My wife has over the last year had her Levo meds upped three times. Which has helped her symptoms substaintially.
However now that we are coming into spring, she has been feeling tired all the time. She mentioned this to me last night and I have noticed it over the last few weeks as well but have not said anything. I didn't want to seem pushy as I have always been the one who nudges her about this thyroid thing and I don't want to be a nag.
I would have expected that with more daylight etc that most people seem to naturally be more awake with Vit D from the sun and generally more cherry outlook as compared to the doom and gloom of winter here in WI.
So is there a natural ebb and flow for seasonal change in Tyroid meds that people have noticed?
And would you need more or less as summer roles around? With her fatigue getting more noticeable and nothing else really changed in her life that would explain being more tired, it makes me wonder if she needs to up her dosage a bit more. I believe she is taking 125 mcg of Levo (or generic). She started out last year about mid-summer at I think 50 mcgs and had a two bump ups to get her to where she is now.
Do you know the cause of your wife's hypo? Does she have Hashi's or some other condition that can be expected to progressively compromise her thyroid function? It's possible that your wife keeps losing more and more ability to make her own hormones, so meds have to be increased to compensate?
The DR. she sees "refuses" to order the antibody test for the determination of Hashi's.
We have had Major problems and continue to with Dr's and blood work. We are unable within our HMO to see an Endo as she needs a referral. After arm twisting her GP gave the referral. The endo clinic looked at my wife's medical records and declined to see her saying that "she was being treated properly". So we struck out there.
Then we had to demand repeatedly to get the blood tests beyond just TSH. And after much arm twisting again we didn't get what we wanted with the total T3 and not free T3. But still better than the past.
The good news is that her GP seems open to treating symptoms and thus the raising of her meds three times over the last year.
I am still angry that they will not do the test we want and the fact that it seems ridiculous that they would not test for Hashi's. After all it is the only primary cause for Hypo. So why one would not want to know that is beyond me.
My wife's mom also had hypo and goiter and other thyroid problems. So there is a heredity component as well.
My wife is almost completely unable to lose any weight. No matter how drastic she can cut food intake AND increase exercise. It is so incredibly depressing to her that she can not lose weight. Also low sex drive. And she was always tired before on the lower dosage. And it was better until recently which is why I started this tread.
I suspect there is some seasonal thing and/or she has Hashi's. But without the Dr approving the test for Hashi's how will we ever know???
You can order antibody tests (TPOab and TGab both necessary) and FT3, FT4 and TSH on a self-pay basis, without a doctor's order, on the internet. They send you to a local lab for the draw and send the results directly to you. With those in hand, a little help interpreting from forum members and some research to back up your interpretation, you might get your doctor's attention. I think you can get all those test for $200-$250, not cheap, but it could be the best money you've ever spent. Also, the antibody tests are a one-time thing; they don't have to be repeated.
If your wife's FT3 is low, increasing T4 meds will most likely not resolve her symptoms. This is another possibility...she is a slow converter and needs a direct source of T3 to make her well. However, it's impossible to do more than speculate without adequate testing.
We will try her Dr one more time. And if we fail then I suppose we'll have no other choice but to go the the out of pocket internet lab route.
I think somewhere I wrote down all the things that should be tested. As in all the other vitamins etc in additional minerals etc byeond TSH and the frees and antibody tests. But I may have displaced them. although I could do a search on here as I started a thread a while back asking what all the items that should be tested.
Goolarra has given you good information and advice. As I read this thread, I just wondered if you might be able to persuade your doctor to reassess his testing and treatment if you gave him a copy of this link. It is a letter written by a good thyroid doctor for patients that he is consulting with from a distance. The letter is sent to the PCP of the patient to help guide treatment. It spells out clearly that the best approach to treating a hypo patient is clinically, by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.
For online tests, check out healthcheckusa.com to start with and there's another, that I've been told is less expensive. I'll try to find it. At healthcheckusa, I got TSH, FT3 and FT4 for $85; I'm not sure what the antibody tests cost, as I didn't need to get those.
Gimal, thanks for the letter. I think I had read that once before. But I printed it off and gave it to my wife. She read it. I told her to bring it to her Dr. next time and again demand the Free FT3 & FT4 tests.
How would one know if it would make any sense to switch from pure T4 med (Levo) to either adding a T3 or going to a combo drug?
I can't say the the Levo med has been bad. But I can't say we've tweaked the dosage and it seems like we are chasing the dosage with her needing more and more every few months.
Is there a specific blood test that can be run to help determine whether she is having a conversion problem? I would think a history of the Free's and dosage history may tell that tale. But with the lack of history of the FT3 & FT4 up to this point that is not possible.
As far as I know the only way to try and determine if conversion is adequate is to look at the relative position within the ranges for the FT4 and FT3 test results. If the FT4 is midrange or higher and the FT3 is in the lower end of the range, that is indicative of inadequate conversion and the need for supplementation with a med containing T3. From everything I read, it is not unusual for a hypo patient taking significant dosages of T4 meds to find that their conversion is inadequate. That is why many patients report doing better on Armour or the like, without really understanding that it is the lack of conversion and a low FT3 level that was really their problem.
Although it won't directly relate to FT3, what was your wife's Total T3, and reference range?
I found the p ost for the last lab results. This was BEFORE her last upped dosage to 112 mcg of Levo.
Your response to the following post was that you thought she was converting OK but it was a bit harder to tell since it was a total T3 and not a free T3.
Here is the entire post from January. along with lab results and reference ranges.
Well after a constant pleading, and prodding and phone calls etc my wife's Dr. finally got additional blood tests done.
My wife is currently taking 100mcg of Levo. She takes the Levo at night before bed. She also takes 2,000 IU of Vitimin D and multi vitamins daily in the morning. I believe she also is taking a magnesium pill in the morning as well.
My wife's symptoms are getting relieved. However she still has low libido and can not lose more than a few pounds (like 5 or less) or so no matter what she does. Even walking 3 miles a day in the morning AND 4 miles a day in the afternoon (7 miles per day total) AND cutting back on eating for weeks. I've also read here that until the medication dosage is not optimum, the ability to lose weight is nearly impossible. This certainly has been my wife's experience. She has also gone from being very fatigued and tired needing 12 hours of sleep to feel remotely rested to needing about 9 hours. She also no longer needs to sleep with socks on and the electric blanket turned on all night. So there is improvement.
I'm still extremely upset because we demanded that we get FREE T3 and FREE T4. And we got the labs back yesterday and we find out they tested Free T4 but TOTAL T3. From what I've read here "total" testing is virtually worthless and tells you almost nothing. Why the heck they did this is beyond me but I'm so frustrated with this that my head is going to explode!
Anyway here are the lab results:
TSH = 2.23 (0.36 - 4.57) UI/ml
TOTAL T3 = 1.39 (0.70 - 1.70) ng/ml
FREE T4 = 1.08 (0.75 - 1.54) ng/dl
Vit D = 37 (30 - 80) ng/ml
Vit B12 = 527 (230 - 1,050) pg/ml
Calcium = 9.3 (8.4 - 10.4) mg/dl
The Dr. suggested that my wife increase the Levo from 100 mcg to 112 mcg. At her next refill of the levo.
What do you folks think of this recommendation? In the last 6 or 8 months she went from 60 mcg (raised from 50 mcg the year before), to 85 mcg and currently at 100 mcg. And now recommending 112 mcg.
I've read hear that with T4 therepy alone, the TSH should be brought down to below 1.0. (my wifes is at 2.23) I'm wondering if additional T4 via levo will actually achieve this. I don't think my wife's FT4 are in the upper 1/3 of the range although she is getting close. I'm wondering if she should go to Armor or add small amount of a synthetic T3 med. But without the free T3 test it is hard to know. Is "super dosing" T4 any benefit than just adding a small amount of T3? Are we not really after FT3 in the end anyhow? Can't this be done by either converting T4 or just simply adding T3? Isn't "super dosing" an indication of conversion problem that would also be consistent with adding a oral T3 component?
This was the same Dr. who refused to test for the Hashimoto's antibody's. Stating that "it doesn't really matter".
However isn't the history of ever increasing dosage of Levo and the fact that Hashi's is the #1 reason for Hypothyroid reason enough? This is maddening.
redheadedausie thought that my wife could still be Vit D deficient. Does that make sense?
Again back to seasonal change. With the sun starting to come out and getting sun on the skin this usually should help the Vit D levels. Yet she is feeling more tired as spring rolls in rather than more energetic.
Her Vit B12 was also below the half way point in the reference range. What effect does Vit B12 have?
As I expected it is hard to conclude anything from the Total T3 result. I do believe that improved symptoms with increased amounts of T4 meds indicates the likelihood of Hashi's. Hashi's is the most common cause of hypothyroidism anyway, so the probability is pretty good that is the cause. Confirming it with testing would only help explain the increasing need for medication.
As long as she has symptoms, it's clear that she needs something more. Most likely she needs some T3 added into her meds. Inadequate conversion of T4 to T3 is something that happens frequently when a patient is taking significant amounts of T4 meds. Of course this needs to be confirmed by a FT3 test, as you already know. I expect that additional Vitamin D will also be beneficial. If she hasn't been tested for iron/ferritin, that would be a good idea as well. Hypo patients are frequently iron deficient. Low levels of Iron, zinc, and selenium reportedly help conversion of T4 to T3.
You asked about B12. After looking around the web, this is a listing of the symptoms of B12 deficiency. Not saying your wife has this problem, just trying to answer your question.
A deficiency of vitamin B12 can lead to vitamin B12 deficiency anemia. A mild deficiency may cause only mild, if any, symptoms. But as the anemia worsens it may causes symptoms such as:
* weakness, tiredness or light-headedness
* rapid heartbeat and breathing
* pale skin
* sore tongue
* easy bruising or bleeding, including bleeding gums
* stomach upset and weight loss
* diarrhea or constipation
If the deficiency is not corrected, it can damage the nerve cells. If this happens, vitamin B12 deficiency effects may include:
* tingling or numbness in fingers and toes
* difficulty walking
* mood changes or depression
* memory loss, disorientation, and dementia
Mainly it all boils down to the likelihood that your wife's FT3 level is too low in the range and she needs to supplement her meds with a source of T3. Even if you are able at last to get the FT3 test done, I wonder if you are going to be able to get the doctor to prescribe meds with T3, if the test shows to be in the so-called "normal" range. When your wife gives the letter to the doctor, maybe she should ask if the doctor will consider adding T3 meds if her FT3 is in the lower half of the range. If not, then you will have another battle on your hands.
In the labs you posted above, your wife's FT4 is quite low; would be interesting to see whether or not it's come up with the increase in medication. Also you MUST have a Free T3.
Her vitamin D is very low; and while her B12 is about midrange, some of us need to be higher than that to feel well. I take B12 shots weekly to keep my levels up and if I drop below 700-800, I feel like dog doo........
Has your wife ever tried taking her levo during the day? Has she tried anything other than generic levo? Like synthroid, Tirosint, etc.
It is interesting to hear some opinion that adding a T3 component may be in order.
I am a bit concerned about making this change as I've read here how many women/people have had difficulty getting the balance right and going through the transition from a straight T4 to a natural dissected or combo drug. I know she tolerates the T4 med alone well.
At what dosage level of straight T4 would it make sense to start adding a T3 component if it is a conversion problem one way would be to just "over" dose T4 to obtain the converted T3 that is needed. That seems to be a waste to me. It would seem to make more sense to add some T3 in to help make up for the poor conversion. My wife is currently taking 112 mcgs of the straight T4. I do not believe that is an abnormally high dosage rate but maybe it is. I think I know other women who are on like 300mcgs.
I can't really say about the exact drug manufacturer. It is some form of generic T4 med. Most likely the cheapest thing the HMO can prescribe.
If she would switch from straight T4 to a combo drug. What would you recommend as a starting point? Isn't there now a new liquid capsule drug that is also a combo drug? How would we know how to adjust the dosage from a straight solid T4 to a better absorbing liquid combo drug?
She has tried taking the T4 in the morning. But waiting to eat and take other meds she needs for 2 hours or whatever is a pain with her work schedule etc. So she finds it better or at least more convenient to take it at night.
Other than shots how else can she improve her B12 level?
Regarding making a switch to substitute some T3 for T4, I think the problems you mentioned were probably due to lack of understanding and poor direction as to how to make the change. I have heard from members that they were told to just stop taking T4 and go to Armour, or something similar. I don't think it is all that difficult. One grain of an NDT med is roughly the equivalent of 75 mcg of T4; however, it is best to transition by substituting only a portion at a time. The reason is that the half life of T3 is less than a day, compared to T4 at about 7 days. So T3 builds up faster and has a quicker effect than T4. I think the sure way would be to make the change by adding about a quarter grain of NDT at a time and reducing about 20 mcg of T4. You could keep doing this every week until reaching the target amount of NDT. Yes, this is pretty cautious, but at this point you want to be safe and sure.
As far as when to take the meds, yes, it is frequently recommended to wait for at least an hour to eat or drink. This allows for maximum absorption. The other option is to just take the meds and go about your normal routine. This might result in somewhat less absorption of the meds, and a need for a slightly higher dose, but to me, convenience and consistency are the most important things. Personally I haven't found this to be a problem
I think the new liquid med in capsule form you mentioned is Tirosint. Tirosint is T4 without any filler material like found in the tablets of T4.
Regarding B12, it is readily available over-the -counter as Vitamin B12 tablets. No experience with it, but supposedly will help increase her levels if needed.
You shouldn't even consider adding a T3 med, unless you know what her actual levels are. If FT4 is high, and FT3 is very low, one would consider that there's a conversion issue. If you decide to add a T3 med, start at a very low dosage and work up, unless you are going to try a dessicated, then follow gimel's instructions. I take 5 mcg T3, along with my T4 med, but I take it later in the morning because it doesn't last very long.
I'm on the Tirosint that gimel mentioned. It's a gelcap, so does not have the fillers/binders that pills have and it's absorbed much better (at least I find that to be true). I agree with gimel that convenience and consistency are more important. I get up at 3:30 am, take my Tirosint, feed the dogs, turn on the coffee pot, then get into the shower; by the time those things are done, at least 30 minutes has gone by, so I have my coffee while I finish getting ready for work. By the time I'm ready, at least an hour has gone by, so I take my blood pressure medication and eat (if I'm going to).
The only thing I wait any length of time to take, is calcium and other vitamins/minerals, which should be separated from thyroid med by at least 4 hours. If you wife takes vitamins/minerals maybe she wife could take them to work with her and take them with her lunch? I use a "pill minder", which I load once/week. It's much easier than carrying around a bunch of bottles of pills.
If you want to try supplementing your wife's B12, opt for a liquid or sublingual type, which will be absorbed much better than pills. I have perncious anemia, which is why I have to do the shots.
My wife takes her T4 at night. So then she can take all her other supplements in the morning.
I put up my best arguments for my wife to get blood test again and the need for this time to get BOTH free's done. We must know where her free T3 is and help determine if she has a conversion problem and maybe the need to add a T3 med in the morning. Which will throw her vitamin schedule off. maybe she could take them at supper time???
What is really bothering me most right now is that my wife is complaining she is tired, complaining she can't lose weight etc. But then I'm unable to convince her to get blood drawn to see what's going on. VERY frustrating. It's like she doesn't even want to feel better. It makes no sense to me.
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