Long story short I have unmedicated Hashimoto's. Been symptomatic for years and my levels have been up and down as well as my TPO antibodies but I’ve never been put on medication as normally my levels are within range. I would say my average result is a TSH of somewhere roughly:
TSH 0.7 (0.35-3.5)
Free T4 15 (12-22)
Free T3 4.8 (3.6-6.4)
Strangely, my TSH has never ever been higher than 0.9 on a blood test.
My TPO antibodies haven’t been checked for a while but the last couple of tests were under range. Years ago they were 1500 so that’s a great improvement.
My concern is that I’m 6 weeks pregnant and suddenly I’m really cold and my thyroid is so painful to touch! Under normal circumstances I would just huff and puff, declare it a mini flare up and carry on with my week, but as I’m pregnant I’m terrified. I’ve got a blood test booked for the 3rd February and I will be 7 weeks pregnant then. Is it too long to wait? I’m terrified my baby will be affected! During my first pregnancy three years ago my TSH never went high but dropped very low (0.1) and my free Ts were upper normal range and I felt really well. My daughter was born at full term and she’s intelligent and doing fantastically at everything so I’m hopeful she’s had no ill effects from my thyroid being poor.
Can anyone advise whether another week is too risky to wait as I’ve got these thyroid symptoms?
Thank you in advance.
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Paolatello
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Hi Paolatello. Congratulations on your pregnancy! I have very similar levels and I also have Hashimoto’s. It is rather uncommon to have what looks to possibly be Central Hypothyroidism and also Hashimoto’s. I can’t recall ever meeting another person with the same problems. Chances are, your doctor has not met another patient with both of these conditions, either, and they don’t know what to do with you.
Could you post your last three lab results including dates? Antibody results too please. Thyroid test results are not ever averaged. Each separate lab test result is viewed in relation tp the other thyroid tests at a particular moment in time. A series of complete thyroid tests done over many months provides the best clues as to how the thyroid is functioning.
Aside from the thyroid pain, is your neck also swollen? Have you had a thyroid ultrasound? It is very important to have a thyroid ultrasound when you have thyroid disease because thyroid cancer must be ruled out. People with goiter (swollen thyroid often containing modules) should have their thyroid ultrasounded every year or so. Since your thyroid is now painful to the touch and new hypo symptoms, it is very important that you get a follow up ultrasound to the last one you had. If you’ve never had one, it is critical that you get one right away. It is common for someone with Hashi’s to have nodules. It is also common to have nodules receive a fine needle biopsy. It is not a very painful test. There is more pressure on your throat than other discomfort. Most nodules test benign.
Low TSH and low FT3 and low FT4 confuses the majority of the typical thyroid illiterate doctors that are out there. Low TSH and low thyroid hormones, high antibodies, goiter (swollen thyroid), and symptoms all mean that you need to be on thyroid hormones. Pregnancy complicates the situation because doctors in general are stumped by patients like us who do not have classic hypothyroidism, or classic Hashimoto’s.
Low TSH and low FT3 and FT4 indicate the “possibly” a pituitary gland problem. Yes, your FT3 and FT4 are much too low in the range. This is part of why you don’t feel well. The other part is that you have Hashimoto’s. TSH comes from the pituitary gland. It is not a thyroid hormone. What it is is a messenger hormone that gives your thyroid instructions to produce more or less thyroid hormone. If it truly is a pituitary hormone, this called Central Hypothyroidism. In the standard type of hypothyroidism, called Primary Hypothyroidism, TSH is high, and FT3 and FT4 are low.
The reason that I say “possibly” Central Hypothyroidism is that there can be other causes of low TSH and low thyroid hormones. Certain medications can cause this problem. There are also medications and supplements indirectly cause this problem. There is also a special type of a prescription topical and oral retinoid that causes hypothyroidism that suppresses TSH and causes low thyroid hormones. I mention this because I am still trying to get to the bottom of my very suppressed TSH. I have had two general brain MRI’s over a span of 7 years. Neither showed abnormalities of my pituitary or hypothalamus, however neither MRI conducted a focal study either. One of the types of medications that suppressed TSH is any that directly or indirectly increases serotonin. This could occur from headache meds, antidepressants, supplements, and even some vitamins. What medications or supplements do you take?
Where are you located? Hopefully someone on this board is in the same area and can help you find a qualified thyroid doctor.
Thanks for your detailed answer. The averages I gave you for results are my averages looking at the last four sets of results. My levels stay pretty constant and are always basically what I’ve shown you in my previous post with a low ish tsh and low in range free Ts. My antibodies have been as high as 1500 but recently have been below 35.
I’ve had three thyroid biopsies and lots of scans as I have a 3cm nodule and it’s benign thankfully. It’s the nodule side that is now painful. It is slightly swollen but not huge. When I was first diagnosed over ten years ago it blew up so swollen it looked like I’d swallowed a gold ball. I’ve definitely not got central hypo. My pituitary is fine. I just have weird results. An endocrinologist in Spain when I lived there told me that sometimes tsh can be really low in hashimotos but it’s unusual.
Right now I’m just concerned about the pregnancy.
You’re welcome! Are you results taken the standard every 6 weeks, so are just covering a 6 month period, or are these averages from a once every 6 months test, so reflect a period of a few years, or are these just 4 yearly tests so it’s over 4 years?
TSH is not low in Hashimoto’s. It’s low in Central Hypothyroidism and the other reasons mentioned. Not sure where your doctor got that. It doesn’t just happen spontaneously. There is always a reason.
Your thyroid should not be swollen and painful, or have a module that is swollen and painful. It certainly should not have just suddenly occurred without a reason. When was your last scan and FNA? You’ve had a pituitary MRI or CT scan?
I’d be very concerned about the pregnancy too. Especially since your doctor hasn’t been treating your Hashimoto’s properly before you became pregnant. It’s too low of hormones that are the problem. In standard hypothyroidism, people have high TSH and low thyroid hormones. All they see is TSH, prescribe meds based on TSH, and as a result of meds, thyroid hormones increase. They’ll obsess with your low TSH, ignore your low hormones and Hashimoto’s, and not give you meds. Your antibodies might have been recently low, but a pregnancy can stimulate the autoimmune attack and antibodies increase.
Because you are now pregnant, have untreated Hashimoto’s, and either some sort of Central Hypothyroidism or some other cause for low TSH, it’s really important to find a good doctor before it’s too late.
I’m sorry that I don’t know of any doctors in Spain. If you created another post asking for thyroid doctors in Spain who can treat untreated Hashimoto’s with low TSH and pregnancy, hopefully someone can refer you. ❤️
Congratulations on your pregnancy. Suggest you get an emergency appointment with GP
It’s important to have thyroid levels tested as soon as pregnancy is confirmed.
Probably need to see Endo too
If you were already on levothyroxine, dose would be increased as soon as pregnancy confirmation
Butperhaps trickier as currently not on any levothyroxine. If they are going to start you on levothyroxine it may/ probably need to be at higher level than standard starter dose of 50mcg
Very important to test B12, folate, vitamin D and ferritin
These are frequently low with hashimoto’s.
Are they tested regularly ?
What vitamin supplements are you currently taking?
If in the UK you could order private test
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
If......when on levothyroxine.......Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 ÂŁ29 (via NHS private service )
Thank you for your helpful advice. I was put on iron to increase my ferritin and that is being tested again next week along with all vitamins and full blood count plus thyroid.
Ideally you should stop iron a week before testing .....but may be not in current situation
Iron and ferritin should be fasting test early morning,
If taking a vitamin B complex that contains biotin you need to stop this 5-7 days before blood test as biotin can falsely affect test results
Can continue taking folic acid or folate and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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Are you results taken the standard every 6 weeks, so are just covering a 6 month period, or are these averages from a once every 6 months test, so reflect a period of a few years, or are these just 4 yearly tests so it’s over 4 years? 
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