin along with the hematocrit and hemoglobin they may miss it.  Two doctors missed it in me.  The third doctor did not.  He put me on an iron pill called chromagen forte and it made a huge difference within two weeks.

[trixi138]

The radioactive ablation I had did not destroy all the thyroid cells. I still have some living cells apparently. I have not had my cortisol, ACTH, or growth hormone levels checked. Hopefully endocronology will do that this month. DHEA was ok this time. As far as I know, I do not think anyone has checked my ferritin levels. I will ask my dr about that on Fri. I did not know that the other levels could be ok, but ferritin not be. My MRI is at the end of this week.  

I have been on some of these supplements before, but not lately. It is difficult for me to tell what is working/not working lately. I did try the Maxalt for the 'migraine' headaches and saw no improvement. I think neuro looked at me, at my age, and my thyroid problems and heard that my father gets migraines and sort of lumped it all together.

I have been feeling terrible lately, hope drs figure it out sometime soon, though I must admit I'm jaded about that. When I first got Graves it took them a year to figure it out (blamed it on puberty, being female, the its all in my head treatment, you know how it goes) and even when I had my relapse years later, took me about that long to convince someone there was something wrong with me enough to even draw the right labs, even tho both times my symptoms (and disease activity) were severe! This seems to happen to me a lot, especially if my particular history and symptoms don't follow the expected textbook trajectory. *sigh*

An odd new thing that has been happening this month is periodic breakouts of mouth sores. They don't really hurt. I have one now. A coupple weeks ago I had three at one time. I have had what I call 'canker sores' throughout my life, but these new bumps/swellings are not really painful.

GYN scheduled an ultrasound at the end of the month to check for anything out of the ordinary that could be causing the pain. I know 1 in 4 women get endometriosis, and my aunt had it so bad, she had a hysterectomy, so I suppose it could be something like that, but I think they have to do a laparoscopy to check. Probably not related to my other problems?

If fribromyalgia is the cause, I am not sure who would dx it, but will keep an open mind about that possibility.