My TSH was around 2.30 on Levothyroxine

Question

Hi everyone! Needing help. My TSH was around 2.30 on Levothyroxine but I felt terrible. Asked to be switched to T3 Liothyronine about 3 weeks ago. Have not been well. Extremely tired. Losing my hair to an extreme now for last 4 yrs. I am going bald. Dr. Rechecked TSH yesterday and it came back at 11.0. I nearly fainted. What does this mean exactly? On 5 mcg 2x per day. He is upping my Liothyronine. Was I not converting the T4 all those years and it just accumulated in my body somewhere? I do have methylation issues due to MTHFR A1298C AND C677T genotypes. I just never had levels this high so I was shocked. Any thoughts on what’s going on? Thanks in advance.

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Connie 3 years 20 Answers 518 views 0

Answers ( 20 )

  1. how is your iron and b12 level? I am taking iron and b12 and siberian ginseng helps for energy and stamina and hair.

  2. It sounds like you aren’t on an equivalent amount of t3. The conversion is 50mcg levothyroxine=25mcg t3. But most doctors read those terrible conversion charts that are more like 100mcg levothyroxine=25mcg t3. You, and millions of other patients can tell them that conversion is wrong!

  3. What kind of doctor are you seeing?

  4. Tired Thyroid is one of the worse spreaders of misinformation on Facebook. Note that the authors use personal experience that completely contradicts published studies and the experience of every other thyroid support group on Facebook.
    Levothyroxine causes hair loss, it even says so on the inserts for every levothyroxine product.

    And this study completely contradicts the information in those two articles.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3205882/

  5. I never felt well without a small dose of liothyronine in addition to t4 meds currently Tirosint. I feel best at TSH of 1. Recently levo lowered because I was under 1. I go to endo regularly for bloodwork because I swing so wildly. I think that’s important in staying optimal

  6. Is it a generic? Eight years ago, when I was switched (by accident) to a generic (by the pharmacy b/c the doc forgot to check only brand name) of Levoxyl (T4), that somehow I was not absorbing well so I went from 100 mcg to 150 mcg. A year later I figured out what happened when I got a new prescription. My endocrinologist back then only liked brand names b/c he said that generic ones, even though they may be the same the other ingredients are not, and they are not absorbed the same way. He also added cytomel (T3) because I was always so exhausted and complaining to him about it. I also had low iron and low ferritin and losing so much hair πŸ™

  7. It wasn’t until I switched endocrinologists 4 years ago (because after 10 years I finally got tired that the previous one, who was never listening to me or answering my questions and he only checked TSH). My new endocrinologist switched me to Armour that I started to feel so much better, but she had to adjust the dosage. Armour is not synthetic and it has T3 in it. She checks everything, not only THS, also T3 and T4, because THS is not always reliable according to her (b/c it is not a hormone, it is what the brain reads) also she also checks antibodies, iron, ferritin, vit. D. She is a UVA professor of endocrinology. My anemia was finally resolved going gluten free about 4 years ago, because I also found out that I have celiac, which causes problems absorption of nutrients in general. My celiac causes the iron anemia and constipation, and low vit. D. And then I stopped losing so much hair, as my iron got better πŸ™‚ Low iron and low ferritin can make you lose hair, and it also makes you feel more exhausted πŸ˜‰

  8. I have MTHFR, like you, with the 677 and 1298 mutations. This has to do this a gene mutation, so we do not absorb or convert well folate. I take a B12 supplement with folate too; do you? I do not do well with methylated forms of B12 (because they make me feel tired but hyper at the same time, depressed, insomnia, etc); so I take a hydroxy form (a precursor that the body converts into methylcobalamin by itself). I also eat plenty of foods with natural folate, such as asparagus (1 cup has 268 mcg) , artichokes (1 cup = 150 mcg); beans (kidney, black, etc) 109 mcg depending on type; broccoli (57 mcg/ 1 cup); green beans (40 mcg); lettuce (20 mcg). This explains why I feel better eating greens and beans with folate (besides meat and fish for iron) πŸ™‚ http://nutritiondata.self.com/

  9. Gisela would you mind sharing the name of the b12/iron supplement you buy? And source? I currently take Seeking Health Optimal Multivitamin chewable and then the Methylcobalamin sublingual.

  10. I cannot take Methylcobalamin B12 because I do not do well with it. When taking any methylated B12, even the Seeking Health one too at first prescribed for MTHFR, I was feeling awful, hyper, down, irritable, with insomnia, speaking too fast, tired, etc., which happens to some people. I did not realize it was the methylated B12 causing these problems until I told the doctor after she prescribed the Methylated for MTHFR, and then noticed that this was the reason I felt so horrible for 1 year or more. Because most B12 vitamins are methylated, so I always check levels carefully now. And their writing is so small to read. My son had the same problem too when we found out he also had MTHFR and celiac last year, and even my husband (who has low B12), but their reaction was not a severe or quickly horrible as mine. When we all switched to Hydroxy B12, we felt more calm and peaceful, less agitated and slept much better πŸ™‚

  11. Seeking Health also has a Hydroxo B12 (not methylated) and a Hydroxo B12 with Folinic Acid that I’ve taken in the past and my husband and son still take, both sublingual. But now I take the Biotics Research B12-2000 because it has B6 besides Folate. With MTHFR we need folate too. I do not take multivitamins anymore because some vitamins are not good to take unless you need them, according to my doctor. I do take vitamin D3-2000 (and my D levels are fine now, since going totally dairy free last year, besides most grains free too, except corn), vitamin C and also Omega-3 for dry eyes πŸ™‚ My doctors says that B12 and D are fine, even if I did not need them

  12. I also take Iron Bisglycinate by Thorne, less constipating than other forms. I do not have iron anemia or low iron anymore or lose so much hair, but I had it for so many years before. I still take iron because my reserves or ferritin is on the low side sometimes, and feel horrible when I have my period. My anemia was resolved 4 years ago when I went gluten free, actually. My son was also diagnosed with celiac after trying to figure out why he had anemia last year, and I switch pediatrician, b/c he would not run the tests… Some doctors still do not realize that since 20 years ago, there is evidence that 15% of celiacs have iron anemia (not B12 deficiency) and constipation (instead of diarrhea), like me and my son… That’s why some people are not diagnosed until they are adults, like me, at age 40…

  13. Ok thank you Gisela. I so appreciate your help!

  14. I hope that you feel better soon πŸ™‚ Low ferritin and low vitamin D are common with underactive thyroid and they also make you feel exhausted, but it sounds like your 11 TSH is the cause. When I was diagnosed 16 years ago and had a TSH of 16, I felt horrible, like sleep walking all day, so exhausted, and losing so much hair. Sometimes it takes a while for things to go back to normal range when you start to take thyroid medication and/or iron, but you should feel a difference. When I changed endocrinologists 4 years ago, and she switched me to Armour (b/c it has more T3 that I needed), it actually took a year to adjust to this new medication (plus my weight had changed in the last 4 years going GF, losing 110 lb total) and it took 1 year get my levels under control again, so I had appointments every 3 months to recheck the levels of T3 and T4 and figure if the new dosage needed adjustments. Once they were Ok, I started to go every 6 months or 1 year. I feel better knowing that she checks everything, the T4 plus T3 and not only TSH, and she does not mine seeing me more often if I need it πŸ™‚ Now that I am older, in my 40’s, I go for second opinions and even third ones, if necessary; or switch doctors, if they do not listen or do their job; because I had some that did mistakes in the past… or they do not do well their job or they are not up do date in new advanced in medicine… or do not run tests, even though my insurance covers them… I suffered enough, in my opinion. I also had undiagnosed TOS for decades, even though I complained about the pain all the time. So I have to be my own advocate! πŸ˜‰ Groups like this help us to see that there are also so many people like us, with similar problems, also learning and looking for solutions to get better, and kind and understanding about what we are going through. Hang in there πŸ™‚

  15. I forgot to say to be careful eating or drinking grapefruit juice and also certain medications that do allow you to absorb properly your thyroid medication. I was on two pain/sleep meds for a while (8 years ago, for TOS and surgeries) that combined caused absorption problems for supplements and iron… and even the doctor did not realize it, until I google it online plus talked/asked to another doctor (b/c it was not on the meds or pharmacy info list or pamphlet)

  16. Ok, I don’t do grapefruit and I take my meds separately. But thanks for reminding me!

  17. I hope and pray that you get better soon πŸ™‚ Take care

  18. Thank you!

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