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  1. #1
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    Default Hashimoto's disease - please give me some hope

    Please give me some hope. this is our 18th month TTC and the 6th month of my Hashimoto's thyroiditis treatment and after half a year I still see no improvement of my hashi's symptoms. It took me 4 months to convince my GP to test for ceoliac's to see if gluten might be the underlying cause of why i am always feeling tired, brain fog, hair loss and dry hair, muscle twitching and biggest of all infertility.
    i am so tired of feeling washed out and drained. my GP tells me she doesn't know why because my TSH is in normal range (but she forgot to test for T3 the last 6 months so i have no idea if this is what is wrong). She told me that if the next blood test (next week - which i finally convinced her to test T3) is in normal range then that all these symptoms are being caused by psychological issues because she says i am too stressed. I think that's BS cuz i have all these clinical symptoms. I dont feel heard by my GP at all, she just brushes any suggestion off the table and is now pointing the finger to me - like I am willingly causing all these symptoms myself.

    I have booked in with a naturopath for a second opinion in two weeks so I am hoping to get some help there. after that if that doesnt work I dont know what to do any longer

    if you had Hashimoto's did you eat gluten free and did this help to remove your symptoms? Did you feel better at all

    as much as I would love to have a baby right now, im at a point right now i give up and i dont care much I just want to feel better and these Hashimoto's symptoms to go away

  2. #2
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    Hi,

    I also have Hashi's and my have seen both a naturopath and an endocrinologist. My naturopath advised me to go gluten free, and my endo advised me to go totally grain free (not just give up wheat but all grains). It was hard, but I did it.

    In my case, the dietary changes made NO difference. I had my thyroid antibodies retested after 21 months grain-free and they had still gone up. There was no change in my energy levels either, but my TSH sits between 1.5-2.0 and I don't have symptoms as bad as you describe.

    If your TSH is between 0.3-3.0, then it is very hard to get GP support for further testing. However, we all have unique ranges at which we feel our best so I'd encourage you to see an endocrinologist who will gladly experiment with medication levels until you feel an improvement. According to my naturopath, the optimum TSH range for fertility is 0.5-2.0.

  3. #3
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    Hi SimpsonDesert,

    the trouble is that I am seeing an endocrinologist together with my GP and every time i tell both of them that i have my symptoms she goes: "oooh that strange, I dont know, you should feel better because your levels are in range"
    i have heard it a hundred times she keeps telling she doesnt know and that there must be other causes that i should ask my GP to test further, then I ask my GP to test further and she wont because i am in normal range.
    its really frustrating and it makes me so angry that they dont seem to care.
    I am meant to do a skype conference with at my GP office because my endo is located 4 hours away (i had to go to that one because the local one didnt accept new patients).
    i feel like they are giving me the runaround.
    then I also see a fertility specialist who told me my levels should sit a the lower end of the normal scale. and the three of them just dont communicate at all. Mine were sitting at the higher end of the scale at 2.7 (i am waiting for the next blood sample to be taken Friday - then Monday i will know what is happening)

    that's why i am going to see a naturopath because none of them are listening to me when i ask about gluten free diet, to be tested for celiac etc. my GP keeps telling me that whatever I read and researched on the internet is all false information. meanwhile I am the only one who keeps digging deeper because i want to get to the bottom of it - i think my GP is getting annoyed with me when i ask about other options like going gluten free / vitamin deficiencies etc.
    she behaves like she is offended that i have read about these thinks and then refuses to cooperate.

    so i have booked in with a naturopath the week after because one of my friends had adrenal fatigue and their normal GP kept saying they didnt know and the naturopath was able to help- so i am hoping this dude knows the answer

    like i said, as much as i would love to have a baby, i know it wont happen till this is fixed and right now i am to a point where for the moment i dont care too much about falling pregnant. i just want to feel healthy again, not like a zombie

  4. #4
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    Oh you poor bugger! I really do sympathise, I got the similar run-around from my 1st FS and it was so frustrating, she also gave me the speech about google being a dr's worst nightmare. I parted ways with that FS and found someone more open-minded. At least your FS has acknowledged that your TSH should be closer to the bottom of the range. Perhaps they can help you find the right dose of medication to get you down under 2.0?

    I find naturopaths are much better at listening and digging deeper until they find an answer. I hope your experience will be similar. However, the naturopath can't give you blood test referrals or prescriptions, so you will need to find a GP that will get on board with you. Don't be surprised if your current GP is dismissive of the naturopath's advice. It is hard to find one that believes in alternative medicine. My naturopath asked for stacks of BTs and also a urine iodine test, luckily for me my GP didn't bat an eyelid and just gave me the forms.

    TTC 18 months and already having a known auto-immune disease is definitely grounds to have a full infertility work-up done. Asking for coeliac and vitamins is not unreasonable and I think your GP is being very rude. Even if they don't think its worthwhile, YOU are the patient and they should be supportive of your requests. If another GP is not an option, keep pushing and stand up for yourself.

    I hope that you are given some clear answers and a direction forward after your next round of appointments. Good luck

  5. #5
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    I also have Hashi's but normal thyroid function (last test 1.41). I saw an endo a couple of years back who said I didn't need thyroxine as my thyroid was working ok and basically just to keep an eye on things myself.

    I have embarked on this TTC journey with my husband and after reading that Hashi's can cause miscarriage I decided to visit a naturopath. Had my first appt with her last week and she told me to cut out wheat. Also gave me some pills for thyroid support. I have my next appt with her in two weeks and will prob have my bloods done again then to check antibody levels and thyroid function.

    On a good day I feel exhausted and on a bad day totally exhausted I do exercise in the morning though which I feel helps me get through the rest of the day.

  6. #6
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    And I also take Vitamin D daily.

  7. #7
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    Hi there

    I have Hashimotos and I've been treated and reasonably stable for the past 5 years. I find a TSH under 2.0 is when I feel normal and is also optimal for TTC.

    I am totally gluten intolerant and feel 1000x better for cutting it out. Before I was getting so many uncomfortable gastrointestinal symptoms, lethargy, gas, bloating. I really reccomend cutting out gluten if you have hashi's and I mean fully cutting it out. I can tolerate oats though as I'm not coeliac.

    Never had a problem with my weight.

    Also I have PCOS have you been checked? They often go hand in hand with thyroid problems.

    I was lucky enough to fall pregnant first go, unfortunately miscarried but then fell pregnant first go again. I am currently 30 weeks pregnant with a healthy baby girl.
    I had to up my thyroxine dose in the first trimester as it went haywire! TSH jumped to 4.8 within weeks.

    Goodluck on your TTC journey I hope you get your sticky baby soon

  8. #8
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    I haven't read any replies but here's my story. I had a missed miscarriage in February 2012 and this prompted my GP to do some testing on me. I had very low vitamin D levels, my TSH, T3 and T4 were all within semi normal ranges but my GP noted nodules in my thyroid so tested me for thyroid antibodies. My readings were through the roof! I was diagnosed with Hashi's and my OB agreed that my baby had been attacked by my thyroid antibodies because it saw it as foreign.

    I had been having Hashi's symptoms for about a year before my diagnosis and it was steadily getting worse. I started seeing a naturopath who put me on Rehmannia (specifically for lowering antibodie levels), Selenium (to improve thyroid function), a very high dose of vitamin D, a probiotic, fish oil and a few other tablets. At one point I was downing 16 tablets a day! 3 months after starting this regime I had my antibodies tested again and both readings had halved. That was awesome but I still had Hashi's symptoms. Not as bad as before I had horrid 24/7 symptoms, but I still felt effected.

    I still hadn't fallen pregnant after my D&C and it had been 5 months so I asked for a referral for the best endo in Sydney who just happens to be the medical director of IVF Australia. I went to see him and begged him for Thyroxine. He put me on 50 micrograms and within 2 weeks I felt the difference. I wasn't tired all the time and just felt better all around. After 3 weeks, the effects started to wear off and he upped me to 100 micrograms per day. The difference was instant! I had my thyroid levels checked in late August 2012 and my TSH had gone from 3.8 (too high when TTC) down to 0.98. My T3 and T4 levels were perfect. I got my BFP on the 9th September, 2 months after starting the Thyroxine. You have to note that I had to BEG to be medicated. My GP insisted I didn't need Thyroxine and didn't even want to give me the referral to the endo. The first endo I saw told me I was fine and basically to get over it! You really have to shop around and insist to get the help you need. Find someone who cares and don't give up!

    I've found that Hashimoto's is a diagnosis that never goes away. The symptoms never completely go away either but you can control them. I've found that I had to go on a gluten free diet. I was tested for ceoliac disease and it came up negative but I know that I am someone who can't have gluten. I've now also cut out refined sugars, all preservatives, legumes and potato and not only do I feel so much better on this eating plan but the difference in the bloating all over my body has been amazing!

    Don't EVER let any doctor/specialist tell you you're crazy or imagining things. If they have the audacity to say that to you, then you need to ditch them and fast! I have gone through so many specialists and GP's in the last 15 months I couldn't even begin to tell you and although it has been one of the hardest times of my life, I'm so glad I stuck it out! I have a GP who listens to my every concern and acts on it. My endo asks me for my opinion in what my dosage should be and my OB is also very supportive of my Hashi's.

    Unfortunately I've now gone hyperthyroid so I've had to lower my Thyroxine dosage but my OB thinks it's baby related so hopefully my T4 should return to normal after she's born.

    So sorry for the super long post but I just wanted to give you hope. You CAN control the symptoms. They will never go away but you can minimise them. It's a LONG process but if you hang in there, you'll find a solution. You're worth it so take the time to do the research for yourself. It's going to take lots of trial and error but you will find what works for you and you'll also find that you may need to tweak and adjust as time goes on.

    I am now 28 weeks pregnant so it can and it will happen for you!

    I also wanted to add that although 0.3-3 is a normal TSH range, I just don't function on anything over 1.5. I have to be under 1.5 to feel optimal.

  9. The Following User Says Thank You to FirstTimeMummy2012 For This Useful Post:

    SimpsonDesert  (01-03-2013)

  10. #9
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    I couldn't read and not reply. I have Hashi's too but thankfully I had both my children young (I'm 24 now) and I was diagnosed when my youngest was about 10 months old so I didn't have trouble conceiving.

    My levels are also stable at the moment but over the last few days I've jut been hit with this wave of tiredness that isn't going away. Not sure what's up.

    What medication are you on? I would definitely seek another opinion because its dam hard to function when you feel like crap and no one seems to be able to understand what it feels like. Have you looked into trying desiccated thyroid instead of synthetic thyroid medications? I'm on oroxine but have read about people that are on synthetic mess and it does nothing for their symptoms.


 

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    Last Post: 13-03-2012, 08:41

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