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I don't know which direction to go, please give some direction
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03-23-2006, 05:26 AM
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HysterSister
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Posts: 108
Hysterectomy: October 15th, 2004
Surgery Type: TAH
Ovaries: Removed both
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I don't know which direction to go, please give some direction
It has been over a year since my surgery and back last summer it was discovered my thyroid levels were high normal and was put on meds. Around that time I was also put on additional high bp med. I now take syntest h.s,
antacand hct, diltiaz er andlevothyroxin 100mcg. I have had terrible thyroid problems since or is it? I don't know any more. Last October my neck was so swollen I had to go to the doctor. He found two nodules and increased my med. The swelling went down. He ordered a biopsy and it returned negitive. I have take off from work so much and have so many doctor bills that I can hardly take it. My job doesn't want to hear that I continue to have problems. I hear well I had a hysterectomy and I take thyroid meds and I am ok. And I know plenty of people have hysterecomies and don't have your problems. What is wrong with you? Maybe you are a hypocondriac. Because of all this when I went back to the doctor I pretended everything was ok. I can't afford more doctors and to lose my job. This is the thing. I don't know what doctor to go to and I don't want to go to several before I find the right one. I have this terrible pressure in my neck, especially at night. I have the feeling when I wake which is quite often in the nite, that I had my mouth wide open. The pressure in my neck seems to go down into my chest. I'm thinking there is some kind of pressure on my esophogus (SIC) and I get this sinking feeling in my stomach for just a moment sometimes when I wake. I am really scared. When I list all my symtems that I sometimes get the doctor puts me on anxiety pills. I feel that is just masking the real problem and I don't take them. I am concerned that it will help and if I do have something that should be taken care of I won't know it cause I am so medicated. I hope someone out there can give me a clue. The sisters have always been a world of support when I don't feel I have anyone. I try to ignore the problem for a while so I don't have to hear it from family and co-workers cause I know everyone is tired of hearing it but I have to live with it daily. I am also afraid that with the estrogen and all the other meds it has made something grow. I had a problem with growths on my back when I was started on estratest and then again when I was put on the generic brand altho not as bad the second time around. I just don't know what to do? I know this was a long thread and I appreciate you listening. I hope someone can give me somewhere to start.
Karen
7lb fibroid removed from uterus (TAH) in Oct 04, severe anemia oct 04, bladder cut during surgery oct 04, thyroid nodules Oct 05
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03-23-2006, 06:58 PM
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HysterSister
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Posts: 1,277
Hysterectomy: August 15th, 2005
Surgery Type: LAVH
Ovaries: Removed both
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I don't know which direction to go, please give some direction
Boy Karen, I don't know what to tell you! I took Estratest right after my surgery for about ten weeks. I found that the half strength wasn't strong enough for me so was put on the full strength. Then I started having horrible headaches in my temples, ears, jaws, cheekbones, and yes tension in my neck. And STILL the full strenth didn't quelch the hotflashes and mood swings. Eventually I found a doctor that works with compounding bioidentical hormones and I started on Tri-est. Since then the headaches have disappeared. The problem with Estratest is that it is a combo of a weak form of estrogen (mostly estrone) and a strong synthetic testosterone. So while you might not be getting enough estrogen (and anxiety is a symptom of too little estrogen), you could be getting too much testosterone. It makes more sense to start with one form of hormone and get that balanced and then add other hormones. I am just wondering if you aren't getting enough estrogen? Do you have any other symptoms like hotflashes, mood swings, etc.?
I also have hypothyroidism and take the generic form of Synthroid (Levothyroxine). I once had a goiter too years ago due to the hypothyroidism and it hurt to swallow. The pressure in my neck was troublesome. It may be that you need a higher dose of Synthroid? One thing about taking hrt, especially estrogen, is that it can interfere with your thyroid hormone's ability to do it's job. It isn't uncommon for women taking thyroid hormones to need an increase in dose while on hrt. Here is an article that explains this a little:
http://thyroid.about.com/cs/drugdatabase/f/estrogen.htm
I have had to have my levels tested several times to watch for changes. It is important to have your TSH, free T4, and free T3 levels tested. A good doctor to follow up with this would be an endocrinologist that specializes in thyroid issues. How long has it been since you had your levels tested? Especially since starting on the Syntest? You definitely need a second and even third opinion from a doctor willing to listen to you and take you seriously. Your problems are real and you are right. Before just giving in to antianxiety meds, it is important to find out why you have the pressure in your neck and rule out every other possible cause. I know it is tiring to keep going to different doctors but it is so important if you want to feel better. I can't tell you how many doctors I have been to since my hysterectomy to get the information, answers, and help I need. It is frustrating that is for sure!
I don't know much about blood pressure issues so can't help there. However, that could also be a significant part of your problem that you may need to look into further. Lack of estrogen can also cause high blood pressure in some people. I hope this helped a little. Hang in there and keep fighting until you get some answers!
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03-23-2006, 09:48 PM
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HysterSister
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Posts: 108
Hysterectomy: October 15th, 2004
Surgery Type: TAH
Ovaries: Removed both
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direction
thanks naturebound. Maybe that could be the problem. I was on premarin right after surgery and would have stayed on it except I was moody when on it. Now I really don't have any symtoms except an occasional ache here and there. It's just I can't sleep and that constant tightness in my throat and it goes into my upper chest. When I first started on the estratest it was alright. They did change to the generic and I got the itches but that went away. I have had this feeling in my neck for quite a while but I don't believe I have had it the entire time I have been on the estratest. I can't remember when exactly it started tho. I do know I feel crazy sometimes.
Thanks for the reply. I do feel better just knowing there is understanding and maybe some answers somewhere.
Karen
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03-23-2006, 10:18 PM
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HysterSister
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Posts: 58
Hysterectomy: November 8th, 2004
Surgery Type: TVH
Ovaries: Removed both
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I don't know which direction to go, please give some direction
Have you been checked for sleep apnea? I found out I had it when I was recovering from they hysterectomy. Maybe that is why you think that your mouth is open at night and also maybe the full feeling in your chest area. Do you sleep with anyone at night (like your husband) that could tell you if you stop breathing at night for several seconds and then gasp for air and begin breathing again. Also the sinking feeling when you awake sounds like anxiety, in which case a mild anti-depressant might be in order. You need to be honest with your doctor so that she can evaluate your situation with all the facts. Hope you feel better soon!
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03-24-2006, 12:47 PM
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HysterSister
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Posts: 2,616
Hysterectomy: December 14th, 2000
Surgery Type: TAH
Ovaries: Removed both
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I don't know which direction to go, please give some direction
Hi Karen... I was asked to stop by and see if I can be of some help... You poor thing. It's really hard on us girls that have thyroid problems and hormone problems to get all this figured out. It is acheivable though so there is hope...and it shouldnt cost you a fortune to get it straightened out.
Can you tell me whether your thyroid condition was diagnosed as an autoimmune problem or not? What were your last lab readings and have you had new labs done since starting the new estrogen?
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03-24-2006, 04:12 PM
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Guest
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Posts: 13
Hysterectomy: September 8th, 2005
Surgery Type: SAH
Ovaries: Kept 1 or both
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I don't know which direction to go, please give some direction
Don't give up trust your gut instinct, if you think there is something wrong you have to keep searching. I have resently been very allergic to alot of meds but have tolerated hrt implants very well. Check out some websites for estrogen and testosterone implants they really work on energy,sex drive and general WELLBEING which is all we really want.
Don't give in and good luck.
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03-25-2006, 06:19 AM
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HysterSister
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Posts: 108
Hysterectomy: October 15th, 2004
Surgery Type: TAH
Ovaries: Removed both
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direction
Hi Brenda:
Well, looking back there were sometimes weird and subtle changes in my body over many years. I began getting foggy back in the 80's but in wasn't constant and I just felt dumb. Didn't know what was going on. I have always had some kind of period problem altho nothing like later in life. Lower back aches that didn't seem associated at period time. Anti-inflamatories would take it away. Around '96 I got severe psorrisis on my hands and elbows. I then was diagnosed with high blood pressure a few years later. I would also noticed a a few brown patches appearing on my face that would become very dark during my period, weird huh? This started in the '90's .Dermatologist couldn't remove it. After my hyster is lightened considerably. It is now getting dark again, coworkers noticed. Blood pressure had been increased several years after first starting on them then almost a year after surgery I had to have it done again, giving me a second pill. Around the time I had my bp med increased I mentioned the weight gain around my middle and dr said he can see where my thyroid test showed high normal and gave me synthroid 50mcg. My body really seemed to go out of wack. I was feeling bad. I went to another doctor but not until after I stopped taking all meds it scared me so bad. Then my neck swoll and new doc said I had hirisimotto (sic)and increased my med. neck did go down, biopsy was done ,there was two nods felt biopsp done , neg. I keep feeling pressure and aches in my neck. Sometimes all the way around it. The pain reaches into my chest and sometimes my upper back. It is much worse at night. Sometimes when I wake my arm has a achey feeling in it. and hands stiff. Eyes dry, my stomach is big and squishy.
Thanks all for your kindness and concern. I really need it right now. These problems make a person feel very much alone. I had a thyroid panel done in February before the biopsy and after increase of thyroid med to 100mgcg
Karen
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03-25-2006, 07:05 AM
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HysterSister
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Posts: 2,616
Hysterectomy: December 14th, 2000
Surgery Type: TAH
Ovaries: Removed both
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I don't know which direction to go, please give some direction
Karen was it hashimoto's that you were diagnosed with ? If yes, this is an autoimmune attack on your thyroid and is a whole new ballgame. I have hashimoto's thyroiditis and when it acts up it causes my goiter to swell in my neck. At times it feels as if there is something stuck in my throat it swells so large... and until my body calms down there isnt much that they can do for me.. We do make some temporary adjustments to my meds when this is going on though to compensate for the autoimmune attack while it is happening.
Thyroid labs are very tricky for ladies that have autoimmune thyroiditis. Mainly because its hard to get a really accurate reading on us because of they autoimmune factor.
A good doctor is imperative and really hard to find at times so you are going to have to educate yourself and probably your doc.
As far as "normal" lab readings.... Normal is a very large span and while you may be normal and feel well at lets say 3.7, normal for me is 0.3 . At 3.7 I am having major symptoms and feeling awful. So, the key is to keep adjusting levels until you feel "normal" again. Sometimes its hard to remember what normal was but with each adjustment you should feel better and at the very least adjustments should be made until the pressure in your neck is gone.I suspect you probably have a goiter also from the autoimmune attacks on your thyroid gland.
I am not a doctor, and can only give you my personal opinion based on MY own travels through the jungle.
I am a huge proponent of bio identical hormones. They are biologically identical to what you own body makes so it stands to reason that your body should be able to utilize them better. I also do not like combined hormones because its hard to make adjustments on each individually.
Have you considered going to a patch or a compounded gel or cream for your estrogen? Most compounding pharmacies can make you a compounded intravaginal hypoallergenic gel for your testosterone application also. This helps tremendously in keeping the vaginal area in good health. Keeping them separate would aid in being able to adjust them indiviually as needed for different symptoms.
I would bet that your insomnia and anxiety are probably related to your thyroid health. You probably are not on a high enough dose of thyroid meds for one. Especially if you have pressure in your neck.That is a huge red flag for your thyroid meds needing to be adjusted. The first thing to do is let your doc know that you STILL do not feel well and that you would like to make an adustment in your meds.. With every adjustment you should feel better. Mind you, adjustments do take a couple weeks to get the full effect. If you feel better but still not 100% ask for another adjustment... Your not on that high of a dose for a doc to be concerned about negative issues. Anything higher than 200mcg and then they start watching for bone density issues etc so they dont like to prescribe higher than that if it is not needed.
Make a list of your symptoms. As you make adjustments, mark off what has gone away and what is still there. It will give you and your doctors a better idea of what hormones are needing to be adjusted according to the symptoms that you still have. Plus, if you bring a list with you, you will remember everything better than trying to explain while in the docs office because you will NOT remember all of our symptoms at that split moment that he asks you and it will leave you both feeling frustrated when he does nothing because he only has a vague picture of what is going on.
Hugs
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03-26-2006, 06:52 AM
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HysterSister
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Posts: 108
Hysterectomy: October 15th, 2004
Surgery Type: TAH
Ovaries: Removed both
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direction
Brenda it is hashimoto's. Does this mean that I will always have to go thru these problems even tho I am on meds for it? I was under the impression that once i was on meds that hashimoto's was no longer a problems. I would just have to keep on the med to give the thyroid gland what it needs.
My neck is so tight it is now hurting in the day also. It is so hard to get the doctors to listen. I was told the encro that he never heard of it hurting all around the side and back of neck because of the thryoid. The doctor before just looked at me like I was a puzzle and my internest quietly called in a anxiety med and said there was something there that would help me. Makes you feel like it is a shame to have problems. If it is associated with anxiety it is only the under lying problem. I don't want a bandaid unless it is needed. I first want to get to the main problem and go from there. I am also loosing energy again and there for awhile I was feeling pretty good.
Thanks everyone for the input. It really is wonderful to know that your not alone.
Karen
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