TSH out of range, any advice on where to go from here?

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This is my first time posting so please bear with me.

I was diagnosed with hypothyroidism (Hashimoto's) last summer.

My first test results were:

Free T4 5.5pmol/L (11-23)

TSH over 100mU/L (0.27 - 4.5) 

I was also deficient in iron, B12 and vit D but these have been treated and are in normal range.

I was put on 50mcg of levothyroxine and tested again with these results:

Free T4 14.6pmol/L

TSH 34.3mU/L

Levothyroxine subsequently increased to 100mcg and final blood test was in November:

Free T4 18.5pmol/L (11 - 23)

TSH 6.4mU/L (0.27 - 4.5)

I was then told my medication would remain the same and I wasn't to be tested for 6 months which will put me in June. I could have cried.

I don't understand how my TSH levels can be out of range and my current dosage be appropriate?

My real issue is that I feel no improvement being on this dose of medication, even though my levels have improved I still have all the symptoms I had before including body pain, anxiety, lack of energy and mood swings

Has anyone been in a similar position and do you have any advice?

 

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7 Replies

  • Posted

    My endocrinologist tests every three months, not six. However you should be aware that changes in medication can take weeks or months to develop a change in symptoms. Even so, I’m assuming that you have been on the 100 dose for at least three months, so if it was going to affect your symptoms you should have seen some change by now.

    Overmedication can gave some unpleasant side effects so your doctor is being cautious. Nevertheless I would go back to her or ask to be referred to an endocrinologist.

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  • Posted

    Hi,a'm also hypothetical my TSH, was always high and i use 75mg but my last lab tests were normal the problem is I have the same symptoms like yours I think the only option is to continue with this meds.my question is how long will this end

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    • Posted

      There are other options. Try some essential amino acids. 

      For me, one of the red flag warning signs that my thyroid is down is I start crying. (So NOT my personality.) I take the essential amino acids and I feel better within an hour.

      Read the posts on levothyroxin. It doesn’t work for a lot of people and has many  irreversibleside effects. I recently found I have autoimmune pancreatitis which is really horrible, in addition to all the other problems resulting from this harmful drug. I wish I’d never taken it, but I was desperate and thought I didn’t have any choice.

       If you feel it isn’t working, try something else. The best treatment if you want thyroid replacement is a natural OTC called ThyroGold. You can order yourself online.

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  • Posted

    Emma,  you’ve been on this medication for months and no improvement?  Follow your gut feeling. If it isn’t helping, it isn’t worth the side effects. 

    You also are deficient in several vitamins? Chances are you have gut issues as well.  There is an extremely high incidence of pancreatitis with thyroid disease. This correlation increases with the use of There are other options. Try some essential amino acids. 

     If you feel it isn’t working, try something else. The best treatment (closest to human thyroxin ratios) if you want thyroid replacement is a natural OTC called ThyroGold. You can order yourself online.

    There is an extremely high correlation between thyroid disease and pancreatitis, which has been shown to be worsened 

     in certain demographic groups that have been tested. Both result in malnutrition, abdominal pain and a myriad of stomach disorders.  While most people go for probiotics, diet, digestive enzymes can improve pancreatice function and digestion. This helps the malnutrition, which amazingly helps with everything. Fir example, symptoms of magnesium deficiency can mimick hypothyroid symptoms.

    There’s a huge connection between thyroid, immune system, pancreas, gut, liver, gallbladder and adrenals. There are many articles on this. Do a search with hypothyroid and any one of these organs and you’ll get a ton of information.

    Many thyroid patients find they troubleshoot every aspect of their health because the meds don’t really solve the endocrine/ immune system problems and if your thyroid is down chances are you’ve got subclinical issues somewhere else. Best to troubleshoot your health before thyroid meds so you don’t have to account for side effects.

    If you read the informational insert that comes with your medicine (and all prescription thyroid meds), it says right on it that this medication should not be used if you have adrenal problems. Unfortunately, it isn’t standard practice to test for adrenal problems prior to thyroid medication. This is only one example of the many missing links in thyroid treatment.

    Also, if you want an earful, read the posts in the levothyroxin group “unacceptable side effects of levothyroxin”. ‘‘This one post has more than a thousand comments. So you see what sorts of things others have dealt with, and you don’t feel so crazy.

    Feel free to message me privately and I’m happy to send a link to an excellent article that explains the link between thyroid disease and the rest of the endocrine system, gut and immune system. 

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  • Posted

    Yes. Follow your gut feeling and find something that works. 

    Your low vitamins indicate possible gut problems. You’ll need to troubleshoot.

    I write a more extensive response that got kicked into meditation, so feel free to send me a private note.

    Also read here in the levothyroxin group, “unacceptable side effects of levothyroxin” . This post pretty much gives a good starting point for what you’re dealing with. There are over a thousand responses by people who offer support.

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  • Posted

    Emma, by all means experiment with things like Thyro Gold and amino acids if you are  inclined to. But I will repeat my advice that most people do very well on Levothyroxine.  I did for many years, absolutely fine, full of energy, no symptoms. Now some of the tiredness is back - maybe just getting old? - but Thyro Gold And aminos have done nothing for me, and oh by the way, I tried them with the knowledge and support of my open-minded endocrinologist.

    So by all means be assertive with your physician about getting tested sooner, maybe ask to see an endocrinologist as well. But do not just go off and do your own thing without keeping your doctor in the loop, because that’s just a way to have her throw up her hands and cast you adrift.

    so keep up with the Levo - check it out on Wikipedia - and consider that the folks who come to this site with horror stories are in a minority. The vast majority who are doing just fine never come here so you only hear one side of the story.

    You must understand that it will most likely take weeks or months to get the right dose and there is no way around that that.

    Finally, if the anxiety and mood swings get bad, a mild sedative like Atavan can take the edge off them without turning you into a zombie. 

    Good luck and keep us posted!

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    • Posted

      Hi Dave, thank you for the advice (and everyone else who's replied).

      I would be very wary about trying to self medicate. I've been on 100mcg for almost 5 months now with no improvement so I assumed that this dose isn't enough for me. I will take your advice and go see my GP sooner as waiting for June just seems unrealistic for me.

      I just couldn't get my head around the 6 month wait between blood tests, even if they were satisfied with my meds I thought they'd want to monitor me a bit more but hey ho.

      Being in the UK Levothyroxine is to the go to drug so if it doesn't suit me I don't know what alternatives would be available. One to ask the doc I guess!

      Thanks again and I will keep you posted.

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