In November I had RAI due to overactive thyroid. My Dr. started me on Synthroid 50 mcg in January. I am now on an alternating dose of 50 mcg 3x week and 75 mcg 4x week. Dr. says to stay on this dose as my TSH is decreasing (although VERY slowly). The only symptom I am really still experiencing is mood swings. Mostly extreme anxiety and restlessness. However, this usually just occurs around 10-12 in the morning. So maybe you guys can help me with a couple of questions.
1. Does it normally take MONTHS for TSH to lower?
2. I've read that Synthroid peaks 3-4 hours after dosing. Is that why I get uncontrollable anxiety around lunch time (I take my dose 6:00-7:00 am), or is just because my levels are still not in normal range?
3. Should I add t3 since my t3 is on the low-normal range? I have tried twice to add it, but felt it made my hyper symptoms return-pulse above 100, sweating, nervousness, insomnia. Does this mean I do not need the t3 or is there an adjustment period (I am VERY sensitive to meds, so after every Synthroid change I am crazy for 2 weeks!).
Sorry for all of the questions, I am just tired of dealing with the wait and see attitude of my dr.
As your thyroid was destroyed your doctor should have started you on 100 mcg Synthroid and then adjusted after a month or two. You are very much under medicated at the moment. I would not add in T3 until your TSH is around 1.0 or less and if you still do not feel well.
Your anxiety will not be due to the timing of the Synthroid, it is more likely to adrenal hormones peaking as their clearance will be slow due to continuing hypothyroidism. Maybe your doctor should consult a specialist for advice.
You appear to have a sadist for a doctor. I have absolutely no idea why he’s doing what he’s doing - but I suspect he doesn’t know either, and that’s the problem!
Before you start considering the addition of T3 you really need to be put on a decent amount of Levo. Generally, it’s safe to raise dosage by 25mcg every 6 weeks until symptoms resolve (and this won’t be until your FT4 and FT3 are at least halfway through their ranges and probably in the upper part).
Your doctor’s reluctance to raise your levothyroxine dose is keeping you ill, I’m afraid. Is there another doctor you can see?
Thank you! I am going to increase my Synthroid, as everyone has suggested. I am actually relocating in a month to a new area (with much better healthcare!). So I just have to make it a month
Whether your Dr is a fool or a sadist is a moot point, but in any case he is deliberately keeping you under-medicated and symptomatic. He should accept his inadequacy in this field, and refer you to an Endocrinologist immediately after increasing your Levo dose. Meanwhile, as has been suggested, can you see another GP in the practice? I echo the view that you aren't yet at the point to be considering the addition of T3.
Thank you! I am going to increase my dose to see if I can start getting relief! I am relocating in a month, so will be changing doctors then. I've already started researching doctors in the new area.
Most patients with zero thyroid function will need somewhere between 100mcg and 200mcg Levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if under medicated as you are
TSH likely dropping because vitamin levels are dropping
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
It is taking me months. Does that help at all. I am so sorry. I wish I could be the Thyroid Fairy and wave a butterfly shaped wand and say: "You got this, hon! By August you'll have forgotten that you were insane!" But, I am afraid that all of us are in a bit more trouble than that. I was started on Levothyroxine the last week of January...I have gained a pound a week, I can' t sleep, I am destroying my marriage but I am still nice to the dog. I go through black depressions followed by....it'll be fine I am so ok!!! But then I start to cry and...well you know. But...
Yes it has been months.. And mine goes up and then back down! You?
We started roughly the same time! And, yes, my moods go up and down. It's crazy! I'll be completely happy and giddy one minute, then start hating life, then get mad for no reason, and on and on. I just never realized it would take so long to get "normal!" It is very frustrating! But I am better than I was in January and February, so that is a plus!
Do you have Graves Disease and the RAI was to ablate your thyroid ?
A fully functioning working thyroid would be supporting you on a daily basis with approximately, 100 T4 ( Levothyroxine ) + 10 T3. I personally think at this point in time I'd work on increasing my Levothyroxine and ensure my body's building blocks of vitamins and minerals are optimal.
I am with Graves Disease and had RAI ablation in 2005 - and became hypothyroid within a month. We are all different but I would have thought after this 6 month period your thyroid is now not functioning.
Your body clock has been running very fast and now you have been slowed down bringing you into hypothyroidism. It is essential that your ferritin, folate, B12 and vitamin D are tested, as if these are not optimal, thyroid hormone replacement conversion, within the body, may be compromised.
It is imperative that you are dosed and monitored by T3 and T4 blood test results and not TSH reads. Change doctors and or get an urgent referral back to endocrinology for a more knowledgeable assessment and stabilisation of your thyroid hormone replacement
After RAI your feedback loop is broken and the TSH means diddly squat.
I'm not sure if it's Graves, Hashimoto's, or something else. Back in Nov, the dr said my antibodies were a little elevated at 30-something but did not give that as a definite answer as to what caused hyper. I am going to increase my Synthroid dose to see if I can start getting some improvement.
Brandyreddinger, No, the dosing strategy you're being subjected to isn't at all normal. The dose you're on is barely higher than a starting dose for someone who still has quite a bit of working thyroid, who would usually be started on 50mcg, and then raise by 25mcg every 6 weeks. But for someone who has had most of their thyroid destroyed you'd normally be started on at least 100mcg per day (I was started on 150mcg after my thyroidectomy). You should expect a blood test every 6 weeks, and then the dose adjusted by 25mcg, usually raised at first, until the blood test numbers look good. Atmo yours are very low, and its clear you'll need several increases. My v rough guess would be 10-ish increases.
Your blood tests show you are extremely hypothyroid and sick. Numbers this extreme are only really seen after a person has had most of their thyroid removed. I'll explain them in turn.
TSH, or thyroid stimulating hormone is produce by your pituitary gland to call out to the thyroid to make more hormone. A healthy person would have a TSH between about 0.8 and 1.8, but once on hormone replacement we need it lower than that, often below the range, which is called surpressed. Very high numbers like yours will usually come down quite quickly once you've had a couple of dose increases.
FreeT4, this measures the amount of available hormone on your blood. T4 is the hormone in Levothyroxine tablets, and its the storage form. Your body needs to convert that T4 into T3 to use it throughout your body. A healthy person would have this around halfway through the range, when on thyroid hormone replacement we need it right at the top of the range, because making T3 out of it is quite hard and we need lots available. The range for your result is 7.5units wide, and your own result is barely scraping the bottom, and has been creeping up to about halfway. This is the blood test number your dosing should be based on when taking Levo, and the goal is to push it right to the top, or some people even need it slightly over.
FreeT3 shows the available T3 hormone you've got. This is the hormone needed by every cell and organ in your body: Heart, brain, digestion, the big muscles in your legs and torso that walk you around, sugar and temperature regulation, etc, etc. It acts like the batteries in an electronic toy. Without it we completely slow down and can't operate, and almost any kind of symptom can appear.
Again, a healthy person will have this about the middle of the range, but people on hormone replacement will usually need it in the top third. Yours has been absolutely dire the whole time. This is the number out of the 3 that most reflects symptoms, so it shows that you will be feeling completely rotton. When mine was this low I was in bed all day, just getting up to use the toilet and get some food. It's necessary to take a large enough dose of T4 to allow your body to convert it into the T3 your body needs.
To answer your first question, though, it actually does take months to get better and tune a dose. But that is even when you get a competent job and aren't left languishing on a starter dose for months. To give a very rough guide, if you started having proper dose adjustments today, which would mean for you a raise of 25mcg every 6 weeks, until that freeT4 is high in the range, and if everything else went smoothly, it would take about 6 months or more to get onto a good dose and settled. But of course you would feel improvement from where you are now quite quickly. It is a long and slow process, but unfortunately your doctor has been taking you nowhere for the whole time.
I agree with others that you must find a different GP. Or maybe it's possible to give this one a very stiff talking to and show them the NICE guidelines? Often it's not possible to train one up as they're quite proud This person has not been helping you one jot, and is one of the worst doctors I've heard on on this forum, which is saying a lot!
Thanks for that very detailed explanation! I am relocating next month, so I will have to find a new doctor anyway. Until then, I'm going to increase my dose to see if I can start to see an improvement. Hopefully, that will provide a little relief very soon!
Moving is good news, hopefully your new doctor will be a good one, and shocked by what's happened!
If you're going to raise yourself I'd suggest 25mcg. After 6 weeks you could consider a private test through Medichecks or Bluehorizon and adjust your dose again.
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This person has not been helping you one jot, and is one of the worst doctors I've heard on on this forum, which is saying a lot! 
High TSH causes?
Still Fighting the Low TSH Battle
Graves, thyroidectomy, fluctuating high blood pressure
TSH barely in range but still struggling
T3 still low despite high doses
