Please help 1st timer

Am writing on behalf of my beautiful wife. She was hyper in her teens (undiagnosed) then after birth of child aged 21 was medicated but it went the other way and she became hypo. Has been on 100mg levo since then. Over the past 3 years has been putting on weight Ben though she eats very little has gone from a size 10 to 16/18.Has a number of gyno issues stomach bloating joint pains muscle aches extreme fatigue mood swings bouts of severe depression and feels like she can't go on. Blood tests keep showing within range and doctor will not refer to end I keep a saying bloods are ok. Have been reading posts on here and it seems that you guys may be able to help us get things moving by giving advice on what tests to ask for and questions to put to go to help get an improvement in her health. Any suggestions tips or ideas will be gratefully received. Thanks

11 Replies

  • The first thing would be to get a copy of recent blood test with ranges and post them so the more informed can have a look. I recently had my meds decreased and went back hypo very rapidly. My THS was 4.92, this was only just within the "normal range" and my GP was happy. Me on the other hand, I felt dreadfull weight had started to go back on. Painfull joints fatigue muscle weakness dry itchy skin brain fog. Well the list could go on. I put my dose back to what it was before and no one is the wiser. There are lots of co factors as well vit D B12 folate ferritin, but I'm not informed enough to advise, someone will soon. There is hope! and your wife is lucky to have your support..........

  • Thanks we are getting appt and will post results thanks again fro taking time to reply

  • Weight gain can be due to being on levothyroxine alone, as it doesn't always raise our metabolism sufficiently and sometimes the cause is that doctors don't increase levo or any other thyroid hormones (if the person is taking them).

    Many benefit from the addition of T3 (T3 also called liothyronine is the active hormone we all need in our receptor cells. Unfortunately in the UK it's rarely tested.

    This is an earlier post this week - and many people have found when, on an optimum, (that's when the dose makes the person feel well with no clinical symptoms - doctors used to medicate till symptoms disappeared but nowadays it's only on the blood tests and that can lead to us remaining unwell and the symptoms being treated with another product other than thyroid hormones.

    First thing your wife should do is make an appointment for a new blood test. It should be at the very earliest possible and fast although water can be taken.

    Also allow 24 hours between the last dose of levo and the blood test. This allows the TSH to be at its highest as doctors are apt to adjust levo according to the results which is the wrong thing to do.

    We need a TSH of around 1 or lower and some of us suppressed. Doctors are very poorly trained - unless they themselves or have a close relative who has a problem with a dysfunctional thyroid gland.

    Also ask for Vitamin B12, Vit D, iron, ferritin and folate to be tested. These are usually low and cause symptoms too. New information re B12 should be around 1,000 and I think the top of most ranges are about 600.

    Always get a print-out of the blood test results with the ranges for your own records and post if you have a query.

    (I am not medically qualifed but have gone through the rounds like many on this forum and I am now well).

  • Also it is vital if you are having bloods done. They need to be first thing as early as possible, and fasting, only water, and no thyroid meds 24 hrs prior, Drs seem obsessed with THS only this is highest first thing and drops of quite rapidly once you have eaten and as the morning progresses. So it is important that your wife's THS is as high as possible else they will say "your bloods are fine" when your wife feels like death warmed over. My advice would be read as much as you can and educate yourself. It is very hard for anyone in the grips of this disease to take on and retain information. There are some good books out there stop the thyroid madness by janie A Bowthorpe is a good one.

  • Re stomach issues - we usually have low stomach acid (being hypo - slow - and everything in our body slows down. Pulse/temp too. As symptoms are nearly identical to high acid GP usually prescribes antacids.

  • Ask for all her thyroid blood test results, including the older ones. Also I strongly suggest you insist on an increase in her levothyroxine now. Go along with her to the doctors as we can be very vulnerable and lack assertiveness when hypothyroid.

    Magnesium citrate is good for bloating / muscle pains. All her symptoms are symptoms of hypothyroidism. If you get grief from the doctor make the suggestion that they are being 'negligent' in ignoring her hypothyroid symptoms.

  • Thanks for all replies and advice will post results as soon as we get them and previous results

  • Is there celiac disease in her family? The stomach problems and bloating could be caused by problems digesting gluten (or dairy).

  • Raised thyroid antibodies would indicate autoimmune thyroid, (Hashimoto's) by far the most common cause. We need both types (TPO and TG) checking, as being high in either or both indicates Hashimoto's. Sadly NHS mainly refuses to test TG antibodies.

    Will GP do coeliac blood test, before your wife tries gluten free diet. Many of us are "just" gluten intolerant - doesn't show up in a coeliac test.

    But if have Hashimoto's- then a 100% gluten free diet can help, as can selenium supplements.

    If GP won't /can't get blood tests done (NHS labs often overrule GP requests) then, like many here you may need to get full set of blood tests done privately

    Most popular test is thyroid plus eleven from blue horizon as checks b12, vitamin d, folate & ferritin

    Some patients who started out hyper, have to subsequently have a very low TSH to feel better/ or add in taking some T3. There is a theory that the Period of being hyper first sometimes seems to permanently suppress the HPA or HPT axis (hypothalamus/pituitary/adrenal or hypothalamus/pituitary/thyroid axis)

  • Once again am very thankful to all of you who took the time and effort to reply. We Will go into the GPS appt with alot more confidence and ask for all the tests that have been advised on. Thanks from stash

  • I would order my own labs through blue horizon labs, no prescription needed, self pay, and also, see if they have antibodies testing for autoimmune cause of thyroid disease..which i have no doubt she has. There are ways to put this in remission through diet. See isabella wentz and Dr. Mark Hymans websites for info on healing autoimmune disease..something mainstream medicine does not do, just hand out pills. She will be put on or offered psych meds, while her thyroid and immune system are not treated properly. I hate doctors.

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