Thyroid Issues Anyone?

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Replies

  • LeslieC1970
    LeslieC1970 Posts: 160
    Hi there. First I am really surprised that you were taken off of the medication. I have had an underactive thyroid since I was 17 and was finally given meds at 27. Over the years, my dosage has been increasing but is still relatively low. From what I was told, you stay on the pills for life. Ask to be sent back to an Endocronologist to look at you. I agree with llsand that the test doctors do normally miss measuring the Thyroid antibodies which is where my deficiency is really noticable.
    As to low iron levels, same issue related to thyroid for me. I took kelp to help elevate those levels but it took 3 months and a lot of discipline.
  • hadillon
    hadillon Posts: 2
    I've had Graves's Disease (Hyper Thyriod) and its genetic (my mother and maternal grandmother have had it too). Thyroid dysfunction takes a long time to change and adjust. I had to have my thyroid removed and thought that was going to be the end of the problems...Nope! I currently get bloodwork every 6 weeks (Free T4, Free T3 and TSH). My Endrocrinologist does this because what is "normal" is actually a range. According to the "formula" I should by on a higher dosage of Synthyriod but my bloodwork shows it as too much. Every person has a different "normal". Weight changes really can effect what normal is as well.

    Now I'm onto full hormone testing with the GYN to see if there is any problems with the rest of my levels because the thryiod is the master switch to all hormone levels. Now that the thyroid appears to be stable, its time to see if everything else is normal.

    There is a book called "The Thyroid Solution" by Dr. Ridha Arem, MD and it really is an excellent book on Thyroid and deal with/Fixing thyroid issues. It's got a fair amount of science jargon but still a great book!!

    I've also learned there is a big difference between generic thyriod and synthyriod medication. If you can afford it, take the name brand.

    Suggestions: have all of your vitamin levels and hormone levels check. Look for any other auto-immune diseases ie ceylic. Don't take no for an answer, get a different opinion!
  • mckinney_tr
    mckinney_tr Posts: 12 Member
    I have had Hypothyroidism for years now and while I was at my doctor appoitnment a week or so ago and we were talking about other issues that I have (HTN, Anemia and on the cusp of having Diabetes). He said that losing weight would most likely eliminate the need to continue medications (I'm currently prescribed 2 medications) for the high blood pressure and reduce the chance of needing medications for the diabetes in the future. When I asked him if losong weight would help to eliminate the need for taking meds for the Hypothyroidism he said no and that I would have that illness forever. I don't believe your thyroid mysteriously starts working properly again when you lose wieght. I could be wrong though. But that is what my doctor said.

    My thyroid functions extremely low and he said that because of that, I basically do not have the ability to maintain a sufficient level of metabolism without taking the medication. Therefore I will need to be on it forever.
  • Poods71
    Poods71 Posts: 502 Member
    I didn't realize there were so many different tests and I'm not sure how many I have actually had. I feel that sometimes the doctors don't like to be questioned and like to try and blind you with science.

    Thanks for all the helpful comments and hopefully myself and everyone else who is suffering will get the help they need.
  • ruckerbenton
    ruckerbenton Posts: 94
    I also am plagued with thyroid issues. My though to you...keep looking for a physician who will help. My son received thyroid treatment when he was little from an ENT who managed environmental and food allergies. His idea was that even if the numbers didn't show it that symptoms did! If you had symptom relief with the thyroid medicine on board he kept prescribing it as required. The trick is finding the right MD. You might try to locate a DO in your area. They have some specialized training in alternative medicine so may be able to better assist you.
  • janlee_001
    janlee_001 Posts: 309 Member
    While you might be in the "normal" range for free T4 levels, everyone is just a little different. Jane Doe's pituitary gland might be striving for a level of 1.7, can only get to 1.1, but it registers as "normal" so she doesn't get the medication that would improve her quality of life. But it's very difficult sometimes for doctors to tell what you need. The test for TSH shows if your pituitary is being overworked in the process of trying to get your thyroid gland to produce more T4. While 5.0 might be in the "normal" range, it seems to me some doctors just don't see that 1.1 T4 with 5.0 TSH and realize that you might not be at exactly the right dosage, even though both levels are technically "normal."
    You seem very knowledgeable. I started taking Throxyzine in March and it has helped me lose weight, but I did stop gaining even while eating a lot.

    Do docs just really not know the ratios or to check all?
  • llsand
    llsand Posts: 87
    The thyroid is super difficult to treat. That’s why I always suggest to anyone who suspects they have a problem to go directly to a specialist. It’s not that their normal doctor isn’t good but to each their speciality. If you need to have tests done to your brain you go to a neurologist, so why go to a generalist for Thyroid tests if there are endocrinologists?

    I’ve had many women tell me that they had temporary thyroid issues and that’s something that does happen. For some reason, a lot of ppl don’t know that pregnant women often have thyroid problems that go back to normal after they have their baby. Also someone who suffered huge stress or traumatism might have temporary Thyroid issues.

    But once you have the disease, that’s it, you need to take the hormone supplements for life and you gain one more family member in the process: your endocrinologist. He/She’ll be with you many times a year and will give you advice on every aspect of your health (physical or mental) because the Thyroid does so much in your body.
  • dlmowrey
    dlmowrey Posts: 22
    I take a combination of thyroid medications. I take 175 mcg of synthroid a day (generics didn't work for me) and cytomel, 5 mcg. twice a day.
  • conniehv40
    conniehv40 Posts: 442 Member
    I don't know A LOT about my under active thyroid, but this is what I do know:

    -I go two times a year for blood work to make sure I am on the right dose of synthroid.
    -I have had 2 different DOCTORS checking my thyroid say that the thyroid is extremely sensitive to doses and changes of doses so to never use the generic -- always use the brand...
    -Thyroid cancer is the fastest growing cancer right now-at such high rates, that one study says to check daily in the mirror for any lump under your adams apple area while you swallow.

    I can't say my thyroid is the reason for hard weight loss because I eat too much : )

    Good luck, but a doctor is always the best bet with thyroid!!!
  • wtdia
    wtdia Posts: 68 Member
    oops
  • wtdia
    wtdia Posts: 68 Member
    I have been underactive also, with family history. I was diagnosed with Grave's Disease (overactive) when I was 19 and had radioactive iodine treatment to kill off my thyroid. I've been on hormone ever since....but went through a period of years where medical doctors, including endocrinologists would not listen to me. I had the same problems you have....tired, achy, weight gain leading to depression. I was miserable. My mom had her thyroid removed and is taking less hormone daily than I am currently cause she still goes to the same quack doctor that told me I just wanted him to prescribe me a higher thyroid dosage so I would lose weight. I was furious....that was not it at all. I had 3 little ones at home and felt like I was a great grandma trying to care for them. I was not grossly overweight, but needed to get some off. I went to a specialist who, to my face, said if I needed to work out 4 hours a day to lose weight, that is what I had to do. It seemed everytime I listed my symptoms, all these *kitten* did was hone in on the struggle with weight loss and throw that as my reasons in my face. I FINALLY found a doctor, a D.O. (doctor of osteopath) vs. an M.D. He is a godsend....he actually listens to me and said he treats how I feel, NOT JUST the lab results. Of course he has to weigh all the information, just like an M.D., but a very very very slight increase in my thyroid hormone did NOT affect my lab results but made me feel like I was no longer some aging alien being from another planet.....i had read books and studies on thyroid deficiencies and there are so many people with the same issues when going to their M.D. or an endocrinologist for help....they are so text book/lab result oriented. Thyroid disease is not something you can treat based on those resources alone....the patient is the #1 barometer for what is the right course of action...I'm not discounting that the labs have to be used, and I'm not some non M.D. freak....I just think in the case of thyroids, most m.d.'s have their heads in the sand.
    I have been suffering for years with Underactive Thyroid issues and have been tested in the past and been told my thyroid is fine. So carried on feeling crappy and putting on weight even when I was on a diet thinking the doctors knew what they were talking about. When I had my second daughter 2 and a half years ago I felt even worse. After blood tests they confirmed that I was Underactive and put me on Thyroxin. My life changed almost immediately. Losing weight, no more depression and mood swings, no more feeling achy and sore all the time like an old woman, no more forgetting everything not constantly feeling like I can't get on top of things work, housework, kids etc., having more energy and getting better sleeps. I had my life back. They keep checks on you when you are on it and after about maybe 6 or 7 months later they said that I didn't need to be on them anymore. I worried about going back to the way I was but thought, the doctors know what they are talking about so I'm sure it will be fine. For the first maybe few months I was fine but then little symptoms I had before started. I tried to ignore then at first thinking it might just be my imagination but once it got really bad I went back to the doctors. Turns out I was Anemic, which was why I was feeling so bad. But even after the Anemia was sorted I still didn't feel great so went for another thyroid function test only to be told it is unequivically normal!

    The doctor did say I could go back on Thyroxin if I really insisted but would have to sign something to say I am doing it at my own risk. I was going to do that but he managed to talk me round to not doing it, which I am really annoyed about now.

    I now feel even worse than I did then and don't have the energy to fight with the doctors and wait months to see the specialist and test results but guess that is what I am going to have to do.

    Just wondered if anyone else has had these issues and have you taken Thyroxin against doctors orders and, if so, how have you got on?

    Getting really desperate now and just want my life back.

    PS there is a family history of Underactive Thyroid. My Auntie was told for years she was fine until she ended up in hospital. She didn't get sorted till she was in her 50's! I don't want to wait that long to get my life back.
  • emstethem
    emstethem Posts: 263 Member
    I have under active thyroid as well. I take 37.5 (I take two 15mcg and cut one in half) mcg of Armour (which is all natural T1,2,3 and 4). I started out on Synthroid (synthetic t4), and it didn't help me at all. I'm surprised that your doc took you off the meds. My doc told me that usually when thyroid problems are diagnosed a person usually needs med for life. :( Hope you get this all sorted out. :( Feel better soon.
  • Martina_Who
    Martina_Who Posts: 172 Member
    So many people aretold they are normal yet have all the symptoms.
    Demand you go back on it and just make sure your levels dont go high
    There is nothing dangerous about being on it as long as you dont go high
    Please do your research, you will find so many people who were in a position like yours

    good luck xox
  • denniseanne191260
    denniseanne191260 Posts: 5
    I was diagnosed with Hyperactive thyroid ( overactive ) when I was 19, my eyes were bulging out and at that time I was taking 110 pills per week to get my levels right and a blood test each week, I have had 6 children and with each pregnancy my thyroid went from Hyper to Hypo and at 26 years old I had aspirations taken from my thyroid gland which resulted in being diagnosed with Hashimotos disease of the thyroid gland. After I had my 6th child in 1989 my thyroid was underactive again and stayed that way until about 8 weeks ago when I had my usual 3 monthly blood tests and it came back as overactive, at that time I was still on the dose of 150mg thyroxine daily so the doctor suggested I reduce the dose to 125mg, I did this and still felt zippy and shaking etc, any way I reduced my dose to 75mg daily and had a blood test 3 weeks ago and the test came back as thyroid levels were good BUT, we are supposed to have thyroid antibodies level of 60 or under and mine were over 1300(wow) Hashimotos again!!!! so the doctor told me to continue taking 75mg and I had a blood test a week ago and I have an appointment in 4 weeks to find out the results, the only reason I lowered my dose is because I am 51 now and I have had all the types of thyroid disease and I know my body and when I am not taking enough thyroxine I feel like my thyroid is choking meI am so tired all day and if I take too much well, I cannot sleep, I shake and I feel too zippy. If you havent had the disease for a long period I wouldnt change any of your doctors directions until your levels are what they should be for a considerable amount of time. Hope this helps :-)
  • ahmommy
    ahmommy Posts: 316 Member
    Take control of your health! You should not be feeling like your doctor wants to "blind you with science".

    It sounds like you are happy with your GP, but I would ask for a referral to a different endocrinologist. You obviously are not getting the care you deserve at the specialist you've seen in the past.

    Ask for a copy of your lab results, not just a value of "normal" or not. You have a right to know the specifics of your own health. Educate yourself on what the different tests mean (i.e., TSH, Free T4, etc. as other posters have listed). The information is out there on the internet.

    I was diagnosed with a thyroid nodule back in 2007. My GP thought my thyroid was enlarged during a routine physical and sent me for an ultrasound and a follow up with an endocrinologist. The ultrasound showed that I do have a small nodule. Labwork showed that my thyroid function was normal, but that I had a pretty severe Vitamin D deficiency.

    Since then I haven't really exhibited symptoms of underactive thyroid, so I haven't been concerned about it. I went for another physical yesterday and had a full thyroid panel run. I'm going on Monday for another ultrasound since it's been 5 years. This will show if the nodule has grown or not.

    Good luck and I hope that you get the care you need!
  • kje2011
    kje2011 Posts: 502 Member
    wow, this thyroid is b"""". I was just diagnosed with Grave's and hyperthyroid.
    Now i am starting on meds.
    I also started to exercise more b/c there is a tendency for weight gain. I've been exercising 2x/day for four weeks and trying to eat better. I stepped on the scale this morning and....waitforit....i gained weight. Since my diagnoses on sept4/12 till today oct8/12 I have gained 7lbs. That's a lot! in one month, with effort of trying to lose.
    Is this a 'losing' battle??
    I hope to get levels under control.

    Best wishes and hopes and solutions to all with this common (yet, to me, destructive) disease.
    I do feel better tho, now that i am on meds, but i am scared (and tired) that i have to work extra hard,(and hope to get somewhere)
    **Hugs** to all

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