BellaOnline Forums Health and Fitness Thyroid Health New to forum, recent incident with dosage change

Vic2009,

You have low D and electrolyte imbalance, which could be caused by the low D. This of itself can cause symptoms according the medical sources. Electrolytes can also affect water balance in the body although usually the sodium and chloride are more in that area. Hypothyroid patients often retain water even when well-treated and this can contribute to some symptoms including feeling short of breathor having mild pressure/pain in your chest when lying flat. I base that on what I've heard lots of other patients describe over the years and the fact that even as a male hypothyroid patient I too retain water at times.
Getting your heart checked for peace of mind is a very good idea in my opinion! Kaiser sounds similar to a blood-draw set up company I use called HealthCheckUsa.com but there is no doctor visit required with them. I get all blood tests my doctor recommends but will add ones between that maybe were'nt discussed at my office visit and then I provide all results to her. She's a Board Certified Family Practioner but the most knowledgable on thyroid of any I've been to, inclding an Endocrinologist, which goes to show it's not always in the "type" of doctor but in how good they are in treating types of conditions. I've changed doctors at least five times since 2003 and I'm of the opinion that you do what you have to do, to get proper treatment! Thyroid patients attest commonly to the fact of having to go through several doctors to find a good one for treating their condition. The doctors they switced from might be great at treating certain things but were lacking in the thyroid area.

Thanks Jim. I've started getting sun for D and taking supplements. And I got a new doctor who is starting to test for malabsorption. I also have a 1 month event monitor for my heart because of so many palpitations. But they are much less now. The palpitations reduced greatly on the day after I started sitting in the sun -- almost like a curtain dropping -- but that may have just been coincidence. I was taking 1000 IU of D and then tried 2000 IU but was nauseous all day the next day (I'm assuming it was the D, but don't know for sure and don't want to try that again) so backed off and now am doing 800 IU. The sun has been behind clouds for the past 2 days and I was worsening again, but it came out today and aside from some muscle weakness in my legs and hands, I've felt okay all afternoon. Today I tried walking a flight of stairs and then got completely breathless, and that went on for about 1 hour. After I sat down for awhile, it went away. That's better than before -- it took 3 days of sitting around inside for it to go away. My doctor retested Magnesium, Phosphorus and Calcium and all came back normal. If nothing else really worsens again I will bet this is all because of the alternating thyroid dosages. The endocrinologist said he didn't think the muscle issues were thyroid. The D made a big difference in the muscle pain and intensity (it seems, although it may be my imagination), but not so much in the weakness. So we'll see. Anyway, it was good to have a place to talk about this thing at it's worst. I'm hoping it doesn't get that bad again, and I'm realizing that staying home, taking it easy and relaxing are key to not getting bad again. I even slept through one night the other night. The first time in 2 weeks. And finally I dumped my doctor and got a new one, who is much better. Thanks for your support on that. It's very helpful to know that others have had to keep switching also.

Vic2009,

It's great to hear you now have a doctor you can put confidence in! That is so very important and I too experienced lack of confidence in previous doctors and it was my fifth switch that got me the one I'm happy with.
It's good that major electrolytes were found in-balance and that your need to supplement vit. D was discovered and being addressed as well. It's especially important for bone health.
Sometime ago, there was a postgraduate medical site that published their research and they stated that joint/muscle side effects were common when getting thyroid hormones adjusted in the body from either low or high levels, to normal. I quoted it often in the past but can't find the link to it. I believe the site has gone to secure-page requiring a password. Anyway, it was one of the few that addressed the subject of rheumatic symptoms when adjusting thyroid hormone.
If I find that page again, I'll list it in this thread and the link to it. I'm off to try finding it now but will say that I've read 100s if not 1,000s of patient testimonials to the fact that thyroid hormone adjustments caused them joint/muscle aches & stiffness similar to arthritic symptoms and I'm one of them it has happened to with dose changes.

Hi Jim, Thanks. I've been gradually improving in various ways, but it's (at least) 1 step back for every 2 steps forward. I have been having migraine headaches that come and go over periods of days, with nausea. They had stopped for the past week, but now are back -- ugh. There's no reason I think of that these are happening, and they are as debilitating as the muscle issues when they happen. On the positive side, my walking is getting better -- the recovery, that is, after I do some, and the palpitations are less, now mostly just when I eat, and I'm sleeping better this week so far. I've been out of work for 3 weeks now, but will go back on Monday, for 4 hours. And I've started seeing a counselor for anxiety -- I don't have an anxiety disorder, but the doctors are all so fixated on the possibility that this is somehow all just anxiety (since all the tests have come up normal, although I still have 2 weeks until my 2 month TSH test), so I figure it's low cost therapy, why not? Certainly going through all this causes anxiety, not knowing what's next, or if there will be another massive regression after improvement. It's nice to have one more person to "witness" the experience. My husband was looking around online and wondering if maybe I have Myasthenia Gravis (which has mainly muscle weakness) -- I hope not! But apparently that can take 2 years typically to diagnose. Anyway . . . I'll let you know how things go, as they go. -- Vic

Vic,

Interestingly, there's medical research that says thyroid autoimmunity can cause a mild manifestation of Myasthenia Gravis (MG). I found this research back when I was searching on the subject of rheumatic symptoms from Hashimoto's thyroidisis.

QUOTE: In conclusion, MG associated with AITD has a mild clinical expression...

Research Article Link> Mild clinical expression of myasthenia gravis associated with autoimmune thyroid diseases.

Whether there's an aspect of MG in a patient with autoimmune thyroid or not, it can still cause rheumatic symptoms regardless. Proper treatment can help a great deal but lots of patients still have mild to moderate problems with it and sometimes it happens when they need dose changes of their thyroid hormone. I had joint/muscle aches with mine for 2 years while on treatment but once mine resolved after being on adequate dose of thyroid hormone, they resolved and are now near non-existent.

Also: I too don't believe it hurts a thing in the world to get some anxiety therapy, regardless of whether it's a real problem or not because it might help you somewhere down the line and might give you pointers you can share with others suffering anxiety.

There are still doctors who believe anxiety can only happen with hyperthyroid conditions but it occurs in hypothyroid patients commonly as well. It's also true that hyper-phasing in hypothyroid patients can appear to be anxiety symptoms when it's mostly sped up metabolism and may have very little emotional aspect to it.

Another possibility is Graves. The [url=http://www.mayoclinic.com/health/graves-disease/DS00181/DSECTION=tests-and-diagnosis]Mayo Clinic[/url] site says: "In Graves' disease, an abnormal antibody called TRAb mimics TSH, causing elevated thyroxine even while TSH levels remain low." Any recommendations on what kind of levels they may be talking about? My problem has been that TSH and FT4 are not staying within normal ranges together, one has been out of range depending on dosage in the past 6 months. In two weeks I get tested again. What I've mostly had since trying the alternating dosages are hyper symptoms, even though I have a diagnosis of Hashimotos. But I don't seem to have the eye aspects of Graves. I'm continuing to hope that this is just a situation of the thyroid needing to level out on it's own after that incident. But because issues are still going on, I have to keep looking at other possibilities to rule out. Thanks for your thoughts about counseling and anxiety symptoms. It's good to hear. I do get anxiety looking at all these possible diseases! But a walk or a distraction alleviates that for the most part. When I'm feeling badly I tend to become more anxious, but that seems to be a normal enough response.

Vic,

TRab are the "Thyrotropin Receptor antibodies". Thyrotropin is another name for TSH "Thyroid Stimulating Hormone". TRab are antibodies that attack the genes that act as receptors for TSH and as a result can alter the level of TSH causing thyroid hormone to become imbalanced. TSH is the pituitary hormone often tested in the blood to detect abnormal thyroid hormone levels but if the TRab level is high, TSH can fall/decrease allowing T4 to rise/increase. In this case they call TRab an "agonist" because it alters the effect of TSH in regulating thyroid hormone in Grave's patients but the same TRab antibodies are also found in Hashimoto's patients (usually in much lower titers) but do not alter the effects of TSH in regulating thyroid hormone and in this case they call TRab an "antagonist".

It's complicated I know but that's how medical sources describe it. The above was in my own words and maybe not the best explanation. I do know that some autoimmune thyroid patients phase between Grave's & Hashimoto's and when it's short-term it's referred to as "Hashitoxicosis". Other patients actually transition over to Grave's from Hashimoto's and I've read their stories a number of times. It's not real common.

Your case sounds to be one your doctor needs close monitoring of and I hope you are leveled out on your thyroid levels, one way or another but I hope it ends up being the simplist solution for you. Like some patients I've read about who had problems for a while on a thyroid replacement dose, you may just suddenly start doing better on it and stayed leveled out afterward.

Also:
I too can experience anxiety flares when I'm not feeling well. It can also affect my mood and cause me mild depression but always lifts when I get past symptom phases.
It's a normal reaction to not feeling well and lots of patients attest to it happening to them. I believe anxiety and depression are more of a concern when you're feeling physically well and the symptoms still don't lift or if while having emotional symptoms while feeling unwell, they are severe and you need extra help to cope with them.

Mild to moderate phases of anxiety and depression are otherwise common to thyroid patients.

A couple more questions. My doctor only ordered a TSH, but with all this going on, I'm thinking I should get FT4 also. I've never had FT3 tested and doctors tend to scoff at the idea when I've brought it up. I'm thinking of just getting the full panel myself and paying for it, rather than again get refused. I had to literally beg for the first FT4 test I ever had in 30 years on Synthroid from Kaiser. Anyway, my other question is, if someone has a lot of symptoms of hyperthyroid, but the labs come back "normal", does that rule out a role of the thyroid? Can one feel pretty awful but still have normal blood levels? Thanks, Vic

Vic,

I've always felt FT4 and FT3 should be retested at least a couple of times when newly treated for hypothyroidism because there are patients who have ratios of the two that are off. Their T4 can be good range but T3 (most powerful & metabolically active of the two) can stay low. This can be due to "impaired conversion", that some doctors either believe is too rare to be concerned about or have no knowledge of. It does occur however and is the reason brands of T3 hormone are available and because there are other low T3 syndromes like Wilson's Syndrome.
Some doctors react strangely when it comes to patients suggesting tests. They feel it questions their expertise in ordering them without any input from anyone. They should be willing however because it costs them nothing to do so, except for a simple stroke-of-the-pen.
I have used www.healthcheckusa.com in the past when doctors wouldn't order tests I wanted (I was paying for them afteral!). In some cases, the tests I ordered for myself ended up revealing other conditions I was in need of treatment for.
I feel even with optimal thyroid levels from replacement hormone therapy, some patients continue to have symptoms due to the thyroid autoimmunity disease itself. Doctors sometimes disagree with this but thyroid antibodies cause inflammation and this can cause symptoms similar to mild fever. People develop goiters from thyroid autoimmunity that have normal thyroid hormone levels as well. Medical research published on PubMed (U.S. Gov/NIH) state that "rheumatic symptoms" and "anxiety disorders" can be related to thyroid autoimmunity, apart from hormone levels.

QUOTE: "However, a responsibility of the mechanisms involved in the autoimmunity rather than a direct action of thyroid hormones seems supported by the evidences that some rheumatic manifestations may occur even in euthyroid patients, or that they are more frequent in hypothyroid patient with autoimmune thyroiditis than in those without this disease.
http://www.ncbi.nlm.nih.gov/pubmed/15288851

QUOTE: "In conclusion, autoimmune thyroiditis is present in an elevated percentage of FM (fibromyalgia) patients, and it has been associated with the presence of typical symptoms of the disease."
http://www.springerlink.com/content/u377173m87317042/

QUOTE: "A case control study on psychiatric disorders in Hashimoto disease and euthyroid goitre: not only depressive but also anxiety disorders are associated with thyroid autoimmunity"
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1308833

QUOTE: "The study seems to suggest that individuals in the community with thyroid autoimmunity may be at high risk for mood and anxiety disorders. The psychiatric disorders and the autoimmune reaction seem to be rooted in a same (and not easy correctable) aberrancy in the immuno-endocrine system."
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=516779