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Help on what to do next
Hi! I have had thyroid issues since 2016. Always had elevated TSH with normal ft4. When my TSH get above 9, I also have a spike in wbc, specifically lymphocytes. This has occurred throughout numerous tests. In January I went for routine blood test and my TSH was 9.68 (range 0.4-4.5) and normal ft4, with elevated wbc, specifically lymphocytes. We increased my levothyroxine to 125mcg. I went back last week and my TSH is at 11.39 (range 0.4-4.5), normal ft4 and same elevated wbc. Any ideas on what could be causing this? I want to advocate for myself but want to know what to ask for/talk about with my doctor. Thanks in advance!
COMMUNITY LEADER
What's the exact result of your FT4, along with its reference range? It's beginning to sound like you could have a conversion issue, but that depends on your actual FT4 level, since it can be within the "normal" range and still not be high enough for you.
Vitamin B-12 deficiency can cause a lot of symptoms that can resemble some of those associated with thyroid. As with most tests, the range can vary from lab to lab, yeah - many have a range of 200 - 900 or 1100. Again, B-12 needs to be at the top of its range, so even if your result is in the "normal" range, it's not enough for you.
Vitamin D of 16 is way too low. That needs to be 50-60.
You need to start supplementing, both B-12 and D to bring your levels up. Get a methyl B-12 as that's the form the body needs. Get a chewable, sublingual, or liquid, as they're more easily absorbed. Make sure you take it every day. You could start out with around 2000 IU/day of Vitamin D, then retest in a couple of months to see if your level is coming up.
You'll need to talk to your doctor about ordering Free T3 and Free T4 - every time you have a TSH test, since TSH doesn't necessarily correlate with actual hormone levels. Also ask your doctor about testing Ferritin. Ferritin is the iron storage hormone, so that will tell you whether or not you have adequate iron stores in your body.
Vitamin B-12 deficiency can cause a lot of symptoms that can resemble some of those associated with thyroid. As with most tests, the range can vary from lab to lab, yeah - many have a range of 200 - 900 or 1100. Again, B-12 needs to be at the top of its range, so even if your result is in the "normal" range, it's not enough for you.
Vitamin D of 16 is way too low. That needs to be 50-60.
You need to start supplementing, both B-12 and D to bring your levels up. Get a methyl B-12 as that's the form the body needs. Get a chewable, sublingual, or liquid, as they're more easily absorbed. Make sure you take it every day. You could start out with around 2000 IU/day of Vitamin D, then retest in a couple of months to see if your level is coming up.
You'll need to talk to your doctor about ordering Free T3 and Free T4 - every time you have a TSH test, since TSH doesn't necessarily correlate with actual hormone levels. Also ask your doctor about testing Ferritin. Ferritin is the iron storage hormone, so that will tell you whether or not you have adequate iron stores in your body.
2 Comments
I believe my most recent ft4 was 1.3. I believe the range is 0.8-1.8 but I don’t have the results in front of me. I actually supplement both b12 and vit D. I’m at 5000 IU daily for vitamin D and then I don’t remember the dosage for b12. I just spoke with my doctor and we upped my levothyroxine and talked about switching to name brand sythroid. And then I’m also getting antibodies tested to knock out hashimotos due to other symptoms. Thanks so much! I will be sure the mention ferritin and ft3.
With that range, your FT4 would be right at the 50% level, at which most people feel comfortable. However, just because you have good FT4, doesn’t mean you have adequate FT3, since FT4 much be converted to FT3 prior to use.
You really need to try to convince your doctor to order FT3 every time you have TSH and FT4. I’m not sure increasing your Levo is going to help, if you aren’t converting adequately. Yes, it will increase your FT4 level, but if you don’t convert properly, it won’t help you feel better. That said, it’s a start and if it doesn’t help alleviate symptoms, perhaps you can convince the doctor to add a T3 medication.
So - you’re supplementing with 5000 IU vitamin D and your level is still at 16? Or was that before you supplemented? Some doctors will prescribe mega-doses if one’s vitamin D doesn’t increase. You should still try to get a B-12 test. Supplementing doesn’t always work… I have to inject my B-12 because I don’t absorb it in my gut. That’s why it’s important to test and make sure you’re taking the proper form.
As for switching to Synthroid - that may (or may not) work for you. I was started out on Synthroid and didn’t do well on it. I also didn’t do well on generic Levo. I take Levoxyl, which is another brand name that most people do well on. It’s always worth trying something different if you aren’t feeling well on one med. Fortunately, we have others to choose from.
It’s good that the doctor has ordered antibody testing to rule out (or confirm) Hashimoto’s. Hashimoto’s is the # 1 cause of hypothyroidism in the developed world, so I’d be surprised if you don’t have it.
You really need to try to convince your doctor to order FT3 every time you have TSH and FT4. I’m not sure increasing your Levo is going to help, if you aren’t converting adequately. Yes, it will increase your FT4 level, but if you don’t convert properly, it won’t help you feel better. That said, it’s a start and if it doesn’t help alleviate symptoms, perhaps you can convince the doctor to add a T3 medication.
So - you’re supplementing with 5000 IU vitamin D and your level is still at 16? Or was that before you supplemented? Some doctors will prescribe mega-doses if one’s vitamin D doesn’t increase. You should still try to get a B-12 test. Supplementing doesn’t always work… I have to inject my B-12 because I don’t absorb it in my gut. That’s why it’s important to test and make sure you’re taking the proper form.
As for switching to Synthroid - that may (or may not) work for you. I was started out on Synthroid and didn’t do well on it. I also didn’t do well on generic Levo. I take Levoxyl, which is another brand name that most people do well on. It’s always worth trying something different if you aren’t feeling well on one med. Fortunately, we have others to choose from.
It’s good that the doctor has ordered antibody testing to rule out (or confirm) Hashimoto’s. Hashimoto’s is the # 1 cause of hypothyroidism in the developed world, so I’d be surprised if you don’t have it.
COMMUNITY LEADER
What’s the reference range for the FT4? Ranges vary from lab to lab so have to come from your own reports. Have you had an FT3 (Free T3) test done? Free T3 is the hormone our individual cells actually use. FT4 is considered a storage hormone that must be converted to FT3 prior to use. Some of us have problems converting FT4 to FT3 and have to add a source of T3 to our daily regimen. This can be in the form of a T3, such as Cytomel (Liothyronine) or a T4/T3 combo, such as Armour thyroid.
Have you had Vitamin B-12 and Ferritin tested? Both of those, along with Vitamin D are necessary for proper metabolism of thyroid hormones. If you have “non-existent” levels of vitamin D, that could be one of your problems, since vitamin D deficiency can also cause other symptoms.
For now, we need to know: the Range for your FT4
Have you had an FT3 test
Have had vitamin B-12 and ferritin tests
If you’ve had any of these tests, please post results. Vitamin D needs to be at least 50, B-12 needs to be at the top of its range do avoid symptoms of deficiency and ferritin should be around 100.
Have you had Vitamin B-12 and Ferritin tested? Both of those, along with Vitamin D are necessary for proper metabolism of thyroid hormones. If you have “non-existent” levels of vitamin D, that could be one of your problems, since vitamin D deficiency can also cause other symptoms.
For now, we need to know: the Range for your FT4
Have you had an FT3 test
Have had vitamin B-12 and ferritin tests
If you’ve had any of these tests, please post results. Vitamin D needs to be at least 50, B-12 needs to be at the top of its range do avoid symptoms of deficiency and ferritin should be around 100.
2 Comments
I’ve had b-12. I am below the range but I can’t seem to find the range I believe it’s 200-?. But I am below 200 sometimes also almost nonexistent. I’ve never been tested for t3, ft3, or ferritin
Oh and vit D range is 30-100. The last I was tested I was at 16
I should also add in I’ve had almost nonexistent levels of vitamin D the entire 6 years as well!
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