Hashi and water retention: Hi, I posted my blood... - Thyroid UK

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Hashi and water retention

Sunsetzzs profile image
7 Replies

Hi,

I posted my blood test results about two weeks ago and then saw my doctor this past Wednesday. She told me to stop the T3, as it’s been over the last two times tested. She said to retest my thyroid levels in 7 weeks and the she would consider upping my dosage from 75 mcg of Synthroid. Yesterday my feet, ankles, lower legs, and wrists became swollen, as in what looks like water retention. Could this be caused by stopping the T3- she told me I did not need to wean off of the 5 mcg dosage, so I just stopped. Thanks

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Sunsetzzs
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greygoose profile image
greygoose

T3 is the active thyroid hormone. T4 is basically a storage hormone that doesn't do much until it is converted into T3. But not everybody is very good at that and need to take T3.

T3 is needed by every single cell in your body to function correctly. So, if T3 is low, symptoms can occur anywhere and everywhere in the body and brain.

So, yes, your water-retention/swelling most certainly could be caused by stopping your T3.

So, your FT3 was over-range? Do you have the actual numbers: results and ranges? How was your FT4? Post the numbers on here and let's have a look.

Do you have Hashi's? Because it's hard to believe that just 5 mcg T3 cause over-medication. But, you can't wean-off T3. It's not a drug. If you need it you need it, so your doctor was very wrong to tell you to stop it. Why did you start it in the first place?

It's possible that you, as an individual need your FT3 over-range to be well - I know I do. You could have some form of thyroid hormone resistance and need high levels in your blood in order to get some of it into the cells. Doctors don't make allowances for these people, I'm afraid. They just don't understand.

Sunsetzzs profile image
Sunsetzzs in reply to greygoose

These are my lab results from Sept 12, 2024, and then below from May 31, 2024. I was dx’d with Hashimoto’s with positive antibodies a few years ago. I was on 50 mcg Synthroid for about 18 years Liothyronine 5 mcg for about 18 months . Synthroid was increased for the first time June 3, 2024, to 75 mcg

Sept 12, on 75 mcg Syn & 5 mcg Lio (both tests I stopped T4 and T3 24 hours previously, plus all the other recommendations for testing were followed.)

TSH result- .457 (Range .55 - 4.78)

T4 result - 1.30 (Range .89 - 1.76)

T3 result - 4.35 (Range 2.3 - 4.2)

May 31, 2024 on 50 mcg Syn & 5 mcg Lio

TSH result - 2.193 (same ranges as above)

T4 result - 1.07

T3 result - 3.98

greygoose profile image
greygoose in reply to Sunsetzzs

(àAnd have you had the same doctor all this time? Because if so, you need a new one. This one doesn't understand thyroid and does know how to interpret blood test results.

Keeping you on 50 mcg Synthroid, a starter dose, for 18 years is gross negligence. In May your FT4 was only 20.69% through the range. You possibly didn't even need T3, just an increase in levo.

In September, your FT3 was only ever so slightly over-range, really nothing to worry about, and certainly not a reason to stop your T3. Ranges are only rough guides. They are not cast iron barriers that you mustn't cross. Did you feel over-medicated at that point? Did she even ask you how you felt?

And how did you feel when you were on T4 only?

Sunsetzzs profile image
Sunsetzzs in reply to greygoose

For 18 years I made the mistake of having family doctor treat me. He assumed all of my thyroid symptoms were due to fibromyalgia and a traumatic brain injury. Then I started to wake up and realized I had to look into this myself. I went to see an endo about 18 months ago. He put me on T3, but refused to increase T4 , even though I still had what I now understood to be many hypo/Hashi symptoms. He said your blood tests show you’re within normal range, so your thyroid is fine. I never went back.

My original family doctor retired the beginning of this year and so I was assigned to another at the practice. She seems willing to work with me, and even increase T4 to 75 mcg, but she will only make one change at a time, make me wait 7 weeks for another blood test, and then make an adjustment accordingly. So at my visit last week, she said that being over range on T3, she did not want to increase the T4 until I stopped the T3 for 7 weeks and the. Get tested again. And now the water retention started. Though I did have a bout of this back in March for a few days when on 50 mcg of T4 and 5 mcg of T3. Doctor didn’t do anything then- suggested low salt and compression socks.

And now the doctor I’m currently seeing told me that she is leaving the practice in two months and I’m going have to start all over with a doctor that has not yet even been hired there. Gah- It’s maddening!!!

My question- should I contact her and tell her that I think I should go back on T3 bc of this swelling (now that I know stopping T3 is a likely cause)? Though I suspect she will want me to wait it out for 7 weeks until my next blood test.

greygoose profile image
greygoose in reply to Sunsetzzs

He assumed all of my thyroid symptoms were due to fibromyalgia and a traumatic brain injury.

Fibro is a syndrome, not a disease, and it is very often caused by badly treated hypo - fibro does not cause hypo! Very often when hypo is correctly treated the fibro symptoms go away, showing that they were actually hypo symptoms.

Did you have a traumatic brain injury? So, do you have Secondary Hypo? If so, don't let anyone dose you by the TSH. That would be absolutely useless.

Endos are rarely the right people to see about thyroid. The vast majority are diabetes specialist who know nothing about thyroid. In fact, it's very, very difficult to find any doctor that knows anything about thyroid, which is why we all have to learn about our disease and often self-treat.

Compression socks might help - if you can get them on! I never can! lol But a low salt diet would probably cause more problems than it cures! The body needs salt, especially the adrenals.

She's right to only change one thing at a time, that's the way it should be done. Otherwise, you won't know what's helping and what's not. But she obviously doesn't understand the relationship between T4 and T3. There's no reason why she shouldn't increase the levo even though the FT3 is just slightly over-range, and see what happens. It probably won't make much difference to the FT3. And, as I said before, being slightly over-range on FT3 is not a federal crime! Some people just need it that way but also need their FT4 quite high.

I think it's worth trying to get your T3 reinstated, although she probably won't agree with you. But, nothing ventured, nothing gained, right? :)

Sunsetzzs profile image
Sunsetzzs in reply to greygoose

Thanks Greygoose. I think all of my symptoms came from severe anemia (until 2015), Hashimoto’s, and the traumatic brain injury- which all got lumped together as fibromyalgia as a result of the injury.

Thyroid surgery came before the brain injury, by two years. I’ve learned more on this site and a couple thyroid books and sites than I ever learned from my doctors.

I will message my doctor and see if she’ll agree to let me restart the T3. I have the pills, but if I don’t let her in on it and take them, then my next blood test results won’t make sense to what she's instructed. It’s all so frustrating, but thank you for helping me to navigate my way through this!

greygoose profile image
greygoose in reply to Sunsetzzs

You won't learn much from doctors because they just don't know. The majority of them are just groping their way round in the dark but they don't understand how it all works - or doesn't work!

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