Thyroid Disorders Community
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Avatar universal

Is there life after TT??

We discovered my wife had Hashimoto's 6 years ago. She had nodules all over her Thyroid gland. She had her Thyroid gland entirely removed, successful surgery. Everything went well, but she has then suffered a myriad of symptoms, just like a hipothyroid patient!! She tells me she suffers from extreme exhaustion, lack of energy, incapable of remembering anything, of concentrating, she has gained a LOT of weight, the list is long.

I have been reading and investigating, but almost everyone talks about CANCER and Hashimoto, or just cancer, but I would like to hear someone like my wife, who had the gland removed due to Hashimoto and then what happened??

My wife takes levothyroxine, in different amounts, sometimes feels hyperthyroid, sometimes hipothyroid, but in general her symptoms are exactly the same as described in all literature as being hypothyroidism.

Please someone with similar history tell me your story, or if there are any doctors?? This has almost destroyed our marriage. According to her Doctor she should be fine, according to her father (Neurosurgeon) she shouldbe fine, according to a Psychiatrist we visited for therapy she should be fine... Should she be fine? Or we are just ignorant and putting her thru more hell??
24 Responses
Avatar universal
I have not had to have a TT, but I have been a long time hypothyroid patient.  Like myself, too many hypo patients are not adequately tested and treated.  The biggest obstacle to feeling well again is finding a good thyroid doctor.  By that I mean one that will treat clinically by testing and adjusting Free t3 and free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief has to be all important, not just test results.  You can get some good insight from this link written by a good thyroid doctor.


If you will please post her thyroid related test results and reference ranges shown on the lab report, I would be glad to give you an assessment of her status.  
Avatar universal
My wife had the free t3 and free t4 done last friday and we will have the results tomorrow, I will post them inmediately. Thanks for your response.
Avatar universal
Here are the tests done last Friday:

Free T3 1.6 pg/ml, ref. values: 1.8 - 4.7
Free T4 1.76 ng/ml, ref. values: 0.93 - 1.7

I can see the tests are off... but what does it mean? Is that Hipothyroidism or Hyperthyroidism?

Thank you very much gimel!!
Avatar universal
Your wife's Free T4 is above the range, and her Free T3 is below the range.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate well.  That means she is hypothyroid.  Even though her T4 med is driving her Free T4 above the range, her body is not adequately converting the T4 to T3.  This is a very common problem with hypothyroid patients.  So she is going to have to convince her doctor to reduce her T4 med and add a source of T3.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results and especially not TSH levels.  You can get some good insight from this link written by a good thyroid doctor.


Since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, your wife needs to get those tested also.  D needs to be about 60,  B12 in the upper end of its range and ferritin about 70 for women.  Low levels can cause symptoms of their own.  Low D and ferritin can affect metabolism of thyroid hormone.  Low ferritin affects conversion of T4 to T3 and may be a factor in her poor conversion.  

So your wife needs to discuss this with the doctor and request a reduction in her T4 med and the addition of some T3 med.  In addition she needs to be tested for D, B12 and ferritin.  She also needs to find out if the doctor is going to be willing to treat clinically as described.  If not, then she will need to find a good thyroid doctor that will do so.  

Since her father is a doctor, I am sure there is the possibility that he may conclude this is all just "internet chatter", but I can assure you that there is scientific evidence behind everything you see on this Forum and if necessary I would be glad to provide links to scientific studies and papers written by doctors, all of which support what I have said.  

Avatar universal
I belirvr 100% of what you are telling me. The biggest challenge is that we live in Honduras where doctors are not up-to-date with other treatments and other medicines.

I will have her test her Vitamin D, B12 and ferritin.

For instance you can not get Nature Throid in Honduras at all. I will see what we can do to help her with her symptoms.
Avatar universal
Believe me there are lots of doctors here who do not adequately diagnose and treat hypo patients either.  It is a world wide problem.  But all it take is one good thyroid doctor for her.  You may be able to present information to her current doctor and push him enough to convince him to treat clinically as described.  If he refuses, then you will just have to try another doctor.  

Can you get T3 in Honduras?  Commonly know as Cytomel, or its generic.  If not, then another option would be to get a prescription and order T3 meds from sources in other countries.  I know of a couple, if you need them.
Avatar universal
I sent my wife to do the Vit D, B12 and ferritin lab tests, we will make an appointment with her doctor asap, and I am working for a pharmaceutical company that distributes medicines, I am currently investigating if the liothyronine (Cytomel) is available in the country thru Abbott or other companies that manufacture it. Thank you very much. I will post the results as soon as I have them. My wife cried when I told her she is right insisting she is hypothyroid, none of us believed her...

Hopefully that product is available in Honduras...

Thanks again, you are an angel!
Avatar universal
We can not get Cytomel (Tiromel) in Honduras and no other similar medicine here. It has been impossible for us to find a way to buy it. On top of that my wife seems ot be having a worst time, I dont know if it had to do with the fact that now I agree with her on her symptoms or it is just real. She is a lot worse on her symptoms.

IIs there a way to buy Tiromel (I was told by Abbott that it is the name of Cytomel in Mexico, but they do not have it registered in Honduras... Now we know a lot more but can't do anything about it... depressing to live in a country like this!!
Avatar universal
Do you think you could get your wife's doctor to write a prescription for liothyronine?  If so, I at least know of 2 sources from which you could purchase in Canada.  

Also, did you get the Vitamin D, B12 and ferritin tests done?  If so, please post results and reference ranges shown on the lab report.  
Avatar universal
Unfortunately mi wife did not want to have the Vit D, Vit B12 and Ferritine tests done, she says they are too expensive and feels hopeless of a cure or treatment. I did find out Vit D tests are too expensive and rare to find a lab that performs the test. Will try to make her take those tests and post the results.

I will consult her Doctor and have him write a Citomel prescription.

Thank you again!!!!
Avatar universal
How much T4 med is your wife taking daily?

Hypothyroid patients are so frequently low in the ranges for Vitamin D, B12 and ferritin, I highly recommend that she consider supplementing for all 3 to raise her levels, while waiting to get the T3 medication from Canada.  Of course it would be better to test first, but the frequency of occurrence is so high that I would not be concerned about getting started on supplements.

There is no reason she should feel that an effective treatment is impossible for her.  We deal with similar situations for members here every day and after they get their Free T3 to the upper part of its range, and Free T4 at the middle of its range, at minimum, Vitamin D up to 55-60, B12 in the upper end of its range, and ferritin about 70 minimum. they feel much better.  So keep encouraging her to pursue all of this and we will be glad to help any way possible.  
Avatar universal
i am trying my best to help her.

Here are the results and ranges:

Vitamin D: 1.4 ng/ml, insufficient: 12 - 20, sufficient: 20.1 - 160

Vitamin B12: 313 pg/ml, normal values: 157 - 1059 pg/ml

Ferritine: 7.19 ng/ml, normal valuie for women 17-60 yrs old 13 - 150 ng/ml

T3 Free: 1.6 pg/ml normal: 1.8 - 4.7

T4 Free: 1.76 ng/ml, normal: 0.93 - 1.7

Blood test HGB: 10.3 g/dl

So, I already got a prescription of Cytomel, It is a Dcotor in Honduras, I hope it is not a problem? Please let me know if I should send it by mail or Fedex to which address in order to get the Cytomel as soon as possible... my kids and I need her back... if you know what I mean.
Avatar universal
I don{t know what type of those should it be and the Doctor does not know either... what do you rrecommend? Can you recommend?
Avatar universal
Wow.  No wonder she feels so bad.  Not only too low in Free T3, but also Vitamin D, B12 and ferritin.  She needs to supplement with about 4000 IU of D3 daily, along with about 1000 mcg of B12, and about 75 mg of iron in the form of ferrous fumarate, or ferrous sulfate, or ferrous bisglycinate.  Also, should take about 400-500 mg of magnesium in some form other than magnesium oxide.  I would also suggest that she take about 500 mg of Vitamin C.  In each case I would not start on the whole amount all at once.  Instead, I would split it in half or thirds and gradually increase over the next 3-4 weeks.  

I am sending you a PM with info on where to order the Cytomel.  To access, just click on your name and then from your personal page, click on messages.  
Avatar universal
I have hypo throid / for years / am on levothroxine / just found out my antibodies were checked in 2011/ 5900 & again in 2012 / 5400 / why have I not been re attested ( I heard it will never go down once you are positive). Now I wonder could I have other tissue damage or do the anti bodies just attack the throid!!! I had a tkr in 2012 / never healed completely & may need a revision but am being tested to see if I could have auto immune diseases??? I am angry that I haven't been retested & when will this count go down!  I am so upset with my knee??? Anyone have any suggestions or am I just being paranoid???  Help
Avatar universal
Once you have been confirmed as having the antibodies associated with Hashi's, there is no real reason to test again.  Those antibodies are produced by the autoimmune system specifically for the job of destroying your thyroid gland, not other tissues.    There are a few things that will make the antibodies go down slightly, but that doesn't stop the destruction of your thyroid gland.  

The tests that you need on an ongoing basis are for the biologically active thyroid hormones, Free T3 and Free T4, which are not the same tests as Total T3 and Total T4.  With knowledge of your hypo symptoms and your Free T4 and free T3 level a good thyroid doctor will treat clinically, by testing and adjusting Free T4 and Free T3 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  

Also, hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  So you should make sure those are tested as well.  D needs to be about 55-60, B12 in the very upper end of its range, and ferritin should bee about 70 minimum.

If you will please tell us about any symptoms you have, and  post your thyroid related test results and reference ranges we will be better able to assess your status.  
Avatar universal
Hi. As an update, my wife and I were able to get the medicine purchased and shipped... Now it would be a miracle to receive it since Universal Drugstore does not provide tracking number or even the certainty that it will arrive... We will wait a little longer and see if it arrives.

On the other hand, my mom takes Levotiroxin (Eutirox 100mg per day) because she is also hypo, but her gland has not been removed. I advised based on what you recommended that she has some tests made and here are the results, she is 80 years old by the way.

Free T3 = 320 pg/ml (range 260 - 480)
Free T4 = 2.6 ng/dl (range 0.8 - 2.4) - This is very high above the max ref level
Vit B12 = 466 pg/ml (range 174 - 878 pg/ml)
Ferritine = 81.90 ng/ml (range 6.00 - 159.00)
Vitamin D = 28.98 ng/ml (range less than or equal to 20 ng/ml) * This is also very high....

What can you tell about her results?

Thank you again for being a saviour angel!!
Avatar universal
Your mom's test results show that she also is too low in the range for Free T3.  It should be in the upper half of the range, or as necessary to relieve any hypo symptoms she has.  Her Free T4 is too high, so she needs to her T4 med and take some T3.  Her B12 should be in the upper end of its range, say about 750.  Ferritin is adequate.  I don't understand the Vitamin D range you listed.  D should be about 55-60. The range shown for your wife's Vitamin d test was 20 - 160.  Please clarify.
Avatar universal
My mom had her tests done in a different city/lab. These are the resuts I got from the lab she went to:

Her test indicated 28.98 ng/ml, and the range according to the lab is lower than or equal to 20 ng/ml. I will call the lab to clarify now...
Avatar universal
In fact they made a mistake. The range should be the same as for my wife since they use the same method/reactives. The range is: insufficient: 12 - 20, sufficient: 20.1 - 160 so she is 28.98 is sufficient in the lower range... do you recommend she takes Vitamin D supplement?

Also, I forgot to ask, my wife will start her Cytomel as soon as it arrives, should she discontinue the supplemtns she is currently taken? (the ones you recommended? Vit D, Vit B12, ferrous sulfate, magnesium citrate and Vit C?) Or do you recommend she continues to take them for a longer period until Cytomel levels are right?

Avatar universal
Vitamin D should be about 55-60, so she should supplement with D3 to optimize.  That will likely require about 3-4000 IU daily.  She should continue with the other supplements as needed to optimize those levels as well.  

What dosage of Cytomel will you be getting?
Avatar universal
For economic and transport reasons we ordered 90 pills of 25mcg. Start her on half the dose (12.5mcg) and see how she feels, if needed we will increase to 25mcg daily and evaluate. How long do you think will be needed to evaluate the 12.5 mcg daily?
Avatar universal
It is best to be cautious.  I would split the 25 mcg into quarters and start with taking only one of the quarters each morning, for a week. Then if all is well  you could add the second quarter in the early afternoon.  Then I would give that several weeks to get the full effect on serum levels and maybe start to see the effect on symptoms.  

Realize that changes in symptoms tend to lag a bit behind serum levels.  So patience is important.  
Avatar universal
OK. I will do so. We will folow that plan. Thanks again!
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