New to Board, Graves

[critterz]

My story has been a rough road. I was not diagnosed for over a year with terrible symptoms! My legs hurt really bad and I contributed that to back problems, shaking I thought was nerves, etc. In any case, I had a doc that never even did a blood test, just said she didn't know why I was having symptoms! I changed docs and was diagnosed in 2 days! In the meantime, I was treating my back/leg issues with ibuprofen and blew my stomach up! They did emergency surgery and sent me home with thyroid meds but did not tell me what they were for so I was afraid to take them. The new doc put me on them immediately and I had RAI last week. I am so relieved to feel "normal" to some extent again! My biggest issue is lower leg pain that effects me at work as I walk alot. The rest, I can deal with now that I know what it is. I am taking D3 and Omega3 to try to help with that but it is not doing much. Any suggestions for leg pain?

[Andros]

My story has been a rough road. I was not diagnosed for over a year with terrible symptoms! My legs hurt really bad and I contributed that to back problems, shaking I thought was nerves, etc. In any case, I had a doc that never even did a blood test, just said she didn't know why I was having symptoms! I changed docs and was diagnosed in 2 days! In the meantime, I was treating my back/leg issues with ibuprofen and blew my stomach up! They did emergency surgery and sent me home with thyroid meds but did not tell me what they were for so I was afraid to take them. The new doc put me on them immediately and I had RAI last week. I am so relieved to feel "normal" to some extent again! My biggest issue is lower leg pain that effects me at work as I walk alot. The rest, I can deal with now that I know what it is. I am taking D3 and Omega3 to try to help with that but it is not doing much. Any suggestions for leg pain?

So you had surgery to remove your thyroid and then follow-up w/ RAI? Did you have thyroid cancer? I am not sure I read all this correctly. So if you could set me straight.

My feet hurt awful w/ Graves' so I can feel your pain. How long have you been on thyroxine replacement and how much are you on?

Also, are you taking any Statins and/or Quinalones (such as Cipro or Fluorquinalone) as these products can cause horrendous tendon pain and tearing of the tendons.

Have you had a doctor check you for PAD (peripheral artery disease?)

Did you have a lab test that showed you deficient in Vitamin D? I am glad you are taking Omega III. For better results, consider taking some VI as well. I like the Black Currant Oil as it has an extra enzyme the other Omega sixes do not have.

Welcome to the board.

[critterz]

I'm sorry if I was not clear. I did not have thyroid surgery. I was diagnosed with Graves a few months ago and was placed on PTU and Toprol. This helped alot and eased all symptoms. I had to quit taking the PTU for a week while I had the RAI. The pain in the lower shins and feet came back and although I am back on the meds, it is not going away. Makes it difficult to walk, especially stairs. I just had the RAI last week so they have not placed me on thyroid hormone replacement yet. Hope this clears things up. Thanks for responding. I have found more info on this forum than anywhere else on the web and it has been very helpful!

[Andros]

I'm sorry if I was not clear. I did not have thyroid surgery. I was diagnosed with Graves a few months ago and was placed on PTU and Toprol. This helped alot and eased all symptoms. I had to quit taking the PTU for a week while I had the RAI. The pain in the lower shins and feet came back and although I am back on the meds, it is not going away. Makes it difficult to walk, especially stairs. I just had the RAI last week so they have not placed me on thyroid hormone replacement yet. Hope this clears things up. Thanks for responding. I have found more info on this forum than anywhere else on the web and it has been very helpful!

Okay; since you had RAI, why are you still on the PTU? And have you had any labs since you have had the RAI?

I understand the pain; believe me. I could not walk. It felt like my feet and ankles where just smashed to smithereens. We will get to the bottom of this if you don't mind my asking you a few questions.

[critterz]

Of course you may ask questions! I am here to learn about this disease as well as help others. To answer the question you asked, I had one lab done since the RAI. They have me on PTU and Metoprolol (for heart palpatations).
As I understood it, I am still on PTU but at a lower dose due to the fact that the thyroid will "dump" alot of hormone as the cells die so the PTU should help alleviate the hyper symptoms.

[critterz]

Andros, I just reread our thread and realized that I had not answered some of your questions. PAD- I was tested about a year and 1/2 ago but that turned out to be tarsal tunnel. I found a thread on here where leg pain is apparently an issue with Graves. I am on the following meds: PTU- 50mg,
3x daily, Metaprolol 50mg, 2x daily, Cymbalta 60mg, 1x daily, Tramadol 50mg, as needed and sometimes Hydrocodone Apap 5/500 mg, as needed.
The leg pain seems to stay in the same locations. Left leg pain is restricted to just the lower front shin. Just to touch it is painful! Also left foot. On the right side pain is located in foot and right hip/thigh. I dealt with these leg pains all summer because I thought it was due to my degenerative disc in my lumbar area but I had spinal injections for that and it did nothing for it. I am now convinced that the pain is due to Graves as it went away when I first started on PTU. Endo stated that the pain was part of Graves but they didn't know why. My Calcium levels were tested but not Vitamin D. I started on the D3 because of what someone wrote in on this forum about it helping. The Omega, I take because of all the benefits of it. Any other questions are welcome, feel free!:confused0031:

[Andros]

Andros, I just reread our thread and realized that I had not answered some of your questions. PAD- I was tested about a year and 1/2 ago but that turned out to be tarsal tunnel. I found a thread on here where leg pain is apparently an issue with Graves. I am on the following meds: PTU- 50mg,
3x daily, Metaprolol 50mg, 2x daily, Cymbalta 60mg, 1x daily, Tramadol 50mg, as needed and sometimes Hydrocodone Apap 5/500 mg, as needed.
The leg pain seems to stay in the same locations. Left leg pain is restricted to just the lower front shin. Just to touch it is painful! Also left foot. On the right side pain is located in foot and right hip/thigh. I dealt with these leg pains all summer because I thought it was due to my degenerative disc in my lumbar area but I had spinal injections for that and it did nothing for it. I am now convinced that the pain is due to Graves as it went away when I first started on PTU. Endo stated that the pain was part of Graves but they didn't know why. My Calcium levels were tested but not Vitamin D. I started on the D3 because of what someone wrote in on this forum about it helping. The Omega, I take because of all the benefits of it. Any other questions are welcome, feel free!:confused0031:

I am glad to hear that PAD has been ruled out. No doubt you have peripheral neuropathy and possibly pretibial myxedema. Both cause a lot of pain.

Carpal tunnel and Tarsal Tunnel..............

http://www3.interscience.wiley.com/journal/119287896/abstract?CRETRY=1&SRETRY=0

Then if you put this in your search engine, you will find a lot of info...........

Neuropathy secondary to nerve entrapment by lesions of pretibial myxedema

Put that whole sentence in Google. We all Google, right?

And by the way, we do know why. The ganglia (nerve endings) are inflamed, thus causing the pain.

[Kiddlebit7]

I developed neuralgia 3 or 4 months after I was diagnosed with hyperthyroidism and Graves. At the beginning, taking vitamin D3 helped alot, but later the symtoms worsened so I started on Gabapentin. I still have breakthrough pain, but mostly it's manageable.

[Andros]

I developed neuralgia 3 or 4 months after I was diagnosed with hyperthyroidism and Graves. At the beginning, taking vitamin D3 helped alot, but later the symtoms worsened so I started on Gabapentin. I still have breakthrough pain, but mostly it's manageable.

Hey, Kiddlebit7!! Welcome to the board and thanks for posting. I am sure this information will help someone.

Tell us about yourself. When were you diagnosed? What treatment stage are you in? Anti-thyroid med, RAI, ablation?

[critterz]

welcome, and thanks for responding! By the way, Andros, I have had both carpal tunnel and tarsal tunnel release surgery. Both hands, both feet! I am taking the D3 and I don't know if it is time or the vitamins but the pain is relieved somewhat. At least I don't have problems working now. I limp but I can deal with that! I probably do have some neuropathy but did not have any of this pain until the Graves. I do know that my thyroid must be dying as my symptoms fluctuate and I am finally gaining weight. I have put on 7 pounds. I had lost 30. If only they could figure a healthy way to manipulate the thyroid, it would be a perfect weight loss tool! I withered away to nothing in no time. All in all, though, I am feeling closer to "normal" than I have in a very long time.

[Andros]

welcome, and thanks for responding! By the way, Andros, I have had both carpal tunnel and tarsal tunnel release surgery. Both hands, both feet! I am taking the D3 and I don't know if it is time or the vitamins but the pain is relieved somewhat. At least I don't have problems working now. I limp but I can deal with that! I probably do have some neuropathy but did not have any of this pain until the Graves. I do know that my thyroid must be dying as my symptoms fluctuate and I am finally gaining weight. I have put on 7 pounds. I had lost 30. If only they could figure a healthy way to manipulate the thyroid, it would be a perfect weight loss tool! I withered away to nothing in no time. All in all, though, I am feeling closer to "normal" than I have in a very long time.

I am so glad to hear from you and also to hear that you are feeling much better, day by day. We cannot ask for more!

If you are gaining weight, you probably are going hypothyroid. Get a handle on the diet like right now this minute. Count calories and choose your foods wisely. Pick foods that promote energy rather than lethargy.

[critterz]

Yes, I have gained 8 pounds in the past month which isn't much since I lost 30 pounds. I have not been gaining anymore lately but I am sure I will. I am not overly worried about the weight right now because I need it desperately! I was a walking skeleton! I do plan to join a gym after the first of the year and I do small workouts for physical therapy for back problems. My work is very physical and keeps me active also so I'm not too concerned but will keep an eye on it!

[Andros]

Yes, I have gained 8 pounds in the past month which isn't much since I lost 30 pounds. I have not been gaining anymore lately but I am sure I will. I am not overly worried about the weight right now because I need it desperately! I was a walking skeleton! I do plan to join a gym after the first of the year and I do small workouts for physical therapy for back problems. My work is very physical and keeps me active also so I'm not too concerned but will keep an eye on it!

Good to hear from you and I am glad you are on top of things! How have you been feeling?

[critterz]

Much better, Thank you! I do still have days that are rough, of course, as the thyroid dies. I understand that it releases hormone as the cells die which, in turn, causes me to have symptoms. Overall, I am doing good except for the leg pain. It was really bad today, I could hardly walk. My job consists of alot of walking so it is so much worse when they are hurting. Compared to how I felt before diagnosis and treatment? I feel alive again!:) I wondered if I would ever have a sense of "normalcy" again.

[Andros]

Much better, Thank you! I do still have days that are rough, of course, as the thyroid dies. I understand that it releases hormone as the cells die which, in turn, causes me to have symptoms. Overall, I am doing good except for the leg pain. It was really bad today, I could hardly walk. My job consists of alot of walking so it is so much worse when they are hurting. Compared to how I felt before diagnosis and treatment? I feel alive again!:) I wondered if I would ever have a sense of "normalcy" again.

I am so glad you are feeling better. In addition to the peripheral neuropathy that most of us have with thyroid disease, you may wish to consider getting your ferritin checked for if your iron stores are low, that can cause a lot of leg pain.

Your hemoglobulin can be fine and the ferritin can be in the basement. Ferritin is the protein that stores iron for cellular uptake. Free iron, you might say.

http://www.chemistry.wustl.edu/~edudev/LabTutorials/Ferritin/Ferritin.html

[critterz]

First I heard of the Ferritin. You also mentioned "energy foods", can you be more specific about that? I will look into the ferritin angle for sure.

[Andros]

First I heard of the Ferritin. You also mentioned "energy foods", can you be more specific about that? I will look into the ferritin angle for sure.

Simple carbs make one sluggish and lethargic. Complex carbs and protein boost energy.

I hope you get that ferritin lab test. If you do, let me know the result and range, please?