So my latest labs were
TSH .01 (.4-4.5)
FT4 .8 (.8-1.8)
FT3 2.4 (2.3-4.2)
Of course my doc says I'm over medicated because my TSH is at zero. She says my problem isn't all my thyroid, so she doesn't want to keep throwing thyroid meds at me, but I'm afraid of my levels getting too low. I know I have adrenal and pituitary problems and who knows what else, but don't my thyroid levels still need to be at a good level? She wants to take away my extra T3 and only have me take 90mg Armour. I'm running out of money and doctor options. I've been fighting this for 4 years and am not any better and am losing hope.
My symptoms are all hypo. Low basal temp, constipated, low bp, dry skin and hair, fatigue, feel lethargic, swollen tongue, pills and food get stuck in throat. I think because she says my main problems aren't my thyroid, she doesn't want to keep throwing thyroid meds at me. I will admit I've never felt well no matter where my levels were, so I don't know what the deal is. I had my RT3 tested and it wasn't high this time. I told her I had one doc who lowered my dose to the point where my TSH did come up to 1.0, but my other levels were very low and I had so little energy I couldn't get off the couch. She still insists on trying it.
A Dr who can not take into consideration your past experience and also see both your free's at the very bottom of the range is not really worth keeping in my opinion.
You said you know you have pituitary issues? What makes you say that? But if your Dr knows this then why the heck would he rely solely on TSH which is a pituitary hormone if he knows the pituitary is suspicious?
None of this makes much sense and is why it may be best to find another Dr ASAP!
I'd recommend you print and read this article and give it to your Dr. It is written by an MD and states flat out several times that TSH is worthless and can not be relied upon once taking thyroid meds.
It is known situation especially with a person taking T3 medication or with a T3 component that TSH can be totally suppressed. Why don't Dr's know this? It just baffles the heck out of me!
I've been to 11 doctors in the past 4 years and only one knew not to go by the TSH. Unfortunately she's moved out of state. I'm running out of alternative docs to go to.
I've been told based on some labs and an MRI that I have hypopituitiarism. I just recently had my ADH levels tested and they were at the bottom of the range. This is a pituitary hormone. I've also had very low sex hormones since I was a teenager and developed osteoporosis in my 30's. No tumors showed up on the MRI, but I've been told my pituitary gland is sluggish.
I gave my doc an article that specifically said if you have pituitary problems you cannot go by the TSH. She obviously ignored this. She gets set in her ways
If you could add a link to that article about the TSH being suppressed when on T3 meds that would be great. Mine was actually always suppressed even when I was only on Synthroid, so not sure what that means.
The article It might help when I see the Pituitary Endo next week. I'm hoping since they specialize specifically in pituitary disorders, maybe they'll know more than the average endo or MD.
I don't know what your unmedicated labs were, if they indicate pituitary issues and thus central hypothyroid but you might follow this link and read up. Maybe your doc would benefit as well from seeing it.
California Center for Pituitary Disorders at UCSF
Hypothyroidism is caused by a deficiency in the production of thyroid hormone and may be either primary or secondary. Primary hypothyroidism occurs when the thyroid gland does not make sufficient amounts of thyroid hormone. It is usually characterized by high levels of thyroid-stimulating hormone (TSH) and low levels of the thyroid hormones triiodothryronine (T3) and tetraiodothryonine (T4). Secondary (or central) hypothyroidism is caused by disorders of the pituitary gland or hypothalamus. Generally, secondary hypothyroidism is associated with low TSH and low T3 and T4. However, TSH levels may also be normal or even slightly elevated. For this reason, TSH is often an unreliable measure of secondary hypothyroidism and should not be used to assess the adequacy of thyroid replacement in these patients. The inappropriate use of TSH levels to determine hormone replacement is one of the more common mistakes that we see in the patients we follow, and patients should be cautious if another physician discusses changing their thyroid hormone dose. Many patients have returned for their one-year follow-up visits having had their doses lowered in response to "low TSH levels." Most of them feel poorly, but improve after we increase or restart their medication.
We aim to resolve any symptoms and signs of thyroid hormone deficiency while at the same time avoiding symptoms and signs of thyroid hormone excess. This is usually accomplished by increasing the thyroid hormone dose by 12.5 to 25 micrograms every 6 to 8 weeks until the free T4 level is in the middle or even the upper one-half of the normal range. Once a stable dose is reached, we re-evaluate every 6 to 12 months and adjust the dose as necessary.
Thanks! I'll read all those. My TSH before starting on any thyroid meds was first 3.49, then a few years later it was .045, then the next year it went up to around 2, then up to 3.49 when I finally started meds. So not sure what all the up and down means.
My current doc says my pituitary doesn't look like it's affecting my thyroid, but is affecting some other hormones. I never feel better on any dose though (always worse but never better), so not sure what that means.
Here's a few more thoughts, Just as one might get irritated for a Dr to say oh your fine it;s something else, might suggest that you do have to look at other stuff. Do you take supplements?How's your Vit D and Selenium? Do you have IBS as that can cause absorbance issues. I used to be really wiped out and discovered that besides being undermedicated,I had really low Vit D and was on too much Progesterone which made me really groggy. Your labs are obviously low but other factors could contribute to the problem as well. Some Drs tend to look at everything individually and not connect the dots We live with ourselves and know best what's going on so we may be better able to put it all together.
This was a great little video about testing and deficiencies
Sorry I forgot to attach the link that I mentioned in my post above that within it states that TSH is of little value.
With the seeming "resistance" to thyroid even at higher levels would suggest something else is going on. The idea that the hormone is not getting in to the cells is something that occurred to me. One thing that can do this as mentioned above is reverse T3.
This a a really good site but a little technical that I've found recently. It really gets into the technicalities of the enzyme and the different variation of the enzymes that convert the T4 into T3 and RT3 and help with cellular transmission of Thyroid. Maybe you have some deficiency with one or more of those enzymes or something. Worth trying to find out more by your research and knowledge so you can discuss with your Dr.
However it still comes to mind to me that your body can't absorb or use at the cellular level what is NOT present. Your levels are very, very low in the ranges.
Having hormone present and not having your body utilize them is one thing. But it seems like your not even giving your body a chance because there is so little to even contemplate use.
I'm still baffled by your Dr. KNOWING and acknowledging that your pituitary is messed up but him believing that TSH and thyroid response is NOT affected. That just doesn't make any sense to me at least!
I'll post my labs tonight. I have low cortisol in the morning and slightly high at night. I take seriphos at night. My doc wants me to try melatonin at bedtime first and then try HC in the morning. So maybe lowering my thyroid meds is a good thing if my cortisol is messed up??
Yes, I did the 24 hour saliva test. Another doctor suggested taking the seriphos. I can only take one, otherwise it lowers my cortisol too much by morning. My doc said to only take 1mg melatonin. She said if you take too much it can lower your body's own cortisol or something like that and mess it up. She said to try it for a week and if I'm still waking up during the night or feeling tired in the morning to go back on 5mg HC.
I've mentioned to her about treating the adrenals first. I just think this doctor is all over the place and now she's more focused on this alternative weight loss program she started. She thinks that it's also my diet and told me to get a juicer and go on a juice fast for a few days. I know it's not that since I've had hormone problems since I was a teenager.
Oh, and I have had my Vitamins and minerals tested. I was a little low in Vit. D so I'm taking 5000ui a day. I don't have IBS. I stopped eating gluten and dairy a year ago.
My doc is saying to try a juice fast to clear out my system and jump start my immune system. I can't afford a juicer though and I still think this is all hormonal and not what I eat since this all started when I was a teenager and has just gotten worse since starting the thyroid meds 4 years ago.
I didn't find a doc who tested for RT3 until I was on thyroid meds for about 3 years. When I finally had it tested, it was very high, so maybe the T4 took a while to build up or something. I also could have had adrenal issues back from the beginning and didn't know it, so maybe at first I felt better on T4 meds, but after a while they may have stressed out my adrenals. Who knows. Whenever my RT3 was too high, my FT4 and FT3 were also high, so it didn't look like I was having a conversion problem, but I really was. It's just very confusing to me how I could be taking all these meds for years and even when the labs look good, I still feel hypo.
Tell those stupid doctors that you have a pituitary problem so obviously they cant use TSH.
A thyroid doctor should get you in normal ranges after that they should medicate by symptoms not numbers.
The last doctor I saw said my levels are normal and if my next TFT is normal she will send me to a psychiatrist.
My thyroid problem started 6 months ago I have never had anxiety,or any mental problems in my life,I just know I don't feel normal yet.
Just because a thyroid patient's lab scores are normal they are not necessarily normal for each individual.
doctors are stupid...when it comes to thyroid prooblems...
Donpodiochi, I have told my doctor several times and shown her articles, but you can't force a doctor to change his/her mind if they don't want to. My labs aren't normal. They're too low, but because she's only looking at the TSH, she thinks I"m overmedicated. She does go by symptoms, but also goes by labs. I haven't felt well being on any dose, so that's what's puzzling all these docs.
I think it is related to the enzymes that convert the T4 into T3 and to RT3.
My reading has basically come to the conclusion that there are three different variants of this enzyme. D1 converts T4 into T3 but is pretty inefficient. D2 does the bulk of the work converting T4 into T3. D3 however converts the T4 into Reverse T3.
So it seems possible if this is true, that a person could have very low D2 enzyme levels or too high of D3 enzyme levels or even a combination. In that case, a person would have lots of thyroid T4 in the blood but not converted into T3 or too many converted into RT3. Leaving you feeling Hypo.
You said that you felt pretty well at one point and at that point your labs looked good with FT3 and FT4 as listed here:
Yes. I believe that is the general enzyme name. Then after reading further says that there are at least 3 different types or variations of the enzyme. It further stated that the pituitary is the ONLY tissue in the human body that did NOT have D3. In other words, the pituitary is totally blind to RT3. The pituitary cells are able to use the thyroid in the blood maybe more efficiently because it has no enzyme that wastes some of the thyroid at RT3. Or at least that is what I got out of the article.
Looking back I think I may have linked up the wrong article with the discussion of the D1, D2 and D3. I've also have seen articles calling them by different names with primes and such.
I will have to try to refind that article. I thought I had book marked it.
These are the deiodinases...D1 which converts T4 to T3 peripherally, D2 which converts T4 to T3 in the pituitary, and D3 that converts T4 to RT3.
D2, which is found only in the piruitary converts T4 to T3 for the exclusive use of the pituitary. D2 (5'-deiodinase) is what my pituitary lacks and why my TSH is permanently high. I believe D2 just converts more efficiently than D1...it doesn't have anything to do with lack of competition from D3.
"The pituitary cells are able to use the thyroid in the blood maybe more efficiently because it has no enzyme that wastes some of the thyroid at RT3." Don't forget that the production of RT3 has a beneficial function in the human body. It's the body's way of protecting itself by lowering cellular T3 levels in times of crisis, such as malnutrition, starvation (including some weight loss programs), severe infections and metabolic or malignant diseases.
However, it's obvious that even under these extreme conditions, the pituitary cannot affort to be starved for T3 like the peripheral tissues can.
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