Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
I am hoping that by joining this group I will understand better and receive much needed understanding of what I'm going through.
I have felt so bad the past year and it is wearing on me. My thyroid levels still are not right. The process seems to take forever!
Extreme fatigue, weight gain and generally not feeling like myself has been the worst! I struggle with relationships, memory loss, not able to focus, hair loss, joint pain, dry skin, high cholesterol (runs in family but shot up with Hashimoto's), rather than senisitivity to cold I have trouble with heat --I need it to be cold especially at night. I make more mistakes, even if I triple check my work, I still miss things. I had always prided myself for my attention to detail so this also upsets me.
For months I had a terrible headache, thankfully that is gone now. My eyes felt like they were on fire for a couple of months but that stopped when my thyroid levels improved some. Although I was sleeping all night and most of the day it felt like I had not slept for days. A sleep study showed I woke up 75 times in 6 hours but never stopped breathing thankfully. (I thought I woke up 4 times.) I've always been a light sleeper but when I was sleeping constantly I was hard to wake up. Now I'm sleeping more normally --for me that is. Still need to nap though on weekends. My job is now full-time so sometimes I have to take something to help me through the day.
I had a huge stressor and I think that triggered Hashimoto's. When I first felt bad I thought it was the stress but then it was clear something else was wrong. Additionally, for a couple of months last summer I wished I was dead. (Not suicidal!). I gained 30 pounds even though I did not increase calories. I never ate more than 1200-1400 calories even though for my height I was told I should eat more. This is why I think my thyroid was always a bit underactive. When I was diagnosed with Hashimoto's I was not surprised. What I am surprised at is how long it takes to get levels right, how bad it makes me feel and how little people understand. A friend told me her Doctor says only a 10 pound weight gain is normal and that she started Synthroid and felt better right away. I'm happy for her but it sure made me feel like she did not believe how I feel/felt.
In addition to the sleep study I've also seen a Rheumatologist for joint pain. He ruled out Lupus and Rheumatoid Arthritis. I do have Osteopenia (diagnosed a couple of years ago) but the x-rays of my hands showed no periarticular osteopenia. My thumb (left hand) has been hurting for at least 4 weeks for no particular reason. I have had other joint pain that I've attributed to Hashimoto's so I think that is why my thumb hurts.
I saw a Nutritionist too. And she found nothing wrong with my diet, although she too suggested I could eat more. I know that I've never been able to do that without gaining weight. I am happy I've lost 10 pounds of the 30 I gained due to my thyroid. I hope to get back to my previous weight or closer to it so I can get back into my clothes!
This is all very depressing --but I don't have depression. I've read parts of the book the Thyroid Solution and know that I'm not alone but I feel very alone. Can't seem to finish the book because I'm so tired!
I'm wondering if there is anything else I can do to help me feel better? My patience is getting thin! Lately I just want to run away and do nothing. I feel like I can't cope with anything. It makes me feel like I'm losing my mind! Knowing that what I'm experiencing is normal for this disease helps me some in understanding the disease. Also, success stories give me hope!
I have felt so bad the past year and it is wearing on me. My thyroid levels still are not right. The process seems to take forever!
Extreme fatigue, weight gain and generally not feeling like myself has been the worst! I struggle with relationships, memory loss, not able to focus, hair loss, joint pain, dry skin, high cholesterol (runs in family but shot up with Hashimoto's), rather than senisitivity to cold I have trouble with heat --I need it to be cold especially at night. I make more mistakes, even if I triple check my work, I still miss things. I had always prided myself for my attention to detail so this also upsets me.
For months I had a terrible headache, thankfully that is gone now. My eyes felt like they were on fire for a couple of months but that stopped when my thyroid levels improved some. Although I was sleeping all night and most of the day it felt like I had not slept for days. A sleep study showed I woke up 75 times in 6 hours but never stopped breathing thankfully. (I thought I woke up 4 times.) I've always been a light sleeper but when I was sleeping constantly I was hard to wake up. Now I'm sleeping more normally --for me that is. Still need to nap though on weekends. My job is now full-time so sometimes I have to take something to help me through the day.
I had a huge stressor and I think that triggered Hashimoto's. When I first felt bad I thought it was the stress but then it was clear something else was wrong. Additionally, for a couple of months last summer I wished I was dead. (Not suicidal!). I gained 30 pounds even though I did not increase calories. I never ate more than 1200-1400 calories even though for my height I was told I should eat more. This is why I think my thyroid was always a bit underactive. When I was diagnosed with Hashimoto's I was not surprised. What I am surprised at is how long it takes to get levels right, how bad it makes me feel and how little people understand. A friend told me her Doctor says only a 10 pound weight gain is normal and that she started Synthroid and felt better right away. I'm happy for her but it sure made me feel like she did not believe how I feel/felt.
In addition to the sleep study I've also seen a Rheumatologist for joint pain. He ruled out Lupus and Rheumatoid Arthritis. I do have Osteopenia (diagnosed a couple of years ago) but the x-rays of my hands showed no periarticular osteopenia. My thumb (left hand) has been hurting for at least 4 weeks for no particular reason. I have had other joint pain that I've attributed to Hashimoto's so I think that is why my thumb hurts.
I saw a Nutritionist too. And she found nothing wrong with my diet, although she too suggested I could eat more. I know that I've never been able to do that without gaining weight. I am happy I've lost 10 pounds of the 30 I gained due to my thyroid. I hope to get back to my previous weight or closer to it so I can get back into my clothes!
This is all very depressing --but I don't have depression. I've read parts of the book the Thyroid Solution and know that I'm not alone but I feel very alone. Can't seem to finish the book because I'm so tired!
I'm wondering if there is anything else I can do to help me feel better? My patience is getting thin! Lately I just want to run away and do nothing. I feel like I can't cope with anything. It makes me feel like I'm losing my mind! Knowing that what I'm experiencing is normal for this disease helps me some in understanding the disease. Also, success stories give me hope!
Sorry for the reason you're here but, glad you found us.
And, sorry that you're dealing with the same types of things many people with hypothyroidism were/are dealing with.
The meds titration process is painfully slow and really tries one's patience.
To make matters worse, we're often dealing with a worsening of symptoms or the development of new ones after a dose adjustment that's supposed to make us feel better.
Now that I understand thyroid function, I understand *why* it's this way but, that doesn't make it fun.
I will tell you this much - it does get better. The closer you get to optimal levels, the less dramatic your "ride" will be.
This has to do with our bodies respond to the hormone that's desperately needed.
In looking at my history, the first 4 months of the meds titration process were the absolute worst. I had more symptoms than what I had when I started meds.
It's truly a two steps forward, one step back type of deal and can almost feel like a roller coaster ride.
Within 6-8 months, it seemed like I was down to "kiddie rides".
And, as my levels improved from there, I still had symptoms but they were liveable for the most part.
My levels finally stayed optimized after 15 months.
Now that I'm coming up on two years since being optimized, regular labs and appropriate dose adjustments have kept me free from symptoms most of the time. This is what I always dreamed of and I'm glad it's become my reality.
The members of my first-ever thyroid forum taught me a lot. They pointed me in the right direction for research.
One of the most important things they taught me is what tests my doctor should be running and how to interpret the results. This proved vital on my path to healing.
They also suggested maintaining a symptoms journal and I wrote a thread about mine here:
http://www.dailystrength.org/c/Hypothyroidism/forum/14455047-journal-success
Another helpful concept I gleaned from that forum is "Symptoms can be confusing, lab's don't lie".
Sometimes our doctors will put our symptoms in the wrong "category". As in, if we tell them we are suffering with anxiety, they'll often say we're hyper. Yet, anxiety/panic attacks are very often hyPO.
That's when looking at labs will help. If you know how to interpret your labs, you'll know whether or not a symptom is hypo or hyper.
Not all doctors interpret labs correctly.
It's very clear to me that you are very much aware of what's happening to you.
You have taken many steps to get answers and are working towards wellness.
Being able to interpret your labs will expedite your path to healing.
Hopefully, your doctor has been checking more than pituitary hormone TSH. Ideally, you're getting FreeT4 and FreeT3 tests every 6 wks.
If you're not familiar with interpreting your labs, please know that we'll gladly show you how.
It's entirely possible to feel well while having thyroid disease but it does require a proactive patient working with a cooperative doctor.
When I had a terrible headache for months the neurologist my Doctor sent me too said it was depression because I was having a BAD day and was emotional. That just annoyed me because that was not the case at all. He ordered a MRI of my brain but my headache stopped finally about a week before the appointment so I cancelled it. I think some Doctor's just don't listen or understand how thyroid issues can affect you. I was fortunate that my GP diagnosed me quickly. I've heard of many who suffer a long time before being diagnosed.
I will post my lab results later. I think my Doctor is on the right track but it would be good to have someone else look at it. I also want to read your journal when I have more time later.
Thanks!
It is very important to have the Ft3 in the upper part for sure, since it is the most active hormone. I feel my Ft3 is low right now and getting it checked this week.
Good luck to you.
6 wks. is the amount of time it takes for levels to stabilize after a dose adjustment......no need to wait any longer for a painfully slow process.
Glad you're going to try to get in sooner.
My doctor had me get a brain MRI (checking for MS) when I complained of the cognitive difficulties I was having during the meds titration process.
Another time, she checked me for Lyme Disease when I complained of joint pain and fatigue.
I got an MG blood test when I mentioned my eye issues and another time a B12 test when I mentioned fatigue more recently.
I think our doctors are just trying to be thorough.
Free T3 is 3.4. The test before was 3.8
Free T4 is 1.27. The prev. was 1.16
TSH 2.5. Prev was 2.390. My Doctor said it should be going down not up.
My vitamin D is now 41 (was 30 then 36, now at 41 so that is looking better).
I am wondering if anything can be done about the joint pain? The anti-inflammatory I have been taking for a week and a half is not helping. My thumb has been hurting and swollen for about 5-6 weeks and seems worse rather than better. I have not done anything to hurt it or make it worse. I don't want to jinx myself but the thumb is hurting worse than the ankle pain I had before I was diagnosed. Have any of you found something that helps while waiting for the thyroid to adjust?
I'm going to comment about your labs and use the most common ranges - please correct them if your lab uses different ranges and I'll amend my comments.
This is what you shared:
Free T3 is 3.4. The test before was 3.8 common range 2.0-4.4
Free T4 is 1.27. The prev. was 1.16 common range .8 - 1.8
TSH 2.5. Prev was 2.390. My Doctor said it should be going down not up.
Your doctor is right that your TSH should be going down and, more importantly, your FreeT3 and FreeT4 levels should be going up.
A reasonable treatment goal is FreeT3/T4 levels around 60-80% of range.....and then adjustment from there (usually up) if the patient still has symptoms.
So, based upon the most common ranges, this means FreeT3 around 3.5-3.8 and FreeT4 1.4-1.6.
You can see that both of your levels need improvement.....one "good" level without the other just doesn't cut it.
I suspect that the fact your doctor hasn't been checking your levels more frequently is what has delayed your progress.
With you being 6 months into the meds titration process, your FreeT3/T4 levels should already be above mid-range.
If you are so inclined, it might be helpful for you to share your starting labs (with ranges) along with your starting dose.....and then whatever lab history (with ranges) you have along with any dose adjustments.
This will provide a clearer picture of what your doctor has been doing and we'll be able to tell you if he should have been doing something different......
The path to wellness is long enough so it makes sense to make sure our doctors are doing things right.
Unfortunately, the issues you are having could very well be related to your sub-par levels. I know that, for me, not much could help with the various symptoms caused by this except for improvement of my levels.
I spent some time last night reading other comments and links. I have been so careful with my diet for years but I'm going to step it up some more.
I just realized the low-fat Kashi bars I like and eat sometimes when I'm on the run have soy in them which I know is not recommended. I am also going to cut back on whole wheat products. Neither are a major part of my diet but it may help. I think I will try coconut oil too. I've avoided coconut products because of high cholesterol but from some of the things I've read I'm willing to give it a shot.
Thanks for your help!