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Journey of a Thousand Miles — All Uphill

Post Published: 06 May 2010
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Category: Dear Thyroid Letters
This post currently has 10 responses. Leave a comment

Hello Thyroid,

I don’t know where to begin, because my beginning happened during the worst week of my life. I had just lost my mother in July 1999. I was on my way home after closing up her house, when I got a phone call from my physician’s nurse, who said “your thyroid level is too high, it’s at 7, you need to go on medicine right away”. Confused, I did not know if it was a good thing or a bad thing that number 7. So I made a doctor’s appointment when I returned to talk to my primary care physician. He said to me that my THS level was a bit high and that I had become what was called hypothyroid”¦which I learned meant that my thyroid was not producing enough hormone. I asked him then why the high number”¦and he explained “the higher the number the lower the thyroid function”. Those words I still remember from that day forward.

Two years later, I had a serious car accident. The paramedics found me in the passenger seat. I had no broken bones, just intramuscular bruising. But when they took x-rays, they found an enlarged right bottom rib, but could not explain it. Eleven months later, I was diagnosed with kidney cancer. Thinking that my hypothyroidism was a curse, I was facing an uphill battle with cancer at the same time. I always wondered if the slow thyroid caused the cancer, but the doctors never told me. In December, 2001, the tumor and my right kidney were removed.

For years after my cancer surgery, we have still been battling with hypothyroidism. My “numbers” would go from 7 to 2 back to 6 then down to 1 back up to 5 then down as low as 0.5. Fighting with my doctor, who kept on saying that 3, 4, 5 were “normal” numbers, but I still experienced the same old symptoms, the lethargy, the weight gain, and so many others. My doctor kept on disagreeing with me. I was on brand named Synthroid, then generic Synthroid. Over the years my dosages were adjusted, Cytomel was also added with the Synthroid, but the last time my prescriptions were increased because I had such high levels, and I got my lowest levels ever. When it was at 0.5, I was very hyperactive, couldn’t stop doing anything, my hair was starting to drop out and I didn’t know why. When he got that test result, he consulted with his endocrinologist in his office and immediately took me off that dosage of generic Synthroid and Cytomel, and put me on Thyrolar-3. For a few years, I was good”¦.still tired, but good.

Then something else happened”¦.my pharmacist gave me bad news. Thyrolar-3 was no longer available. That felt like the sting of a bee. It had been working, but now we had to find a different solution. My doctor put me on Armor, and my tongue and throat swelled shut. Then my doctor had no other option but to put me back on generic Synthroid and generic Cytomel (the prescriptions said generics allowable). My levels went up and up. I got the last results from his nurse, who said, “Your blood work is fine except for your cholesterol,” which told me nothing. I had to be proactive. I asked what my TSH number was and she said 6.7 and I said “He said that’s fine?””¦and the nurse said “well, that’s what I was told to tell you”, and I asked to make an appointment with my doctor. Last Thursday I sat down with my doctor and we had a long hard chat on all of my bloodwork to see how I am doing. My thyroid levels are too high, although he said that “too high” in his opinion is 20 or 30. Wait, 20 or 30?!! You told me that I had hypothyroidism when my level was at 7, now you are telling me that my thyroid is okay at close to 7 on medication”¦.what the heck????

He increased my Synthroid, made it name brand only, and I found out that I am on generic Cytomel, and that I can go on brand specific Cytomel as well, so I am doing so. I am giving this three months. If this doesn’t work, I’m asking for a referral to see an endocrinologist at the University of Pittsburgh Medical Center.

How (you all are possibly thinking) can you be staying with this doctor? He is not only my primary care physician but my pulmonary care doctor as well, and he is excellent in that care. If I would do anything, I would change and get a new primary care doctor, but I think the best decision that I would do is to see how this all works out.

August 1999 to June 2010″”I think I’m way overdue for an personal endocrinologist consultation. If my story does anything for you, please let it do this”¦take a proactive stance in your treatment, go to an endocrinologist as soon as they say the words hypo/hyper hypothyroidism.

If you learn anything from my story, I hope that you learn to be proactive with your and your family’s health. DO NOT DELAY”¦..Read all you can about your disease. Talk to anyone who has the disease or to any medical professional with a background in the disease. And get a referral to an endocrinologist as soon as you can, treat your illness with a specialist. This is a disease, not something in your head. It has a name, and it’s called hypothyroidism.

Sherrie O

State College, PA

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10 Responses to “Journey of a Thousand Miles — All Uphill”

  1. Linda says:

    Sherrie, Your letter really spoke to me. Thank you so much. I can really relate to the loss of a med that was “working”. When I was diagnosed I was sent to an Endo immediately. He put me on Armour (sorry it didn’t work for you) and I was “fine” for several years. (after the initial every 6 week tweeking) I didn’t realize the searousness of being Hypo intill the “Armour shortage”. Then I started doing my homework and learning everything I could. It still helps to have you (and others) incourage me to be more proactive in my treatment. I got spoiled and complacent by the years of “ok” that it is taking me longer now to realize that I have to take charge of my health. Thanks for letter and Thanks to everyone here for listening and helping me.

  2. Sarah says:

    Thanks for sharing your story, Sherrie. It is so tough to find the right meds that work for you as an individual. I am frustrated right now because I’d like to at least get the opportunity to try Armour, but it’s not even available where I live (Germany). It might be possible to get it imported, but it wouldn’t be that easy. That said, I’m on a synthetic T3/T4 combo ““ I just can’t help wondering if I would be faring better on NDT. I think that patients with chronic illness deserve to have access to all medicines available beause it really is trial and error and too many docs base our wellbeing on our blood levels alone. My recent TSH came back as 0.02, which is hyper in terms of levels, but I am pretty damn sure I’m not hyper. I’m on a drug called Metformin, which is known for suppressing the TSH without affecting the free T3 and free T4 (which are the numbers a good doctor should be checking as these are the active thyroid hormones). Luckily, my doc does check these and I’ll make sure to tell him that I don’t want to be treated by TSH or blood levels alone. I’m finally getting to the point where I am starting to get a little bit of energy and no doctor is going to take that away from me. I still get tired a lot, but I feel like I am finally making progress. There are no hard and fast rules for feel-good blood levels sadly ““ there are guidelines, but everybody is different. That said, the TSHs you mentioned certainly suggest that you are hypo and your doctor should realise that. I can understand why you want to give him a chance, but I think it is good that you are going to ask for a referral if you don’t start feeling better. I have heard that integrative doctors are supposed to be good too, but ideally I’d choose someone who uses both natural and conventional medicine. My sister-in-law (who we are pretty sure has thyroid disease) was basically told that her blood levels look fine, the doctor still suspects a thyroid problem, but she should just take her vitamins. I was so frustrated for her ““ whilst vitamins can help, in H’s case she is definitely going to need more than that. I was also angry at the doctor for not even palpating H’s neck (feeling for thyroid nodules) or doing an ultrasound or iodine uptake scan. Like H, my fiancé’s blood levels were also normal, but he has thyroid disease, which was not diagnosed by the first but by the second doc we went to because he looked beyond the blood levels. I too could see that my fiancé might be at risk due to his symptoms, so I am glad that I got him to see our doc. Keep us posted on how it goes for you! Your desire to promote awareness and research is inspiring!

  3. Joanna says:

    Sherrie, thank you so much for sharing this letter. You speak so truly to the importance of self-advocacy. Most doctors won’t fight for us. We have to fight for ourselves. It can be so very tiring, can’t it?

    Thank you for your encouraging words! I’m so glad you’re a part of this community!

    xoxo,
    Joanna

  4. Brooke Milander says:

    Very inspiring. You’ve been through so much, yet you are looking at everything in such a positive light. Stay strong, I know you can!

  5. Dear Thyroid says:

    Sherrie ““ What haven’t you been through?! So sorry that you’ve endured as much as you have. Here’s to brighter and better days ahead.

    Very proud of you for penning this beautiful letter and having the courage to share it with all of us, we really appreciate it and you!

    xo

  6. Rania Ismail says:

    Wow! you really have been threw a lot! Thanks for pushing us to advicate for our selves!

  7. Lolly says:

    Sherrie,

    Thanks for sharing your letter sorry for the loss of your mother too.

    Just because you get referred to an Endo doesn’t mean you will get any better treatment depends on the endo you see. I have just let mine go after doing what you did waiting and seeing but he still wasn’t helping me so now I am helping myself.

    I wish you luck and hope that you can get stable on your present medication and as for saying 20-30 TSH well that is criminal, think you do really need to see someone else for your hypothyroidism you can still keep your primary care doctor right? but I wouln’t be letting him treat me for Hypo that’s for sure. Pleased to hear you were able to advocate and speak up for yourself.

    Lollyx

  8. Donna says:

    Hi Sherrie, I think you are amazing and brave beyond words! I live in Pittsburgh and my endo is at The Center for Diabetes and Endocrinology in Oakland. If you feel the need to go that route and need a partner in crime I would be more than happy to come with you. I am hitting my four year mark as a follicular thyroid cancer survivor and am learning the hard way about advocating for myself and truly want to reach out to others so we get the care and treatment we deserve. Take care and good luck! Hugs!

    Donna

  9. Raquel Aceves says:

    Sherri, your letter my words. Your wonders my concerns, your surprises my madness. I was doing wonderfully with Thyrolar 3 which i was taking since 1995. I came to USA and my endo did not like the treatment and put me in his treatment but first he wanted “to clean” my blood and put me off hormone replacement to start with Synthroid only. Well no later than 3 months with no medication, I frankly and highly complained with my endo and told him to bring my life back, that I was falling asleep everywhere, no motivated, and with need to keep my job up. He started Synthroid, and the same situation, he said that thyrolar kept my levels high as Hyperthyroid when I’m Hypo (due a Thyroidectomy). We neded figuring out that Thyrolar 3 was for me and put me back until it was out or Market, since I’m on Synthroid and Cytomel, nothing is the same besides that Synthroid one of the ingredients is Acacia (bad for those with allergies to hay, grass and trees – my case) worsen yours allergies and make not to work properly as a hormone replacement – again my case – I did not know about this ingredient, andI lived with pain in my ears, throat and you name it due “my allergies” Alegra D, Zyrtec, you name it nothing stop the feelings to the point to put me down bad last March 2013. After knowing this, I suspended Synthorid and magically, ears, throat, sneezing no longer live with me. However, since I returned to generic of Synthroid, I’m living in hell, tired, sleepy, sensitive to cold and heat, retaining fluids, new Endo did not want me to put in other brand I read about it Nature-Throid that is the equivalent as Thyrolar because it has the combination of T4 and T3. I’m looking to return to my former Endo (he moved far away from home and picked a new one). I will talk with him to put me and to try Nature-Throid.
    Anyway, your results and concerns are just like mine, I’m Vegeterian, no eggs, family with no history of Cholesterol, eat a lot of fresh veggies and fruit, and my levels of bad cholesterol raised to almost 200 – Ridiculous, I cannot diet more, and to work out more. Pharmacist must be more considered to conditions, there’s no medical Oath at all.

  10. Raquel Aceves says:

    I forgot to say. Thank you for sharing.

    Raquel

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