In March 2016, I went to the doctor with complaints about hair loss and extreme fatigue. She diagnosed me as having Subclinical Hypothyroidism (My TSH at blood work nearly nine months prior was 5.41, Free T4 was 0.9). She started me on 25 mcg of Levothyroxine daily. At first, the medication seemed to take the edge off of my symptoms - lifting anxiety, easing the fatigue. Repeat blood work done on April 21 was not encouraging though - My TSH had increased to 5.64 and my Free T4 was now 1.20. Through a variety of mishaps, a follow up appointment slipped through the cracks, but as I was feeling okay, I didn't worry about it.
In early to mid-June 2016, I got pretty sick. A sore throat came on (and went away) in a hurry, followed by a swollen uvula (that also went away quickly). However, I haven't felt good since. It occasionally feels like I'm gulping in air, as if I can't get enough. I'm having extreme trouble falling (and staying) asleep, my hair loss is still here. It feels like someone is applying pressure to my neck at all times. I went to the doctor on July 13th and she said that my tonsils were swollen, she felt swollen lymph nodes (I have no idea which ones) and my thyroid was enlarged. Under the belief that it was Mono, she ran blood work and a mono screening with instructions for me to get a Thyroid Ultrasound.
The mono screening was negative, all of my blood work was within normal testing parameters (I have the numbers, if anyone needs them). My TSH was at 2.36 (FINALLY) and my Free T4 was 1.31.
I went for the Thyroid Ultrasound on Thursday, and the doc just called to say that it was normal - no nodules or anything.
What's going on? Do I need to get a repeat ultrasound? Different blood tests?
I guess I'm worried that what's going on here is something serious that the doctors keep missing and by the time they find it, it will be too late to do anything about it.
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dbreweur
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I have had throat, swollen glands and pressure under jawline and across throat for 6 months now. Have had same tests you have had. All normal. As with so many symptoms I have the docs can't explain it. Might need to increase dosage as doc took me off NDT when I began to have hyper symptoms. That threw my whole system off and I wound up in the hospital. Had to start back very slowly 1/4 grain every two weeks. Now am on 1.50 grain on arising and .75 grain in afternoon as split dose helps avoid crash in afternoon. My labs are ok. Going to see what the next couple of weeks does if anything. The whole medication juggling and Hashi flares are enough to equal a full-time job. How does anyone get anything done besides managing this Disease? Should mention I also have Type 1 Diabetes and Lyme Disease but Thyroid is most troublesome.
The worst thing, in my view, is to diagnose upon the TSH alone as sometimes it never does rise high enough to be diagnosed. They don't know any clinical symptoms and disregard any complaints we present with.
They take a blood test and tell patients they're normal when the patient feels anything but.
This is from Thyroiduk.org.uk and you can see how best to be diagnosed and the blood tests to have.
Blood test for thyroid should be the very earliest possible and fast, you can drink water.
If you were on thyroid hormones you'd allow approx 24 hours between the last dose and the test so results aren't skewed.
Ask for a full thyroid function test (probably wont but you can have a Private One for those they wont do). TSH, T4, T3, Free T4, Free T3, Antibodies, B12, Vit D, iron, ferritin and folate.
Get a print-out from the surgery with the ranges and post on a new question for comments.
Did you have the blood test early in the morning the first time and later the second time? Always have a blood draw as close to 4am as possible as this is when TSH is highest fluctuating wildly through the day.
Also 25mcg is a starting dose. You should have had a test and increase at 4-6 weeks and an increase until your TSH was 1 or below.
They were both early in the morning (8 am for the second, can't remember the first but it would've been no later than 9 am) after fasting - doctor didn't say I had to fast, but I read somewhere that the levels were more accurate if you did so.
Welcome to our forum and sorry to hear that you are feeling so unwell.
Your symptoms sound typical of Hashimotos Auto Immune Disease common in hypothyroidism. As antibodies attack the thyroid gland, less and less thyroid hormone is produced until eventually it becomes deplete.
A low Levothyroxine dose can increase thyroid activity enough to stir up thyroid antibodies (previously laying dormant) which instigates an increase in white blood cells that infiltrate the lymph nodes found in the neck, groin and armpits. This is often accompanied with flu-like symptoms which won't be relieved until the attack decreases.
Attacks may come and go, making your hormone levels and TSH variable until you are finally optimally medicated, so suppressing the thyroid glands activity.
Hashimotos may cause a goitre that may initially come and go but longer term hormone deficiency usually causes a persistent goitre and//or nodules.
Ask your GP to test thyroid antibodies TPOAb and TGAb as either or both will confirm diagnosis. Also Ask your GP to test Vit B12, folate, ferritin, Vit D and post results complete with ranges (numbers in brackets) for members to comment. These nutrients are required for good thyroid function and are commonly deficient in those with low thyroid hormone.
Thanks for the tip. She's out of office now until at least Monday, so we'll see how it goes. I did previously ask her about getting the TPOAb and TGAb tests, but it was more or less brushed under the rug when she felt swollen lymph nodes/enlarged thyroid (Full admittance: I panicked and automatically assumed the worst - a feeling I can't seem to shake).
You are on a baby dose of levothyroxine, suitable as a starting dose for the elderly or people with known heart disease. Younger, healthier people should be started on a dose of 50mcg levothyroxine.
In either case, full blood tests should be done after 6 weeks, and the dose raised by 25mcg. Wait 6 weeks, then repeat the process. The idea is to keep raising, until symptoms are eliminated, as long as obvious signs of overdose are avoided.
From the point of view of patients the best results when treated with levothyroxine are (usually - but people vary)
TSH about 0.5 - 1.5
Free T4 in the top quarter of the reference range
Free T3 in the top third of the reference range.
Patients should avoid an over-the-range Free T3 because this indicates over-medication.
Doctors, on the other hand, often think that once TSH has dropped into the reference range the patient is fine and any symptoms they still have are due to "something else" and not their thyroid. They often just prescribe anti-depressants and send the patient on their way. The "something else" is never identified. They rarely test Free T4 or Free T3 once TSH is in range. Patients have been told that Free T3 "isn't important".
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