Advice please, hypo symptoms but hyper results!

I found this site a few weeks ago, which was a revelation for me, and managed to get a doctor appt. I was armed with all my info and the doctor made me feel like I was a dafty who self medicated through the internet, however, I remained calm and I managed to get some bloods taken along with a referral.

My symptoms are all hypo, but, my bloods results at the doctors were TSH <0.02 (0.35-4.5) and T4 26 (10-25) I was told I was on too high a dose of Levo (175mcg) but they wouldn't do anything until I saw the specialist. I have the 'specialist' on Friday, but, found out he is a general medical consultant, not an endo specialist. I suspect he will do some more test before I am referred again...

Any advice as to what I should ask to be tested, and, any clues as to why I would have hypo symptoms and test hyper?

thanks!!

16 Replies

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  • This is my experience and may be different for you; I recently went out of my optimal (TSH between 1-2, T4 around 22) to TSH of 0.03, T4 of 26 and I had a return of many symptoms which I usually associate with my hypo symptoms including insomnia... A blood test showed I was not hypo. I think if my thyroid hormones are too low or too high, even slightly, I get symptoms which can be either hypo or hyper. I think the only consistency with me is bowels; hypo=constipation and hyper=very loose. In my opinion, medicating by symptoms alone can throw up it's own problems without being sure which relates to which condition.

  • You need to have a free T3 blood test to see exactly what is going on. It may be you are not converting T4 to T3 very well and so T4 is pooling, causing high T4 result and consequently a low TSH. This happened to me. Make sure they do all three tests again, i.e free T4 free T 3 and TSH. You may need the addition T3 to make you feel well. Hope you get good treatment on Friday. x

  • Thanks, this makes sense to me!! What do you do? Just up/reduce meds as necessary?? The other thing that I have started to be aware of is after I eat, I get a sick feeling....Been exploring gluten free diet to see if this helps but can't quite make the jump yet!!

  • Hi siggyk

    I know you are new to forum but if you want to answer a specific comment you have to press the yellow Reply to this, otherwise the person isn't notified and you may require a response.

  • Thanks Hennerton, I will make sure I get these tests done too,

  • Hi Personally I would say the secret is in your FT3, what is it with ranges? It is true you are on too much T4, levo, which should be about third of the range. However, if feeling ill then I would suggest that you also need a little T3, depending on the FT3 result along with the others.

    I hope that gives you ideas.

    Jackie

  • Must get a FT3 result. I am hypo and my TSH suppressed. My last test put FT4 at top of range but FT3 much lower. Endo said drop Levo. Said tried that, doesn't work, he said probably wouldn't so posted results here and advice was either not converting well or RT3 so I decided to go the supplements way and see if could help conversion and feeling much better. You can never get a true picture without a full screening. If this was done when first diagnosed and GP's had more understanding I'm sure in the long run it would cost the NHS less money and us years of suffering needlessly.

  • What a crock of s**t

    your TSH is simply suppressed because you are on Levo as the pituarity feedback loop does not need to work then to flog a failing thyroid

    as for your Free T4 its only 26 when the top of the range is 25

    you might also have central/2ndary hypothyroid and in which case your TSH is likely to be non existant

    You need to be treated on symptoms not on blood tests

    You never know a General Medicine consultant may be better than an endo

  • Hi what do you mean by central/secondary hypothyroid?? My pituitary could have the issue, not the thyroid??

  • This short extract (and the link to the full paper) might help:

    Central hypothyroidism is defined as hypothyroidism due to insufficient stimulation by thyroid stimulating hormone (TSH) of an otherwise normal thyroid gland. It has an estimated prevalence of approximately 1 in 80,000 to 1 in 120,000. It can be secondary hypothyroidism (pituitary) or tertiary hypothyroidism (hypothalamus) in origin. In children, it is usually caused by craniopharyngiomas or previous cranial irradiation for brain tumors or hematological malignancies. In adults, it is usually due to pituitary macroadenomas, pituitary surgeries or post-irradiation. Fatigue and peripheral edema are the most specific clinical features. Diagnosis is established by the presence of normal to low-normal TSH on the background of low-normal thyroid hormones, confirmed by the thyrotropin releasing hormone stimulation test.

    ncbi.nlm.nih.gov/pmc/articl...

    My thoughts include asking whether you took your levothyroxine in the hours before the blood was drawn for your test. If so, that could be contributing to the fairly high FT4 while not feeling that way.

    I also believe you should be checked for iron (precise choice of tests depends on doctor involved, location, etc.), vitamin B12, folates, vitamin D and a full blood count.

    Rod

  • Thanks, I took my meds in the morning and had the blood test a couple of hours later...doh!

  • "A couple of hours", very unfortunately, is probably when you'd have the highest peak of FT4 after taking levothyroxine. :-(

    At least you might now have a partial explanation.

    Rod

  • Because the blood tests only measure what's going round in your blood not whether its working or not!! I tend to ignore blood tests and go on how I feel, its the only reliable way! And NEVER let your doctor reduce your meds by blood tests alone, they rarely put up the dosage if and when you need it.

  • If you took your Levo the night before, or on the morning of your blood test, then you will get a higher T4 and lower TSH. Most people on this forum do not take their meds for a period before a blood test to get a more meaningful result.

    General medical consultants tend to do mainly endocrinology and can be just as good as an endo.

  • Thanks everyone, I will certainly get the other tests done..and not take my meds the day of my appt. I normally take them 1st thing..my appt is in the evening.

  • Central/2ndary hypothyroid is when pituarity is damaged/failed and thus TSH is almost non existant

    however if you took your meds in the morning and had blood test in the evening you will land up with results that indicate hyperthyroid and your doctor will reduce your meds

    hence its vital never to take thyroid meds for 24 hours before a test just as you should also be treated on symptoms not on blood tests

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