Hi everyone. Just this morning I met with a new endo through one of our big city hospitals here in Philadelphia, Pennsylvania. He did diagnose me with Hashimoto's but he is not giving me any medication yet. He does not want to repeat blood work until November. Although I am relieved with the diagnosis (because I have been suspecting it), I am not relieved that I have to deal with the symptoms.
Can anyone offer some insight on other remedies, lifestyle changes, etc to help with my hypo symptoms? This is all so new to me, I just don't know where to start.
I forgot to say that all of my bloodwork is within "normal range" but teetering on his decision of giving meds. I just hate to wait so long without doing anything to help me feel better. I've always been slim/athletic build so this new weight gain is really hard to stomach. Is there certain foods that I should or shouldn't be eating?
The antibodies both came back under the reference range as well.
He did explain that he feels this is the start of it and the antibodies don't have to be there to diagnose. I guess he just doesn't feel comfortable yet. He is very well known in our area for thyroid disorders but he is also 64 years old so I was a little concerned going into this, that he was going to follow traditional measures. He did seem very "up to date" with current treatment etc though and overall, I liked him a lot. I just hate feeling this way!
Careful! That old man isn't too much older than me! LOL
Your FT4 is on the low side. You're at 20% of range, and many of us don't lose our hypo symptoms until FT4 is right around 50%. FT3 is at 42%, and the target (until you find your personal optimal level) is upper third of range. So, both are pretty low.
Many doctors practice "reference range" endocrinology. If you're in range, anywhere in range, you don't need to be treated. The fact of the matter is that we all have a personal reference range. Some of us are comfortable low in the ranges, but many of us have to have higher levels to feel well. So, treatment has to be symptom driven.
If you found this doctor reasonable, you might consider going back to him and emphasizing how bad you feel. Did you tell him your symptoms? What were they? Did you really impress upon him how bad you feel? Sometimes doctors need to be bonked on the head with something as subjective as symptoms to get them to pay attention.
Waiting until November is way too long for follow up, but you may be able to work with this doctor.
I have all of the typical symptoms but as of late (past 6 months or so) the brain fog, memory loss, weight gain, and fatigue are unbearable some days.
I really hate to switch Dr's for a third time now in fear, the same thing will happen but I can't go til November feeling this way.
Did you impress your symptoms upon him? Was he listening?
Your only choices are to give him another go or find another doctor who will treat. You can interview doctors over the phone (probably through a nurse) to get a better idea about their treatment philosophy before making an appointment.
You do know that Hashimoto only referes to hypothyroid with high TPO or TGag antibodies?
"He did diagnose me with Hashimoto's"
"The antibodies both came back under the reference range as well."
Are they just under the limit? Or well under?
Did I miss something? If you had antibodies below the limit for both of the antibody test, you simply have hypothyroid and not Hashimoto.
Although both are treated with thyroid hormone, in Hashimoto its an autoimmune disorder and raises the possibility of two more autoimmune issues occuring over a lifespan. Plus autoimmune hashimoto in some people can be a little more tricky than standard hypothyroid.
He said Hashimoto's based on my symptoms, the ultrasound, and his physical exam and he anticipates the blood work reflecting this in the net future. I raised the question about the antibodies and his answer was, the antibodies don't always show in the blood work". I have read that before too so I don't know.
What are the other two autoimmune issues?
My husband doesn't think I was really emphasizing my symptoms enough because I was also concerned more about my biopsy results and possibly needing a lobectomy. Turns out we are going to do another biopsy before taking that route.
But no, I don't think I really highlighted it as I should have and now I regret it. I will have to call him next week.
I've read also that some people with Hashi's test negative to both antibodies, but I'm with you on this one, Moose. If Hashi's is autoimmune thyroid disease, then we have to have some of the little critters present somewhere. I wonder if the operative word isn't "test"...some people TEST negative in blood work for whatever reason, but there are actually antibodies lurking somewhere. I've also read that Hashi's can be confirmed on biopsy if antibodies are negative.
Danikeyser222, be sure to make a list of your symptoms so you don't forget anything when you see the doctor. Google the long list of hypo symptoms in case there are some that you didn't even know were symptoms. It's so easy to get distracted when you're in the doctor's office. With all the other stuff behind you, you can make this visit all about symptoms.
Once we have one autoimmune disease, we are more likely to get a second or third than the general popultion is to get their first. I believe what Moose meant was that we have a heightened probability of developing a couple more (could be any of them) in our lifetime.
It would be interesting to see the TPO and TGab #'s. Thus my previous question "Are they just under the limit? Or well under? ".
Antibodies are mysterious to some extent. Most autoimmune issues have specific measurable antibodies associated with them. How the medical field determines the healthy amount of antibodies (under the limit) that we can live with, is not clear. So they start low and move up if autoimmune issues progress. That is why I think its good for you to know just where they are. It is doubtful that none are detectable.
Goolarra explained the autoimmune relationship a little better. Hashimoto is technically an autoimmune disease. Many diseases and health issues that you've heard of are actually autoimmune diseases.
Some are merely autoimmune issues. Example: Some have vitaligo, an autoimmune skin pigment color disorder. The symptoms are only visual in color, zero heath threats.
One of the diabetes is autoimmune, MS, psoriasis, Rheumatoid Arthritis, are other examples. So if you develop Hashimoto antibodies , its a good idea to keep an eye on overall general heath.
I kind of brushed over that one in a way. Weird method for a value though.
"It looks like these aren't real counts, but discrimination values...ugh. "
Thats what threw me. Danikeyser222's particular lab has low limits also. I think the equipment used with higher limits might narrow down the #'s a little more precisely.. If I were the patient and my TGab lab just said its under the ref range of 20, I'd want more accuracy. It could be 19 but not measured - yet.
Even with other people here under the limit, they have an actual count.
My TGab and TPO are always the actual count in three digits, (and way over)..
The only time I didn't get an exact value was when I was diagnosed, and my TGab was reported as "> 3,000". I assume there's a level above which it's totally irrelevant to keep counting, and sh/tload just sounds so terribly unprofessional. LOL
Danikeyser222, I don't know if it will do you any good to change labs. More and more, labs are reporting this way on all kinds of tests. If you have a choice of labs, you might call around and ask how they report their numbers. I've recently seen one other report where the TGab result was "< 20" with a range of "< 20", just like yours. I agree with Moose that the message is that their equipment isn't sensitive enough to pick up anything below range.
The common interpretation of this kind of value (even my PCP thought this) is that it means "very close to 20". However, my husband recently had a test that reported a value of "< 50%". Our PCP's interpretation of that was "very close to 50%". I called the imaging center where the test was done, and after a lot of runaround, I got someone to actually fire up his pictures on the computer. Her estimate on looking at the actual pictures was that it was "< 10%". 50% is a "discrimination value"...less than that, the doctor doesn't have to treat, above he does. Why should we be more technical? However, I think it's really important to know if your artery is 10% blocked or 50% blocked. If this test were repeated down the road, and the result was 52%, we'd think that nothing had changed, when in fact, there had been big changes. And, we only paid just over $2,000 for that kind of cheap, lazy reporting. I was disgusted.
My TPOab was 380+ (range < 35), while my TGab was < 20 (range < 20) ........ that's the way they report them. < 35 or < 20 is considered negative, but to me would be grounds for retesting, at some point.
It's not exactly "normal" to have some, but both TPOab and TGab can be "somewhat" (a term I've found to be seldom defined) elevated with other autoimmune conditions. Practically speaking, positive thyroid antibody counts frequently return in the high hundreds or thousands, so anything within range is considered a negative. Perhaps the allowable range is the definition of the "somewhat", i.e. anything within range could be caused by something else, so we can draw no conclusions from it.
I think both Moose and I were reacting to the fact that your doctor diagnosed Hashi's with negative antibodies. As I said above, I have read, as you did, that a very small percentage of people with Hashi's test negative to blood antibodies. This appears to be an oxymoron...how can you have an autoimmune disease without antibodies? I can only assume that this means that they TEST negative because antibodies are not or do not show up in the blood for some reason, or, perhaps, there are other antibodies that can do the same damage??? Maybe medicine has only identified the top two so far??? This will be a question for my endo at my next appointment!
Hashi's is an autoimmune disease, and the antibodies come FIRST. We can have antibodies for years or even decades before they compromise enough thyroid function to make us hypo. So, our question is: how can your hypo have been caused by antibodies that aren't there?
In many respects, it doesn't matter if you have Hashi's or not. Hypo is treated the same regardless of the cause. However, since there is a relationship between ALL autoimmune diseases, knowing whether you have Hashi's or not could be valuable information for future health issues and diagnosis. I think for now, I'd take your negative result at face value. Your doctor seems to think that antibodies will eventually show up in your blood, and it would be really interesting to know if they did.
I'm just nervous/confused/scared.... Whether it's hypo, Hashi's, or something else, I just want a diagnosis, ya know. My symptoms are real and they aren't getting any better. I just want to be sure I am taking the appropriate steps and demanding the right tests to get to the bottom of it.
Given my lab results, do you think this could be just hypothyroidism then? Either way, I just want to get the proper treatment so I can start feeling better. Are there any other diseases that you know of that mimic these same symptoms?
I'm very familiar with the "wanting a diagnosis" scenario. I think I was hypo for close to 18 months before the thyroid light bulb went off in someone's brain. I have no doubt your symptoms are real.
Regarding your question on whether this is hypo or Hashi's: Did they find nodules on your ultrasound? Did you mention that you'd already had a biopsy and were going to have a second at some time in the future? Did the doctor mention biopsy findings that suggested Hashi’s?
I think you're right, though, "Either way, I just want to get the proper treatment so I can start feeling better." That's what's important at the moment; you can hash out the finer points of whether this is Hashi's or not later on.
There are a lot of things that mimic thyroid symptoms. Something as simple as vitamin D and B-12 deficiencies can have very similar symptoms. Iron and ferritin deficiencies can, as well, and can also impede thyroid hormone metabolism even when FT3 and FT4 levels are adequate. You might have all of those tested to see how you stand on them.
Some more that might have some similarities in some people to Hypo symptoms: Lymes disease, adrenal fatigue (usually accompanied by hypo thyroid) and only recognized by holistic Drs, certain food allergies (celiac, lactose, gluten, corn), digestive issues such as bacterial overgrowth and digestive candida (which are triggered by certain foods), and blood glucose issues.
Some Drs test ANA when an autoimmune issue is suspected but not narrowed down yet. Anti-nuclear antibodies are higher than normal in autoimmune diseases.
I Called my new dr's office and he doesn't talk to patients in the phone which was pretty disturbing! But anyway the secretary tells me he can not treat my symptoms because it does not show the appropriate levels in my blood work. So he is referring me to a dr of integrative medicine! Ughhh I feel like I hit took 10 steps back. Any feedback on integrative medicine?
Do you think that was actually him speaking through his secretary, or did you get the impression she was speaking for herself? Sometimes, doctor's office personnel overstep their bounds, and it's still worthwhile to make an appointment and talk with the doctor face-to-face.
Even if you don't end up seeing him again, you have learned some valuable information about him. 1-He won't talk to you on the phone. 2-He treats by the numbers only and will be ignoring your symptoms. Good to find that out early.
I know we've had members who swear by integrative medicine, but I have no personal experience with it.
I definitely think it was the Dr speaking through her... I think she was reading it from something. Sad thing is, for routine appointments, he is booked out 3-4 months! I think I may give the integrative medicine a whirl and pray that it helps.
Thank you for all of your input. Greatly appreciated.
"Effective strategies for addressing the autoimmune aspect of thyroid disease include:
Selenium to reduce autoimmunity.
Correct vitamin D deficiency
Improve gut flora
Correct underlying adrenal issue, such as DHEA or cortisol imbalance.
Correct oestrogen dominance. Consider using Natural progesterone.
Detoxify mercury and other toxins.
Supplement selenium to lower thyroid antibodies. Also helps with conversion of T4 to T3.
Correct an iron deficiency.
Herbal medicine Bupleurum, Turmeric, Rehmannia and others.
Other Naturopathic treatments for thyroid.
Herbal medicines Withania or Coleus to increase production of thyroid hormone.
Iodine (not kelp) but in LOW dose. Use with caution in Hashimoto's disease.
Amino acid tyrosine which is the building block for thyroid hormone.
N-acetyl cysteine to detoxify
Vitamin B6 and Vitamin A to improve function of the thyroid gland.
Selenium and zinc to ensure conversion of T4 to T3.
Coconut milk/ coconut oil provides medium chain fatty acids to normalise gut flora and stimulate metabolic rate.
Excerpt from Sensible Alternative Hormone Clinic - Thyroid Disease
The list of suppliments to help specific symptoms of Hashimoto is quite long.
Most people just narrow down what they need based on what symptoms still persist after thyroid replacement.
Some have food alergies , some do not. I cant consume lactose from milk (but most people can), I can eat gluten but I consume less than in the past just for common sense sake. Trying elimination diets can help you figure this out.
No one does all of the above- since we all have different symptoms. Some people do none of the above and are fine taking a simple T4 replacement.
A high quality magnesium that does not contain oxide also helps digestive, brain fog, muscles if taken before bed time. This is just as important as B or D vitamins in some people.
Lowering stress and overall healthy eating and lifestyle helps hashimoto people.
Thank u. That's not the first time I heard that about magnesium. I'm going to try it. Now is the only thing that wi help with the weight gain and inability to lose it, the thyroid meds. This is so frustrating to me because I am a strict dieter and exercise routinely!
Also, are hand tremors also a symptom? It's a new thing for me over the past few months and it seems to be getting worse.
- With some people, yes, anziety is also common - not just in hypEr like most Drs think. This is where mag can help. Again, mag with oxide from the grocery or drug store will not absorb in the cells and is really just a laxitive - read the back label.
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