25+ year battle with Hashimotos, high TSH, miserable

@jsb2272 Welcome to Mayo Clinic Connect. So 25+ years of dealing with Hashimotos and high TSH, then a complete thyroidectomy? Your situation sounds complicated as you describe having symptoms of both high and low thyroid. No diagnosis implied because that is NOT what we members at Mayo Clinic Connect should be doing. I just noticed your symptoms because my husband has no thyroid (removed due to thyroid cancer) and my own history of hyperthyroidism/ Graves’ disease. In both of our cases a GOOD endocrinologist has been indispensable! Have you considered traveling to Mayo or another teaching University facility for endocrine system help? The only other thing I can think of is that my husband has needed to have labs repeated and adjustments made to his Synthroid / Levothyroxine dose from time to time. He also avoids other meds or food when he takes his dose. In fact he takes it in the middle of the night with water when he gets up to pee. That has seemed to help.

That sounds frustrating. I would get on the wait list with the endocrinologist’s office in order to get in faster. If they have your cell no. they can send text of an earlier appointment and you can snap it up fast.

I take daily Levothyroxine with no problem. I take mine every morning and my levels stay good. However I do have issues with B12 and take that sublingually. I found this article. You might ask the endocrinologist about it.
https://academic.oup.com/qjmed/article/117/Supplement_1/hcae070.328/7704944

I have weak thyroid.. Typically above 6.0 I was prescribed 125mcg. And it worked well before changing to armour-like NPthyroid. In comparison 150mcg is clearly TOO little a dosage for you. I know persons who had thyroid removed and the 300armor was a good start and some on 300mcg of synthroid. Hopefully Your GP should be able to up the dosage WO an act of congress. ALWAYS take thyroid med first thing in AM before breakfast and DO NOT EAT breakfast till 30-60 minutes has passed. Be a PIA if the DRs are not listening. Look them in the eyes and make sure they look at you. Too many DRs are dismissive …

Hi jsb: I am a woman of 81 years and in the same boat, at least was in the same boat, as you. To give you some background of my own may shed some light on your problem and the conclusions I came to about the thyroid gland, parathyroids, Armour Thyroid, and hormonal therapy.

Bad thyroids run in my family, my mother's side--to her, to my sister, and then to me. They had goiters as I did, but mine resolved on its own after medication. Then I came down with Hashimoto's disease, like you (however, an enlarged thyroid can be precursor to this disease). This all started when I was in my early 50s so about 30 years for me. I have been on every type of thyroid medication known to man and when I hit the Armour Thyroid, bingo, it helped, because of the T3 component, UNTIL I was diagnosed with chronic kidney disease, stage 3a-b. That in turn affected my parathyroid glands (4 small glands embedded in the thyroid gland itself).

According to all of my doctors, parathyroid glands have nothing to do with the thyroid gland and that their function is totally separate with nothing at all to do with the thyroid gland.

I had worked in Pathology years ago, and I thought that may be true, at this point in time, but we all know that no science is exact. Not all things have been found in the anatomy and physiology of the human body and also everyone is different. None of my doctors would listen to me about that or my medications because ALLERGIES run from the same side of the family. An allergist told me years ago that the immune system plays a very big role in so many different things and it was difficult to even get his colleagues to listen. The thyroid gland and the parathyroid glands are NOT considered part of the immune system, but BOTH can influence the immune system.

When I remembered that, it woke me up because my thyroid gland was doing fine, as I said above, until the chronic kidney disease when the parathyroid test showed my numbers were sky high which is one of the signs of chronic kidney disease. I was placed on Calcitriol, which I still take, and gradually over time my parathyroid function has come back to normal.

However, two things I noticed: 1. When my parathyroid function came back to normal, my thyroid function, specifically T3 and T4 (reason why I went on Armour, in the first place, because of the T3 component which came back to normal before), now came back to normal instead of taking turns seesawing back and forth. Also, when I eliminated prescription drugs that I was allergic to, everything stayed that way--normal. 2. Even though all my doctors insisted the prescription drugs had nothing to do with any of my problems including the thyroid and that the thyroid and parathyroids had nothing to do with one another, everything came back to normal when I insisted they take me off the drugs I was allergic to and also to be placed on Calcitriol.

What does all of this have to do with your problem, especially with your thyroid and parathyroids gone? As soon as I read it, I was struck by the fact that when your thyroid gland was removed (although it didn't remove the problem entirely), your numbers did come way down as expected, but in removal of the thyroid gland, it also removed the parathyroids. With the loss of function of those two glands (thyroid and parathyroid), how much did it impact the rest of your system, especially with the testosterone therapy? I don't think you really would care if your problem would be solved. I also was drawn to the fact of one person stating that you are not getting enough of the Armour, which is probably correct. But neither of us are M.D.s, at least I am not. However, a good endocrinologist at Mayo or one of the university hospitals in your area of the country would be another good bet as pointed out, too. I was also on estrogen therapy in my early 50s and can see some of the same parallels in your hormone therapy. I was told it was the change of life. Men go through that also, so with the loss of your thyroid and parathyroids, it could also be playing a greater role on the testosterone therapy.

I would immediately start to look at those university hospitals in your area and try to get an appointment as soon as possible along with having your present endocrinologist increase the dosage of the Armour. It has to be done incrementally but it may give you some relief until a more thorough study can be done of your system and how the testosterone therapy and Armour are interplaying in the whole puzzle.

I think the bottom line here is my question, (with all of the background I have given), would be: Do the parathyroid glands affect the thyroid gland? In your case, you wouldn't know, but I would ask your doctors for the parathyroid gland number. They may not have done that test. If they did, it would be interesting to see if that was also elevated. However, they will tell you that the two glands had nothing to do with one another. However, that number could give some insight, perhaps, into the present dosage needed for the Armour. Also, if your parathyroid numbers were high, you could still benefit from Calcitriol therapy in the short term. Even if that test wasn't done, no harm to add some calcitriol to the mix if your vitamin D number is not normal.

I told my doctors that they can consider me a cranky, old lady, but they will never convince me that 4 small glands, embedded in a much larger gland, do not affect one or the other, as it may have had in your case, as well. Hopefully, if you can get the Armour at the correct dosage along with the testosterone therapy, etc., you may no longer have to put up with your problem. Hormonal therapy, whether male or female can keep you sweaty and hot at all hours of the day and night and give you all of the symptoms you described.

Take this post to your endocrinologist and discuss with him. Questions you need to ask is can the information I provided help? Why or why not? Then you should make up your mind after a discussion and research on your own and definitely get that university affiliated endocrinologist appointment. We are not a one size fits all human race.

I wish you the best and please keep us informed of your progress.

Hi again JSB: I thought of something else about the thyroid and parathyroid. I don't think I emphasized the importance of those two glands in hormone production. You did state you are on testosterone therapy and that is probably because those glands have been removed. I asked the AI on the internet a question about the connection between the two glands and hormone therapy--the triangle.

Thyroid, Parathyroid, and Testosterone Hormone Interactions in Males
Yes — the thyroid and parathyroid glands do influence testosterone levels and overall male hormonal balance, though the thyroid’s role is well‑documented and the parathyroid’s is more indirect.

Take that question above and put it in your search bar to get more information as this site does not allow links and URLs.

@oscarde1
Hi:
I was diagnosed with Secondary Hyperparathyroidism by the Norman Parathyroid Clinic in Tampa, Florida and my cause was due from malabsorption. Most patients with Secondary Hyperparathyroidism is caused by a Kidney problem or will affect the kidneys. It took me 5 Endocrinologists and 3 years to get this diagnosis. Secondary Hyperparathyroidism is when you have low calcium, low vitamin d and a high PTH, which I have. I am now on a prescription Vitamin D2 because the Vitamin D3 doesn’t work for me. Unfortunately this disease caused severe osteoporosis. I would definitely get another opinion because like you said your thyroid and parathyroid are two separate things. If you have Primary Hyperparathyroidism then the bad/tumor must be removed by a very knowledgeable Surgeon and the Norman Parathyroid Center is the best place to get the correct diagnosis and removal of the tumor/s.

@redhead63 Hi Redhead: I don't have any problems from the hyperparathyroidism anymore. I am on a prescription vitamin D called Calcitriol and I was fortunate that I had normal calcium levels with no osteoporosis. My posts were in response to the original poster, (first one), JSB, who is having the problems.

Your recommendations, like mine, are for him to keep on looking for the endocrinologist who can help him and, unfortunately, for many of us it means going to multiple doctors until we find someone who gives us an answer. I was also fortunate that I have a nephrologist who spotted it from the start and put me on appropriate treatment. Perhaps, that is why I had a better outcome than you did. I have heard good things about the Norman Parathyroid Center so perhaps he can look to them, even though he no longer has his parathyroids, they may be able to help. The nephrologist found it through a simple blood test, but because I have some other even greater problems he was hesitant to put me on the Calcitriol until I insisted we try. I am glad I did. Best of health to you.

@cehunt57, I wouldn't be against it were it not for the cost which I cannot afford at present. I am a few hours away from the University of Utah and they have a good medical program there, but most of the endos I have looked into there won't take my insurance -- they don't like my carrier.

@celia16, I have been struggling for months to get on any list at all. One endo told me it would be a 3-4 month wait before he could look at my case and decide if he'd take me as a patient and then, if he did, it would likely be another 6-9 months before he could squeeze me in. Another told me 9-12 month wait, but they would have to consult with the doctor. Before I could get on the list, the doctor was promoted to administration and ended up closing her practice. Most of the endocrinologists in a 4 hour radius of my location are either pediatric endos or they focus on women's health (pregnancy, for example). They have all been booked. Since I posted this, I did get on with a new endo -- it's a telehealth call. I hope she can help me out.

@venture, I have explained to my GP that many endos use formulas for determining initial dose that factor in the patient's weight, but she won't follow it, telling me that's not how she was taught. She started me out on 60mcg initially after surgery, and for that month I felt like I had one foot in the grave -- it was horrid. While that is frustrating, at least she's done something. Literally every other doctor I've seen (prior to surgery) seemed to think rechecking in 6 months was good enough, as if my thyroid would somehow cure itself. None of them have wanted to really take the bull by the horns and be aggressive. They all took a "wait and see" approach. It's beyond frustrating.

@oscarde1, thankfully I didn't have my parathyroid glands removed, and they were okay immediately post surgery, so I am hoping they are still good. I did have some tingling in the lips the first 2 weeks, which the surgeon said was a possibility. She had me take calcitrol for about 2 weeks and thankfully my calcium levels were okay when I had my next surgical follow up with her.

I should clarify I was on testosterone therapy long before I had thyroid surgery. Whatever is causing me to have low TSH has been present since I was a teenager. I never seem to get very far with doctors, GPs and endos alike. As I've mentioned, many accuse me of not taking my meds, or insist I must be taking them with food, soda, etc. They don't seem to believe me when I insist I'm following doctor's orders. The GPs tell me the endos don't know what they're doing, and the endos try to discredit each other. One endo told me to never, ever take levothyroxine, for example, and another told me to never take anything but levothyroxine. I've witnessed a lot of eccentric behavior with the endos in particular.

It's just maddening and frustrating, and its one of those things people don't understand unless they've struggled with endocrine issues themselves. I've had to quit seeing two different local GPs in my area because of extramarital affairs that took their focus off of their patients (one was fired immediately after the accusations). One endo I went to saw me and my wife and he sent us out the door in less than 10 minutes flat (total), telling us that our problem was that we were overweight -- he insisted low thyroid cannot cause depression and told my wife she was simply too fat and needed to take a weight loss medication, which brought her to tears. All this has added up to be a huge expense over the many years, and without any positive results. My current GP is actually a NP and while I don't agree with her dosing regimen, I must admit she's actually done more for me than all of the past doctors combined -- mainly because she actually listens!

Thanks for all of your thoughtful replies. I will give the telehealth appointment a go at the end of this month. I'm crossing my fingers something good comes of it!

I see you proved my point, Drs are often dismissive. I see your overweight being a lack of energy due to not getting your TSH in line. If you are taking Synthroid you may need to be taking well past the 300mcg. Say to the Dr. “ Hell, my thyroid was removed! You are prescribing dosages for a weak thyroid.”
Your GP seems clueless. It is difficult being in a rural area. Rural meaning to me, no city within 100 miles having population more than 50,000.
You will need to travel for proper care.
Yes, endocrinologists often have a wait time before seeing them for the 1st time. I suggest finding a competent Dr that will take time to READ up on your situation. If he or she cannot comprehend. Find a practice with multiple docs within Endocrinology or GP practice. Someone has to not have their head in the clouds. FYI- Drs are only rated on how many patients they see in a year, … gets them a high rating within the medical community, not the quality of service. Percentage wise, Endo-docs deal with Diabetes and thyroid issues more than any other problem. That’s 2 of my many afflictions.

@jsb2272 I wish you the best. Keep us apprised. Now that I know your parathyroids were preserved, I would pursue that number from the doctor who gave you the test. That would be the endo or the surgeon.

Definitely pursue raising the thyroid medication but I wouldn't fool with the hormone therapy over the phone. Keep on pursuing doctors in your area. You didn't tell us, or at least I didn't see it, where you are living. If living near a large city, that would be your best bet to have better access to endos, primary care, etc. Have you ever asked your surgeon for recommendations to endos?