Recently diagnosed with Hypothyroidism

violetsc7
violetsc7 Posts: 6 Member
edited November 7 in Social Groups
Hello!

I’m 27 years old and I’ve recently been diagnosed with Hypothyroidism. My maternal and paternal Grandmothers have this and my paternal Grandfather. My Mother was diagnosed with Hashimotos a year ago. So far testing has shown I do not have Hashimotos.

I had previously been dealing with a laundry list of symptoms before being diagnosed. Everything from hair loss, dry skin, constipation, fatigue, irregular periods, edema in lower legs, puffy face, a constant state of fogginess, and weight gain ( 20 lbs over 6 months even though I had a personal trainer whom I saw 3x a week and a calorie intake of 1200 suggested by my fitness pal. I went up 3 sizes and had to buy a new wardrobe). Even though I had all the symptoms my labs were considered “normal” and my doctors wouldn’t treat me. The first time I went for testing a year and 2 months ago my TSH level was 4.84 free T4 0.76, 3 months later TSH was 2.17 Thyroxine T4 6.3, 3 months after that TSH 1.74 Free T4 0.79, 6 months after (when I started noticing hair thinning on the right side) TSH 1.88 Free T4 0.88 and Free T3 2.8, a month later my TSH was 3.07 free T4 5.6 T3 total 70. My last appointment with an endocrinologist 2 weeks ago my TSH was 6.0.

My endocrinologist prescribed 125 mcg Synthroid and said she chose this dose because of my height, 5’5, and weight 150 lbs. I’ve been taking this dose for almost 2 weeks and have started to notice a few changes. My face isn’t puffy anymore ( by puffy I mean I don’t have bags under my eyes and my face doesn’t look like it’s retaining water like when you have PMS), I’m not as foggy/ tired, my dry skin has cleared up and I’m not constipated. My doctor told me one of the side effects of Synthroid was hair loss, but said it should improve over time. I had this symptom prior to the RX so I’m not sure if what I’m experiencing now is due to it or the Hypothyroidism. She didn’t give me a real time line of when this should stop and no one else in my family had this symptom so I’m hoping someone here could tell me if there is anything I can do or ask her to do to help this symptom stop. I’m also curious when did most start to see weight loss or did you gain weight on Synthroid.

I’m having my blood tested in 6 weeks and won’t have an ultrasound for 6 months ( due to my endocrinologist's schedule) so since I’m a newbie to all this I’d love any suggestions of questions to ask my doctor or any general information you wish you had known when you were first diagnosed.

Thanks so much!

Replies

  • editorgrrl
    editorgrrl Posts: 7,060 Member
    I have Hasimoto's, and Synthroid had no effect on my weight loss. I lost way slower than most MFPers, but I lost. I did it by eating at a deficit.

    Take Synthroid on an empty stomach w/ a full glass of water. Do not eat or drink anything but water for an hour. Wait an additional 3 hours before taking any vitamins or minerals, especially calcium.
  • It gets better!

    I would ask your doctor to also test you for your nutritional status for iron, B12, and D3 (and any others they might think are helpful), since hypo folks often seem to be deficient in these as well. Low iron can also have the side effect of hair loss, so if you're anemic, correcting that might help with the hair issue as well. If nothing else, knowing where you are nutritionally will help you eat best to optimize your medication.

    I'd also ask why they started you on such a high initial dose. Most doctors start a lot lower, and step up every 6 weeks or so until they reach higher levels, to allow the medicine to gradually build up in your system (and to see how much your thyroid is still producing on its own.)

    I'd also ask to consistently have three tests: TSH, free T4, and free T3, since those are usually the ones that will give you the best information about what's really going on. Sounds like different doctors have tested slightly different things, which makes it harder to see trends over time.

    Good luck and hopefully you've got a great endo!

    ETA: I too lost weight really slowly. Getting my synthroid dose right and making sure my nutrition was in place were the two things that helped the most. Just a deficit didn't seem to help me a whole lot. Getting my iron and vitamin D levels a lot higher (based on my bloodwork) made a big difference. I too had the hair loss issue, and with synthroid and iron supplementation, plus biotin, it took about 3-4 months to see a difference.
  • Hello! Its good to know that I am not alone in dealing with hypothyroidism. I was diagnosed a little over a year ago, and I was on levothyroxin 75mcg for a while until I moved. Since then I have been dealing with the symptoms I had prior to being on the medication. For me, it's the constant mood changes/swings, inability to maintain a healthy weight, bloating, irregular periods, chronic dry skin/dermatitis, and hair loss. It turns out that nearly my entire paternal family has undiagnosed hypothyroidism. That explained a LOT. Haha!

    I read that certain foods can affect the thyroid too, so I steer clear of as many simple sugars as possible, and keep my caffeine levels lower than i used to. Education is important, I think, when it comes to caring for your health.

    I have a wedding to go to this winter, at which I am the MOH, so losing weight is not an option. I also want to look good in a bikini. ;)

    Let's keep it going!
    Good luck!!
  • violetsc7
    violetsc7 Posts: 6 Member
    Hi,

    Just wanted to post a quick update:

    I had an ultrasound of my thyroid in August. In the ultrasound my thyroid was in shambles. You couldn’t detect where the muscles and my thyroid stopped and began. Your thyroid should be very visible in the scan, almost bright in comparison to your muscles and larynx. This indicated that my antibodies were attacking my thyroid. My endo then diagnosed me with Hashimoto’s. I found this interesting because in all my blood work for antibodies it always came back normal. At this appointment I told him that I wanted to stop taking Synthroid. I had found over the year that this drug exacerbated my symptoms of weight gain, hair loss and puffy face/edema. He finally agreed to prescribe me Cytomel with the Synthroid. I tossed out the Synthroid and am taking ERFA Thyroid instead with the Cytomel. He also suggested I take the vitamin Selenium 200 mcg once a day.

    Here’s how I’ve been taking my medication daily for the last 3 months:

    First thing when I wake up I take Cytomel by chewing it
    At lunch I take ERFA Thyroid by chewing it
    At dinner I take Cytomel by chewing it
    At bedtime I take my ERFA Thyroid by chewing it and swallow the Selenium with a glass of warm water

    I have had the best results so far by doing this. My weight has gone down ( in 2 months I lost 15 lbs and its melting like butter), my hair and eyebrows have started to grow back and the puffy face/ double chin and neck swelling has gone way. The only time I notice the puffy/swelling anymore is if it’s that time of the month, I’ve just been on a plane for over an hour or I’ve had red wine/beer. I’ve also cut out weight training and cardio for more relaxing workouts like yoga. The best thing I can do for my condition is to RELAX. It really helps with keeping my symptoms from flaring. I’ve also been trying to cut out as much Gluten as I can. I’ve been reading a lot of posts from people saying they have found it helps also.

    My symptoms had changed who I was so much I didn’t even realize it till they started to go away. I have finally started to feel like my old self again. I have been motivated to do things as simple as chores around the house and errands. I use to feel so tired when I’d get home or just blah. I’ve also wanted to start shopping again and putting makeup on/doing my hair. Having these symptoms had brought me to a point where I felt like no matter what I did I just didn’t feel as pretty as I use to be. I can now look in the mirror and see my old self again.


    Here are some great sites I have found to be helpful:

    http://www.stopthethyroidmadness.com/

    http://hypothyroidmom.com/

    http://www.stopthethyroidmadness.com/hypothyroid-photos-before-after/
  • Bearika628
    Bearika628 Posts: 10 Member
    Wow! Thanks for posting - this is so encouraging.

    I have been on Armour thyroid for the past few months but with each dosage increase, my free T3 and free T4 would decline (not improve). My free T4 is now 0.71 (not even in the range) and my free T3 is 2.0 (bottom of the range). My TSH has been consistently "normal" which made it hard for me to get treatment to begin with (antibodies are also negative).

    At my last exam my dr said I'm not responding to the Armour and switched me to Levothyroxine (Synthroid) and Cytomel.

    My question for you - how much Cytomel are you taking, and how long before you started to notice results? My primary symptoms are extreme fatigue, unexplained weight gain and sensitivity to cold (temperatures of 94-96 typically).

    Thanks for any advice you might have & congrats!!



    violetsc7 wrote: »
    Hi,

    Just wanted to post a quick update:

    I had an ultrasound of my thyroid in August. In the ultrasound my thyroid was in shambles. You couldn’t detect where the muscles and my thyroid stopped and began. Your thyroid should be very visible in the scan, almost bright in comparison to your muscles and larynx. This indicated that my antibodies were attacking my thyroid. My endo then diagnosed me with Hashimoto’s. I found this interesting because in all my blood work for antibodies it always came back normal. At this appointment I told him that I wanted to stop taking Synthroid. I had found over the year that this drug exacerbated my symptoms of weight gain, hair loss and puffy face/edema. He finally agreed to prescribe me Cytomel with the Synthroid. I tossed out the Synthroid and am taking ERFA Thyroid instead with the Cytomel. He also suggested I take the vitamin Selenium 200 mcg once a day.

    Here’s how I’ve been taking my medication daily for the last 3 months:

    First thing when I wake up I take Cytomel by chewing it
    At lunch I take ERFA Thyroid by chewing it
    At dinner I take Cytomel by chewing it
    At bedtime I take my ERFA Thyroid by chewing it and swallow the Selenium with a glass of warm water

    I have had the best results so far by doing this. My weight has gone down ( in 2 months I lost 15 lbs and its melting like butter), my hair and eyebrows have started to grow back and the puffy face/ double chin and neck swelling has gone way. The only time I notice the puffy/swelling anymore is if it’s that time of the month, I’ve just been on a plane for over an hour or I’ve had red wine/beer. I’ve also cut out weight training and cardio for more relaxing workouts like yoga. The best thing I can do for my condition is to RELAX. It really helps with keeping my symptoms from flaring. I’ve also been trying to cut out as much Gluten as I can. I’ve been reading a lot of posts from people saying they have found it helps also.

    My symptoms had changed who I was so much I didn’t even realize it till they started to go away. I have finally started to feel like my old self again. I have been motivated to do things as simple as chores around the house and errands. I use to feel so tired when I’d get home or just blah. I’ve also wanted to start shopping again and putting makeup on/doing my hair. Having these symptoms had brought me to a point where I felt like no matter what I did I just didn’t feel as pretty as I use to be. I can now look in the mirror and see my old self again.


    Here are some great sites I have found to be helpful:

    http://www.stopthethyroidmadness.com/

    http://hypothyroidmom.com/

    http://www.stopthethyroidmadness.com/hypothyroid-photos-before-after/

  • violetsc7
    violetsc7 Posts: 6 Member
    Hello,

    I'm taking 3- 5mcg cytomel in the morning and 3- 5mcg cytomel around 5pm. I'm only on Cytomel bc my doctor refuses to use Armour. I wish I could be on Armour bc everyone I know who is on it saw the best results. I strongly discourage using Synthroid as do many other Thyroid patients. Erfa Thyroid helps support all thyroid hormones not just T4 like Synthroid.

    When I switched my meds I noticed results within 2 weeks. I believe that's normally how long it takes for the medicine to pool in your system anyways.

    What I think has helped the most is the vitamn Selenium 200 mg. Taking that daily has helped lower my body swelling and facial swelling.

    You may also want to check out this article in regards to synthroid and Lung cancer:
    http://www.stopthethyroidmadness.com/2013/08/12/t4-only-lung-cancer/

    I would also refer to this link for healthy thyroid test levels:
    http://www.globalrph.com/labs_t.htm


    Best of luck!
  • violetsc7
    violetsc7 Posts: 6 Member
    I forgot to mention I take one ERFA Thyroid 60mcg at noon and two ERFA Thyroid 60mcg at bedtime.
  • violetsc7
    violetsc7 Posts: 6 Member
    Hello,

    Just wanted to post a quick update: I recently switched doctors and found someone who actually takes the time to listen to me and cares about whether or not I’m getting better. My new doctor is at the Rothfeld center in Waltham. I normally wouldn't mention this, but considering how hard it is to find a good doctor , let alone one that prescribes Armour, I felt it was necessary. At my first apt. with my new doctor they tested me for Lyme disease, Candida, food allergies and ran a 24 hour saliva cortisol test. They also included blood tests to check my levels for pretty much everything listed here on stop the thyroid. http://www.stopthethyroidmadness.com/recommended-labwork/
    I had been asking my other doctor for 2 years to figure out if there was anything else that could be causing my symptoms from resolving and for answers to why there was no cell conversion with my T3 and what could cause it to just pool in my system. This new doctor was able to figure everything out within 3 visits.

    My results showed I didn't have Lyme disease, but I tested positive for Candida in the system which can cause inflammation and make your antibodies go haywire. I also found out I’m highly allergic to baker’s yeast. The cortisol saliva test was the most interesting of all. It showed I have borderline Addison’s disease. I only produce cortisol in one big burst to wake myself up and then nosedive the rest of the day. This would explain a majority of my symptoms from my first post and why my T3 wasn't converting. The test also showed I was hypoglycemic which I found very interesting and may account for why I would feel so run down after I would eat meals.

    My doctor had me start taking a month long rx of Diflucan for the candida and a strict illumination diet as well. I was also given 90 mg of Armour in the morning which I take around 11am and I chew and then 60 mg at 11pm which I chew. For the adrenal issue I take one adrenal complex supplement with each 5mg dose of Hydrocortisone that I take daily at 10am and then at 2pm. My results also showed I had a high CRP level so in order to bring done the internal inflammation I’m taking omega fish oil liquid that would equal out to 7 pills, 200 MG Selenium, Magnesium ( for the scalp tenderness symptom of low adrenals) Vitamin D- 1000 units, Probiotic, Biotin forte extra strength 5mg ( for hairloss). I’m also still using MyFitness pal with a calorie intake of 1200. Since starting this new regimen I’ve been losing a lb every 2-3 days for the last 14 days putting me at -5lbs. My eyebrows have started to grow back, but I’m still noticing a lot of hair on the bathroom floor after I style my hair and I still only have to shave my legs once a week( blessing and a curse).

    The last time I spoke to my doctor she mentioned raising my dose of hydrocortisone because my body temp was still in the 97’s. I plan on asking her about this article I read from other patients who suggested using this conversion of taking small amounts 4x a day rather than 2 large amounts. http://www.stopthethyroidmadness.com/adrenal-info/faq/ Numbers 19-21. Basically to dose for 20mg: 10mg, 5mg, 2.5mg, 2.5 mg ( 4 hours apart). I would also have to take my daily temp every 3 hours from the time I wake up, add them together, divide by 3 and that would be my daily average dose. It also says if your daily average temp should be with .2-.6, if not then you need to go to the 30 mg plan which is outlined in 22. I've been taking my temp for the last week and I believe my daily average is 97.3. I will update after speaking to my doctor about what their opinion is on this.

    I started these posts a year ago and I’m so happy that I did. By looking back on where I started it’s so encouraging to see that there has been progress. You find yourself more times than not praying for results and sometimes with this condition it’s hard to see them… like trying to see the forest for the trees.
  • editorgrrl
    editorgrrl Posts: 7,060 Member
    Hurray for finding a doctor who listens to you—that's a huge NSV (non-scale victory).

    The moral of your story: Do not give up!
  • LuvMyCapt
    LuvMyCapt Posts: 13 Member
    Thank you so much for sharing this information Violetsc7!!! I came across this post last night as I feet like I have been living in Hypothyroid hell for the last 3-4 years. I went to the web site and literally wanted to cry looking at the before and after pictures of people getting on the right medications. I have been beating my head against the wall with no results. My husband is hardly talking to me. He thinks it's him is why I have no interest in extra cirriculars in the bedroom if you know what I mean. I have an appointment with a Health and Hormone clinic but can't get in until the end of the month. I have been waiting 2 months to get in as it is. I started with my ENT, then went to my Gyno. She gave me the typical eat less exercise more run around, she also put me on birth control and water pills. Really!?!?

    I have had a trainer since July monitoring my food intake and workouts. Nothing, nada, zip... is happening to my body. I am turning 40 in July and I am determined now more than ever to find the right help.

    I ordered the book Stop the Thyroid Madness, I am just so relieved everything I am feeling is not all in my head. I feel lazy and helpless. Can't wait to get some answers!!

    Thanks again!
  • AlisonkStrickland
    AlisonkStrickland Posts: 12 Member
    Doesn't that website- "stop the thyroid madness" seem sort of like its promoting Armour like they're paid to do it? It seems kind of fishy.
  • editorgrrl
    editorgrrl Posts: 7,060 Member
    Doesn't that website- "stop the thyroid madness" seem sort of like its promoting Armour like they're paid to do it? It seems kind of fishy.

    I've never read it. I get my thyroid advice from my endocrinologist and the Mayo Clinic website.
  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    Perhaps, STTM may look as if it is paid to promote natural thyroid products. It is out there to help people with thyroid issues find the right answer for them when many of us know we are under medicated, still not feeling normal. They are about helping you discover what is right for you, no one else. What works for one, probably is only part of the answer for another.

    The reason many find the natural helpful is that it is balanced t3 to t4 and has the disregarded one and twos present too, (doctors have not found their uses yet, if they are looking). The natural replicates what we should be providing for ourselves given that from birth we have had a well balanced diet for our personal needs and "all our personal stars are aligned". Until chemists made the synthetic forms the only treatment was the natural and then only by the improvement of symptoms. Trial and error.

    Some of us may have access to brilliant endocrinologist but other of us don't. My local NHS senior endo told me my low temperature is not relevant he sees so many people in a day with that issues and they are well. How many of us know this problem. I have no respect for this man who expected to stamp my forehead giving not additional information about my diagnosis, like I do actually have antibodies. I am only the patient, this should not be of interest to me. Wanting to make the best of my life< I needed to know and discovered this from a haematologist. Exclamation.

    Recently I have been thrown back on what I know about my personal health problems. Its confirmed by a professor in immunology, I'm salicylate sensitive reacting to toxicity from foods the same as if it were aspirin, from birth or at least in very early childhood. Not many doctors know these symptoms let alone care. (Can come into asthma, IBS, PCOS and more). My Immunologist did say, this sensitivity is at the edge of science. My thyroid problem serves to restrict further the rate I can eliminate toxins from my body. It's only in the last two weeks I have discovered salicylate sensitivity increases the need for oxygen and as it is removed from the body it produces bilrubin which is yet another way t4's are unable to become t3. In proper scientific papers.

    I have presented with thyroid symptoms for my sons life time and was never taken seriously even with the absence of eyebrows being dark haired. Test when given are always right. I heard an interview with the person who started the work looking into testing for hypothyroidism, even he said, he does not think they are accurate enough and are not being used in the way he had anticipated. The numbers we are all held up against are potentially flawed because when the blood tests were done the known thyroid status of the donations were not recorded leaving open to interpretation the outcome. I believe it to say this population displayed that range of numbers, not that these people were free of problematic thyroid problem interference, it only says, at this time that was how it was. How can this information found in so many different places be an adequate benchmark for treatment.

    I suggest you read and read again as much as you can about your personal symptoms. Try your national thyroid support site, the Canadian, US and Australian ones are brilliant, take what information is appropriate to you and if you can thank the powers that be if you are in the US, Australia and Canada you are that they permit supplementing with t3 as a matter of course where necessary, unlike here in Europe where a special case needs to be made because t4 is the only treatment needed! they say because everyone is capable of facilitating the transfer. NOT. Please pardon my venting my feelings. No two persons experience of Thyroid problems are the same. Increasingly often I have read those with Hashimoto's thyroiditis do better on both t3 and 4.

    Borrowed quote, hope everyone's, "personal stars come into alignment" soon.
  • violetsc7
    violetsc7 Posts: 6 Member
    edited April 2015
    Hi everyone,

    I don’t have any updates at this time, but I’m seeing my doctor next week and will be having testing done then. I just wanted to take a moment to thank you all and respond to your posts. I really appreciate you sharing your experiences with me. I found myself nodding in agreement more than once and feeling grateful that my experiences weren't unique.
    @EditorGrrl – I want to thank you and I appreciate your encouragement and advice over the last year.
    @LuvmyCapt.- Your post really hit home for me. It was like hearing my words echoed back to me. I was also floored when I saw the before and after pictures. At that moment I had so many thoughts running through my head such as “ If this is what Hypothyroid patients so visibly look like how the hell did so many doctors tell me I was fine and there was nothing wrong?!” then I thought “ Wow so there is hope… I don’t have to except this new “normal “I can fight for my old life back”.
    I’m so happy to hear you bought the book also! When I first read it I felt like I was back in college with all the notes I was taking so I hope you have a couple highlighters handy lol. Here’s some more info I found that really helped me communicate to my trainer how hashimotos affects our workouts. http://www.thyroidchange.org/our-blog/finding-the-balance-the-story-of-exercise-intolerance
    I highly recommend the saliva cortisol test. If your doctor won’t test it you can order it yourself here https://sttm.mymedlab.com/locations?return_to=https://sttm.mymedlab.com/sttm-profiles/sttm-thyroid-baseline
    It can be a little $$ out of pocket, but If you have health insurance put a copy of your card in with the box when you send it and depending on your plan it should be covered.
    This is the best breakdown I think of how to address requested tests with your new doctor: http://www.stopthethyroidmadness.com/ducks-in-a-row/
    Let me know how everything works out for you and if you find any information along the way I’d love to hear it 

    @AlisonkStrickland - I actually laughed when I read your post. Not out of disagreement, but because I could see how the site could look like that. When I first found it I was just so enamored with finally finding answers I didn’t have room for skepticism. I’m not sure how much you were able to read about the site, but the owner is also a fellow hashi patient. Here’s her story: http://www.stopthethyroidmadness.com/my-story/ She created the site as a way for patients and doctors to share experiences and information. I think NDT is so highly recommended on the site because as you and I can probably both relate to when she finally found something that worked she wanted to scream it from the rooftops.
    @Fuzzipeg – Thank you for including in your post about being salicylate sensitive! I wasn't aware of the condition, but when I found this article on the topic I sent it to a friend who was suffering from lot of the symptoms described. http://www.thepaleomom.com/2012/10/what-is-salicylate-sensitivityintolerance.html
    From your last paragraph it sounded like you experienced the same resistance to NDT as my mother who lives in France did. I wanted to share these sites with you that were helpful for her and maybe they could be for you or someone you know like your info on salicylate sensitivity was for me. At the bottom of this site are doctors in EU who prescribe NDT. http://www.thyroid-info.com/topdrs/index.htm#nonus Here’s a list of NDT brands outside the US that maybe easier to access:http://www.stopthethyroidmadness.com/armour-vs-other-brands/

    I also just read about how Drybrushing is highly recommended to help eliminate toxins as explained here. I’m going to start trying this as well and see if it can help eliminate my symptom of brainfog: http://www.mindbodygreen.com/0-12675/a-step-by-step-guide-to-dry-skin-brushing.html

    Thank you all again!
This discussion has been closed.