New to Forum, Need help.

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New to Forum, Need help.
« on: December 31, 2015, 07:41:12 PM »
Hi everyone! I'm sooo happy I've come across this forum! I'm a 32 year old male and carry Beta Thal. Let me start from the beginning.

I have been relatively tired my whole life, but something happened to me at the the end of last year. I was driving with my sister to a funeral in New York(We live in NE Ohio). It's about a 2 hour trip and about 1 hour in something happened to me. It honestly felt like my brain flipped in my head. I became super dizzy and was so worried I was going to pass out going 60 on the freeway. It literally felt like going 60 was 300! My body felt like it was behind me and I was going in Super speed. I had such tense muscles. We ended up making it there and I immediately went to see my GP when I got home. He told me, "Well, since you started school again it's probably just anxiety. A lot of people get anxiety out of no where." I accepted this in Oct 2014. Fast forward a couple months and nothing has changed. I'm still experiencing these symptoms:
Jaw tight
Can't relax shoulders
Constant sinus infections.
Stiff neck /Back
Dizziness/off balance
Head zaps.
Bloating
Ears clogged
Easily startled
Insomnia
Anxiety/Panic attacks all of a sudden
Sleep apnea
Never refreshed after sleeping
Talking to people In space I become dizzy and need to hold on to something
Legs jello
Sunlight hurts eyes
Face pale people say at work.

I go back to the GP and tell him the antidepressants are not working and I'm feeling worse and worse. He prescribes me a different set of antidepressants and sends me on my way.

At this point I'm like "Ok, no one knows how you feel better than yourself. This did not just seem like a case of anxiety for me. I decided to get a 2nd opinion from a doctor at the Cleveland Clinic. He told me he didn't think I was having anxiety problems. He ordered a set of random blood tests and a CT of my brain. They all came back normal obviously except the thalassemia part. To help me breath better he gave me a shot to try and reduce the swelling of the constant Sinusitis. It worked for 2 days then back to being clogged up.

At this point he's worried about my dizziness and vertigo. He wanted me to go see a neurologist. I oblige.

We are now in late November of this year and I've take 2 months of work I. The last 3 because my symptoms have been at their worst. I get to the neurologist and we are discussing my symptoms. He says, "It sounds like you have anxiety to a T. I mentioned to him that I had Thal minor and to my surprise he did also. He checked me for strength in my extremities and said he didn't think I had any neurological problems. He said, "Let's run a few blood tests just to make sure."  My thyroid comes back normal, but there is a big problem with my vitamin D test. (Never tested before by either of the previous doctors." My Vitamin D is measuring a 14.3. The normal level it states is 32-80. I'm sorry for the long post, but my question is can my vitamin D be causing all the symptoms I have? And does Thal minor cause a deficiency in vitamin D? I know they say people just don't have low Vitamin D. It has to be caused by an underlying problem.

So I've been dealing with this for a little over a year and literally feel like I'm dying. Any thoughts would be greatly appreciated!

P.S. My doc prescribed me 50,000 iu D2 vitamin D weekly for 12 weeks. If Vitamin D is causing the slew of all my problems, how long does it take to recover?
« Last Edit: January 01, 2016, 07:42:01 AM by Scotty »

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Offline Andy Battaglia

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Re: New to Forum, Need help.
« Reply #1 on: January 01, 2016, 07:52:41 PM »
Hi Scotty,

My first question is do you feel that you need to be on antidepressants? Do you feel the anxiety is severe or are you problems related to your overall health and doctors are attributing that to anxiety? This is very important, as antidepressants can have serious side effects and I'm surprised no doctors have taken a look at this. They can't be stopped cold turkey, so consult with your doctor about being weaned off the drug if you choose to do so.

My first impression reading the story of your trip was that it sounded like you were extremely dehydrated at the time, which is quite common when traveling. I try to stress the importance of hydration with thalassemics, for a number of reasons and in your case, being a minor, it is very helpful to stay hydrated because the blood gets thicker when you're dehydrated, which can cause problems in thals because there is more "junk" in your blood. This is the result of a combination of the pale small red blood cells which can be seen in examination of your blood, the breakdown of these ineffective red cells, and the unmatched alpha globin tetramers that form, because there is an underproduction of beta globin. It may be more than just more water that is needed. I do not carry thal, but I deal with dehydration regularly. For me, it's both water and salt that is needed. I choose pink Himalayan salt because it also has so many trace minerals in it. Much of what you said sounds like possible mineral deficiency, especially magnesium, and the absorption of minerals from your diet is greatly affected by your vitamin D level. Low D is very common in the public, but it is found at even a higher rate in thals. I've been through that also. I had taken 2000 IU D daily for two years and had my level checked. It was only 19 after two years. It was only after taking 5000-10,000 IU daily that I got to a safe range in the high 30's. It's still lower than I want it, but I do much better overall now. This also greatly helped me with winter depression, which had become a serious problem for me and now barely affects me. Vitamin D should be tried before antidepressants are tried, as low D does cause depression.

Please review the suggestions on nutrition at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.0.html
I agree completely with the large dose of vitamin D recommendations. I think once your level gets above 35, you should still take a regular dose of D that is at least 5000 IU daily. You also should be taking magnesium. About 500 mg daily and taken before going to bed at night. Nutrition is key to thal minor and all types of thalassemia. A good diet and the necessary supplements, along with regular exercise can help relieve many of the problems of thal. Low D exacerbates everything, so attend to that and make sure your diet is nutritious. Avoid junk food and processed foods as much as possible. It will take some time because it isn't just low D, which can be corrected fairly quickly with megadoses. It is that D is essential for the absorption and use of so many other nutrients, that you also have to get these back in proper balance and that takes time.

Andy

All we are saying is give thals a chance.

Re: New to Forum, Need help.
« Reply #2 on: January 02, 2016, 07:20:54 AM »
Hi Andy, thank you for responding.

I'm pretty sure my doctors just attribute this to anxiety and not my overall health. Not once did any of them ever consider something was causing my anxiety like symptoms. I have tried to tell them I've been cool as a cucumber and extremely outgoing and friendly my whole life. Now, all I want to do is sleep and stay home because of the dizziness and headaches. I literally saw the neurologist 5 minutes before he ordered the Vitamin D test. Took 11 months of feeling the above symptoms and a dr that has Thal minor to find something off(My vitamin D)

As for the dehydration, this is very possible. I have a problem though, IM NEVER THIRSTY! I literally have to choke down water because I never crave it.

I just started taking a Calcium,Magnesium, Zinc vitamin that has 1,000 mg calcium 400 mg magnesium and 25 mg zinc

I want to take More vitamin D on a daily basis in between my once a week mega dose, but my dr says that's not necessary. I'm pretty concerned with the bottom of the barrel Vitamin D # as I'm still not sure what could cause it to be low. Is it just a magnesium deficiency too? Or can there be a bigger problem?
« Last Edit: January 02, 2016, 07:37:50 AM by Scotty »

 

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