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Hello!

I'm not sure if you all remember me....I was having horrible physical symptoms, specifically severe joint pain and intolerance to cold and was diagnosed hypo with TSH at 11.49. I also tested Positive for thyroid antibodies as well. I was put initially on 112 mcg of levo, but I had some racing heart rate, so they lowered to 100. I just had my first blood test since starting the medication, and my TSH was .03. So now they want to lower the levo to 88.

I am actually not feeling badly with my current med levels and I am so scared that my horrible symptoms will come back with the lowered medication. Is it typical to yoyo? I have been being treated by my primary care physician and have my first endo appt. on 2.4...

Thanks for any insight!!

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15 Replies

  • Posted

    Yes rhwittman.  It is very typical to yo-yo in the beginning of Hashimoto's before finally settling into hypothyroidism.  You can go from hyper to hypo and need your levels checked when you start to get symptoms of either so that they can adjust your meds as needed.  I am not sure about how long it takes to finally settle into the hypo phase forever.  Also I don't know if everyone actually does.  I have read that you should but with Hashimoto's, everyone is different. No one is the same, but  being your levels are so low right now, which would indicate you are hyper, your doctor is correct on lowering your dose.  You would need to give your body a few weeks to adjust to the dose change to see how you will feel.  You won't know until then if you still need to go even lower or possibly higher of a dose.  Good luch!
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  • Posted

    My experience with all of the medications I've tried is that if you are feeling good don't mess with your meds even if the numbers aren't so good on paper.  The balance is such a fine line.  I switched to NDT at the end of 2015 and I feel 90% better.  I still adjust my meds based on my symptoms.  Some of the meds have made me feel so bad that I never want to go back there.  When my heart races it's because I'm overmedicated.  When I'm undermedicated I feel tired and cold and achey.  If you start having nerve related symptoms on Levo you may want to switch to a Natural med.  I started having neuropathy on Levo so badly that I was having trouble walking.  It was very painful.  I also had vibrating nerves (mostly in my legs) and restless leg syndrom.  Once I switched over to NDT all of those symptoms were gone completely.  
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    • Posted

      Hi Shannon,

      I could have written that comment myself. I remember the vibrting nerves on Levo, I told my new doctor that as I sat in front of her my legs were vibrating. Her response was .....nothing..... I showed her my dissapearing eyebrows and thinning hair .....nothing.... I told her that it had been very difficult for me to walk into her office and that I felt like I was dying, again, ....nothing.

      All she wanted to do was measure TSH and T4. God, was I glad when I managed to get on Armour. By a stroke of luck my Levo ran out while she was on holiday last summer. Her substitute thought my request was perfectly reasonable, didn't even ask any questions, just e-mailed a prescription down to the pharmacy and I have felt very well ever since.

      Except, of course, she (the one on holiday) would like to lower my dose because my TSH is low! But now I know where to get more NDT over and above what she prescribes so it doesn't matter anymore.

      And rhwhittman, I hope you know that you can achieve doses of medication in between standard doses by taking the higher one on certain days of the week and the lower one on the other days of the week. If you are interested I can post some examples so that you get the idea.

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    • Posted

      Hi LAHs,  

      I totally understand where you're coming from with regards to your doctor.  Mine was the same way.  He just looked at me like I was crazy.  Fortunately, I tell him what to prescribe me when it comes to my thyroid and he doesn't argue.  He just checks my levels from time to time.  I'm completely driven by my symptoms though. If he tells me I need to increase or decrease based on his test and I'm feeling good then I won't follow his instructions.  That's as long as my levels are within range.   Now that I'm feeling better on Nature Throid I want to keep searching for a med that will make me feel NO symptoms.  However, I'm still trying to adjust this one so I'm completely leveled out.  I do add a little T4 only occasionally when I'm feeling run down because I read that when you switch from a T4 only drug to NDT your T3 goes up and your T4 goes down.  I'm hoping that it's not permenant and that my body will adjust and produce what I need once it gets used to the new meds.  It's only been a few weeks but what a difference!  Hallelujah!  So glad I didn't just listen to my doctor on this one.  I would never have felt better and I'm sure I would have gone mad!  smile

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    • Posted

      Ideas for alternative to nature throid...try WP Throid, aka Westhroid-P, it has fewer fillers in. Or try bovine NDT as it's T4:T3 ratio is reported to be closer to that of humans.
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    • Posted

      I'm taking an Over The Counter (OTC), non-prescription, bovine Natural Desiccated Thyroid (NDT) named ThyroGold that I buy off the internet (which was scary to do! - but i had no option when i became allergic/intolerant to the fillers in all the synthetic thyroxine meds). It is with relief (after 25 years of not feeling well on synthetic thyroxine) that I can report it is working really well. My blood test results are all in range for TSH, T4, T3 and ferritin and full blood count. This month, for the first time since 1994, when I was pregnant with my first child, my platelet count has doubled, from around 50 to 100. This was an unexpected bonus. Years ago it was investigated and found that my bone marrow was producing platelets ok, so it was concluded my immune system was killing them off. Does this mean my immune system is calming down - I really hope so? One thing my GP and I have noticed is that when my ThyroGold dose is too low, my % iron saturation levels plummet, from 35% to 19% (which the endocrinologist said was too low). So this may be another indicator to watch when trying to work out whether a dose of NDT is too low.
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    • Posted

      I've heard good things about ThyroGold.  I have heard that you have to take so much more of the over the counter meds that I was put off by it.  I hate taking pills!  I also heard that they are capsules so it's a bit harder to adjust your meds if you needs to.  What is your experience with that?  Are they expensive and do you have problems with them being out of stock?
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    • Posted

      The transformation in my health since I've been on ThyroGold is unbelievable. How I feel is collaborated by my blood test results and my GP's observations - he has been monitoting me closely during my trial of TG. The results are so good that I am prepared to fund it myself permanently, even though my thyroid medication should be free on the NHS.

      To answer your questions...

      Apparently most people require 300-600mg a day. I need 750mg. It comes in capsules of 150mg and 300mg. The 150mg capsules is the size of a 250mg capsule of penicilin. The 300mg capsule is the size of a 500mg capsule of penicilin. I take 750mg a day split into 2 doses: 300mg when I wake up (an hour before food) and 750mg 6-7 hours later. Increasing by 150mg at a time was fine. The capsules are 'plastic' (not really but it conveys what I mean) and can be pulled apart and the NDT powder, which is of the consistency of ground black pepper. This is ideal for people who can't swallow tablets because the powder can be swallowed with a glass of water. Theoretically this means the capsule can be split into whatever fraction of a dose you need.

      From my order on 28th December (I ordered 3 bottles of each and got 10% discount) I calculate the 150mg tablets cost 26p each and the 300mg tablets cost 41p each. So a 300mg daily dose would cost 41p (55 cents) and 600mg daily dose would cost 84p (37.2 cents). It was about 10% cheaper when the exchange rate was better.

      I have not had any problems with supply as I order 4 weeks before I need them. The expiry date on the bottle is 2018 (2 years away). Even when the tablets were on 'back order' it only took 3 weeks. I may have been lucky with regard to when I ordered as a new shipment was due within 2 weeks. In future, just to be sure I don't run out, I will order when I have 6 weeks supply remaining.

      I think that answers all your questions. If you have any more, please just ask and I'll do my best to answer them. The only other thing to add is that TG (bovine NDT) is working so well I wouldn't risk switching to a porcine NDT even it was free and even though I have heard lots of people say they feel great on it. I really don't want to mess with success - I've spent 21 years feeling rough and struggling through and really don't want to risk going back to that!

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    • Posted

      Sorry folks, that should have said: I take 750mg a day in two doses. 300mg when I wake up and 450mg 6-7 hours later.

      When starting on TG I took 150mg for 5 days, then 300mg (split between 2 doses) for a week, then 450mg (split between 2 doses) for 2 weeks, then 600mg (split between 2 doses) for 2 weeks, then 750mg (split between 2 doses) for 4 weeks. After 4 weeks on 750mg I was getting slight palpitations so dropped the daily dose down to 600mg for 4 weeks. At which time a blood test showed my iron % saturation level had plummeted, and my TSH had risen, so I increased my daily dose back to 750mg and this time I was fine. I had blood tests every 4 weeks to check TSH, T3, T4 levels.

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    • Posted

      Barbara - thank you so much for all of the clarification on the Thyro Gold.  I am very interested in trying it.  Although I feel so much better on Nature Throid, I still get muscle aches and jitters at night. I am working toward NO symptoms and will continue to adjust meds until I find the right one.  I will NEVER go back to the synthetic meds again.  They made me feel AWEFUL!  I am convinced that the more pure the meds are the better they will work for me.  I'm going to be ordering some ThyroGold soon.  The 150 mg pills are on back order right now so as soon as they get here I'll let you know how they are working.
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    • Posted

      Hi Shannon, keep me posted how you get on. I'd love it if you were to feel better like I do, and knowing I might have helped is the icing on the cake! Barbara
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  • Posted

    Hello Rhwittman:

    Yes, I remember you!  I agree you need to have the change to  88mcg.  The TSh will rise up a bit more.  It is good to hear from you again.

    It is typical to Yo-Yo with Hashimoto's.  When I was younger I did that also.

    Keep us posted.

    Shelly

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  • Posted

    Yoyo'ing is typical especially if the root cause of the autoimmune disease isn't discovered.  The attack of antibodies can cause fluctuation during flare - ups.  I yoyo constantly due to this reason and, while difficult, I'm starting the AIP (autoimmune protocol) to help determine the issue.  The gut is where most functional medical practitioners start.  Other causes for the attack can be chronic stress, lack of sleep, viruses like the EBV and many more.  Usually it's a mix of the above.  Good luck!

     

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  • Posted

    I have been on throxine since I was 30 lam know 51  was on 20 mg at first then over the years it went up twp150 lost a lot off weight as my Bp was 152/90 last DecemBer know runs at 115/68 I get really cold  feet and hands freezing throxine know on 150 mg one day 100 the next  so Dr cut my throxine down its hard two lose weight but not inposable I was 15.9 in December know 14 .4  goal to get two 13 it's twice as hard with a under active throxide I think losing weight helps a under active throide
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