I was diagnosed with hypothyroid 11 years ago and have been on synthroid only ever since. I've never felt right since beginning the synthroid and my tests have bounced around with med adjustments for years. I've been having terrible "swings" of hashi's for almost a solid year now. First it would be hyper, then it would go hypo within a very short period of time (sometime in only a few days I would feel the shift from hypo to hyper) It got to the point where I had no energy at all and severe weakness in my arms and legs. I couldn't get up the stairs, or get back and forth to the bathroom without help and this has gone on for many months now. The muscle weakness is really the worst! My doctor first diagnosed Low Vitamin D, then suddenly for unknown reasons I would lose my potassium level and have to be rushed to the ER. He then found my Hashi's anitibodies to be extremely high.....this is the first time Hashi's was confirmed to me even though I knew I was hypo for years. No doctor ever tested me for Hashi's until now. So I had an ultrasound done last week and they found that my thyroid has been completely destroyed by the Hashi's and there is only a small tiny piece of it left. They said usually they go in and surgically remove the remaining thyroid tissue to stop the Hashi's attacks. The technician said she had heard that Hashi's can destroy the thyroid, but she had never actually seen it happen like my ultrasound. She also said I would feel so much better once the thyroid piece was removed because it would stop the attacks from the Hashi's and lower the antibodies and my symptoms would be much less dramatic (and could even go away completely). Does anyone know if this is true? I've never been in such misery in all my life and I would really appreciate anyone who can give me some advice here. And also, once the thyroid is removed completely you still have Hashi's right? Can it attack other parts of the body after the thyroid has been destroyed or is it gone for good after that?
First off, what thyroid tests does your doctor run regularly? FT3, FT4 and TSH? Please post a short lab history with reference ranges (ranges vary lab to lab so have to come from your own lab report).
Have you supplemented you low D and corrected it? Is it well up in the range now?
"They said usually they go in and surgically remove the remaining thyroid tissue to stop the Hashi's attacks. The technician said she had heard that Hashi's can destroy the thyroid, but she had never actually seen it happen like my ultrasound. She also said I would feel so much better once the thyroid piece was removed because it would stop the attacks from the Hashi's and lower the antibodies and my symptoms would be much less dramatic (and could even go away completely)."
Usually, swings from hypo to hyper occur EARLY in Hashi's, when there is still some thyroid function. My first question to the above would be: "If your thyroid is completely destroyed, how can it be causing you to go from hypo to hyper?" You do not feel antibodies per se, you only feel the effects of the antibodies on your thyroid function. If there is no function, then it would seem to me that your swings from hypo to hyper would have to be attributable to something else. Perhaps meds adjustments without proper testing?
WHICH symptoms did she say could go away?
Once you have antibodies, you usually have them for life. However, if the thyroid dies or is surgically removed, they can go into remission...they're still there, but as long as the protein their genetically engineered to attack is not present, they will stay in remission. Antibodies are very specific...they are designed and built to attach and attack ONE protein only. In fact, the two thyroid antibodies that cause Hashi's (some of us have one, some the other and some both) have specific proteins they attack within the thyroid...one cannot attack the other's. However, once we have one autoimmune disaese, we are more likely to get a second. The antibodies are different and attack different tissues, but we are more susceptible.
I'm not saying removal of the last bit of your thyroid wouldn't make you feel better. There are just some questions I'd want answered first. The biggest one is how can a "dead" thyroid have been making you go from hypo to hyper?
They have been testing TPO, TGab, Free T3, Free T4, TSH for months now and the results each time have been up and down with the TSH and TPO very high the entire time. The lab tech said there is still a tiny piece of thyroid tissue which would cause the hashi's anitibody to continue to attack. My TPO was in the 1400 range last week which prompted the thyroid ultrasound. I don't have my specific lab results because there have been so many since last November. Basically my thyroid went hyper then hypo then hyper then hypo and now back to hyper. My last TSH was .01 and I was having cardiac problems along with the dumping of potassium issues. I completely lost my appetite for months and had to stay on Ensure, Pedialite, Vitamins and such just to keep hydrated. Please keep in mind, this is just a technician who told me all these things. She works at an Endo office and also has Graves and seemed very experienced in thyroid related issues. She did tell me the doctor would call me with all the final information, but I couldn't resist asking some questions about it. I always thought my thyroid was being regulated with synthroid, but I never felt right on it and always complained to my doctor about feeling tired and achey......he diagnosed me fibromyalgia after that, but still I don't believe I have fibromyalgia since all these things came on at the same time as being diagnosed hypothyroid. I always thought it was the synthroid making me feel so bad, but never knew I had hashi's until recently. I was assuming since I still had a small piece of thyroid tissue left, that maybe it is causing the hashi's antibody's to be high....my white blood count has also been high. So my guess is my thyroid is completely dead, but alive enough to be causing these terrible symptoms. I'm taking 50,000 iu D2 Vitamin D once a week and 1,000 iu D3 Vitamin D every morning with my multivitamin. I take .75 mcg Synthroid now (a huge drop from a few months ago when I was on .125 mcg) I'm also taking .5 mg xanax to control some of these panic episodes I've been having. I have experienced huge amount of weight loss in the past two months (went from 137 to 119 lbs.) and no energy in my muscles whatsoever. I am growing more and more concerned now that I know the hashi's has eaten away at my thyroid gland and wondered what it will be eating next. I read online it can also eat brain tissue, is this true?
It's hard to comment intelligently without some labs to look at. If you could post just a few, perhaps with symptoms immediately prior to the labs (if you remember) and any meds changes made because of them.
You say the TSH and TPO have been high every time, but go on to say your latest TSH was 0.01, which is not high.
TPOab in the 1400 range is not unusual with Hashi's. Last time my antibodies were tested, my TPOab as 900+, and my TGab was > 3,000. Resilts in the hundreds and thousands are not unusual. Antibodies don't often come down, although they can fluctuate wildly even intraday. Antibody levels also do not correlate with symptoms...some people with low antibody counts feel much worse than others with high.
I'm really wondering if your doctor has been adjusting your meds up and down based on TSH, which is very volatile, and causing your swings from hypo to hyper. Once again, a dead or almost dead thyroid cannot make you go hyper, no matter what your antibody counts are. "I always thought my thyroid was being regulated with synthroid, but I never felt right on it and always complained to my doctor about feeling tired and achey." If you still had hypo symptoms, then your thyroid was NOT being regulated.
There are those who believe that fibro is not a separate disese at all, but undiagnosed hypothyroidism. It's telling that fibro is often treated with thyroid hormones...
How long have you ben being treated by this doctor? Have you ever felt well since seeing him? It's likely that you've had the antibodies for years or even decades. It doesn't make sense that with your thyroid close to, if not, dead, that it would be your thyroid causing the swings...much more likely your meds.
Hashi's doesn't really "eat away" at your thyroid gland. TPOab attacks thyroid peroxidase, which is the enzyme that catalyzes the chemical process that makes thyroid hormones. TGab attacks thyroglobulin, which is the protein precursor of the thyroid hormones. If your thyroid has shrunk to almost nothing, it's most likely due to atrophy from lack of use (much like a muscle will if you don't use it).
What you read about is probably Hashimoto's encelopathy, and it is both EXTREMELY rare and its relationship to Hashi's is uncertain. It's thought to be autoimmune (although even that has not been established), but levels of TPOab and TGab DO NOT correlate with incidence of encelopathy. Once we have one autoimmune disease, we are much more likely to develop a second (like type I diabetes, pernicious anemia, lupus, etc.), and that may be the only connection between Hashi's and Hashi's encelopathy.
Thank you very much for this information. I've just switched to a new doctor who has found my hashi's and properly diagnosed it. I had been seeing my old doctor for the past 10 years and I seriously think he just wasn't educated enough about thyroid issues to treat it properly. I kept telling him I was tired, achey, hurting really bad in my joints and muscles ever since being placed on synthroid. He would always just increase my synthroid according to TSH readings. My new doctor has found that I have these swings in my hashi's from high to low and the high TPO <1400 when last checked 3 weeks ago was causing all my problems. Here are a few readings that I have on hand at the moment,...
Trip to ER April 29th - WBC HIGH Result 14.0 (Range 3.7 - 11.0)
TSH .37 (they didn't check Free T3 or FreeT4 at this time)
Decreased synthroid to .88 mcg
June 15 Test Results:
Free T3 2.8
Free T4 1.8
TSH .01 (no readings for free's)
but this reading (although they are saying is in the "normal" range I still had cardiac issues when my TSH dropped below 2.0. My blood glucose during all this has also been slightly elevated above the high normal range which worries me too. My doctor did mention hashitoxicosis to me as he said some people don't do well with numbers that low and it can cause a thyroid storm. I am scared to death of going overactive so I'm hoping they will just remove what's left of my thyroid and regulate everything with medication. Thanks for all your help here, I'm a bit in the dark in understanding this complex disease.
Among the two people I've asked and me, we have approximately 20,000 comments on this forum...that's comments, not how many posts we've read...and we all agree that this is very, very unusual.
We all agree that we hope your doctor will explain to you how a very small piece of thyroid tissue can cause the swings you're experiencing before he recommends surgery. An atrophied thyroid such as yours usually represents end stage Hashi's when there is not enough thyroid function left to cause swings.
Did the tech mention anything about nodules?
Keep in mind that high TPOab does NOT make you feel hyper, and neither does low TSH. TPOab can only cause swings by causing your thyroid to produce too high and too low quantities of T4 and T3. TPOab itself does not cause symptoms. It's similar with TSH. TSH is nothing but a messenger from your pituitary to your thyroid to tell it to produce thyroid hormones. TSH causes no symptoms, either. So, you always have to look further and see what T3 and T4 are actually doing to explain symptoms.
Unfortunately, none of the labs from your ER visits included FT3 and FT4.
Suggestions for further testing include iron, ferritin, selenium, B-12 and cortisol. In order to metabolize thyroid hormones, iron, ferritin, selenium and cortisol levels must be adequate. B-12 deficiency can cause symptoms similar to thyroid symptoms. Also, pernicious anemia (autoimmune low B-12) is another autoimmune disease, and once we have one, we are more likely to develop another.
Has anyone satisfactorilly explained to you why your potassium periodically takes a nose dive? You should probably explore the cause of that.
Likewise, your high glucose could explain some of your symptoms. Has anyone addressed that?
Before surgery, I'd strongly recommend asking for a nuclear uptake scan (RAI-U). The uptake scan actually shows how the thyroid is working and whether or not it's producing hormones. If your thyroid is incapable of producing hormones, then your high TPOab is not causing the swings.
One thing about your labs that is interesting is that, even with FT4 at the high end of the range on the 6/15 panel, your FT3 is still quite low. This indicates that you could have a problem with slow conversion of T4 to T3. Conversion takes place mostly in the liver and kidneys and is dependent on the minerals and cortisol mentioned above.
Another habit I'd get into is never letting anyone test your TSH without testing FT3 and FT4 as well. Your meds are still being adjusted very frequently on too little information (TSH only). That is often the cause of the very swings you talk about.
Just make sure all your questions are answered before you do this.
Couple thoughts from me from a different perspective. First of all, if your potassium is found to be low and you want to supplement it, do not use the potassium you buy at the grocery store. You might as well be eating candy because those potassium supplements only can deliver 1% of the daily RDA of potassium (look at the bottle and you will see). The best stuff to get is K-DUR and you do not need a prescription from a canadian pharmacy. You can buy a bottle of 45, break or quarter them and you now have 4 months worth of potassium. Every Dr. I have spoken to has seen agreed that taking this stuff is perfectly safe to take but of course we are not doctors, just people like you speaking from experiences so check with your dr. if need be.
Secondly, agreeing with goolarra that encepolopthy is very rare. It is usually treated by a neurologist and most of the time can show up on a brain scan or MRI of the brain. Is treated with prednisone. From what i understand, people who truly have this are one step away from dysfunctional or at times have severe dementia.
Thirdly, just a fact, There are some people that believe that the antibodies will attack other parts of the body if the gland is removed. This is a myth. these are specific to the thyroid. I had mine removed and mine went from a TPO of 1600 to (last checked) 49.
Also on some people the attack on the gland can come quickly and with a vengeance. I saw my cat scan at first diagnosis, a year later, 3 mos after that and then 3 months after that. On each scan it showed considerable destruction from the time before. IN fact, in the 3 months it took me to decide whether or not to have the thyroid removed or just partial, my scan showed it destroyed the other part of the thyroid thus almost total destruction.
Finally, if you have read all of my ramblings, Hashimotos *****! There are no 2 identical people. Everyone is different.
I'm so sorry I have not written back sooner. I forgot I had posted in this forum since I've posted so much in the hashimoto's forum on facebook. Since my last posting here my doctor switched me from Synthroid to Naturethroid July 3rd. I have been on 1 grain of Naturethroid ever since then and two weeks after starting the Naturethroid my TSH went up to 31. I ended up back in the ER with all kinds of problems with low calcium, low potassium, moderate levels of blood in the kidneys, nausea, weight loss, and panic attacks. I had also not been able to eat solid foods and became very dehydrated. The ER pumped me with fluids, game me some ativan and pain killer through an IV drip, checked my TSH and sent me home. It was a horrible experience and seemed like it took forever just to get in to see my doctor. I continued on with the Naturethroid and for a few weeks I started to feel "some" better (meaning I could walk to the bathroom by myself without help) and began to eat solid foods again but only on occasion and not every day. My appetite still waxes and wanes, I have gone from 137 lbs. back in March to 116 lbs. today, but at least I'm able to eat little bits of food throughout the day and that is better than I was a few months ago. I was tested on August 15th a little over a month after I started the Naturethroid and here are those readings:
So my TSH came down from 31 to 4.294 in about 3 weeks time. My T4 now looks like it no longer exists and my T3 seems about right. I had my cortisol and ferritin checked in April and the endocrinologist said it was fine. My white blood count was up during that time though so I'm assuming I was having some sort of destruction or "swing" at that time because now my white blood count is back to normal as well as my glucose levels. My problem now is, I feel very weak in my arms and legs and sometimes when I stand I feel like my muscles are cramping and my legs are just going to give out on me. (But my potassium was at 4.1 on last check back last month) so the only thing I can think may be causing this is that I am now very hypo still. I get breathless and dizzy very quickly sometimes and the weak feeling can hit me at any time during the day now. I had my labs done last Thursday 9/6 so I am still waiting for those results so I will post them when I get the results. Thank you for your replies here and I am so glad that I found that I had posted here (brain fog) so I could update you on my latest labs. I'm now going to bookmark this so I can remember where to come. My doctor thinks I need to be back on synthroid or at least add some synthroid to my current dose of Naturethroid to get my FT4 back up. I still feel quite terrible and my anxiety level is quite high. I was put on .5 xanax 3 times a day to alleviate the anxiety but it hasn't done very much. My attacks seems to come out of nowhere and nothing seems to help, even meditation. My vitamin D level was checked after 2 months on the prescription D2 and D3 and my levels went from 22 to 65. He said to keep taking the D3 5,000iu daily which I am still doing so I assume my D is good right now. I need to check with him to see if he checked my B12 etc.....I've been poked and prodded so much I don't even know half of what tests have been run. Please let me know what you think about my current numbers. I just want to feel better so badly. It's been months and months and here I am still suffering with this. I really didn't think I had a conversion problem before so I'm thinking maybe going back on T4 only will help. I hurt all over, my bones even ache and I can't stay on my feet very long without having to sit down. But I also felt this way when I was on just synthroid too. So at this point I'm not sure what to do. Have you ever heard of anyone being on Naturethroid or Natural Dessicated Thyroid Meds and also Synthroid?? I was really hoping the Naturethroid would work, but it's not gettin my FT4 where it needs to be. Thank you so much for any suggestions I can ask my doctor about. I have an appoint at the end of this week with him to discuss my progress. This disease has had me bedridden for several months up until about 3 weeks ago. I still get tired very easily and find myself back on the sofa again completely worn out and achey all over. I have heard that it can take up to 6 months to a year to recover on a cellular level after a hashimoto attack on the thyroid, is this true? Maybe I am just not giving it enough time? I seriously wonder that since my thyroid is practically gone now how is there any thyroid hormone left?
Your FT3 is actually still quite low, especially for someone on desiccated, which has a lot of T3 in it. Yours is at 36% of range, and upper half (50%+) to upper third (66%+) is the rule of thumb for FT3. As you said, your FT4 is below range.
Synthroid is sometimes added to desiccated to get the proper balance. Since the ratio of T3 to T4 in desiccated is what it is (you can't manipulate each separately), adding some T4 med is sometimes the only way to get proper doses of each.
That being said, however, your FT3 is still low enough that I think you might just try increasing your desiccated.
After being hypo, it can take a while, once your labs are back where they should be, for your body to heal. BUT, your labs aren't even where they should be yet. You do have to give it some time. You're feeling better, and that's wonderful, but you still have a way to go to get your FT3 and FT4 where they should be. It can sometimes be prudent, once most of your symptoms have resolved, to sit back and keep everything the same for a while and give your body time to rebalance. However, I don't think you're quite at that point yet...you still need to increase.
Thank you so much for your response. I have tried to add synthroid to my Naturethroid at very small doses (.25 mcgs) and all of the sudden I have become intolerant to the synthroid.....my doctor has tried synthroid, levothyroxine, tirosint and all three to no avail. Every time I take the smallest dose I end up with excruciating body pain to the point where I can't even walk. I saw my doctor yesterday to discuss my latest labs. He says he wants to make sure the body and bone pain isn't coming from something else so he took me off the small dose of synthroid and is sending me for a bone density test? Also he ran rheumo/osteo panels on me to see if that could be the problem with the pain. I do have joint pain normally but it gets so much worse when I try to take any form of levo. I asked him if it was possible that I've just become intolerant to the levo and he said yes he had heard of that happening just like when people suddenly develop food allergies etc.....so I am stuck here until I get my labs back next week. Here are my labs from Sept. 6th.....they look about the same as the month prior don't they.....still hypo. When I try to increase my Naturethroid I get very jittery (maybe just an adjustment period??) We checked my ferritin, iron, magnesium, potassium, vitamin D, cortisol, etc. etc....and even liver and kidney function were all in the normal ranges. I'm on 1 gran Naturethroid and by the looks of my labs I need to be on a higher dose, just not sure what to increase it too....1 1/4 grain per day? I've tried breaking 1/4 grain in half and even that little extra gives me the jitters....Ugh, what can I do? Obviously straight T4 is not going to work, but how can I tolerate this small increase and should I increase to 1 and 1/4 grains or 1 and 1/8 grain......this is so frustrating and I just want to feel better. I will fight through whatever change I need to make as long as I'm not hurting all over in horrible pain with the straight T4. Any ideas?
TSH 4.925 (0.350 - 4.5)
Free T4 0.72 (0.80 - 1.80)
T3 Uptake 38.6 (22.5 - 37.0)
Free T3 2.7 (2.3 - 4.2)
Reverse T3 7 (11-32)
T4 Total 4.3 (5.0 - 12.5)
Some of us are very sensitive to meds and have to increase VERY slowly. I'd suggest to increase the least you possibly can (add an eighth?), give that a couple of weeks (yes, the jitters are probably temporaty, but make sure any symptoms have gone away before trying to increase again), then add in another eighth, etc.
Do you split your dose? While adding an increase on top of what you take now may give you the jitters, taking it later in the day might not.
I sympathize with you...I slogged through all my increases, but once I got stable, I felt so much better.
Thank you for sharing your Experience with me, I have been looking at Articles for Days now, as the same thing just happened to me ! My new Physician did an Ultrasound because I too had been on Synthroid for several Years, ( over 10 ) and they were unable to find my Thyroid Glands , one was completely gone and the other one shrunk so much, it's not functional any longer . I also had Problems with my Potassium Levels as well as a Vitamin D Deficiency, and the Doctor says it comes from taking the Synthroid , because it renders the Thyroid Function unnecessary since it is replaced by Synthroid, and it stops functioning and disintegrates . Why do they not tell you this before giving you this Medication, and/or make People aware of this Side Effect, I would have paid more Attention to it and looked for alternatives ! I am really angered by the Negligence of the Pharmaceutical Companies , I would be interested in knowing how you are getting along and what they are doing for you ! They should have more oversight into the Safety of Drugs, as there are constant Law Suites from where People have permanent Damage to their Health and / or Death ! I wish you the very best and hope you will get to feeling better, it sure is scary . Sincerely, Kitty
Leeleeah has not been on the forum, since the last time she posted, a year ago, so it's unlikely that she will respond to your comments.
You have (had) one thyroid gland, which consists of 2 lobes and an isthmus. The gland resembles a butterfly.
While I'm not a doctor, I totally disagree that the synthroid caused you to be either potassium or vitamin D deficient. Many people who are hypo are deficient in vitamin D.. Deficiency is not a side effect of synthroid.
Do you have Hashimoto's? If so, that's what caused your thyroid to stop working, not the synthroid. You were apparently, placed on synthroid, because your thyroid was not producing adequately. The synthroid merely replaced hormones that your thyroid could not produce. I'm sorry to say this, but your doctor has given you some misleading and erroneous information.
When the thyroid no longer works, for whatever reason, there is no alternative to replacing the hormones it can no longer produce. Trust me, thyroid replacement hormones are no huge money makers for the pharmaceutical companies -- not when you can buy 3 month worth of levothyroxine for less than $10/month -- they're certainly not getting rich off that.
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