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in reply to: Is this thyroid or anxiety? #1179188
That does sound difficult sorry you are having such a hard time! My non-doctor guess, is that you aren’t taking the beta-blocker at the right dose frequently enough to keep it steady in your bloodstream. I had the very same things happen when the beta-blocker would wear off in the middle of the night, of course my heart rate and blood pressure would go up, waking me up and of course triggering major anxiety. My doctor advised me that metoprolol and atenolol should be taken twice a day and propranolol four times a day due to their differing half-lives while things are still touch and go. I have my own blood pressure kit and during that time I took it many times a day checking pulse too to make sure I got into the sweet spot and stayed there and that my bp wasn’t getting too low. So that’s my best guess! Now I can’t swear that’s what is happening with you but it could be…hope you feel better soon.
in reply to: What if we never do RAI or TT? #1179114kate1711 wrote:Oh, and if you find one of those “leprechauns”, please share!!Wow Kate you have been through it all, you must be very tough! If you ever have the inclination I’d love to read about your story. This afternoon I saw a rainbow…and I wondered is there a pot of gold or a perfect endo at the end of it:D
in reply to: What if we never do RAI or TT? #1179108Sue, I hear ya many of these thoughts are on my mind too. I’ve decided I won’t have RAI, period, because of the eye risk given that I already have some problems. So that leaves surgery which is a no-go for me right now for many reasons. So that leaves, make the meds work or else for me! I can see a day in the future though when I might have the surgery if circumstances change. I’d still like to keep my thyroid if I can.
I have been awed and dismayed by the systemic level of medical incompetence regarding thyroids in particular I’ve encountered on this journey and discovered I was subjected to in the past when I didn’t know better. The idea of being dependent on a doctor being willing to prescribe me enough T4 and arguing over T3 while I have no thyroid is nothing I look forward to. Even if you find a good doc, they seem rare and can retire or move away. An example of the incompetence I’m talking about, I’ve now consulted three endocrinologists and not one of them chooses to do TRAB testing before attempting to take their Graves’ patients off the meds. And these are doctors of very good reputation in a big city. This kind of thing really really depresses me.
Sorry guys, guess I’m still in ranting mode. I’m sure good endo’s who keep up with the latest thyroid research exist out there somewhere, but they seem like leprechauns to me.
in reply to: Wish me luck-surgery Friday! #1179067Good luck and HUGS to you Karen! You will get through this!
in reply to: Another “I can’t take it anymore” thread :( #1179049Hi Sue, you know I hear ya! I’m glad you got to have the one good day at least though sorry it didn’t last. Also beta-blockers are not meant to be stopped cold turkey, you’ll see a lot about that if you Google it, a rebound of anxiety and blood-pressure will happen for most people stopping them without tapering, same could be true of your tranquilizer too. If that what was going on maybe you’ll get to keep your good days!
vanillasky wrote:For me, I was so nervous when hyper, and couldn’t think about anything but chocolate cream pies which I was devouring in one sitting. Although, I still lost about 4 pounds.Rub it in why dontcha!
A Graves weight gainer here peppernutmeg you are not alone.in reply to: Enough is enough! #1179015Thanks Karen, it’s good to know such a device exists if I get really desperate. Right now I have two different pitches of tone to my tinnitus but it doesn’t bother me too much. Having to say “Whaaaat can your repeat that?” too often to people bothers me quite a lot lately.
Shirley, I’m glad you had a great visit with your daughter and that grilled salmon sounds delicious. You are right life is what we make it. Today life threw some new very unexpected crap at me and made me realize yesterday wasn’t so bad, maybe I need to live in the “now” haha.
in reply to: Enough is enough! #1179012Thanks Karen and Karen!
Karen/Gabe, sorry you are having such a rough weekend. They say thyroid hormone affects every cell and function in our bodies and I guess they mean it. Still, I keep thinking I’ve reached the point that I understand the full impact, made my peace and then there’s something new…
Karen/Vanilla, tinnitus! Yep, I’ve had it for close to twenty years now – fortunately it’s not too extreme – the onset of it matches when I believe I developed subclinical hypothyroidism. My hearing seemed to be unaffected, but lately I’ll be talking to someone hearing them just fine and then suddenly it’s like their voice drops to half volume and I can’t understand them. Sometimes I ask them to repeat, sometimes I just guess what they said aargh, I’m not even 50! I don’t blame you for not wanting an expensive device like that – did the doctor say how sure it was to work? Tinnitus is also linked strongly to thyroid.
in reply to: Enough is enough! #1179009Quote:Deafness is a very characteristic and troublesome symptom of hypothyroidism. Both nerve and conduction deafness and combinations of the two have been reported, and vestibular abnormalities have also been demonstrated. Serous otitis media is not uncommon. Two-thirds of patients complain of dizziness, vertigo, or tinnitus occasionally: these problems again suggest damage to the eighth nerve or labyrinth, or possibly to the cerebellum. Whatever type of deafness is present, there is marked improvement after thyroid therapy. Acute thyroxine depletion caused by total thyroidectomy has no deleterious effects on hearing up to 6 weeks(11). Acquired hearing loss in association with adult-onset hypothyroidism should be distinguished from the sensorineural deafness of Pendred’s syndrome. In the latter, treatment of hypothyroidism does not correct the hearing defect. Night blindness is not uncommon. It is caused by a deficiency in the pigment retinene, which is required for the adaptation to dark.in reply to: adrenal thyroid connection #1178974Thank you all for your replies and links, interesting stuff! I’m having a Graves-brain day so I can’t craft much of a response, but I am convinced to bring this issue up again if I can find a doc open to it.
Karen, the issue I wrote you about the Vitex – for me I noticed a difference in three days, days not months. It can act fast though of course is not guaranteed the same for everyone.
in reply to: My total thyroidectomy journal #1178818Thanks Amy! Your story brings back memories in the couple months before my Graves diagnosis I had brief surge in energy which I did use for walking/hiking and had begun to get in better shape, but then whack, the Graves got me. I’ve been quite couch potatoey since then – I do go out for walks now but go slowly and feel kind of like I’m forcing my legs along for the most part. Maybe not quite a mile. It’s an inspiration what you are accomplishing though I will keep at it!
in reply to: How do you stay calm? #1178946So sorry you are going through this again. What surgery do they want to do? Or is it biopsies and then if they aren’t good they do surgery like hysterectomy right away? As for staying calm I’m sure being tested on that front also so I don’t have the best advice, but escapism helps some – losing yourself in a book or really intense television. Being out in nature can be good too.
in reply to: My total thyroidectomy journal #1178816Thanks for doing this journal it is very helpful! I was wondering what was your level of physical fitness before you got diagnosed with Graves and then before the surgery? I’m wondering for myself how my being a couch potato is affecting all this.
in reply to: Can stress set you back? #1178900I’d say definitely. I’ve had a couple of times when my numbers were improving and I was feeling better only to have something stressful happen and get set back some. Please remember it’s okay to take care of yourself too – you are are going through a crisis time too as well as your husband.
in reply to: I feel like giving up #1178847((((Karen)))) so sorry you are dealing with this and I hope the second opinion reveals a better option.
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