Treatment Making It Worse?
Posted , 11 users are following.
Hi everyone. This story doesn’t make sense, at least to me, but here it goes. I began not feeling myself in January, if not sooner. I eventually noticed my blood pressure was elevated. This had happened a time or two in the past, but on the rare occasion it did happen, a day or two and it would go back to normal. This time, however, it lasted weeks without going away.
When at the doctor for the sudden rise in blood pressure, I mentioned how “everything would make sense if my thyroid wasn’t functioning right”. She went ahead and did the test, which showed hypothyroidism. My TSH was 5.35. I had suspected this for quite a while, but this was the first time blood work had confirmed it. My father also had hypothyroidism, so it wasn’t a surprise.
I am a 35 year old slim male (trying to stay slim anyway), 5’6”, 140 pounds or so. Frequently go to the gym and try to be as active as I can despite having a desk job. I went on medications for both nearly the same day in January of this year– Levythroxine (Synthroid) and Linisopril for blood pressure. The issues continued and I began to suffer from severe insomnia, which I pinned to the Levythroxine. Linisopril, oddly enough gave me a pressor response and elevated my blood pressure much higher. I had to go off of it and was then given Losortan.
Despite my thyroid levels showing up in the normal range on the follow-up blood work, I continued to not feel right. My BP was still all over the place. I was having major depression for the first time in quite a while and began to actually think this was going to kill me. The insomnia surely didn’t help. I continued to gain weight, which is all in my stomach. As someone that goes to the gym about 5 times a week, it was extremely frustrating and played into why I was depressed. I have went from around 137-ish to 147 (154 in doctor’s office) early in the year. My stomach was larger than it was when I was in my 160’s, which was over a decade ago.
No matter how good I ate or how tightly I restricted calories, I either maintained or gained weight. I log my foods/macros daily using the MyFitnessPal app, so the fact the scale kept going up has been a bit of a surprise and a setback.
When going back to the doctor and telling her about how miserable I felt, my TSH level was within “normal” range at 3.88 and free T4 was 1.2. Due to this fact, it seemed as if I had no further options until I seen an endocrinologist, which is in late July. That’s quite a wait, given this all actually took place a couple months ago.
As I had felt like I had lost my life (not even going to the gym would make me happy anymore, as it just reminded me I couldn’t control my health anymore), along with frequent severe headaches, I decided I had nothing to lose by going off LevoThyroxine. Magically, things began falling into place, and this is where even I get a bit confused.
I am still an insomniac. Apparently that was not being caused by the Levothyroxine, though it seemed to start the instant I began taking it. I’ve learned to deal with that and have done my best to adjust my schedule. Basically, I cannot sleep between the hours of around 11 PM and 7 AM. Otherwise, I am fine.
My weight has gone down a few pounds – still more than I was when I began having problems, but it’s at least gone somewhat in the right direction. My blood pressure has dropped to normal as well after going off Levythyroxine. The headaches are gone. The depression is gone. I haven’t been back to the doctor since, so I’m obviously not sure what my TSH level is. I am not sure if it’s even worth going back at this point. I am managing day to day, doing much better, and just waiting to see the endo. My last day of the Levythyroxine was April 25, and I have not had ONE instance of high blood pressure or headaches since.
I am not sure why I still can’t sleep. I am not sure what’s going on with me at all really… but is there anyone that can make any sense out of this? Unfortunately, my doctor has not done anything except blood work for free T4 and TSH levels. Why would Levythyroxine be like a poison to me? Why would it raise my blood pressure? Why can’t I sleep? Why suddenly the thyroid issues after my levels were always in the “normal” range before? In 2016, my typical TSH was around 2.6 on my blood work. Guess I’ll find the answers (hopefully) in July…
0 likes, 58 replies
Jaybird10
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Hi Catherine and Mar75090. I did think about perhaps trying to trickle myself back on the Levythyroxine, but I just remember how I felt on it. I did a lot of reading on Thyrogold last night. It's good to know that I at least have an option if all the doctors fail me, which it sounds like happens sometimes. I am glad to hear your mother is doing well after not finding an answer for so long! It's sad how many people have to suffer and find the answer for themselves.
I am going through so many symptoms that I am thinking could be my thyroid. I've had off and on UTI symptoms for months despite not having a UTI. My kidney levels on my blood work are elevated. From what I've read on the forums and other places, this could be thyroid related. I'm finding that I'm always clearing my throat... which I'm not sure is related to the thyroid. I have severe constipation, weight gain.. I am just amazed at how many things this is causing.
I did call my doctor today and she put in a call to my endo to see if perhaps I could get in sooner. Given my blood pressure is now again spiking about of control, my dose of Losortan has been increased as well.
mar75090 Jaybird10
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MtViewCatherine mar75090
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BP meds cause a lot of problems. Pretty much all prescriptions have a long list of side effects. I’ve been through dozens of meds for various conditions for my mother. I can say with all certainty that the best use of meds is for temporary accute situations. Anything longer tesults in adverse side effects worse than the disease.
I had constant recurring UTIs at the beginning of my thyroid crash. I feel kidney probkems can definitely accomoany thyroid issues. However, solving the thyroid stuff isn't always enough to solve the perferal symptoms. I use acupuncture, herbs and supplements to help get my system back on track.
Honestly, I take an all encompassing natural holistic approach. Its the only way to get ahead of the disease.
mar75090 MtViewCatherine
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Maybe good idea to have your TFTs done. How can you not take any replacements with advanced thyroid disease. Your very anti meds but you also know how important thyroid replacement is. Osteoporosis can also be from untreated thyroid disease but it's usually part genetic. You dont let your mom go untreated.
mar75090
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You must know that a lack of thyroid hormones causes bone loss (also short stature in congenital hypo). Your bones were probably weakened before you started levo. Your bones especially need T3. Lack of T3 causes many health problems. Holistic approach cannot give you enough thyroid hormone if you have advanced hypothyroidism. without replacement. If you really have advanced than your TSH must be really high and thyroid hormones really low...that's what an advanced state is if not supplemented. I feel much better with treatment than without.
MtViewCatherine Jaybird10
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Jaybird, your symptoms sound like all hypothyroid symptoms. The UTIs and kidney stuff are symptoms peopke don't talk about much. However since a known side effect of levothyroxin is hypothyroid, it’s difficult to know what’s what until you get off the stuff and find something that works.
MtViewCatherine mar75090
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Mar, just saw your comment on osteoperosis. I’m not sure why you keep assuming I don't know the consequences of thyroid disease. I am well aware of the consequences of the disease and the meds.
Check the side effects of the levothyroxin, it causes bone loss. I’m real aware of the osteoperosis as, following the levothyroxin, I’ve had several broken bones. The levo causes worse bone loss than the hypothyroidism. Way worse!
That’s another reason docs don't like to increase thyroid meds- horrible bone loss.
Seriously, don't you guys get an insert with your meds that show the side effects? You should. T he drug information is given out with every prescription. It used to be automatic. Now, I think you can decline to recieve the papers. But the druggist still has to offer you the written drug information.
Jaybird10 MtViewCatherine
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MtViewCatherine Jaybird10
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Jaybird10
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mar75090 Jaybird10
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Jaybird10 mar75090
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Well, I am a bit disappointed, but I guess it's a step forward. I was able to squeeze in because of a cancellation combined with a rare day off... but unfortunately, I feel I could have made just as much progress, if not more, at my primary care doctor. The endo did not want to hear what I've been going through (after I waited in the room for over an hour nonetheless). He was not even convinced I needed to be there to begin with... He said a TSH of 5 wasn't that elevated (I guess compared to 100 maybe?), and seemed satisfied with the latest lab when I was feeling terrible on the Levythyroxine, then my TSH was in the high 3 range.
He said Levythyroxine was really the only way to go, T3 medications had no benefits, and natural medications were not regulated, so he did not prescribe them. He also told me cardio did not help with weight loss...which is quite ridiculous. He felt he was the expert in all fields. He did order five total things on blood work, including TSH and free T4 again, and added Free T3, Thyroid Antibodies, and a CBC. Again, all of this should have already been done with my primary care doctor in my opinion and why I would need to see a specialist for this is beyond me. I will just wait and see what the blood results come back as, but I essentially already know what my options are with this doctor - Levythyroxine.
I'd say he was the stereotypical description of a terrible endocrinologist that I often read about on these types of forums.
MtViewCatherine Jaybird10
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Hi Jaybird. Sorry to hear your experience was so typical. The truth is that you can have advanced thyroid disease even at a TSH of 2.5. The TSH only shows high at certain stages of the disease.
THE PROBLEM IS that treatment is designed to lower TSH. Which means that, that’s what levothyroxin does primarily. It will increase your T4 levels, but I haven't seen any indication that the synthetic T4 has any sort of significant biological activity.
Hence, my reason for opting for alternatives in lieu of the useless snd harmful treatments.
Keep reading and asking questions. You’ll find something that works.
mar75090 MtViewCatherine
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"Advanced disease" when tsh is only 2.5? Guess I was the walking dead" when my TSH was 65. What you're saying doesn't do anyone with really advanced disease any justice. And what is your source and what do you consider "advanced disease".?
mar75090
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MtViewCatherine mar75090
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HI Mar, my source? Me. Certainly walking dead. Giant cyst on my thyroid. TSH was never caught as high as pathology indicates it should have been. We've had a lot of scandals with scam lab testing here. Could have been bad labs, could have been that the disease was too far progressed and the pituitary had given up trying to increase thyroxin production. Could’ve been that my high rT3 masks the problem or doesn't trigger spiked TSH. Who TF knows!
What I do know is that there is no question that I have advanced thyroid disease.
The real questions are, what caused it and how many other related illnesses do I need to treat. And why are the docs so completely incompetent and clueless?
mar75090 MtViewCatherine
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Your mother has hypothyroidism so most likely inherited. Thyroid cysts can be completely benign. So your "advanced" disease has TSH of 2.5. So that's why you don't medicate at all and just take essential amino acids with "advanced" disease. That's great if your other thyroid labs are optimal.
MtViewCatherine mar75090
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mar75090 MtViewCatherine
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What was your FT3 and RT3. You can figure out the ratio by just googling Ft3 Rt3 ratio calculation. It's not as simple as dividing because sometimes the units of measurement have to be converted. But if your RT3 is less than 15 than that alone can cause a problem.
Jaybird10 mar75090
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Hi Mar. I'm looking it up and I'm a bit lost... is "FT3" free T3? Or is it T3? My reverse T3 was not tested by the "specialist".