Hypothyroid SOS

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wlorenm
wlorenm Posts: 37
in Health and Weight Loss
So my thyroid results just came back as a "satisfactory" level. The TSH level was 3.8 but I still have a mass of symptoms. I have a consultation to discuss on Monday. What do I do or ask or investigate on Monday?!
Any help would be mega appreciated.
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Replies

  • RodaRose
    RodaRose Posts: 9,562 Member
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    Perhaps -- bring in a list of symptoms, medication, things that work, . . . .
    As for talking -- sometimes you can only focus on two or three big things in one appt.
  • Sharon_C
    Sharon_C Posts: 2,132 Member
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    There's a group here on MFP for Hypo/Hyperthyroid. They might be able to help you.

    http://www.myfitnesspal.com/groups/home/753-hypothyroidism-and-hyperthyroidism
  • firstsip
    firstsip Posts: 8,399 Member
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    Your bloodwork may be normal, but your thyroid/dosage hasn't caught up yet.

    The unfortunate thing about thyroid hormones is that it's all a bit of a waiting game. You could have gotten perfectly normal levels, feel shirlitty... than feel fine in a month as your symptoms alleviate. Blood level readings for hormones are quicker to change and fluctuate.

    Let your doctor know how you're feeling, but in general, it may be a waiting game. Make sure your T3 and T4 are also normal, as well. I suggest seeing an endo if you're not already.
  • thyella
    thyella Posts: 21 Member
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    Have him/her go over each result and explain everything so you understand. If there is no real disease diagnosis request to see a nutritionist or if available at medical or hospital overseen weightless program. There are a lot of these around because of all the bariatric surgery being done, but they also just council people on weight loss and exercise. I'm doing one and my insurance pays for it completely. Good luck.
  • Lizzy622
    Lizzy622 Posts: 3,705 Member
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    Also what else were you tested for? You may may be deficient in vitamin D and/or iron. Selenium is also essential to breaking T4 to usable T3. So even with TSH levels being normal you may still have symptoms.
  • wlorenm
    wlorenm Posts: 37
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    I was highly anaemic and he's retesting that. But it doesn't explain the swollen thyroid gland, weight gain, dry weak hair, dry skin amongst a number of other symptoms. I'm so frustrated. I'm living on one healthy meal a day and still gaining?!
  • firstsip
    firstsip Posts: 8,399 Member
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    I was highly anaemic and he's retesting that. But it doesn't explain the swollen thyroid gland, weight gain, dry weak hair, dry skin amongst a number of other symptoms. I'm so frustrated. I'm living on one healthy meal a day and still gaining?!

    Swollen gland?! Did they do an ultrasound?
  • wlorenm
    wlorenm Posts: 37
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    I was highly anaemic and he's retesting that. But it doesn't explain the swollen thyroid gland, weight gain, dry weak hair, dry skin amongst a number of other symptoms. I'm so frustrated. I'm living on one healthy meal a day and still gaining?!

    Swollen gland?! Did they do an ultrasound?

    No he just examined it manually and conducted the bloods?
  • nehtaeh
    nehtaeh Posts: 2,977 Member
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    Check out this website, http://www.stopthethyroidmadness.com/.
  • perseverance14
    perseverance14 Posts: 1,364 Member
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    What "bloods", what tests? TSH is not enough. You could have Hashmoto's but you need a thryoid antibodies test to confirm or refute that (FYI most cases of hypothyroid are Hashimoto's but many Doctors routinely won't do antibody tests unless you ask). Is it important to know? Yes, Hashimotos is progressive, it is like fibrosis of the thyroid and gets worse over time. They should also be checking your free T4/T3 and thyroid uptake since you have symptoms.

    There is a school of thought that says if you have a very low dose of thyroid hormone (say 25 mcg/day) it can delay the onset of serious Hashimotos symptoms.

    You may need a better Doctor, I have Hashis and can tell you from experience the good Doctors who really know their stuff with thyroid issues are few and far between. Most just give the TSH test and if you go over 4 (or some even 5) give you Synthroid, and that is the best you get....there is much better to be had, but not easily found.

    ETA, when you have Hashi's you can be symptomatic, but not out of range, most Doctors won't treat until you are out of range, and by then you can be feeling really bad...be proactive. At least get tested once per year so you don't spend too long hypo without medication.
  • KarenB927
    KarenB927 Posts: 94 Member
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    I had the same problem. Even after testing normal for 3 tests (6-8 weeks between testing) I still felt like hell. Turns out I developed a problem with gluten. Once I cut that out, I felt like a brand new person, and was able to lose the weight I gained and then some, been able to keep it off, and even had my dosage lowered because once I lost more than 15 lbs my dose was too high. I suffered for a year following Radioactive Iodine treatment and became hypothyroid until I cut out gluten. My endocrinologist suggested the possibility when I complained at my one year checkup post RAI that not only did I NOT feel better, I felt worse and I was losing my hair on top of it. Cutting out gluten was the hardest and best thing I did in my life.
  • thatredheadedBAMF
    thatredheadedBAMF Posts: 25 Member
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    Hi,
    So 3.8 is NOT okay on labs that have the updated TSH reference range. And if you still feel bad, it doesn't matter what the numbers say: you need more T4. It doesn't bode well when a doctor is treating a number instead of the person. If you doc is also old (as in close to or over retirement age) and male, you are probably not going to get very far with this.

    Questions for your doctor:
    -Why is the lab he/she uses still using the outdated reference range for TSH?
    -Has he/she checked for anti-thyroid antibodies to see if you have Hashimoto's Disease?
    -Request a thyroid ultrasound.

    Note that the anti-bodies generated by your immune system with Hashimoto's can make you feel even worse. There have been studies that show a lower TSH in this population is helpful for resolving those symptoms. Also, Hashimoto's is a risk factor for thyroid cancer, so getting a thyroid ultrasound is even more important.

    Note that if you ask if you should be on more T4, they will likely give you excuses about cardiovascular risk, a heart attack, blah blah blah. Thyroid cancer survivors are on doses of T4 so high that they are clinically hyperthyroid. In those without concurrent cardiovascular issues, there is no increased risk of death from a cardiovascular event in that population. My point is that bumping you up to the next dose isn't going to give you a heart attack, so that's a b.s. excuse.
  • PhysicalGraffiti
    PhysicalGraffiti Posts: 6 Member
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    What are the new reference ranges for tsh, t3, and t4?
  • wlorenm
    wlorenm Posts: 37
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    Hi,
    So 3.8 is NOT okay on labs that have the updated TSH reference range. And if you still feel bad, it doesn't matter what the numbers say: you need more T4. It doesn't bode well when a doctor is treating a number instead of the person. If you doc is also old (as in close to or over retirement age) and male, you are probably not going to get very far with this.

    Questions for your doctor:
    -Why is the lab he/she uses still using the outdated reference range for TSH?
    -Has he/she checked for anti-thyroid antibodies to see if you have Hashimoto's Disease?
    -Request a thyroid ultrasound.

    Note that the anti-bodies generated by your immune system with Hashimoto's can make you feel even worse. There have been studies that show a lower TSH in this population is helpful for resolving those symptoms. Also, Hashimoto's is a risk factor for thyroid cancer, so getting a thyroid ultrasound is even more important.

    Note that if you ask if you should be on more T4, they will likely give you excuses about cardiovascular risk, a heart attack, blah blah blah. Thyroid cancer survivors are on doses of T4 so high that they are clinically hyperthyroid. In those without concurrent cardiovascular issues, there is no increased risk of death from a cardiovascular event in that population. My point is that bumping you up to the next dose isn't going to give you a heart attack, so that's a b.s. excuse.

    I'll take all this info with me definitely.
    Symptoms I have are Goitre, tired, hair loss and damage, dry legs and shins, no energy, I eat once a day and I'm still gaining weight, total disinterest in some things, snappy and frustrated, hard to concentrate at times, digestive issues, so cold and heavy menstrual cycle ( after it came back after 5months).

    I am miserable :(
  • wlorenm
    wlorenm Posts: 37
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    What "bloods", what tests? TSH is not enough. You could have Hashmoto's but you need a thryoid antibodies test to confirm or refute that (FYI most cases of hypothyroid are Hashimoto's but many Doctors routinely won't do antibody tests unless you ask). Is it important to know? Yes, Hashimotos is progressive, it is like fibrosis of the thyroid and gets worse over time. They should also be checking your free T4/T3 and thyroid uptake since you have symptoms.

    There is a school of thought that says if you have a very low dose of thyroid hormone (say 25 mcg/day) it can delay the onset of serious Hashimotos symptoms.

    You may need a better Doctor, I have Hashis and can tell you from experience the good Doctors who really know their stuff with thyroid issues are few and far between. Most just give the TSH test and if you go over 4 (or some even 5) give you Synthroid, and that is the best you get....there is much better to be had, but not easily found.

    ETA, when you have Hashi's you can be symptomatic, but not out of range, most Doctors won't treat until you are out of range, and by then you can be feeling really bad...be proactive. At least get tested once per year so you don't spend too long hypo without medication.

    I'm not sure what blood tests they were yet. It was all before I came on here to ask or find out what I should be tested for or looking for. He looked at my iron and it was highly anaemic. Then he took a liver and kidney function test and a thyroid test but I'll be able to know more on Monday!!!
    So worried hell shrug me off.
  • RunMyOregonBunsOff
    RunMyOregonBunsOff Posts: 862 Member
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    I just skimmed other replies so I'm sorry if this is duplicating anything.

    I was the same way and did some research. A lot of people that test normal but are still symptomatic, don't convert inactive T4 to active T3 very well so I talked to my doctor and she agreed that I should try Cytomel which is a synthetic T3. It has made all the difference in the world.

    Also, IF you have an intolerance to something like dairy or gluten, avoiding it can help. If you don't have an intolerance already, avoiding such foods is unlikely to help. Thyroid issues are typically the result of an auto immune disease and it can be triggered by all kinds of things. My doctor told me that she had a 50 year old patient that had hypothyroid symptoms show up as a result of having salmonella.
  • RunMyOregonBunsOff
    RunMyOregonBunsOff Posts: 862 Member
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    Also, you may want to increase your iodine consumption (regular table salt and some fish will do it).
  • wlorenm
    wlorenm Posts: 37
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    I just skimmed other replies so I'm sorry if this is duplicating anything.

    I was the same way and did some research. A lot of people that test normal but are still symptomatic, don't convert inactive T4 to active T3 very well so I talked to my doctor and she agreed that I should try Cytomel which is a synthetic T3. It has made all the difference in the world.

    Also, IF you have an intolerance to something like dairy or gluten, avoiding it can help. If you don't have an intolerance already, avoiding such foods is unlikely to help. Thyroid issues are typically the result of an auto immune disease and it can be triggered by all kinds of things. My doctor told me that she had a 50 year old patient that had hypothyroid symptoms show up as a result of having salmonella.

    The absolute nightmare I'm going to have is being in the UK. America seems so much more on the ball about it. It's just so frustrating. I'll get a print out of my bloods tomorrow and post them when I get them.

    Going out of my head.
    I eat fish so so much but I'll see about increasing the iodine. Hopefully my doctor will give me answers tomorrow - he's been open minded so far so I'm praying he won't just slap a normal label on my TSH and leave it at that.
  • zjpq
    zjpq Posts: 198 Member
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    any chance you also had your vit D checked? I thought it was my thyroid meds being low but actually my vit D was REALLY low. I feel heaps better after 3 weeks on supplements
  • andeey
    andeey Posts: 709 Member
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    Hi,
    So 3.8 is NOT okay on labs that have the updated TSH reference range. And if you still feel bad, it doesn't matter what the numbers say: you need more T4. It doesn't bode well when a doctor is treating a number instead of the person. If you doc is also old (as in close to or over retirement age) and male, you are probably not going to get very far with this.

    Questions for your doctor:
    -Why is the lab he/she uses still using the outdated reference range for TSH?
    -Has he/she checked for anti-thyroid antibodies to see if you have Hashimoto's Disease?
    -Request a thyroid ultrasound.

    Note that the anti-bodies generated by your immune system with Hashimoto's can make you feel even worse. There have been studies that show a lower TSH in this population is helpful for resolving those symptoms. Also, Hashimoto's is a risk factor for thyroid cancer, so getting a thyroid ultrasound is even more important.

    Note that if you ask if you should be on more T4, they will likely give you excuses about cardiovascular risk, a heart attack, blah blah blah. Thyroid cancer survivors are on doses of T4 so high that they are clinically hyperthyroid. In those without concurrent cardiovascular issues, there is no increased risk of death from a cardiovascular event in that population. My point is that bumping you up to the next dose isn't going to give you a heart attack, so that's a b.s. excuse.

    I'll take all this info with me definitely.
    Symptoms I have are Goitre, tired, hair loss and damage, dry legs and shins, no energy, I eat once a day and I'm still gaining weight, total disinterest in some things, snappy and frustrated, hard to concentrate at times, digestive issues, so cold and heavy menstrual cycle ( after it came back after 5months).

    I am miserable :(

    If you have a Goiter, then you have Hashimoto's and your Thyroid antibodies are the issue. You need to get your T3, T4, TSH and antibodies tested. Plus, ultrasound and perhaps a biopsy on the Goiter(s). You should also work with the Endo, not a regular doc, and also find one who will treat you for your *symptoms* not your labs (they are rare, but keep going until you find one).

    Good luck, you must take control and manage this yourself if you want to see relief ... and boy, when you get it, you will wonder why you suffered for so long ... speak up and get the help you need!

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