Congenital hypothyroidism, anyone else,

[tee27]

Hiya, I've just joined and am amazed by all the research the members seem to have done. I have congenital hypothyroidism and have been on levothyroxine 43 years. I do have concerns about this but have asked my doctor, who, I have had for the last 8 years and do generally trust well, about alternatives. He more or less shut me down straight off saying my thyroid function test as perfect. I don't feel perfect. He said I needed vitamin D. Since reading some of the posts on here these comments do raise flags. But probably the one most concerning is that thyroid function tests should be fasting tests for most accurate results, mine never have been.I am now concerned as a lot of the niggles I've been putting down to just getting on a bit seem to be appearing in others on this medication too. Does anyone else have congenital hypothyroidism or been on levothyroxine for such a long time?

[jimh111]

You would really need to run a thyroid blood test to include TSH, fT3 and fT4. Often antibodies tests are also run but as your hypothyroidism is congenital they are unlikely to be any use. There is evidence that patients who have no thyroid function may need some liothyronine as well as levothyroxine.

It would help if you could describe your 'niggles', what the symptoms are and how much they affect you.

Fasting does not affect thyroid blood tests. Unfortunately some of the research done was sloppy, they tested patients before and after breakfast and assumed differences were due to fasting when in fact they were due to the time of day the blood was taken. TSH is higher early in the morning. More recent research shows fasting does not make a difference. In any event we should not focus on small changes in blood test results, it's more important to observe our response to treatment. In short, your blood tests will have been accurate but you may not be getting optimal treatment.

[tee27 in reply to jimh111]

Thank you for your fast response, over the last few years I have started to get a pains in my knees, hips and now hands. My father has arthritis so I assumed that this was the same. I saw doctor who referred me to physio after blood tests saying it was 'wear and tear' arthritis, way to make me feel like a hypochondriac. Added to this my frozen shoulder? And general lethargy. I feel this has been over the last few years so personally blame the reduction in levothyroxine but doc blames vitamin Do for everything. That was after I ruled out depression.

[jimh111 in reply to tee27]

GPs tend to respond to TSH only, which is a very poor marker for response to treatment. I would request a copy of patient records, especially thyroid blood test results. I would also get your TSH, fT3 and fT4 tested. It might be worth getting vit d, vit B12, ferritin and folate measured if they can be included at a small extra cost. It's quite common for GPs to believe hypothyroid patients only need to get their TSH in the reference interval to be well. In fact we need to have more optimal levels. You are probably undermedicated.

Hypothyroidism is associated with lethargy and aches and pains. You may be getting pains from aging but being hypothyroid would make them much worse. i had frozen shoulder from a combination of hypothyroidism and my office desk being in a cold room. it took years to resolve but is completely gone now. One tip for frozen shoulder is to get an electric blanket, the type that goes below the bottom sheet and can be left on. A mattress has considerable mass - try lifting one. When a mattress gets cold and you go into bed the mattress sucks heat out of your body for hours. Warming the mattress before you go to bed will make a big difference in the long term. Also take a magnesium supplement as most people are deficient and low magnesium increases chronic pain.

[tee27]

thanks for this. I will go and request these bloods to be done and ask for a printout of results. I feel stupid that it has taken this long. Its only since my daughter was diagnosed about 7 years ago that I have given it a second thought. She was 13, and now has a son of her own who was premature. I also think she was under treated whilst pregnant as they did not raise her thyroid, but in fact decreased it?

[Mamapea1]

Welcome tee27 ~ you are in the right place!👍 and don't feel stupid, I have been on Levo (and ill) for 25 years! This forum is a mine of information with lovely members🌻. Check out all the info on vitamins/minerals etc. ~ SeasideSusie has a wealth of knowledge and gives out great links on them. Your GP may not provide all the tests you require, especially if yours is the type that make you feel you're a hypochondriac😳 (most are) but private tests are available via links on here, which many members use.

Good luck🍀 ~ better late than never (so I keep telling myself😊) 💕xx

[tee27]

sorry haven't been on for a while, till the other day. have now asked to be referred to Endo as GP not really listening to me. keeps saying I have iron deficiency or vitamin D is low. Its always a different thing but never my thyroid.

[dogmama75]

Hi! I was born 43 years ago also! About a month or so, I became very I'll and was hospitalized because I was so sick. My parents even baptized me when I was in the hospital! They performed a multiple of tests. My mom told me that it was very difficult for them to draw blood, and had to draw blood from my foot and my throat. They found out through a TSH blood tests that I have hypothyroidism. I have been taking synthroid ever since. About 5 years ago they had switched my dose to 200 (mcg? Or 2.0 mcg). Now, I am taking .137 mcg.

They suggest taking it with water 45 min before breakfast in order for it to metabolize. A secondary condition I have is Raynaud's syndrome among others. I have heard that there have been many people who were born in the 70's have been born with hypothyroidism. Was it just that they became more aware of this? Is there something that our mother's ate that contained something that changed our physiological makeup? (Now that are finding so many things in our processed foods that are harmful? How genetic is it? Are there specific studies about the possible causes? I am tempted to get the 23&Me DNA test. I am just very curious. Thank you for reading my post and any answers to my long list of questions.