Test results - what next - any advice??? - Thyroid UK

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Test results - what next - any advice???

mandy45 profile image
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to endo as my ths was showing good results (o.4) ut I am still feeling hideous. My endo has discharged me, saying it is my lifestyle. I have 2 grown up kids, and an 8 year old. My job is great, and so is my husband (irons/cleans, he is my rock). However, I wake up feeling crappy every day. Slurred speech, dull headache behind my nose, SOOO tired, aching legs, fluey. I have been on 75mg of levo for about 8 weeks now. My endo has retested me and my reults are tsh 0.04, free T4 14, Free T3 5.7. She has tested for Renal function, calcium, glucose, ESR, B12, folate, ferritin, full blood count and liver function. All are good. She tested my vision and found that on confrontation testing of visual fields I had globally reduced perception of the red top of the pin (????). She has recommended that I go back to 50 mg of levo. I am really worried. My hairdresser has told me she thinks my hair is getting thinner. I feel crap. Any suggestions? I do not drink or smoke. If this is the next 40 years, I may start and take my chances with a bad lifestyle. I am 60 kg and 5'1", so not overweight although my weight has crept up since Christmas. Any advice before I become depressed (I am not yet, but sure I am getting there with how I am feeling and no light at the end of the tunnel.X

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RedApple profile image
RedAppleAdministrator

Hi,

Without the accompanying reference ranges from you lab, it's difficult to be sure, but TSH at 0.04 does suggest over-medication, which may be why a dose drop has been recommended. However, FT4 at 14 seems too low and does not seem to correlate with the TSH. I can' comment on the T3 without knowing the range.

Have you had a positive antibody test (indicating autoimmune disease)? How long have you been on medication?

mandy45 profile image
mandy45 in reply toRedApple

Hi redapple, I have been on medication since Feb 2010. My TSH has been dropping with each increase (25mg, then50, then 75mg) and I feel marginally better each time, but then head downhill again. My throid was Ultrasound scanned in March and showed a small thyroid with all the signs of end stage thyroiditis. My BP has dropped to 106/64 (I was feeling quite anxious at the time, so god know what it is when I'm relaxed). I just know I am hypothyroid - my eyelashes all fell out in January, and grew back after a while on Thyroxin - but I am confused as to why my THS is at such a low reading. Could there be any other reason why this is, as I am petrified that my medication is gong to be reduced and I will revert back to the zombie I was in January. I have not had a positive antibody test yet, and don't know if it's relevant but I have had anaphalictic shock in the past for penecillin, and have now been identified as being allergic to many main use antibiotics, so much so that when I had an infectedwound after my hysterectomy I had to be treated with Manuka honey and seaweed and a very weak antibiotic - thanks god it worked as they were mentioning maggots as a last resort (and they weren't joking...). I also went through the last summer getting severe allergic reactions to insect bites, where the sight of my ankle wrist and elbow bones wasn't visible due to localised swelling. I asked my husband this morning how long he thinks my speech has been slurry (I thought it was since January) and he said he's noticed it for at least a couple of years - which also ties in with my memory loss, which he noticed has also been bad for a couple of years, if not more. My consultant has mentioned that they are loathe to treat any TSH under 10, don't know if that helps with your reference range, but I don't have any other information regarding that I'm afraid. Many thanks for your continued help.

Chippysue profile image
Chippysue in reply toRedApple

there is surely something not right here, your free t4 is too low.

To find out the lab ref range just ask a receptionist at your doc's.

When you say that your B12 was ok, this is another problem that we battle with as ideally it should be above 500 but the range is around 190 to 900, in other words they do not prescribe B12 injections unless your result is below the bottom no. If you google B12 deficiency you can see just how important B12 is. The BBC did a documentary which is on youtube.

You seem to be in the same position as I have been in for the past 4 years where we are left to try and find the answers ourselves. It is frustrating to say the least.

You are entitled to a second opinion and it would be helpful for you to find out where the nearest "good" endocrinologist is so that you can specifically ask for a referral. Where abouts do you live?

mandy45 profile image
mandy45 in reply toRedApple

Hi Suze, Thanks for your advice. I am confused though. I have looked up the free t4 range and it says that normal is 0.8 to 1.7. You are the second person who has said it is too low. What reading shoud I be looking at? Thanx, Mandy

hkhang profile image
hkhang

Hi, yes please submit the reference ranges for your TSH and FT4, and then I can make recommendations. It sounds like you have thyroid symptoms.

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