I have TSH of 4.87, Free T4 near the bottom of the range, huge family history of autoimmune thyroid disease and am myself coeliac - GP insists everything is completely normal though! Would really appreciate some advice on how to proceed.
As background, it was actually the GI consultant I see at the hospital for coeliac who ordered the tests. He wants me to be regularly monitored but the GP doesn't see a problem. My antibodies were negative. Having said that, my coeliac antibodies were only barely above the negative range when I was diagnosed with that (different GP who referred me based on symptoms, pretty sure current one would looked at the numbers and decided not to refer - sadly I have since moved away from old surgery).
I am very slightly anaemic although I don't have numbers for that. I am permanently exhausted, do nothing other than work and sleep, and have very dry skin. I'm a normal weight. I keep very strictly to a gluten free diet and also don't have sugar and only moderate carbs as I am prediabetic and with refined carbs my blood sugar tends spike badly and I feel very ill when it comes down from a spike (I use a blood sugar monitor to keep an eye on my levels).
My current GP thinks everything cane be put down to anxiety and I leave appointments feeling like a huge hypochondriac. I'm so tired of fighting to get tested and taken seriously. Almost every family member on one side of my family has autoimmune thyroid disease however, and a couple of people on the other side have underactive thyroids. Would really appreciate your views on my results and what the best course of action is!
Test results (both taken mid-afternoon):
Most recent results (summer 2015):
Free T4: 14.42 (12-22)
TSH: 4.870 (0.270 - 4.200)
B12: 292 (191-663)
Folate (serum): 8.8 (14.6 - 18.7)
Red cell Folate: 644 (438 - 1070)
Results from end 2014:
Free T4: 14.92 (12 - 22)
Free T3: 5.2 (3.1 - 6.8)
TSH: 4.840 (0.270 - 4.200)
Thyroid peroxidase antibodies: negative
Thyroglobulin antibodies: 91.2 (normal <280)
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HarrietV
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When you get your next bloods done go for them as early in the a.m, as that is when the tsh is at its highest. Only drink water before the test. It also sounds as if you need another doctor.
It's better if your test is early in the morning as your TSH will be higher then so you are more likely to sure that you definitely need more medication and stop your Levo 24 hours before your blood draw. Changing g your doctor may be needed but is there another doctor you can try in the practice who hopefully may be better informed. When you finally get a higher T4 result then if you still have symptoms you need to insist on a FT3 test as well to check that you are converting properly from the FT4
Both your TSH results are above the range. If you had done your blood test first thing in the morning (without eating breakfast) you would probably have had higher TSH results (I think it is something like 0.5 to 1 higher). With your symptoms your doctor should be giving you a trial of Levothyroxine. You have a choice here. You can either try to find a more sympathetic doctor or self medicate.
Many people on this forum self medicate, either by buying a type of Natural Dessicated Thyroid (NDT) - Armour, Thyroid-S, Thiroyd, Thyro-Gold, Nutri Thyroid etc - or by picking up some Levothyroxine from a country where you don't need a prescription. Thyroxine is very cheap in Turkey for instance. I don't know how many of these are gluten free though. These products are often described as 'food supplements' for customs purposes.
You would start on either 50mcg of Levothyroxine or half a grain (I think it's 30 mcg) of NDT. It can take a while to get the level right for you, and it takes 6-8 weeks for the level of T4 to build up in your bloodstream, so you need to stay on one dose for that long to find out whether you need more or not.
People on this forum will help you with advice, and you may want to get tests done privately (eg from Blue Horizons) or learn about the symptoms of overmedication so that you don't become overmedicated. It's a risk, but it might work for you. I think the blood tests are about £25-40 a time and the costs of the pills themselves obviously depend on what dose you end up on, but you could budget £50 a year. You should be aiming for your TSH to be at or below 1.
You will also feel better if you can get your Ferritin, B2 and Vitamin D to an optimal level.
Thanks everyone, that is incredibly helpful information. I'm new to all this - realise it sounds naive, but really can't believe that the NHS won't treat until TSH goes over 10. I will try a different doctor and look into self medicating if that fails.
Thanks again for the info and validation, I was really starting to think that I was going crazy and the doctor was right and the results were fine!
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