[Jules]

in reply to: methimazole makes me feel worse #1064683

Let me clailrify I am on no thyroid meds because I am allergic. Endo said with this reaction to MMI it is the anti thyroid med. I feel all of the symptoms of the graves with the exception I am on the long acting beta blocker until I get back from vacation on 9/9. There are only 2 choises for me now and surgery is winning put. Just need to discuss my issues with the endo regarding the RAI.

[Jules]

in reply to: methimazole makes me feel worse #1064680

I wanted to let everyone know that my concerns about being allergic to the MMI was not in my immagination. I learned a valuable lesson this weekend. If you feel that you are not getting through t o your Dr. Go else where. There are ones out there that do know about this disease.

Ok so Here is an update. I just got out of the hospital after 3 days. I woke up Thursday Morning with a hoarse voice and soar throat. Go to work and by 1 pm I am D-U-N done go home take a long nap. I wake up Friday morning thinking that I have a sinus infection and try to clear the phlem out of my throat. I start chocking and can not breath unless my head is on the floor and my butt is in the air. I have my hubby take me to the ER (90 miles south of my home because I do not trust the Endos up in my area) and they check me in thinking lyargniits (SP?)

I wait my turn then tell them that I am recently diag with Hyperthyroid Graves and they start running test. CT scan showed Major inflammation in the throat. (INFECTION). Blood work came back within normal range on the WBC 4.4 in the normal range. they admit me put me on major IV Drugs for the infection and inflammation.

Last time I took my MMI was Thursday Morning. Hospital on Friday morning. With all of the drugs they had me on IV wise I was feeling no pain by Saturday afternoon. I had asked my Dr’s what about my MMI because I was starting to feel the effects of HYPER issues. They said go ahead and take it. so 4 pm took it and by 6 pm I am in major pain in the throat calling for pain drugs.

Sunday morning I tell the ENT what happened and he contacted the Endo on Call. Endo stated DO NOT TAKE THAT MED AGAIN! Allergic. They tested my WBC on Sunday to see that it was through the roof. WBC 14.5
The Endo asked about all of the symptoms that I have been having on the MMI Hives hoarse voice sore throat etc…

He said that because of the allergy my infection was not showing on the blood work because it was slamming my WBC down. Not allowing my body to fight the infection. I have been removed from the MMI and I am now off the propanolol and on a longer extended release for the rapid heart rate and trying to figure out what to do next. (I am also on 2 antibiotics Steriods. etc etc etc…

So I guess the moral to this story is to trust your instincts and make someone listen if what they are telling you does not jive with what you are feeling. I love this new endo he has been my hubby’s endo for years only thing is he wants me to have RAI and I am not sure what I want to do yet.

[Jules]

in reply to: On MMI and I am concerned I am going Hypo #1064296

I just did the mathe it has been 6 weeks since starting 15 mg of mmi 2weeks then 20 mg mmi for 3weeks endo left a message that the t3 t4normal go to 15 I thought that was high I called reg and they said go to 10 mg I felt some what normal for 3 days now I feel like crap. I really believE drs are full of crap because 3 weeks ago the endo said to go to 40 mg. I see that we are the ones to be proactive and stay on top of drs. Is anyone elso feeling the rapid heart while there going from hyper to hypo? I really hate this. Going on a big vacation in two weeks. Ugh

[Jules]

in reply to: On MMI and I am concerned I am going Hypo #1064294

Thank you venting is what got me B-otched last night. I thought he understood. I guess I will have to hide in my hole once again. Ugh I hate this. Labs take about 5 days to get. I do have a blood slip for next week but I think I will go today. Thank you for your help.

[Jules]

in reply to: On MMI and I am concerned I am going Hypo #1064292

O lord Help me: My hubby looked at me last night and point blank "you have changed and not in a good way" I really did not realize how I was being other than someone at work really set me off. I hate this. Does anyone know that if you do the surgery that this gets better? I mean the symptoms of GD? I have never been moody nor B*^%#y but I am now.

[Jules]

in reply to: methimazole makes me feel worse #1064673

I’m new to this as well I have been on Methimoazole for almost 4 weeks now. I have had some issues with (Sore throat, Head aches Blood work is changing etc…) it but I am staying the course. After 2 weeks on it I saw the T3 going down but my TSH is still .006. The Meds and the Disease are both weird, because we are so in tune on how we fill, we have started on something that our bodies have to get use to i guess.

All doctors endos and primaries are use to seeing more Hypo than Hyper ( or at least that is what I have been told) so our symptoms they do not understand what or where they are coming from. My best suggestion is stay on top of your health care and don’t let them tell you it is all in your head because most likely it is in your Metabolism.

This website has made me sane again in this insane world I have found myself in (Graves).

My endo – even though I am changing her soon. said that i was to take the 20 MG all at once in the morning my primary doc had me spread out on 5mg 3 x a day.

I am keeping on my toes on any changes and reporting them. If they tell me that it is not this or that I research it and get the info about my symptoms, I have even sent in a Med Log showing that I was not crazy and were because of this or that and this made them do a blood test to figure it out. I have finally come to the realization that the dishes can wait the laundry can wait. It is time to take care of ourselves when we are first told we have graves. It is a process.

I hope you feel better soon, Today after almost 4 weeks I feel a little bit better, hopefully tomorrow with be better than today. Also waiting on the Nero Opth for the TED. Good Luck Marta1234 and stay in touch.

[Jules]

in reply to: Just found out I have Graves 3 weeks ago – Help #1064773

Thank you all for your support. I am very happy there is a place for us to vent ask questions and just plan belong. Anyone have a Thyroid specialist in Southern california and or experiance with the Shirly Eye center? I live noth of San Diego County that is lacking for specialist in the thyroid. They are diabetic Dr’s. Yest they might know Diabeties but have not clue about Hyperthyroid and Graves. It is furstration I am use to being incharge of my medicals. I know when I don’t feel good and usually know what I need. I have had major ear infections my whole life. I am in the "I know i can beat this GD" phase right now. I refuse to be treated as a number.

Regarding my experiance with the endo. I was diganosed almost 4 weeks ago by the primary. Then I scheduled an appoint with the group Endo. She was all about the numbers and made a comment why did my primary order these indept h thryorid panel. I told her it was because my tsh came in at .006. the throid panel that came back as t4 was 17.1 uptake was 41 and free t was 7.0. All WBC and RBC and liver was fine. alwas have been.

When I called the endo because of the pounding chest they told me to get a blood test. I did and it came back with RBC came back as high, WBC are dropping (still with in the normal range) as well as my neutrophils absolute is dropping in only 2 weeks of the meds. She increased my med’s to double the dose so from 20 mg to 40 mg. She did see signs of TED even with out me mentioning the dry gritty eyes and having dizzy and headachs when I drive. I had the MRI Friday. When I was in this week seeing then endo she stated that my thyroid was not large enough to cause my sore throat or hoarseness yes it is swollen but not large enough to do that. Even though i was having the racing puse and was the main reason that I saw her this week they never even took my pulse or blood pressure. Amazing how Endos think that they can see through my skin and know I am fine even though I am not.

My concern is that since i am usually in tune with my body and the sore throat in the moring on waking up is about a 4 on the pain scale and raises during a day up to a 9 that I am having an alergic reaction. I do run a low grade fever daily abot 99 to 100.6. I have a very low tollerance to Medications. I am alergic to alot of things.

I asked the endo point blank is there another med I can take because of the concern about the reaction i am seeing. She stated no. She said We need to do an RAI on you. I told her I am not doing RAI until Ihave done my investigation to see if this is the way to go for me. She was upset and wrote on my file REFUSES RAI.

My current Thyroid is. t4 2.42 tsh <.006 t stim immunoglobin 512 TPO 236 free serum 8.2.

Does anyone know if Shirly Eye Center habve endos on staff with the thyroid clinic an I make an appointment directy with them or do I have to find an endo to refer.

Thanks for your time.

[Jules]

in reply to: Just found out I have Graves 3 weeks ago – Help #1064768

Thanks Bobbi I am looking for a new one. I have been reading all night mostlikely for the sore throat and horsness it started after starting methimazole so I did more reading and I am now wondering if I am having a reaction to it.

[Jules]

in reply to: Just found out I have Graves 3 weeks ago – Help #1064765

Thanks for listening to my rant yesterday. I went to the evil endo today. She was point blank on me stating the "I only deal with the thyroid number and I do not treat all of the symptoms tacacardia sore throat insominia etc… You need to got to someone who does. " I am now researching a new endo for southern California. Oh she also said the horseness and dizzy ess is not from graves. Yea right! I am having eye issues and I get the mri tomorrow.after reading the web all day today I realize that doctors do not explain graves when the diganose it. You are out to fend for yourself. Thanks for this web site now I know I am not alone and that I am not crazy. My primary called me tonight and we discussed things in detail. He knows me and to him I am not just a thyroid number.

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