Treatment Making It Worse?

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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…

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  • Posted

    Hi Jay, your story is pretty typical. Levothyroxin isn't bioidentical and has side effects worse than the disease.  Levo is known to cause liver lesions among other side wffwcts, the liver kesiobs can wreak havoc with blood flow, resulting on heart palpitations, irregular heart beat and bp, and other circulatory problems.

    The bp and other heart meds also cause a ton of problems. 

    You'd be smart to check the manufacturer’s list of side effects. This may enlighten you.

    Levothyroxin is known to cause severe autoimmune disease and every side effect imaginable ftom halitosis to stroke.  You’re wise to stop taking it since it was causing all thise problems for you. 

    Levothyroxin can suppress your own production of thyroxin, cause high thyroid antibodies and can increase rT3- all of tgese wairsen hypothyroid disease. So mow youve gone off the jevo, so you’re free of the ongoing sude effects, but youre stuck with the damage. It’ll take your system a while to reregulate.

    I became horribly ill from the levothyroxin and was on high doses for way too long even though it was causing a lot of side effects.  I’ve gone off meds completely, though I have advanced hypothyroid disease. I’ve found that essential amino acids are extremely gelpful in treating thyroid disease. Give them a try.

    Also you mention belly weight. Is it weight or bloat? Bloat could be a sign of chronic pancreatitis, which needs to be treated with diet.

    Sono, your stiry foesnt dohnd crazy, it sohnds typical 

    of what many thyroid patients deal with.

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  • Posted

    Just a quick note for now. I’d recommend seeing an endocrinologist. TSH of3.8 is still high although it’s technically in the so called normal range. Most endocrinologists will want it close to 1, or even lower for certain individuals. An endocrinologist can also check T3 and other hormones to get a better idea of what’s going on and if there’s anything else involved. 

    Also, hypothyroidism typically results in low bp to my knowledge, not high. Interesting. There is likely more involved! Best wishes! 

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  • Posted

    I have just started Levothyroxine and the info/ posts I read are less than encouraging. Unfortunately, unless you can afford a private functional medicine- what choice do we have?

     

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    • Posted

      PlEASE EVERYONE Synthroid is not the wicked.hormone replacement that ppl make it seem. I'm in a LOT better health then most ppl my age. I wouldnt be able to say that if I didnt start it. Most.likely wouldnt be around to say anything. You dont want to know what happened to ppl decades ago.when they werent dxd and didnt replace. Hypothyroidism is a serious condition that can for the most.part be treated fairly easy. If untreated you will eventually have serious cardiovascular and.cerebrovascular problems...to name just a few.

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  • Posted

    My blood pressure became elevated when my thyroid levels went low as well. It came back in range with Synthroid.
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    • Posted

      Hello-I have elevated blood pressure (had always been very low) that began around the time of the Hypo symptoms.  I was hoping that with Levo it would go back to normal but it didn't. I have started on Synthroid and it is still elevate but my pulse rate is very low (55).  If I may ask, what dose of Synthroid are you on and are you also on Levothyroxine?  How long did it take for your blood pressure to return to normal?

      Thanks!

       

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    • Posted

      Hi Karen, my bp was extremely low while hypo (90/60 -ish). It went to a bit above normal while on the meds. A lot if people post that they have high bp as a result of the meds.

      I developed liver lesions  with the meds and feel this contributed to the increased bp for me. When I went off the meds, my bp didn't go back down, which it should have. I honestly think it caused a bunch of damage to my liver which is causing my bp to stay slightly elevated.

      The levo was extremely toxic to my body. There’s no way around the vonclysion of toxicity when you have tests before and after showing liver lesions popping up with the use of the Levo. Which is what I experienced. I should have been taken off them levo immediately. There are actually published case studies that show similar results. Unfirtunately docs don't have time to read everything. And in my case, my medical facility has standardized procedures the docs are required to follow, whether they work for patients or not. 

      My point is you really have to take back your power, dont exoect tge docs to know how you feel. YOU have to tell them how you feel on the meds. YOU have to make the decisions.

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  • Posted

    Are you still on blood pressure med? They make a lot of people gain weight...they SLOW everything down. Maybe try half your dose of Synthroid and skipping a day. if you need to, and see how you feel. You may hv excess hormone release in the early stages of hypo. You had the TPO and Tg antibodies tested? Speak to.your doctor? Synthroid can lower your antibodies and lessen inflammation...nip it in the bud.
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    • Posted

      Synthroid in particular contains acacia and a bunch of diyes snd affitives. So it can REALLY trigger immune system problems. You teally need to be careful with additives in the meds.

      Most people will go through a process where they try a progression of meds. My trial and error went domething like this: I tried s lot of supplements prior to my diagnosis snd even after diagnosis. Thefirst mefs for me were NDTs but at the time there was a “short” supply.  I had difficulty dosing and they caused anxiety. I had to change docs because I moved, so was put on Synthroid. It was HORRIBLE!!! I was then prescribed levoxyl, then generic Levo, then compounded Levo (specially formulated  without additives), then NDTs (there are several types that docs typically prescribe). Then bovine OTC glandulars. Then supplements.

      My conclusion is that even though I have advanced thyroid disease, by the time I was done with all these meds, they were extremely damaging and I feel the Levo actually accellerated my thyroid disease and triggered a ton of other autoimmune issues. 

      I was told, like everone, to stay the course, it will work. I was not told about the myriad of longterm side effects, AND, there is no guaranty that these stnthetic meds do anything to curb the progression of thyroid disease. In my case, they worsened my disease and caused the thyroid cysts to quadruple in size.

      I refuse to folliw the medically advised progression if the disease to the point where my thyroid is so damaged that it requires removal and a lifetime of drug dependency.

      Levothyroxin, T4 is a synthetic thyroid replacement. Because ut is not bioidentical, it can trigger severe autoimmune disease. It can also cause massive weight gain.

      Some people get relief from levothyroxin. I suspect  the connection between thyroid and adrenal disease may be part of what determines whether these meds are effective. If your thyroid disease is a ptomary disease, meaning the thyroid disease (nearly always autoimmune) is the source of your illness, its likely that another autoimmune trigger would worsen.

      However, many people  with thyroid disease have adrenal burnout that triggers thyroid disease. So the primary disease is actually adrenal.  These people are less likely to gain weight with thyroid disease and seem to have less problems with autoimmune reactions, seem to be more tolerant of meds.

      Unfortunately, most peopke never get tested for adrenal problems, and adrenal testing is not reliable (evenmore unreliable than thyroid testing). If you tead the prescription infirmation on ghyroud meds, they all say to treat adrrnal disease before taking thyroid meds, but docs dont follow this recommendation. 

      Both thyroid and adrenal disease need to be treated at the core of the problem if you have the goal to feel like yourself again. Most practitioners prescribe meds and do nothing to identify the source if the problem because prescription meds treat symptoms, they don't eliminate the cause. 

      For you- you’ll have to do some trisl snd error about what works and what doesn’t. Keep in mind that you’ll likely have brainfog and even when other alternative mefical practitioners can easily observe whether the meds are helping or hurting, they cannot tell you because laws prohibit this. You’ll need to keep a log and track your own symptoms with everything you try. 

      Do t exiect support from friends or family, as the belief is that these meds work and peopke who don't take them are sick because they don't take the meds. People don't understand that we’re sicker with meds than without. People don’t  understand how horrible thyroid disease is and that it’s extremely difficult to heal or tecover from thyroid disease.

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  • Posted

    One man's medicine is another man's poison. You stopped the BP med too? Maybe you can lose weight now and have more energy for exercising. And more bloodflow to your brain. Just try to get all the tests done esp FT3 and antibodies at least youll have a new baseline. Maybe your thyroid reset itself. Sometimes it takes weeks to see how you really are wout thyroid meds esp if you felt overmedicated.

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  • Posted

    How can you blame Levo for your high BP when you had high BP.BEFORE you even started Levo and on more than one occasion? You said in the past your High BP. would eventually return to normal. Maybe that's what.happened. High BP.can cause headaches. Sometimes high BP is a bodily response to force more blood to the brain or upper body or extremities etc. Maybe the next time.that happens you can have a cardio workup. Have you stopped your BP.med?

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  • Posted

     I apologize for the lack of response.  That's one of my pet peeves (when people post, and then don't respond!)  mar75090:  I am still on a very low dose of the BP Med, which I'm not even sure if I need... I'm on 12.5 MG of Losartan.  My BP was slightly elevated, which was the reason I went to the doctor - by slightly elevated, I mean like 128/84, or something like that... I monitor the BP due to an aneurysm.  Believe it or not, the Levy caused spikes I'd never seen before and even my cardiologist at KU said it was likely caused by the Levy.... so while I know some people are going to defend the medication, I just know for whatever reason, it didn't work for me, and it can cause the symptoms I am describing.  

    I don't know if I can post links here, but there are a few good references out there that state Levy doesn't work for those that can't convert T4 to T3... If you can, Levy will work... if your body can't, which isn't uncommon for those with Thyroid problems, Levy will not help and in some cases make it worse.  It seems to really depend on what the root cause of the problem is.  To each their own.   

    I did manage to trickle down a few pounds, but I've spiked back up... and up to 150 pounds this weekend, which I have not been since 2003 when I was losing weight.  I am a bit concerned as to what my thyroid levels might be and considering seeing my primary doctor again, but I was led to believe as long as my levels were within range, there were no other options.  Given I'm not even taking the medication, I can just see her saying to wait until I see the endo next month.   =-/

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    • Posted

      Your TSH isnt suppressed or lowered that much so you must be on a really low dose. You won't get enough FT3 if that's the case. Anyway your antibodies can still cause dumping of thyroid hormones that could cause ups and downs. Also do not take whey protein it raises serotonin in hypo ppl to real uncomfortable levels. Hypos are very sensitive to serotonin and tryptophan. Thats why antidepressants don't work for everyone because of the high serotonin in their brains that causes agitation and anxiety. When ppl stop thyroid meds they usually feel better at first then weeks later the.old symptoms kick in. When you get more thyroid tests you will have information of what's really going on.

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    • Posted

      Hi Jaybird, it might be useful for you to know that I found treatment for chronic pancreatitis to be very helpful.  Turns out hypothyroid disease is linked to so many other problems. I’ve been taking digestive enzymes and going to a white rice diet when I'm not feeling well. It helps. I mention this because never in a million years would I have thought I had subclinical/chronic pancreatitis. But it helps incredibly with the inflammation and food sensitivities. I had tried digestive enzymes in the past without results. I suspect I didnt try the right ones.

      Just something to keep in mind. Not like your head isn't spinning already.

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