Help please, someone has scared me to death

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I was on another site and asked a questioned and someone said, my Endo is trying to kill me, he has no clue about treating thyroid, that my treatment could be causing heart disease and lung cancer.  My God who does that?  She said people being treat with levothyroxine meds are being treated in correctly and this is causing heart disease and lung cancer.  This treatment for hypo has been used for many years and altho I'm sure people have heart disease and some who get lung cancer during treatment, but hey that could happen with taking multi vitamins.  I couldn;t believe she was telling me all this and that going to an endo is going to kill me.  Yes I've had some issues with my tsh levels since developing another disorder that has caused me great stress and anxiety, so we've been working on getting the levels on track and its takin quite awhile.  I'm also on propranolol for headaches and dizziness, and of course she said you deficient in propranolol but you are in FT3, which is on the low side of normal, its 2.1.  So yes thats a problems, as are my cholestrol levels have gone up, but as my endo and ENT have told me, that propranolol and low TSH can cause this.  She made it sound like because my FT3 is low I'm doomed.  She kept saying get rid of that doc he is clueless.  I don't beleive that taking levo is causing heart & lung issues.  I know and my doc knows the Ft3 is low normal and we are working on things, as my TSH is 8,45.  But this person has worried me with all this, as now i'm feeling breathless almost and anxious, even tho I know  it will be ok, my health anxiety took over.  THanks for just listening.

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  • Posted

    I have been on levothyroxine 75 mg for underactive thyroid since last year and my level is normal now i also suffer with anxiety and taking citrilopram 10 mg
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  • Posted

    Hi Patty818

    I'm afraid I can't reassure you as I am only just waiting for my initial appt with an endocrinologist (May 18th 2017) after 4 years of my gp prescribing levothyroxine starting at 75mg but having to put it up every time I have 12 month blood test as levels are all out! .. now on 175mg and still not able to lose weight (despite being under dietitian, on 1200 calories per day and swimming 3-4 times per week)

    I had breast cancer in Aug 2015 (lumpectomy, chemotherapy & double mastectomy) with higher risk of recurrence due to it being triple negative cancer. My mum died aged 33 of breast cancer recurred as brain tumour & lung cancer so very interested in what you had to say.

    Hope you get some feedback, I would put my trust in the endocrinologist.


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  • Posted

     would imagine they were talking about an Italian study that was done.  The study pointed out  "that levothyroxine (T4) treatment can lead to medication-induced (iatrogenic) thyroid over-activity (hyperthyroidism) and oxidative stress that can lead to a significant patient discomfort. They also noted that oxidative stress is one of the causes of chronic diseases and cancer".  So, it seems to only pertain to if your on too much T4 meds, that would cause oxidative stress.  But it also staed that...."...hypothyroidism reduces the aggressiveness of some cancers because of the presence of thyroid hormone receptors on cancer cells, and spontaneous hypothyroidism may delay onset or reduce aggressiveness of cancers."..So unless you are extremely over medicated, then don't let it worry you.  Especially being your TSH is still high at *.45.  You are no where near being over medicated.  Hope this helps ease your mind some..

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  • Posted

    Actually, Patty, levothyroxin is definitely a drug to be used with caution. I was on it at high doses for less than three years and the side effects of levo are worse than my severe thyroid disease. In addition to causing arthritis, the levo nearly killed me and caused my thyroid cyst to grow like crazy. After my experience with horrible side effects and worsened thryroid disease, I would never in good conscious recommend this drug be taken by anyone. I feel the levo accelerated my disease, as well as caused premature aging, and caused severe autoimmune disease in the forms of fibromialgya and arthritis.

    When I did an online search a while back, I found levo was connected with 4 specific types of cancer (lung, thyroid, colon, ovary to my best recollection) as well as  fibromialgya, arthritis, bone loss, worsened hypothyroidism.

    Thyroid medication in general is known to be correlated with bone loss and heart problems. However, with hypothyroidism, you can get heart disease and bone loss, just slower than with the meds.

    Read the many posts here on "unacceptable side effects of levothyroxin". You'll get an earful from people who've really suffered from this drug.

    its unlikely that I will ever fully recover from the severe autoimmune disease caused by this drug. 

    Are you you in the US? Or someplace else. Synthroid, although used for decades only applied for FDA approval in 2001. It was approved the following year. 

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    • Posted

      Patty, just remember that synthetic thyroid hormone (synthroid, Levo etc) work very well for the vast majority of  hypothyroid people, and there is NO verified link to cancer.  Also remember that much of what one reads on these sites, well meant though it is, is anecdotal and to be treated as such. There NO evidence that Synthroid causes autoimmune disease either, so always exercise scepticism about what you read on the internet.
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    • Posted

      Agree with Dave 100%.  Levo works for most people, some it doesn't.  I feel so much better on levo.  I think it works great for me.  No symptoms at all really, and I feel better then I have in years.  Also.. I should point out that the study was only done through a corrolation of synthroid sales and lung cancer... So, I wouldn't worry about it.. also, it was only 1 study, and not very controlled.  I think that others who feel levo does not or didn't work for them, automatically tell others to get off it now, switch now.. turn back now, ect, when in all reality, only you yourself should make that desicion.  If it works for you, stick with it, if your still not feeling your best, switch to something else and look into different options.  Best wishes...

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    • Posted

      Hi Patty, I started on Armour, but they changed their formulation, so I switched to naturthroid. Then I moved and got a new Endo, who was very young. She put me on Synthroid, which was so bad, I feared I'd have a stroke or worse. When I called back, she was on pregnancy leave, so I went to another young Endo, who insisted my inability to function, migraines, exhaustion and massive water retention had nothing to do with the meds. 

      I then went to urgent care and found a doctor who recommended switching to a generic levo, then to a compounded levo while also increasing the dose. I tried to get the dose right for another two years, and kept gaining weight and getting sicker.

       About that point, I switched to a natural OTC glandular an about the same time, my foot had broken in multiple places and I was on bedrest  in spite of a stellar diet, I continued to gain massive amounts of weight... Stayed on the bovine glandular a year until they changed the formulation and I was having upset Stomach.  I felt way better on the glandular than the levo, that's for sure!  All in all, I had tried no less than 6 different prescription meds plus the OTC. I had also tried herbs and acupuncture, and diet throughout.

      By this time I had gone from a size 3 to a 12, everything hurt, massive water retention, bone loss, arthritis and still dealing with the broken foot after a year and a half because it wasn't healing due to bone deterioration, fibromialgya, you name it. I stopped going to the doc, continued with the acupuncture and started on a massive therapeutic dose of amino acids along with a normal thyroid support supplement, and acupuncture. So that's where I am now. The thyroid condition didn't seem to worsen significantly when I dropped the glandular and went to the amino acids. Though, when I miss the aminos I felt it a lot at first. I have a feeling I won't need to take the aminos forever. I'll get things as well as I can with the natural remedies. If it doesn't resolve  in the next year, I'll have to try the ThyroGold. 

      Still recovering from from the broken foot and just being able to exercise a little. Severe bursitis infection happened last week (agonizing pain!) so I'm back to taking it easy. I don't have any temptation to ever take prescription thyroid medication again. I really feel like it accelerated the thyroid disease and aged me prematurely. In addition to going from looking like a runway model to a frump.

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  • Posted

    Patty, a couple more important points. If you have thyroid disease, you do need to take it seriously and find a treatment that works for you. Levothyroxin is currently considered an acceptable form of treatment. Treatment fashions come and go, as it used to be fashionable to treat sore throats with tonsillectomies, and mental illness with shock treatment and lobotomies. I'm just saying acceptance doesn't always equate good treatment.

    You mentioned anxiety. Thyroid meds can cause anxiety, as can hypothyroidism. My experience is that the meds cause worse anxiety.

    Also, high or low T3 as well as incorrect ratios of T3/T4 can result in both anxiety and heart problems.

    If you have thyroid cysts or other growth on your thyroid, these can cause inflammation in the neck that presses on nerves and can cause severe headaches. Pressure and inflammation in the neck can interfere with the inner ear function, resulting in excessive fluid buildup in the inner ear. The thyroid medication suppresses both your thyroid and the production of TSH by the pituitary. I feel this suppression of the pituitary also caused migraines for me. Others have asked on this site about their dizziness being related to levothyroxin.

    The cholesterol panel and triglycerides levels, for me, turned out to be a huge indicator of thyroid problems, as it goes insanely high when I'm hypothyroid, even though my TSH doesn't go up above 2.5. I don't know if anyone else has made this connection, but my family and personal history are very low cholesterol panel, as well as a very disciplined diet, so when mine go wonky, I notice. And they seem to spike in connection with hypothyroidism. Just something to watch.


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