I need some advice?: Hi, this is my first time... - Thyroid UK

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I need some advice?

borahae profile image
14 Replies

Hi, this is my first time here and I want to ask for some advice.

I’m 19 and from my recent blood test results, I’m diagnosed with hypothyroidism. My doctor prescribed me with oroxine 100mcg. Reading from other posts, I’m wondering if this dosage is too high? (It’s my second day taking it though so I don’t feel any major effects. I just have head pressure, tingling/pins and needles on body, heat flashes and fatigue which have been ongoing before the diagnosis)

Also, I’ve basically been in bed for a week because I’ve been feeling so tired to do anything. My limbs are heavy and I feel dizzy if I stay up too long and feel as if I might faint. I was just wondering if I lying in bed might make it worse, and that I should do some exercise.

And for my next check up, is there any questions I should keep in mind to ask the doctor?

Thank you~

TSH: 4.37 (ref. range: 0.40 - 3.80)

TF4: 15.9 (ref. range: 10.0 - 22.0)

Vit D: 30 (ref. range: 50 - 150)

Fe: 36.5 (ref. range: 7.0 - 26.0)

%Sat: 73 (ref. range: 16 - 45)

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ShootingStars profile image
ShootingStars

Hi lsth. Your full blood tests will tell you if 100 mcg is too high. Full tests are Free T4, Free T3, and TSH. If one of these tests is missing, no complete interpretation of your thyroid can be made. Lab tests are done every 6 weeks and dosage is adjusted at 6 week intervals following the 6 week blood tests until you have the least amount of symptoms. Vitamin levels also need to be tested because they will cause symptoms, too. What is your iron panel or ferritin, B12, folate and vitamin D?

I hope your doctor didn't start you off at 100 mcg? I hope he tarted you on the normal starting dose of 50 mcg, then followed standard prescribing protocol and retested full thyroid tests and determined that you needed 75 mcg. Dosage increases and reductions are made at a maximum of 25 mcg each time. So you were on 50, 75, then increased to 100?

The other important thing in being diagnosed hypothyroid is did your doctor test you for Hashimoto's by testing the two thyroid antibodies that cause Hashimoto's, TPOab and TGab? It is very important for you to know if you have Hashi's or not. If your doctor only tested one of these antibodies, the other one could be positive and you could have Hashimoto's.

Your symptoms could be from being under medicated or over medicated, or from something completely separate. You could have a virus. Laying in bed will not effect your thyroid negatively. If you don't feel well, don't push it. If your doctor has not tested TSH, FT4, FT3 in the last 6 weeks, these should be tested. Thyroid antibodies TPOab and TGab, too. If iron panel or ferritin, B12, folate and vitamin D have not been tested, these need to be tested. Because you are not feeling well and you don't know the exact cause, getting a comprehensive metabolic panel and a complete blood test as a baseline might be helpful, too.

borahae profile image
borahae in reply to ShootingStars

Hi, thank you for replying. So I first started to feel the symptoms last Wednesday. I went to take a blood test on Thursday. Then this Sunday, the doctor prescribed me with oroxine 100mcg. This is my first time being diagnosed with hypothyroidism. I’m also getting an ultrasound for my thyroid tomorrow.

ShootingStars profile image
ShootingStars in reply to borahae

I really hope that I am misunderstanding the situation. I hope you don't mind that I have a lot of questions. :-) The doctor started you out on 100 mcg??? He could really harm you starting you out at DOUBLE the normal starting dose! If he did, this is a very dangerous doctor! What kind of doctor was this that would start someone off at double the starting dose of T4, 100 mccg?

Please tell me that is not what happened. It takes most people multiple months, if not even years to work up to 100 mcg. It took me several years to get up to 100 mcg. I tested every 6 weeks and increased in 12.5 mcg increments as necessary. I also take T3. The correct starting dose is for T4 50 mcg for 6 weeks (although for some reason some UK doctors routinely undermedicate and start people off at 25 mcg and leave them there, then the patient suffers), re-run lab tests at 6 weeks, and depending upon the results, increase meds either 12.5 mcg or 25 mcg. Even a 50 mcg increase should never be given. Starting off at 100 mcg is going to make you very sick and over probably medicated.

The timeline is a bit confusing. You never had any symptoms before last Wednesday? You said above that you've been sick in bed for a week? The doctor ran tests on Thursday and prescribed 100 mcg T4 on Sunday? Which Wednesday, Thursday, and Sunday of which week in February? It's still Sunday where I am right now. How long have you been on 100 mcg? What are all of the lab tests the doctor ran to make his diagnosis, what were your results and the lab ranges for each result?

Do you have visible swelling in your neck, or was the doctor able to feel that your thyroid was enlarged and that's why you're getting an ultrasound? What is most important is correct blood tests to make the right diagnosis and starting out on the right starting dose.

borahae profile image
borahae in reply to ShootingStars

Hi, sorry for the confusion.

I’m from Australia and it is currently Monday afternoon. I’ve always felt fatigue, anxiety etc. but always attributed it to insomnia and bad lifestyle habits. However, on Wednesday night, I started to get full body tingles/pins and needles, head pressure and extreme fatigue. I went to the doctors on Thursday to get a blood test. On Friday and Saturday, I started to feel a bit better (I only had mild tingles). However, on Sunday, when I went to get my results. Th doctor diagnosed me with hypothyroidism and prescribed me oroxine. I took the medication that Sunday afternoon, by night the symptoms started to get worse. This morning (Monday) I took the meds, and by afternoon (now) I’m starting to feel pretty bad again. So I don’t know whether it is because of the med of if thats how it is for people hypothyroidism, as I’ve only taken the medication for two days.

As for the ultrasound, I’m not sure, they just told me to book an appointment.

ShootingStars profile image
ShootingStars in reply to borahae

Thank you for explaining. Maybe I didn't explain it clearly. You are SEVERELY over medicated. 100 mcg is two times what the starting dose of should be and it is making you sick. NO, that is not how it for people with hypothyroidism. If you are prescribed the right dosage, you will feel better. Again, 2x the correct starting dosage should never be prescribed. You should not be taking 100 mcg fresh out of the starting gate! You should only be starting out at 50 mcg. That doctor is making a huge and harmful mistake!

borahae profile image
borahae in reply to ShootingStars

I’ve posted a picture of my results on another post. My vitamin D levels are lower, and I’m currently taking supplements for it. My iron levels are higher than norm, so I’ve stopped taking my iron supplements. My ferritin is of normal range.

ShootingStars profile image
ShootingStars in reply to borahae

I also responded on your other post. If you add you lab results to this post, it would be helpful for other people who want to respond. If you want, you can just type in your results and the lab ranges like a lot of people do.

How low is your D level? This can make you feel very tired and unwell. What dosage of D are you taking? How much iron were you taking that made your iron values go over range? The range for ferritin is huge. Just because you fall somewhere in the normal range doesn't mean your level is where it should be for optimal health, so it could still be too low even if your other iron values are too high. B12 wasn't tested? Pins and needles sensations could be caused by low in range B12.

borahae profile image
borahae in reply to ShootingStars

my D level is 30 (range: 50-150). I’m currently taking 25 mcg as per doctor’s recommendation. As for my iron levels, I’ve been taking 25mcg due to previous iron deficiency. my B12 wasn’t tested.

ShootingStars profile image
ShootingStars in reply to borahae

25 mcg Vitamin D cannot be correct. That would be roughly 83.5 IU (international units), which is nothing when it comes to vitamin D strengths. You have very severe D deficiency and should be taking high doses of D. People with severe deficiency take 5,000 IU or sometimes 10,000 IU per day. Vitamin D is dosed in IU where I am from. The formula to convert 25 mcg to IU is 83.5 IU x 0.3 = 25.05 mcg. If Australia uses mcg measurement for vitamin D, 5,000 IU = 1,500 mcg vitamin D.

Are you sure your iron supplement is 25 mcg? 25 mcg iron is also an odd number for iron, because it is a negligible amount of iron. 25 mcg = 0.025 mg, so it is very, very little. 1,000 mcg = 1 mg. The iron supplement that I take contains 29 mg iron, or 25,000 mcg, which is still a rather low amount for a supplement. Some iron supplements contain 65 mg, on up to 325 mg: is just depends on the form of iron in the supplement.

Your pins and needles symptoms could be from low B12, because that is a common symptom of B12 deficiency. I have never heard of that as a symptom of hypothyroidism, but if you have Hashimoto's, that can cause all kinds of weird muscle symptoms. If you have Hashimoto's and you eat gluten, this causes inflammation, and inflammation causes symptoms.

borahae profile image
borahae in reply to ShootingStars

Hi, sorry, I’m not too familiar with what terms to use. I just checked my vitamin D and what I’m taking is: “Ostelin. Vitamin D3. 1,000 IU”.

As for my iron supplements, its 24 mg.

ShootingStars profile image
ShootingStars in reply to borahae

That's ok. :-) That makes much more sense. Even for maintaining adequate D levels, 1,000 IU is considered low. For severe D deficiency, in order to raise the D level, a whole lot more D must be taken. You could take 1,000 IU for a year, and your D level likely won't budge much. If you took what is normally recommended for D deficiency, you'd actually feel better in a few days to a week, depending upon what the dosage is. At this point, your D is so severely deficient, it will take you a long time to ever get even to the top of the range. For comparison, I was never as deficient as you are, but I was at the very bottom of the range. I took 10,000 IU for the first few days. I felt a huge improvement after just two days. Then I took 5,000 IU every day for awhile, but my D only got to a certain point and still wasn't high enough. Now, in order for me to keep my D at the optimal level, I take one 10,000 IU pill 4 times a week all year around for years. I wear sun protection every day year around because I don't want to have sun damage or skin cancer.

borahae profile image
borahae in reply to ShootingStars

Hi, I’m glad you found a way to optimise your D levels. I think I should look into higher IU vitamin D, thank you for your input! In addition, (sorry for the questions), I looked at my results again and realised that around this time last year (25/02/18) my TSH was 4.22 which is higher than the range (.4-3.8) (and a 0.15 difference to my 4.37 now). But back then, my doctor said no word of it (as I probably felt fine and had no symptoms). then after a few months (18/06/18), my TSH levels became within normal range at 2.59. Is this fluctuation also normal for people with hypothyroidism?

ShootingStars profile image
ShootingStars in reply to borahae

You're welcome! Me too! I was a mess when my D was so low. Yes, fluctuating TSH, a pituitary hormone, and fluctuating thyroid hormones is very common in the beginning as your thyroid is starting to fail. In your previous lab results, when you TSH went up, your FT4 went down, and when your TSH was lower, your FT4 was higher. That's how the hormones work together. Oh, and that doctor didn't test your FT3. T4 converts into T3. T3 is the active hormone, not T4. Both are measure in "free" levels. Without testing FT3, it's unknown as to if you are converting T4 into T3, and if you need T3 supplementation in addition to T4. I take both.

The right thyroid dosage will make you start to feel better within a few days. I felt better on day two of T4, but still needed to add T3. When I first started on meds, I felt even better on day two of adding just 5 mcg T3, but had to add another 5 mcg T3 to feel warmer and wide wake. It took months for my levels to become optimal and then every so often levels drop, symptoms increase and more T4 or T3 needs to be added. The only times I've had a fast heart rate and heart palpitations was when I was slightly over medicated and my FT3 got to over 3/4 of range. Those symptoms resolved by reducing T3 by 5 mcg.

borahae profile image
borahae in reply to ShootingStars

So I just went to my doctor and showed them my ultrasound, everything was okay. My doctor just told me to take my supplements. They said that stress, anxiety and bad lifestyle is contributing to my current low health. They told me I don’t need to take any medication for my thyroid... I asked about my TSH being higher than the range, they just said to leave it be. If anything, come back for another blood test in the future.

I’m not sure what to make of this.

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