I have a doctor's appointment tomorrow morning. I've had blood tests as part of investigation as to why my arms go numb when I sleep. They did TSH again and it is low as my t3 T4 levels are where they need to be.
So last bloods look like this. July.
TSH 0.05 mui/L (0.3-5)
T4 19.11pmol/L (11-22)
T3 5.2 pmol/L (3.1-6.8)
Vitamin D 59 (75 - 150nmol/L)
TSH was unchanged in August but surgery have queried with endocrinologist, who was happy in July to see me in 12 months. But now has told surgery to drop my levo from 150mcg to 125mcg. I'm currently taking 6.25mcg of T3 morning and evening. While I have other symptoms, I don't think it's my thyroid causing it as I should be feeling well with those results. I'm working on the vit d, B12 and folate.
Do I ask the doctor to go against the endocrinologist, and put me back on 150mcg. Or do I up the T3 to compensate the T4 drop. My worry is if I don't play ball TSH will be unchanged in 6 weeks and they may drop T4 further.
I need them on board to hopefully fix the numb arms.
I'm taking a copy of the pulse report, and thanks to the forum I know so much more than I did, but may get tongue tied with nerves if the doc turns on me.
Will have to see how it goes maybe turn the questions round on him and ask him to explain rather than me explain to him.
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tzracer
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tzracer Your TSH is bound to be suppressed, or at the very least very low, when taking T3. It's very unlikely you'll get it back into range while taking T3. If your endo is prescribing T3 he really should know what it does to test results.
In any case, when on thyroid replacement the TSH test is irrelevant. TSH is a pituitary hormone. The pituitary looks to see if your thyroid is producing enough hormone, if it isn't it sends out a signal TSH (thyroid stimulating hormone) to tell the thyroid to produce thyroxine. The TSH will be high. When on thyroid hormone replacement the pituitary detects the replacement thyroxine so doesn't need to send a signal so TSH is low. Your endo and GP should know this.
Your numb arms may be to do with low nutrient levels.
I know that's what is frustrating me. Admittedly the last endocrinologist I saw wasn't the one who was happy for me to try T3 and he did say he didn't like my TSH suppressed, but he was happy to see me in 12 months.
Tell him it's your TSH and you'll do what the hell you like with it!
Or, maybe you'd just better ask him to explain why he doesn't like it suppressed. And, if he starts telling you you'll have a heart attack or a stroke, ask him for the scientific evidence of that. He won't be able to provide it, because there isn't any.
After I had my thyroid removed in Oct 2015 I was sent home with a letter from the surgeon. My GP had a copy sent to her and knows to keep my thyroid suppressed. My surgeon is also an eminent professor one of the best thyroid surgeons in France.
Your thyroid results look good I don't think it will help to drop the dose do you? FT4 and FT3 are in range and near top of range which is where you want them to be. How are you feeling? Do you have a range for vitamin D? In the UK that is often suboptimal. Do you have a comment from the lab next to the result? If your arms are going numb could it be the low vitamin D? Also, what about B12, folate and ferritin? Have you got results for those?
I don't want them to drop, (prescription all ready re issued) It's taken years of feeling fatigued to get to this point., I'll get results off my other post. Currently taking 5000iu of d3 (surgery messed up boosting and put me on maintenance dose too soon so still didn't make bottom of range. Have been supplementing B12 and folic acid, my ferretin has always been top end of range
I stopped when I went I got to upper range, then since then I've not had the problems with arms. But I'm going swimming regularly which could be helping too?? Also, got vitamin D in a good range so perhaps it all helped, not just one thing? I suppose it took about 2 years to get things sorted all in all. That's after years of feeling ill.
B12 and folic acid stopped my nightly numb hands too. I started myself on 5000mcg Solgar sublingual methylcobalamin form of b12 then switched to jarrows as cheaper and better (less red as the Solgar ones looked like blood as melted lol) I've just bought some puretality 1000mcg ones as they are cheaper still (am not working) and trying to see if I can lower dose as b12 twice over top range now. I'm not so keen on these ones as they seem to "burn" my tongue a bit , too much citric acid in them I think although they don't affect hubby who also takes them.
I complained of numb hand for 10yrs to gp but told bloods ok. When I got copy of my notes I saw that the results were v low in range and coupled with symptoms I should have bn treated. Frustrating. I hve some residual nerve probs in left hand now but not too bad and no numbness unless forget my b12 for while.
Thanks for the feedback, and glad you're getting well. I will keep up with the supplements. Read on the anemia forum that the serum B12 isn't too reliable and there's an active B12 test now. I feel for you struggling for years with your hands. hopefully getting my levels up will solve it. I wasn't getting the numb arms when my vit d was 17 nmol/L
When I asked if B12 was the cause, doctor said it is usually pins and needles in both feet and arms at same time.
Thankfully wasn't as bad as I was expecting, the X-ray on my neck shows early arthritis, but not compressing nerves. So seeing if physio will help. Re the TSH I compromised in the end and agreed to the drop for 6 weeks to save him questioning the endo. He did say they like your TSH to be a bit higher than <0.05, and he didn't really explain why something about they like your pituitary gland doing something. But he did agree to put me back on 150mcg if my T3 T4 dropped (which I am sure it will). Hopefully without too many symptoms. I was able to get a copy of the Endo's letter. He was ready to chop levo down to 100mcg if my August bloods were base on 125mcg but said to leave T3 dose alone. Think I need to not see him again after getting this far.
Thanks again for all the help, advice and encouragement.
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