Hi everyone, I have just scared myself reading the internet (typical). I have been on Levo for just under a year now and my recent test show that whilst I have a nice high amount of T4, i don't have any T3.
T4 is 17.1 (9 - 19.1)
T3 is 3.27 (3.6 - 6.5)
TSH is 0.03 (0.35 - 4.94)
I am seeing an endo on Thursday to ask for T3 and I assumed that if he said yes he would maybe lower my T4 as my TSH is low. Then I saw a comment about Hypopituitary online and that low TSH and low T3 indicate this and it has scared me.
Does anyone here have any experience on this or had similar results to me? I was hoping T3 might be the solution. Gee whizz it is all very confusing!
Huge thanks
Sue
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queridalady
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Sue, Hypopituitarism presents with low TSH, low Ft4 and low FT3. Your FT4 is good and near the top of the range. Your low FT3 is probably due to poor T4 to T3 conversion and you will benefit from the addition of some T3 to a reduced dose of Levothyroxine. You don't say what dose of Levothyroxine you are on but TSH can be suppressed on >137.5mcg and less for some people.
Good levels of vitamin D aid T4 to T3 conversion so you may want to request a blood test to check your levels. 75-200 is optimal. While you're at it you may as well request ferritin, B12 and folate which are often found to be low/deficient in hypothyroid patients.
After my visit to the endo I could just cry put of pure frustration. He will try me with reduced t4 combo with t3 but he said my t3 is irrelevant and that my TSH indicates I am hyper not hypo. He says his goal is to increase my TSH to 1 and if that doesn't happen he will remove the t3 and just reduce the t4. He says that I might have a stroke in 5 years time if my TSH is not increased. :((. I have to have a synacthen test for cortisol and a more sensitive antibody test and if he is happy with those then I can try the t3. I have looked at adrenal fatigue info and I dont believe I am suffering in that way. is what he is saying about my TSH and a stroke likely? Gee whizz :((((
Sue, I don't like doctors like this. T3 is the active thyroid hormone so I fail to see how it can be irrelevant. TSH is suppressed for years in thyCa patients, and sometimes for life, but we aren't fed warnings and bogy stories about having strokes. There is research saying that suppressed TSH can increase the risk of atrial fibrillation and osteoporosis but research also shows that low TSH 0.5 doesn't increase the risk.
Thanks Clutter. Great article. So at the moment I am at the bottom of the TSH range they mention at 0.03. It just concerns me that if they introduce T3 (which I would like) and reduce my levo that this won't help my TSH because I have read that T3 will suppress it further. I don't understand how my T3 level of below range 3.27 (3.6 - 6.5) is irrelevant? if we have a normal range the surely it is abnormal if you are out of the range? I don't smoke, eat junk or drink massive amounts of alcohol. I eat well and exercise and at 46 I don't think that I should give up and accept being unwell and at risk of heart and bone problems….sad that thyroid patents are dismissed so readily. Thanks for everyones great advice on here.
Don't panic just yet My name is Tanya and I do not live in the UK so I hope you all don't mind me chiming in here. I actually live in a tiny town in Alaska, and I am a 9 year Thyroid Cancer Survivor. Previous to the cancer diagnosis I had Hashimoto's Thyroiditis which is an autoimmune disease of the thyroid. This particular disease makes your body think that your thyroid gland is and enemy and causes your body to attack it.
You did not mention why you have been taking Levo for the past year and i would be curios to know.
Over the years I have had occasion to research thyroid as well as other medical issues on line and while some of the info is helpful it is very easy to fall into the panic well (and that well can be very very deep) when we find scary scenarios outlined in print.
The truth is that there are many different kinds of thyroid disorders and diseases. They affect each person who has them differently and for this reason the treatment that works for one person may not work for the next even if they are diagnosed with the same disease/disorder.
Having said this, there are reasons other that Hypopituitary that could cause your body to have inadequate levels of T3 and TSH. Some people have thyroids that just decide to shut down for no apparent reason and they stop converting the thyroid hormones properly.
I would suggest that if you research online try to keep a perspective of "possibilities" and do it only to get a feel for what types of things "could" cause the issue and write down what you find.
Perhaps it might be:
Hashimoto's Thyroiditis or some other type of immune disease
Thyroid goiter or other thyroid defect
Hypopituitary
Then when you see your doctor ask him/her about all of them. If he/she says that any particular one is not your problem ask him/her how he/she knows this to be true. Are the symptoms not correct? Are there test that should be done to rule them out? Is the connection to "obscure" to warrant consideration? I would be wary of this last statement especially if you have had tests for everything else and nothing is showing up. Sometimes, after all of the obvious characters are eliminated the only reasonable thing left is the obscure, regardless of how remote the possibility seems.
At any rate, do not panic just yet, and even if the diagnosis is troubling try not to panic. Gather what information you can and formulate your plan with your healthcare team. I do not know if you have them there but an Integrative Medical Doctor is a great addition to that team.
Sorry for the long winded reply. Chin up, deep breath and I will check back to see if you post what you find out at the doctors appointmnet.
Just thinking out loud here. It's possible that you have an underperforming pituitary and conversion problems.
I say that for two reasons. Your FT4 is high compared with your FT3 and as you are on levo you may well have a conversion problem. NDT or some T3 might help you there.
Your TSH is very low for your FT3 value, which does imply that possibly your pituitary is struggling. Have you ever had a head injury, as that can cause damage to the pituitary?
I suspect that some people just have a pituitary that isn't quite up to the job. YOu can't treat your pituitary, you have to treat lower down the endocrine system, ie your thyroid.
Having said that, if you are hypopituitary then you might also have adrenal issues. There's a good questionnaire here adrenalfatigue.org/take-the...
Hypopituitary is nothing to be scared about - at least no more than hypothyroid. It's just another part of the endocrine system and they all go together. The trick is working out which bits need support and what support works for you.
Thank you for your lovely response. You are right of course, I need to gather all the facts before panicking!. From an ultrasound my consultant at the time a year ago (I had a lump in my neck that soon went) said my thyroid represented as hashimotos although I have no antibodies.
I will let you know what my endo says. Fingers crossed!
Thanks so much Rosetrees. It is great to get such knowlegable advice. I took the test and scored very low which doesn't surprise me. Although I get tired, I work hard and play hard but I don't suffer tiredness or stress related symptoms badly enough that could be contributed to Adrenal fatigue…not yet anyway! so really they would just treat with thyroid hormones anyway?
OK great, I now feel a little better prepared for my appointment on THursday.
Sue, if you click on the 'reply' button, the person you are replying to will get and email to tell them you have replied. If you just make a general comment in the 'leave a comment' window, they will not know you have replied. Just so you know. lol
The thing about adrenal fatigue is that when you have it, you can take as much T4 as you like but your body won't be able to use it. It won't get converted into the T3 that you body needs. You need cortisol to convert, but if your adrenals are fatigued, it does not make enough. However, very few doctors know anything about this, so probably would just treat with thyroid hormone and Wonder why it didn't work!
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My name is Tanya and I do not live in the UK so I hope you all don't mind me chiming in here. I actually live in a tiny town in Alaska, and I am a 9 year Thyroid Cancer Survivor. Previous to the cancer diagnosis I had Hashimoto's Thyroiditis which is an autoimmune disease of the thyroid. This particular disease makes your body think that your thyroid gland is and enemy and causes your body to attack it.
so really they would just treat with thyroid hormones anyway?
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