Curious about Wilson's disease as it came up in a symptom checker online. Yes, out of desperation I went to a online diagnostic tool. Endo has got me at 50 mcg Synthroid but I have discontinued use (heart palps), as well as no reduction in symptoms. Anyways, this symptom checker tool came out with the top 10 diseases that match my symptoms. Most of them I have been checked for and others I simply don't have, or wouldn't make sense for me to have. But I looked at Wilson's symptoms and they match up pretty well with me. Particularly the lump in throat sensation present with patients (despite the slightly disproportional lobe sizes of each side), and balance/coordination issues. I'm just not getting any better with anything I try, I've never had copper or Caeruloplasmin checked. I'll list my symptoms, I guess if anyone has Wilson's I would love to hear if these are similar.
Did the endo test your vitamin and mineral levels - vitamin D, vitamin B12, folate, iron (both ferritin and heamoglobin)? Do you have the results and ranges? Did the endo test your thyroid antibodies to rule out autoimmune thyroid disease?
If you are deficient in any nutrient then you are going to not feel well however much synthroid is prescribed. By deficient I would add this means your nutrient levels are not optimal which is different from being in range. Posters on here can advise as the majority of doctors know nothing about nutrition.
If you have autoimmune thyroid disease then taking daily selenium supplements - up to 200mcg- and going completely gluten free helps a lot.
Also until you are on the correct dose of synthroid you can feel terrible. You may need much more until your TSH is below 1 until you feel better. This takes months to achieve as your dose of synthroid needs to be increased by 25mcg every 6-8 weeks after a blood test to check your TSH.
Oh and the advice here is heart burn in hypothyroidism is caused by too little stomach acid. Taking apple cider vinegar rather than using PPI or heart burn relief tablets helps by increasing stomach acid.
The only reason I'm writing this is Dr Wilson actually killed one of his patients so Wilson's syndrome is discredited, and from the symptoms and signs you report you seen to have under medicated hypothyroidism with vitamin deficiencies.
Different Wilson. This is a copper-related disease, not the so-called Wilson's syndrome (thyroid hormone resistance) and recognised by NHS or would be if they could diagnose their way out of a turnstile.
Stating "low" without the results and ranges makes it impossible for any poster to point you in the specific direction of what you need to do. For example for vitamin D, test results of 25nmol/l and 48nmol/l are both low but the treatment of them is different.
Also listing random results and saying others are "fine" makes it impossible to help as test results need to be looked at as a group.
I would suggest you get the results and ranges for all your recent thyroid and nutrient tests, and start a new thread listing them ALL so you can get more detailed advice.
I don't know anything about Wilson's Disease but this is an excerpt:
Wilson's disease is a genetic disorder in which copper builds up in the body.[1] Symptoms are typically related to the brain and liver.[1] Liver related symptoms include vomiting, weakness, fluid build up in the abdomen, swelling of the legs, yellowish skin, and itchiness.[1] Brain related symptoms include tremors, muscle stiffness, trouble speaking, personality changes, anxiety, and seeing or hearing things that others do not.[1]
It is probably more likely you should exclude hypothyroidism but sometimes many are not if the TSH hasn't reached a certain level.
What you need to test is:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.
The test has to be at the very earliest, fasting (you can drink water) and if you were hypo and take hormones, you'd allow a gap of 24 hours between last dose and test and take afterwards.
Get a print-out with the ranges. Ranges are very important to enable comments to be made.
50mcg of Synthroid is a starting dose and has to be increased every six weeks until your TSH is 1 or lower. We can have palpitations when first beginning as our body's store of hormones is depleted and we cannot just jump to a large dose. It is 50mcg for six weeks, blood tests, and increase of 25 mcg every six weeks until we feel much better. We can eventually reach a dose of 200mcg + i.e. a dose which relieves all clinical symptoms and makes us feel well.
Our heart and brain have the most T3 receptor cells and T4 (levothyroxine) when on an optimum dose converts to T3 the only Active Thyroid hormone. T4 is inactive. (synthroid).
No I don't mean Wilson's temperature syndrome. I meant Wilson's disease regarding a rare genetic error resulting in the inability to remove copper from the body . Unfortunate and irritating (not you) that what little I can find on Wilson's disease gets muddled with Wilson's temperature syndrome symptoms and jargon.
Derrick, I would lay money on every symptom being caused directly or indirectly by untreated hypothyroidism.
50mcg was never going to make any difference - it’s a starter dose and not one on which anyone is supposed to stay. Your blood should be tested 6-8 weeks after a dose change, with the dose adjusted upwards until FT4 and FT3 are high in their respective ranges (TSH becomes irrelevant once you start thyroid hormone replacement).
Untreated hypothyroidism (and undertreated hypothyroidism) causes gut absorption problems, leading to vitamin and mineral deficiencies.
Find out what your latest thyroid blood test results are and get yourself back on thyroid hormones.
My TSH was .47 range cutoff is .45 and my t4 was .96 range cutoff is .7 (America non-metric). My T3 is fine, smack dab in the middle/upper portion of the range. The lump in my throat perplexes me because my thyroid was just a little disproportional.
Wilson's possibility - just got test back for Ceruloplasmin, It is low. 16 mg/dL range 20-60 mg/dL
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Test? Private or GP
Wilson's temperature syndrome & your thermometer
Lyme disease? Interesting link.
