Let me give a little info about me. Earlier this week I had Endo (Who is not my Endo)called me about labs from 2 months ago (didn't request call). He tried to scare me into believing my lab results from 2 months ago are so bad I'm going to get heart disease and brittle bones (DEXA SCAN) showed osteopenia from 2 months ago. I'm a life time user of steroids for immune system.
Background: I'm 48yrs old have had autoimmune disease my entire life that I take (Stelara) in order to keep it from destroying my health and soul I've been fine on Stelara UNTIL 16 months ago when I was diagnoised with thyroid cancer (Pap) low risk (Per Endos, all 3 of them) I've also had hysterectomy 15 yrs ago (Cancer) no recurrence and been fine up until 16 months ago.
THYROIDECTOMY: Has been a nightmare because the Endos including my primary doctor don't understand or care (debatable) about my immune disease and the medication (Stelara) that keeps it in check. My immune disease is ultimately responsible for alot of the health issues I've suffered over the years (no doubt) and I wonder often if Stelara could in fact interfer and create these crazy lab numbers when I feel absolutely fine and fine for the first time in 16 months because I'm NOT suffering with mood swings, weight gain (no loss of weigh though) OR numb hands, tongue or panic attacks like I have in the pass. I've been on just about every synthyroid dose from (100mcg to 125mcg) and I've had the worse joint and muscle pains with EVERY SINGLE synthyroid dose CHANGE it takes weeks to adjust and the pain at times is so bad I can not walk or stand because of it (Endos don't care) they say pain issues have NOTHING to do with my synthyroid and all my lab numbers are always perfect (Until) these past 2 labs (I feel best with these 2 labs physically and emotionally in spite what they say). Body pains have never left possible psoriatic arthritis waiting for psoriatic arthritis specialist appointment in early June.
Sorry so long winded but might give better view of my health.
Labs the Endos are terrified over, which bothers me because when I cried for help all they would say is your numbers are fine go see a psychologist and take diet pills your just unhappy about your (35lbs) weight gain, no kidding Captain Obvious.
**** The ENDO WANTS TO LOWER my current SYNTHYROID dose to 88MCG I'm worried about more crippling pains on (lower) dosage since all the other dose changes have been hard on body even with addition of Cytomel.
Lab numbers (May 2018) CURRENT Meds (Synthyroid 100mcg synthyroid and 15mcg Cytomel)
TSH.... 0.116 (L) ....Ranges (0.27 - 4.20)
FT4.... 1.29 ....Ranges (0.93 - 1.7)
FT3.... 2.950 ..... Ranges (2.0 - 4.4)
T3 ..... 105.7 ...Ranges (80 - 200)
Any idea why my numbers keep dropping ? ...Thanks Grace
Endocrinologists seem to be completely unaware how helpless we feel when 'they' tell us thyroid hormone replacement is not the problem. We feel it is if we're not improving on levothyroxine. They only take account of the TSH and try to frighten us with osteo or heart and this is a lot of nonsense unless we are very frail with a heart disease already. Sometimes they seem quite brutal in their language and insensitive to someone who is looking to them for answers and it is not forthcoming.
This is a past post from one of our members and she has a case before the Scottish Parliament and runs a Facebook page now and she is a woman on a mission - like a lot of us on this forum. She has recovered after a thyroidectomy as she saw one of the 'last doctors' who prescribed according to symptoms and it turned her life around. She also has a Facebook page and things for sufferers of thyroid gland disorders has got worse with more restrictions on replacement hormones.
When you have blood tests for thyroid hormones they should be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours from your last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as it drops throughout the day and may mean an adjustment being forced upon the person which is unnecessary.
Your GP should also test B12, Vit D, iron, ferritin and folate if you've not had them tested. Put your results with the ranges on a new post.
I've done that delay medication and with medication it's doesn't seem to effect my results. I wonder if I should try the lower dose synthyroid keep Cytomel the same but I really dont feel like another body assault it's so bad I'm seriously crippled and I can only think it's either my immune disease reacting or my body can not tolerate synthyroid.
In actual fact, results are meaningless if the patient doesn't feel an improvement on a dose. It is how we feel on particular doses which is the ideal way but not how doctors or endos do.
The following doctor only took a blood test for the initital diagnosis and thereafter it was all about how the patient felt on certain doses and it was increased slowly, about 1/4 tablet every two weeks and taking note of relief of symptoms. He only prescribed NDT and T3 for thyroid hormone resistant patients.
We have million of T3 receptor cells and they all need T3 for our metabolism to function normally. T4 converts to T3 but some don't convert effectively.
Hi Shaw, Thanks for you input appreciate it. I hope to see my primary doctor sometime next week and request a vitamin and mineral panel. What should I ask for? She won't test for inflammation because I'm on Immune drug that reduces inflammation (bad result) although I'm not buying that one I bet I'm riddled with inflammation.
I’m not familiar with all the conditions and tests you refer to but you sound like you know what you’re doing. Why would endo ring you two months after a test - has he been trying to pluck up courage to suggest a dose change? 😊.
I wondered if weight gain might have caused lower test results, but on re-reading your post, your weight gain isn’t recent is it? Of course, lower results could cause weight gain.
I have little faith in the tests. I’ve always had to adjust dose until I felt well, then GP would test. Sometimes T4 test results have fallen following a dose increase
If you’re feeling well you don’t need a dose change. As my GP always says, ‘if it’s not broke, don’t fix it’.
Keep going, you have your quality of life to fight for x
Aurealis, My weight gain has been steady over past 14 months until the past 2 months with med change I haven't loss weight but at least I'm not gaining anymore.
Quick question. I had a synthyroid reduction 2 months ago BECAUSE of a low TSH Why would my TSH get lower with the reduced Synthyroid shouldn't it increased my TSH? My Cytomel has been the same through everything.
I don't know what to suggest. Can't you change your endo? If you had a TT because of cancer, you need your TSH suppressed. There's no two ways about that. Can't you talk to him?
Yeah it is kinda dumb if I didnt have dexa scan they wouldnt say boo besides I'm 48 I'm bound to have some sort of bone issue. The sad thing is I've been complaining about Achilles tendonitis for 16 months that now because I've relied on my good leg so much I now need surgery for torn knee ligament and meniscus. Never had tendonitis until I had thyroidectomy but endo and every other specialist Doc see no connection except my ortho...go figure.
Endos know nothing about symptoms. They just don't learn about them in med school - strange as that might sound. That's why they're always telling people that their symptoms are nothing to do with thyroid, and must be 'something else'!
So, what are the numbers he's worried about? It all looks ok to me - except that you're under-medicated. Your FT3 is much too low, and that is the most important number. Most people need their FT3 up near the top of the range. But, if you feel fine with it there, then that's fine. But refuse to lower your dose on the basis of the TSH, because the TSH is irrelevant. It's low because you no-longer need it. And it has nothing to do with hearts or bones. This man knows nothing about thyroid. Ignore him.
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Me, I'd tell him where to stuff his thyroid hormones and buy my own! Come to think of it, that's what I did do! 
HELP
Lab results don't understand
Blood labs results question
Different lab results on Same dose. Conflicting free assays. 
