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
mar75090 Jaybird10
Posted
Ps "Why suddenly the thyroid issues?"Everyone unless hypo at birth.had normal TSHs until they became hypo. Plus you have a father with hypothyroidism. I dont even have an immediate family history of hypothyroidism that you do. How do you know you cant convert T4 to FT3 if you never had it tested? No one becomes instantly better from thyroid meds it can take months or even years. Treating hypo doesnt always mean that every symptom you felt will be remedied a lot of these symptoms are not from hypo but from a genetic change that causes Hashi hypo and other symptoms/issues that aren't fixed by thyroid meds...even if thyroid function is. Also when you have hypo you shouldnt restrict calories you need varied nutrition from foods to maintain thyroid health and not just depend on thyroid meds. Your BP wasnt that high and if you took bp meds maybe it also dropped too low than your body would try to raise it to get blood to your brain. You can't work out as much as before with hypothyroidism it is too taxing on the gland and could cause days of exhaustion afterwards. Moderation is the key. Your TPO and Tg antibodies need to be checked they can cause many symptoms that you are having.that wouldnt get fixed by thyroid meds.
MtViewCatherine mar75090
Posted
Mar’s right about a bunch of stuff. Working out is more difficult with thyroid disease. The problem is that you have to do something to maintain fitness. You may have to change your type if fitness so its gentler on the body: more yoga, less running, or water jogging instead of land jogging.
I'm not so sure about genetic components. I actually studied molecular biology and genetics and I find much of the research suspect at best. Plus, genetics are something you can’t control, so focus on lifestyle, which you csn control. There ARE studies that support, 90% of health is determined by lifestyle. Regardless of the right or wrong of these beliefs, focus on what you CAN change.
I'm not so sure that we all have “normal TSH” until we don't. There is no reliable data for kids’ and infant TSH, they don't do blood tests as part of a standard physical for kids. There’s no way to really know what normal is.
I have found that I need to budget my calories wisely. For me, being overweight is extremely hard on the body. If I budget my calories, I can get enough nutrition along with supplements. To lose weight, I have to drop my calories very low, along with exercise. If I folliw a “normal” weightloss plan, I actually gain weight. Yup, it took me years if dieting to realize I didn’t lose weight on typical diets.
I can tell you that the downward spiral that happens with increased weight and the inability to exercise is the kiss of death and is extremely difficult to come back from.
On one hand, I’m angry because I’ve had to spend so much time and energy managing my health and weight. On the other, I’m grateful for having fought to keep the weight off for as long as I did, as it is extremely important in overall health. And my life was so much easier without the extra weight! I can tell you without a doubt that I ate more when thin than fat.
My point is don’t give up, keep your goals in mind, and work towards them. If one thing doesn't work, try something else until you find the right answer. Of course be realistic and don’t beat yourself up in the process when things don’t work as you’d hoped- they almost never do.
Jaybird10
Posted
Thank you again to everyone who has responded. I've made another doctor's appointment for Friday to my primary doctor. When I made the appointment for late July (In April) for my Endo, they said they could probably get me in earlier if it was 'urgent' or if my doctor requested so. I am thinking about asking her to do this, but I feel somewhat selfish also.
The sleep problems continue, but I have managed to creep up to at least the mid 150's in weight suddenly and my belly is very distended. I can feel it. I can tell by the shirts I put on. It's so frustrating as someone that goes to the gym and tries to eat well. There is absolutely no reason why I should have gained this much weight so quickly - I mean, we are talking ten pounds in less than a month (more like 2 and a half weeks) and about 20 since the beginning of the year.
I feel like I can function, but the weight/belly issue is extremely depressing to me.. when I was at least maintaining, I felt like I could manage things... I know the weight and even the bloating is often a symptom of problems but I'm just hoping when I do get a doctor that looks at this, I don't get the runaround. Very stressed and frustrated. But I will see my primary care doctor again on Friday and see what she says. She will likely say her hands are tied until I can see an endo
Jaybird10
Posted
I just wanted to update everyone that has responded. I was thrown a bit of a curveball on Tuesday of this week as my BP began to climb again and now I am again suffering from the elevated blood pressure. While it's not an emergency, it's definitely different than how my BP had been running. My blood pressure is sometimes normal or a bit above but is now climbing to 140/90 or 140/100. The BP medication Losortan I'm on does help, but I'm on an extremely low dose.
I went to the doctor on Friday and she said we'll keep the blood pressure medication the same dosage for now. She is going to reach out to my endo to see if perhaps they can try to get me in earlier. When I scheduled the appointment back in March, the person scheduling said if I needed to be seen sooner, I would need my doctor call and let them know. I didn't figure it was urgent as I was stable (or at least felt like it from late April until this past week) but now I thought I might have her do that. I'm not sure what will come of it. I continue to live life day to day, trying to enjoy what I enjoy doing but at times it's hard.
I had 3 headaches last week. That's perhaps the worst thing I had before - very bad headaches. The one wildcard to all of this that I have failed to mention is my kidney levels (BUN, Creatinine, etc) are extremely elevated and have been for a while...and again this week I began experiencing UTI symptoms, just like I had when my thyroid was bothering me last time (or at least when I felt bad, with elevated BP). My doc thinks they are two separate issues, but it's interesting...
MtViewCatherine Jaybird10
Posted
Hello Jaybird,
The symptoms you describe are confusing for sure. Its likely you’re dealing with side effects from the levo along with a combination of high and low thyroid symptoms along with side effects from the medication. There could be several reasons for the symptoms:
1- Remember, levothyroxin only provides T4 thyroxin. Your body has to convert it to T3. Check your blood tests, your T4 is probably at the high end if normal, while your T3 is on the low end. When the T4/T3 ratios are out of balance, this can cause a lot of problems.
2- Try looking at the insert that comes with your meds. It may help you sort out which of the symptoms are possible side effects. However, unfortunately, manufacturers lists aren't always complete, so you aren’t dealing in absolutes. Levothyroxin is kniwn to cause fibromyalgia, RA, hypothyroid disease, and many other health problems.
3- The symptoms you’re dealing with are similar to what I went through while taking levothyroxin. It didn’t alleviate the hypothyroid symptons at any dose, and caused a myriad of other symptoms as well as additional thyroid symptoms. My cyst quadrupled in size while on the levo.
There are thousands of posts on this sight about all the ridiculous side effects of levothyroxin- go to the levothyroxin group and read them.
4- Also- distended belly? Adema? I had these and more symptoms and rapid weight gain when I was taking levo... way worse than the thyroid problem. It may be chronic pancreatitis.
Even after stopping the levo, the side effects have persisted. I read up and made some changes in diet, etc for chronic pancreatitis. I feel the levo triggered the subacute pancreatitis.
My experience with the levo was so extremely difficult that I feel levothyroxin should not be prescribed for anyone.
Please, if you feel the symptoms started after taking the levo, I would urge you to switch to an NDT prescription. The NDTs have far fewer side effects.
There are thousands of posts on this site from prople who’ve been through EXAXTLY what you’re dealing with. Read through the posts and you’ll find you aren't the only one, the runaround from docs is typical, the problem with the meds is typical, and people post the things that work for them. You can save yourself a world of pain by seeing what others have gone through.
lauriej1974 Jaybird10
Posted
Jaybird10
Posted
I'm glad to know I'm not the only one that responded bad to Levythroxine. I have done my share of reading on the group and I'm reading more and more posts...and you are definitely right - there are definitely a lot of people who get the runaround, which is so sad. I feel like I have been waiting to see the doctor for ages now. No word from anyone yet today as my doctor said she would put a call in to the endo I'm going to be seeing to see if he could get me in earlier (the scheduler said if I felt I ever needed to be seen earlier, my doctor would have to call). I scheduled months ago, but am still scheduled for July 28 as of right now. I guess as more time goes by, I'm only getting closer...
I am no longer on Levythyroxine as of April 25. After going off of it, my BP dropped back to normal and symptoms seemed to subside, other than insomnia until a couple of weeks ago in which I've had rebound weight gain and my BP is again high (between 130/90 and 140/100).
Laurie, I wondered about the possibility of too much medication as well, but after getting my blood work checked while on the Levythyroxine, my TSH level was still nearly at 4.0.. I'd guess it's just not the right medication and as Catherine stated, levels of other things such as T3 should be checked...but unfortunately, despite going to the doctor for this since January, I've only had my TSH checked a few times.
I'm going to have to do some more reading on chronic pancreatitis. I looked into it before but dismissed it, but it could be. I also have constipation (which could even be making it worse). Oddly enough, my kidneys are not functioning right either, which I've also read can be to low thyroid function. Just a lot of things going on and it's been months without any progress. Very frustrating.
I am VERY interested in the NDT prescriptions, as I've read a lot of good things about them and there was even a recent study I believe that showed hypothyroidism patients prefer them over Levythyroxine. It seems like a lot of patients have a hard time getting them prescribed though, which concerns me. I guess I just have to get to see the doctor first, then deal with that..
mar75090 Jaybird10
Posted
Guess you can't blame all your issues on levo since you still have them after stopping levo since the end of April. I really didn't think levo was the reason. Your kidney function is not optimal and that can be your reason for your high blood pressure and headaches. But if you can get a rx for NDT this is the time to do it since you stopped the levo.
MtViewCatherine Jaybird10
Posted
Hi Jaybird, so glad you've been able to read up!
If you’re comfortable with dosing medication yourself and can afford it, you can order ThyroGold online without a prescription.
The ThyroGold is much better than the prescription NDTs because it is organic and is from cows, so the ratios of T3/T4 are closer to humans. My mother uses this product after decades of struggling with her thyroid. She’s a different person, doing beautifully.
I use essential amino acid complex. This supplenent offers the proteins required as precursors as well as the proteins that act as enzymes that drive the teactions your body needs to manufacture thyroxin. I find the amino acids to be more effective than any of the meds, as there are virtually no side effects. I ysed higg doses of the amino acid complex initially plus extra phenylalanine capsules. I initially had headaches, but I got them worse from the meds and I’m not sure ehat side effects were caused by going off the meds, as I quit cold turkey and was on very high doses. I suspect the phenylalanine can cause headaches if not dosed properly. I feel like the amino acids saved my life. They aren’t perfect, but I was able to turn the downward spiral around and am finally improving enough to exercise.
Most patients go through a typical progression of treatmemts starting with levothyroxin or synthroid. On each mefication, you try carious doses and brands, next is various brands and doses of NDTs, next us otc glandulars of which ThyroGold is truly the best. People also try many herbal formulas- I’ve found them to offer temporary relief but nothing longterm.
The trick is to get yourself help that works for you before your health decines AND your thyroid health deteriorates beyond recovery. Because there are many people who take the neds faithfully and still wind up having thyroid surgery- never to be the same.
You’ll need to deal with the effects of the meds and hypothyroid. Acupuncture can be extremely helpful getting the body back on track faster.
mar75090 Jaybird10
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trudy98661 mar75090
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mar75090 trudy98661
Posted
MtViewCatherine mar75090
Posted
Hi Mar, the NDT is made from ppigs (porcine). They have way higher T3 than humans. So you get highT3 and lowT4. With levo, you get high T4 and low T3. Both scenarios have the potential to offer temporary relief of thyroid symptoms at the short point in time when you T3/T4 ratio is correct. Since mist people have a tendency towards low T3, the NDT has a better initial result.
The belief is that the high T3 in NDTs causes anxiety, heart palpitatations and panic. T3 is linked to adrenal response, which us why you feel like youre responding to an emergency when the T3 is high- anxiety, rapid heart rate...
For this teason (the beief tgat NDT is more likely to cause heart palpitations), levethyroxin has been marjeted as the preferred treatment, especially for high doses and elderly people. However, the belief that levothyroxin does not cause anxiety, heart palpitations, etc is untrue. As so many people in the levothyroxin group have posted these side effects.
In addition to the imbalance in T3/T4 ratios and side effects of islpitations snd anxiety, concerns around NDTs are that the product likely originates from factory farmed animals, so definately not organic. Thyroud disease affects the dntire endocrine/hormonal system- why risk concentrated agricultural products in our meds?
The other reason docs traditionally don’t like to prescribe NDTs us that prior to 2012 there were huge shortages and the meds would be “backordered” for as long as six months. So you'd have to buy a year’s supply at a time, which means changing doses is difficult.
Then in 2012/ 2013, magically, there were no longer any NDT shortages and all the manufacturers had regular supplies available, as they have now. Initially, had been on the meds about a year and was doing fairly well (except for formulation changes) until about the time when there was no longer a shortage. Then all of a sudden the NDTs no longer worked and the anxiety was off the charts! This coincided with a move, so I assumed it was stress related (ridiculous since I’ve never had similar symptoms with other moves), went to a new doc near my new home, who switched me to Levo. Followed by several years of (levothyroxin) hell. When I finally went back on the NDTs, they didn't work the same at all, and had I the same funny smell in my urin as with the levothyroxin. (I’d never had this funny smell the first tine I’d been on the NDTs.) When I asked the pharmacist about the labeling on the NDT that said “levothyroxin”, “Triiodothyronine,” “dessicated thyroid”. (This was not how my NDT had been labeled the furst time I was on it. ) The pharmacyst told me there is no name differentiation between natural and synthetic thyroxins at all. They all use the same names: levothyroxin for T4 and Triiodothyronine for T3. This was a major national pharmacy chain, and was the same chain I’d used for my first series of NDT prescriptions.
At this point what other conclusion can I come to than, the NDT is cut with synthetics. My urin smells like synthetic thyroxin, but not as bad as while on the NDT. My best conclusion us that companies are cutting the natural stuff wuth synthetics. Easy since there’s no test designed to identify synthetic from natural. I have not found any information on whether the FDA allows this sort of selling if synthetic thyroxin. I suspect due to the shortage and lobbying, this sort of thing would be approved.
So now you know a little of the history and why I’m so p****d off. The more you look, the dirtier it gets. Synthroid was grandfathered into the FDA system and never underwent clinical testing. Generics must meet minimum efficacy (a % effectiveness, usually less than the brand name). Since Synthroid was never tested, there’s an entire class of drugs (synthetic T4) being used based on a drug that’s never shown efficacy.
MtViewCatherine
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Looks like there was a huge shortage of both NDT and synthetic thyroxin the end of last year and early this year due to the Puerto Rico hurricanes. So now we know where our meds are produced. I find it unsettling that both NDT and Levo are produced in the same area. This is disturbing.
mar75090 MtViewCatherine
Posted
That was just a rumor about Puerto Rico making the thyroid meds. But who knows what's in any meds and supplements (not just thyroid related) at any given time. There are recalls on just about everything we ingest. Ps if people can't find the problem with high lead in Brazil Nuts then just search for lead levels in Brazilian soil. Yup every rose has it thorns.