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in reply to: Doctors #1180153

Hi Kimberly,

I opened all of the links. The majority of the Dr’s listed were out of province which would be at least a 5 hour drive. I know that Sunnybrook hospital has an entire endocrine building filled with specialists (as does Toronto General Hospital and Mt. Sinai) but the Dr. I go to now is affiliated with two of the locations so it would be fairly awkward. Also I have found through my medical travels (not sure if it is the same in the States) that Dr’s do not go against one another. The only way to complain about what has happened to me is to either sue them (which is not monetarily possible) or write to the Ontario College of Physicians and Surgeons with a complaint. Generally the committee does nothing but review documentation (seldom will a Dr. ever loose a license) and ask that the Dr. say sorry.

I will have a long chat with my endo. on Monday…I gave her the heads up what I will be discussing with her and have documentation if she requires it. Back down to a .1, some of the anxiety is gone and some muscle pain. I still have a way to go to find that calm place.

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in reply to: Break-neck speed? #1180097

Hi Kimberly

I wish you were around (or at least I knew that you were online) when I went through RIA. The first one was only 5 (not sure of measurement) second one 10. Two different hospitals and no special instructions (diet) except to stay away from people.

Still struggling. I have to use the estrogen patch to help reduce high thyroid and anti anxiety meds (which do dry out my mouth too!) I am going to do my monthly blood work tomorrow. After 3 weeks of .1’s it will be interesting to see if my TSH came up (supressed is not good for me).

Msled

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in reply to: Bulletin for the HOT FLASHES CROWD! #1180136

Hi,

I tried The SSRI route too, but my system does not like them at all. I was totally wiped out for days. also the Dr. did not take my glaucoma into consideration. Most anti depressants can not be taken including lyrica, Cymbalta and gabapentin for nerve pain (shingles et. al)

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in reply to: Thyroxine surges? #1180110

Hi Sue,

The caffeine in the chocolate cookie and tea impacted my heart rate…which has happened before. That is one way that I know I am too high. I am only into week 2 of the dose I took two years ago .1 so I have one more week to go. I noticed the anxiety was not as bad today, I actually went out today and bought groceries and my bathroom breaks have settled a bit!!!

I walked my dog tonight too, muscle weakness and pain but manageable. I have heard that it can take 6 months for the muscle problems to resolve. My GP wants me to have another bone scan done too. I know my endo. has ordered several blood tests as she does not believe that the dose is too high, she said I am hypo and hyper (as my TSH is suppressed with the .112’s) That was driving me nuts!!! A lot of the swelling has come out of my eyes but my mouth is still dry and my gums hurt.

The cookie was worth the heart palpitations though
Marg

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in reply to: Thyroxine surges? #1180106

Kimberly is this also the case when levels drop after RIA.

Marg

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in reply to: Thyroxine surges? #1180105

Made a big mistake tonight…ate a choc. cookie and had a cup of tea!!! ALso flossed my teeth, dry gums = cuts inbetween my teeth. Back to salt water rinses and hopefully Ativan to help me sleep.

Marg

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in reply to: Thyroxine surges? #1180104

Hi Sue,

I have added a part of an estrogen patch (my GP agreed) to help supress my thyroid dose. The dry mouth is a concern especially when I had so much dental work done a few years ago (I can have a panic attack just thinking about dental problems, my biggest fear). I have been on .1 for two weeks now so by next week I should be able to cut back on the estrogen and notice the anxiety/panic attacks to subside. I was on .1’s for well over a year before my levels dropped. I found Kimberly’s comment to be interesting. I did not know that there would be fluctuations. Instead of raising my dose so much (and also blaming everything on estrogen) my endo. should have considered this. Do you know anything about cytomel? I know my endo will not prescribe it nor armour.

Right now I have the energy (too much), anxiety over the heart rate changes, and of course everything else. I went through this in 2002 and did not think I would have to deal with it yet again.

Does your family support you emotionally? I live on my own since my husband died and my sons’ are married and busy with their own lives. I have a couple of close friends who have helped me out during the sob nights or ER visits when my BP and heart rate go through the roof. I am hoping that things settle soon.

Marg

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in reply to: Break-neck speed? #1180094

Barbra and Shirley your lives and mine have crossed at the best and worst of times. I am sorry for your loss Barbra, I lost my husband four years ago after a four year war with kidney cancer which settled in his bones. Shirley thanks for adding more than two cents….any information we can share with one another is vital as ‘we’ know how it feels. You have gone through so much, your strength shows through the words you offer. Thank you.

I did not have to follow a special diet before RIA. The first time the Dr. told me there was no eye involvement so no prednisone…I had OD in 2007 and four corrective surgeries. Odd thing to share my dog has been on thyroid meds since my last RIA treatment (I was told that I needed to stay at arms reach of others and flush more than once and that my dog would be fine!!!).

I am still struggling for the right dose..I was fairly stable for two years then I went from high normal to low normal….several dose changes have made me hyper again!! I think the biggest problems for me right now is the dry mouth and eye swelling (not too say all of the things do not bother me, as we know it becomes all consuming). Unfortunately I have too much time on my hands right now, I am on vacation until Sept. Hope that the next couple of months get me back on track!!
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in reply to: Thyroxine surges? #1180102

Hi Sue,

I am in the same boat, 57 and post menopause. I was told that estrogen def. post menopausal is a contributing factor. The only problem is estrogen blocks TSH receptors (I have found that out through personal experience and by contacting the pharmaceutical companies. When my dose is increased to accommodate the estrogen my whole system goes out of wack. As you have said I have days when I feel well then flu like days. I spoke to another Dr. who told me even though I had a hysterectomy I should be using progesterone too for estrogen dominance. I did that last year without a dose increase and felt well, my endo. did not like my thyroid numbers so the 6 week increases started and the extreme fatigue , emotional problems and anxiety/panic. My increase started with .1 and .112 alternate days and within 6 weeks I was told to take .112 and .125 (4 days a week). I was shaking so much that I was afraid to drive to the clinic for help. My dose was dropped and I started to feel better until my endo told me to increase again!!! I have never taken a dose I was not told to take, this time I had to insist that I drop it or go mad!!!

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in reply to: Break-neck speed? #1180089

I was very interested in reading this thread. I was never given options. The first Dr. put me on PTU’s and told me to come back in three months. I became very ill and was not allowed an appointment earlier to discuss what was happening. My GP took me off the PTU’s as I was allergic to the tapazole and the beta blocker was too strong for me (I guess I was given the standard dose). I was sent on to another Dr. who said I had to have RAI which I did. He put me on .175 synthroid within two months and a strong beta blocker. Turns out the dose was far too much for me and the only thing keeping me from having a heart attack was the beta blocker (hospitalized to find this out). My endocrinologist now sent me for RAI again two years later (which I have been told did the trick). I am now struggling with finding the right dose again. My endo. wants my TSH supressed which makes me really hyper (I could include all of my symptoms but it would be endless…). I have to adjust down for my sanity taking Ativan for the anxiety/panic attacks. I did ask last year when my levels went out of wack (high normal with TSH reading to low normal) to have my thyroid removed but was told there was no point, it is dead. I am not sure about this as when my dose is too high my neck swells on the right side and of course my eyes swell. I have to have one more eye surgery soon. I have been putting it off until I have a stable thyroid level. Not sure when that will happen. I saw my GP today and told her I had to reduce the dose to literally save myself. BP is normal and pulse but muscle weakness, scattered thoughts, insomnia, sweats and skin/hair changes. Also vision is a bit off (maybe from lack of sleep as I saw my eye surgeon yesterday and my eye pressure s fine, I have glaucoma, and optic nerve is fine. Had OD in 2007).

I wish I had been given the options as I am really sure I would have opted for the surgery after having more tests done to confirm the diagnosis. Originally only a TSH and T4 were done and a 15 minute visit with a pamphlet in hand when I left.

Good luck with your surgery, I truly hope you find the right dose right away….
msled

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in reply to: thyroid antibodies #1180115

Thanks for the link Kimberley interesting information.

I will hunt around for studies that involve the TSI antibody test.

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in reply to: Suggestions for burning/dry mouth #1180081

I will check out the list. There are not many endocrinologists outside of the GTA (greater Toronto area). In fact if you have an endocrine emergency its is an hour and a half drive to a hospital that can help with no guarantee someone is oncall to help.
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in reply to: Suggestions for burning/dry mouth #1180080

Thank you for the information Kimberly. I am going to ask my GP for a referral to a new endocrinologist tomorrow. The wait list in my area (right now I travel to Toronto) is 6-9 months. In the mean time my GP can order blood work and hear my ‘complaints’. I had read that cancer patients have their TSH supressed but was lead to believe that my thyroid was now ‘dead’ and it has to be supressed to feel well. The burning mouth problem and everything else adds to the anxiety.

Thank you for your help. I know my sons will not take time to read the forum, I wish they would!!

Marg

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in reply to: Suggestions for burning/dry mouth #1180079

Thank you for the information Kimberly. I am going to ask my GP for a referral to a new endocrinologist tomorrow. The wait list in my area (right now I travel to Toronto) is 6-9 months. In the mean time my GP can order blood work and hear my ‘complaints’. I had read that cancer patients have their TSH supressed but was lead to believe that my thyroid was now ‘dead’ and it has to be supressed to feel well. The burning mouth problem and everything else adds to the anxiety.

Thank you for your help. I know my sons will not take time to read the forum, I wish they would!!

Marg

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in reply to: Suggestions for burning/dry mouth #1180077

Thanks Diane

I have been using the biotene products and flossing most of my teeth, gums are dry and cut easily. I went to my dentist last week (I have some dental implants and the gums are receding!!). He told me to buy sugarless sour lemon candy and chew sugarless gum which I have been doing. I did read that burning mouth is more common with hyper symptoms as well as SS. I am hoping with my dose change that my muscles will not hurt as much (I have always been a distance walker and have been having problems ever since the dose was increased). Weakness in upper legs is putting too much strain on groin and shins.

Let me know what your endo. says. I see mine on the 8th of July. She won’t like what I am doing (my GP does as she sees me all the time). I should have valet parking

Marg

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