Newly diagnosed .... Looking for some guidance

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi I am new to this ... I am 51 yr old femail and was just diagnosed via voice mail with Graves Disease ... NICE I know ... I have been so tired and not wanting to come off the couch for the last few months.  I have just been chalking it up to running my own business 24/7. 

There is no saying how long this has been going on because I just got health insurance after 3 years of not having any.   GP ran routine bloodwork in DECEMBER 2014 that showed low TSH 3 Gen of 0.07 ... Ultra sound was then ordered with uptake scan, this showed 3 nodules on my thyroid. 

I have been on antidepressants Zoloft for over 20 years and have also been diagnosed with psorias and eczema on only my hands and feet.   I have noticed the redness in my calves for the last few years especially after a beach day.  I have ALOT of bladder infections that do not respond well to antibiotics, and have frequent mouth sores on my lips.   The puzzling fact is that I have GAINED about 45 lbs in the last year ... I thought you were supposed to LOOSE weight!

I have been to an endrocrinologist and my levels are showing TSI 452 and TSH 0.26.  My TPO, T4, T3, T3uptake FSH & LH are all in the normal range .

My eyes are NOT bulging at this time and I pray that will not happen... they are scratchy and dry and blurry all the time though. I thought that was due to HOURS and HOURS of computer work.    I do wear bifocal glasses for many years.  I am VERY concerned about the eyes ...

 

The endrocrinogist is Tapazole (methimazole) 5mg 1xd

I guess I am just looking for some guidance as I am a bit scared about the long term prognosis with this ... I would love to feel better but am scared to death that I will wake up one morning with double vision or bulging eyes not to mention MORE weight gain... any advise is appreciated.  THANK YOU

 

0 likes, 6 replies

Report

6 Replies

  • Posted

    just a thought do you take a lot of artificial sweetner aspartame 

    a lot of people have been diognosesd with graves disease wrongly and in some cases

    the symptoms have been down to this artifcial sweetner in drinks food and medications, worth a thought to check what your consuming if anything.

    and your right by text thats terriable .hope your sorted soon .

    Report
  • Posted

    That's a pretty low dose of meds.  I started on 10 mg once a day.  Though my FT3 and FT4 normalized rigtht away, my TSH would not rise from less than 0.001 until I added vitamin D and L-Carnitine to my treatment regimen.  This was based on a research paper I read by an endocrinologist in Italy that showed that hyperthyroid patients benefitted from the addition of L-Carnitine to their treatment regimen.  I then took Acetyl-L-Carnitine and my TSH really rose quickly.  I think hyperthyroid patients lose a lot of vitamins and minerals from their system which need to be replace.  Also autoimmune diseases have been known to be caused by a "leaky gut" and change of diet avoiding sugar and gluten is also very helpful.

     

    Report
  • Posted

    Hi there,

    I'm sorry i'm not able to give you loads of advice, as i'm fairly new to being diagnosed myself with Graves Disease but thought i'd just drop you a mail to say your not alone and given the right medical treatment and support from professionals and guidance/support from other sufferers, you can manage this and given time hopefully be ok, you must be prepared to give yourself 1-2 years possibly to be stable in your Thyroid. It does sound that you've been through the loads and prob been un-diagnosed for long long time, ensure you get your Thyroid checked regularly with blood tests to ensure you are stable, give up smoking ASAP if you do, that will help your eyes in the long run!!! That piece of info is crucial if you do smoke. I only found out i had Graves Disease when one day recently, i just started to see double in my upward gaze, and had no idea what was wrong? This has now developed into looking forward (and i now cannot drive and work is a struggle, so i genuinely understand your fear!!!) i'm living in constant fear, in fact i'm terrified it will spread and get worse looking down and/or going into both eyes, i'm scared every time i think about it, and unable to share my deep fear with anyone as i feel they can't understand. Go to an eye hospital, idealy Moorfields in London if you are near. They are the best in the UK. Surely they can do tests, but check all other auto-immune tests, speak to GP for that. Maybe you didn't need the anti-depressants if it was a thyroid problem from 20 years ago? But i too hope you get stable and don't develop eye thyroid but if you do, apparently it has a life cycle of approx 12-18 months, so as worrying as it is, it should burn itself out...eventually, that is what i am led to believe and pray that to be true? I'm trying to keep positive but easier said then done but please do keep as positive as possible. Good luck and all the best.

    Report
    • Posted

      Matthew thank you for your kind words and taking the time to respond. I feel I have quite a long road ahead of me

      From what I have read I am currently contemplating A fully holistic regime. I believe also this is been going on for many many years and now has manifested itself and lots of other ways I need to get past The word of diagnosis and work towards finding what is right for my body I also know it is going to be difficult to change things and I've been accustomed to most of my life I believe a new mindset is in order and that alone scares the crap out of me ! LOL.

      Report
    • Posted

      No problem at all, kinda helps to speak with others experiencing similiar things, but do you currently smoke? i've had a complete life turn-a-round, I now don't smoke at all and very rarely drink (in which until recently i used to do both in excess) and also now go to the gym more than i ever have, so there are benefits lol but jokes aside, i'm petrified of thinking what might happen to my eyes and agree with you, it's definately going to be a long road but you have keep monitored, keep healthy as possible, take your medication, seek advice as you are, ie/ do you still need your anti depressant meds now your taking thyroid meds? I need to do more research myself on herbal/holistic methods too. Good luck artsygirl
      Report
  • Posted

    It is good that your case is not very severe, your T4 and T3 being in the normal range, so you don't have to take more Methimazole (MMI) than just the one small pill per day.  Was the test testing Total or Free T4 and T3?  Usually they test Free T4 but sometimes only Total T3. [Since your numbers are not far off, I would think this has not been going on very long.]

    There are several things you mention that I can identify with, mostly before I was diagnosed at age 60:

    1. At age 38, while pregnant with my 3rd child, I was too tired to get off the couch.  But I have always been too tired to go into business for myself.

    2. Between the time I had my 0.01 results on a TSH test and the time I saw an Endocrinologist, I had my FreeT4 tested and shown to be 8.9, just a bit above the normal range (0.8-8.0).  [I am going from memory, not rechecking my actual numbers].  The GP ordered an uptake scan, but said I didn't need meds at that time and to see him in 3 months. This was on a letter he sent me and the part about seeing him in 3 months was highlighted, but at the time, I thought it was crossed out, and didn't make the follow-up visit until about 6 months had passed. [mental confusion was also a symptom.] After the scan with iodine, I felt great. But I don't remember the specific outcome of the test.

    3. When I was complaining about my symptoms, being tired, weight gain, etc. around age 45-50, my doctor wanted to try me on antidepressants, prescribing Paxil which made my sleep schedule erratic, and I developed an aggressive attitude with a very apathetic attitude as well.  I stopped the Paxil and refused the next antidepressant.  He finally persuaded me to take Prozac long enough for me to convince him it was not helping my symptoms. Just in the last year I was put on Wellbutrin, though, which helped a great deal, but then I still went through a time of increased depression so Zoloft was added to it.  Within the month I was having much worse symptoms with it.  My Wellbutrin dose was increased instead, I stopped estrogen treatment which was making me worse, and now I'm fine.

    4. I had a lot of bladder infections, and vaginal infections that would appear to be bladder infections.

    5. I had eczema on my legs which was treated with a cortizone type cream.  I also had one episode of mouth sores.  The doctor said it was "Johnson Disease" and gave me something for it that didn't really help much.  I considered that I may not have been getting enough (hardly any) vitamin C, so I tried improving my intake and the mouth sores went away.

    6. Up until age 38 I was usually very thin (exculding pregnancies) at 132 lbs, 5' 6" tall. From age 38 to 59 I gained 65 lbs.  The weight gain was never dramatic, and it usually followed a weight loss.  I would lose 5 lbs and gain back 10 through most of that time.  In May 2008 I started a diet that emphasized healthful foods and actually increasing calories, if one were to count them at all.  I lost about 12 lbs over 3 months, but I had turned 60 in July and had the TSH test at practically zero.  At the end of the month, I also had a colonoscopy, which disrupted my diet and I started to regain the lost weight.  The most I ever weighed was about 212 lbs.  The MMI can make you gain weight, but more so if you have to take higher doses.  Personally, I still think the diet I was on was good.  It was to have 3 meals and 3 snacks per day.  Each meal and snack was to have a glass of water, All meals and snacks except breakfast were to have a vegetable.  All meals were also to include whole grains, protein, and fruit.  Usually having the fruit as a dessert, but other sugar sweetened desserts could be eaten if you were not "comfortably satisfied".  Artificial sweeteners were out, as was alcohol and any caffeine.  I called it "the five finger diet" because you could count the foods and water on the fingers of one hand.

    7. My eyes were never bulgy but I have had double vision since I was about 14 years old.  One eye was operated on to fix the muscles when I was 17.  When I was 30 I was having more problems and my vision was improved with prizms in the lenses of my glasses.  The amount of prizms was increased from time to time after that. I got bifocals when I was 60, but the prizms were geared to distance vision and seemed to be wrong for close work that I did much of the time, including hours and hours of computer work.  My eyes also got dry, etc. The double vision got much worse at the end of 2008 and I went to an eye specialist in 2009 who diagnosed the Graves' Disease.  The endocrinologist my doctor referred me to could not see me until July so in May my doctor sent me to one who could see me right away.  That was when I was put on MMI 30mg per day, half in the morning and half at night -- so that was 3 pills each time.  I was given a beta blocker as well and instructed to stop it after one month and reduce the MMI to 2 pills each morning and each night, then to see him after the second month.  Taking the MMI was always worse for me than the disease, according to how I felt, but my heart rate of around 130 beats per minute settled down.

    Since then I have seen 3 more endocrinologists.  After 2 years with the first, I refused the medication and cancelled my appointments. and had a pleasant summer.  I was practically forced to go to an Endo again, so I went to the one my doctor had originally recommended.  He was better, but the MMI still bothered me.  I was started at 5mg 1xd then but increased to 2xd before I really began having a difficult time and was finally able to decrease the dose again.  After the first decrease, my TSH shot up from zero to the middle of the normal range.  The next time my TSH was above the normal range and the endo decreased the amounts again.  He had me cutting my pills in half and taking 1.5 a day, then different amounts on different days of the week to allow for only a slight decrease in the weekly amount. After that the endo was more reluctant to allow any more decreases, but I decreased it myself and informed him later what I had done.  He approved it retroactively because my TSH stayed in the normal range.  I went off altogether in December 2013.  I felt miserable because there was no more MMI to decrease and feel better.  My endo would not prescribe supplements.  My FT3 was very low and my FT4 was about mid-range.  I went to Endo #3 but didn't get any help there either, except that Endo #2 refused to see me again.  For that reason my new GP decided to treat me for hypothyroidism offering me several choices and I chose Cytomel, aka Liothyronine or L-T3)  I did well on it for about 4-5 months adding Levothyroxine in the last 6 weeks until my TSH fell to zero again.  Then I had to pick another Endo.  I have seen him for a year now.  He took me off the supplements; my TSH became normal, but I felt horrid again, until my GP put me on Wellbutrin which seemed to restore me back to normal until I started the estrogen treatment and got horrid PMS-like symptoms with a lot of nervous tension.

    The bulging eyes comes from the autoimmune response in the disease and not from the thyroid itself.  The auto-antibodies attack the same protein in the eye muscles as in the thyroid.  For that reason RAI is not usually recommended if there is any sign of eye bulging.  Sometimes they recommend surgery anyway.  I refused either, having been first diagnosed before they recognized the association between RAI and worsening of the eye problems.  I refused because I knew they could never restore my thyroid again and I never trusted them to supplement my thyroid hormones adequately afterwards.

    I had a second eye muscle surgery in December 2009 which really didn't help at all because the surgeon did not allow for the fact that the previous surgery had already corrected my right eye to the greatest extent possible.

    I am now 67, wear reading glasses with prisms all of the time.  I drive, mostly locally, looking over the top of them and shutting one eye at a time.  I also try to stay in the same lane of traffic most of the time, don't go on unfamiliar routes and park by driving straight through one spot to park in the facing one but with me facing out so I can drive out forward instead of having to back up.

    I also learned from Linda here about the Acetyl-L-Carnitine which I have taken about 6-9 months.  If I miss even one dose I notice more difficulty with my eyes and also with bladder control.

    Even though I have no direct advice for you, I hope you can profit from my experience.

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up