I'm living in the U.S. and had blood work done recently and looking for some insite as to what is going on with my body. Give you a little health update I was diagnoised with Psoriatic Arthritis my body is wrecked with feet and ankle pains constantly and it didn't start until after I had thyroidectomy (cancer) 2017 yes long time hobbling through life with no real medical treatment other then a biologic drug (stelara) and I just had knee surgery because 18 months of dealing with a severe form of achilles tendonitis.
Fast forwarding to my most recent blood test. 8 weeks ago my Endo reduced my synthyroid from 100mcg to 88mcg and my 15mcg Cytomel has always remained constant. I had vitamin panel done as well.
Why does my TSH hardly move UP (endos goal is to raise my TSH) because of osteopenia (mild) and my FT4 keeps dropping?
Endo DID NOT order FT3 like every other time (she and idiot).
Welcome to our forum and I am sorry you had a thyroidectomy.
Am I reading your post correct in that you have been given no levothyroxine since your thyroid gland was removed? In fact you should have been given a combination of T4/T3 (levothyroxine/liothyronine). I am not medically qualified but I think there has been some negligence on doctor's part.
Hi Shaw, I was on 100mcg synthyroid 15mg cytomel and REDUCED 8 weeks ago to 88mcg synthyroid and still 15mcg Cytomel. Why...why...why does my FT4 keep dropping and my TSH although cytomel tends to drop the TSH it's just annoying I still battle weight, tiredness, bathroom issues and terrible feet pains.
Before blood tests were introduced along with levothyroxine (T4 only), we took NDT and increased dose until we felt better and symptoms resolved.
One of our Advisers (never would prescribe levo) only prescribed NDT or T3 only for thyroid hormone resistant patients.
I've no idea why your Endo wants your TSH (thyroid stimulating hormone) to 'move UP'. We need it 1 or below. TSH is from the pituitary gland not the thyroid gland and it rises to try to pump out more hormones from the thyroid gland - which it obviously cannot do if our gland is failing. Professionals wrongly believe that a low or suppressed TSH will cause heart problems, in that case why do people who have had thyroid cancer have to have a suppressed TSH?
Dr Lowe only took an initial blood test and thereafter it was all about relieving patients symptoms by slowly increasing NDT.
When we add T3 to T4 blood tests cannot correlate as they are for the use of T4 alone. If TSH rises we aren't on sufficient hormones.
I'd forget about blood test levels because if you took a blood test ten times a day it would probably be different and also if T3 is within the mix will be different too. TSH for instance is higher early a.m. and drops throughout the day.
I shall give you some links which might be helpful. If you have pain you aren't on a sufficient dose and adjusting doses is also not a good idea except if you are increasing dose slowly whilst trying to relieve symptoms.
I think your endo has become fixed on the idea that a low or supressed TSH causes oesteoporosis. This is a myth & has never been consistantly proven so is a hot potato in the endocrinologist world. Endocrinilogists who believe it end up under treating their patients as they treat by the TSH. Treating by the TSH leads to undertreatment. Your endo will never achieve his/her goal in addition as any medication with t3 in leads to a low or supressed tsh!
Its good that you are on a combined thyroid medication but given that you have now no thyroid at all your endo should be ensuring you are on a full replacement dose. A friend of mine who also had a thyroidectomy was told by her endo that a full replacement dose of levothyroxine is 200mcg. If you consider that cytomel (T3) is about three times the stength of levothyroxine (T4) then your current dose is currently roughly the equivalent of 133mcg. On that basis you are under treated.
If raising your meds brings no relieve you may wish to consider ndt as it contains all the thyroid hormones.
Lastly I was told by my endocrinologist that what is important is ensuring the thyroid hormones (not TSH!) stay in range. This might mean they are at the very top of their ranges and the t4 maybe slightly over even. If this is kept to your health is not at risk.
Hi Waveylines, Thanks for your response and your right these Endos are bent on preventing heart disease and crumbling bones instead of treating the thyroid issues and my Endos in particular could have cared less when I was repeatly coming in to see them and complaining about my hideous feet and ankle pains Ive had ever since I lost my thyroid and it wasnt until I requested a Dexa Scan did they even give a darn about my bones.....I pretty much did this to myself by requesting Dexa Scan for my feet and ankle issues, I just didn't realize at the time that these people would blame my low TSH levels for my bones even though I have used massive doses of steroids over my life for autoimmune disease and they forced the low TSH on me because I had thyroid cancer and was repeatly told "GOTTA KEEP THAT TSH LOW" so cancer doesn't come back. Now I feel doomed dealing with the possibility of reoccurance because of Endo messing with my numbers and I fine myself in tears alot realizing this is as good as it going to get me stressed and in pain constanly. I use to be a super fit and crazy active person now I'm a house bound flake because my body no longer functions right.
I can't locate info on why my T4 and TSH would keep dropping with every synthyroid change. Could it be the massive inflammation in my body that could be messing with my levels or the biologic im on for Psoriatic Arthritis ? I know it's not my taking my meds I'm very strict with my medication schedule, I like consistency alot. Consistency is part of my issues I cant get consistent medical care and its driving me nuts.
Your TSH stays low because of the cytomel (T3.) T3 is known to supress the TSH. This happens a lot with people who are on a ndt.
You might be best to find an endo that is T3 friendly & aware it supresses the TSH.
And yes the supressed TSH is recommended practise after thyroid cancer so really not sure why they are stopping that practise. A supressed TSH is not the cause of lost bone density!! That has never been proven.
Hi Waveyline, I'm aware that cytomel lowers TSH but,why would my TSH and FT4 keep falling with reduction of my synthyroid and no reduction of my cytomel?
I am in the US, I have had a total thyroidectomy and I am perfectly fit.
1) Forget about your TSH level, lower than 1.0mIU/L the "rules" change and Endos know very little about this.
2) Get a private blood test via True Health Labs via the Internet (Google them) then Quest Labs will do the blood draws. Order a "total thyroid panel". These initial phases are a bit expensive but within a year the expense will become very low.
3) Call Activis/Forest Pharmaceuticals and get references for doctors in your area who prescribe NDT
4) Start NDT, about 1grain per day. Keep increasing 1/4 grain per day each month until all of your symptoms disappear.
I checked into quest labs in my area Northern Virginia and they said I needed a doctors order ?
Did you have Thyroid Cancer?
YES, I have been searching for a new easier accessible,understanding of my current health issues endo and I do worry about reoccurance because over the years I have delt with ovarian cancer and thyroid cancer and now a PSORIATIC ARTHRITIS flare, its a lot to deal with.
I'm blessed that I don't have to work and I can try to recover but Its been 18 months and I'm not seeing the end of the tunnel yet and add more insult to my body I just had knee surgery.
This is why I'm no longer fit..hope to get it back sooner vs. Later.
Hi Canyou, when you buy the PO from True Health Labs (THLs) one of their two doctors (Dr Brady Hurst probably) acts as the doctor requesting the tests, Quest then honors that prescription. You can get a telephone consultation from Dr Hurst if you request one, it will cost $50 and I found it well worth it, he told me what to expect from my other docs - my local GP and my then Endo. If you go to THLs website it will tell you all of the tests available, their costs and how to proceed after you get the prescription.
And yes, I had Thyroid Cancer (the papilarian (sp) variety), I had a total thyroidectomy, had T3 only for ~three months then moved to a good brand of Levothyroxine, that brand disappeared and I had two years of hell under the misguided care of a well meaning Endo. I finally found a wonderful young asian doctor who prescribed NDT for me (at my request) and I have been perfectly fit since.
California. I didn't know you could order thyroid tests through STTM, but I think that is where I first heard of NDT. Maybe you could copy down (or print out) all of the tests in a total thyroid panel that THLs offers and just knock on a few doors until you get a doc who would write a script for you. I don't think any doc would refuse that, a few blood tests will do no harm. It's not like asking them to write a script for a medicine, that's your next challenge. Get tested first.
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