Levo thyroxine decreased from 200mcg to 100mcg suppressed TSH

[Hele1]

Hi there

After my visit to the endocrinologist it was recommended I stop my thyroxine altogether because of my suppressed TSH. My results were

T4 15.4 (7.5 - 21.1)

T3 4.5 (4.3 - 6.8)

TSH 0.01 range.

After explaining all the information I've gained from this great website my doctor agreed to drop to 100mcg and test again in a few weeks.

I'm feeling more tired, cold and miserable. I have also gained weight. But what I wasn't expecting was a massive increase in appetite?? I wake up hungry which is very unusual for me, I'm hungry throughout the day shortly after meals and I'm even waking in the night hungry?

Does anyone have any suggestions as to why this might be happening?

Thanks

[Joesmum]

I think the hunger maybe to do with low blood sugar levels. Hypothyroidism plays havoc with blood sugar levels.

Before I was diagnosed I was skinny and could double portions of e erything and never put weight on.

Just my thoughts.

However, your FT3 result is so low I don't understand why your endo decreased your dosage of levo.

You clearly have a very lazy pituitary and your low TSH certainly doesn't correlate with your low FT3 results.

Please google secondary or central hypothyroidism.

You should be mentioning this to your endo.

[Hele1 in reply to Joesmum]

Hi joesmum

Thanks for your quick reply. I tried to explain to the endo about lazy pituitary or other reasons for suppressed TSH as t3 is low in the range but he refused to listen just kept saying how dangerous it was for my heart and bones. He even refused to test my t3 when I had dropped to 150mcg for a few weeks and t4 dropped to 13 (tsh still 0.01) very frustrating! That makes sense about blood sugar levels thanks.

[greygoose in reply to Joesmum]

Central hypo only applies if you have low TSH, and low Frees, BEFORE you start thyroid hormone replacement.

Hele has a low TSH because she is taking thyroid hormone replacement.

If you start talking about central hypo when you're already on THR, you destroy all your credibility.

[Joesmum in reply to greygoose]

Take your point greygoose.

But having central hypothyroidism and hypopituitarism myself, it's not that simple.

The pituitary/ hypothalamic axis can give up at any time, including when supplementing with levothyroxine.

My apologies if I was misleading.

[greygoose in reply to Joesmum]

Surely, if your pituitary gave up whist you were taking levo, there would be other, more serious symptoms.

Hele was on 200 mcg levo. You would expect her TSH to be suppressed, and she wasn't complaining about extra/different symptoms, just that her dose had been cut.

[Joesmum in reply to greygoose]

I've already apologised!

[greygoose in reply to Joesmum]

I was asking you a question, that's all.

[Joesmum in reply to greygoose]

Sorry greygoose.

I'm a bit overly sensitive at the moment.😥😔

Hormones!!!!!!!

[greygoose in reply to Joesmum]

Tell me about it! lol No problem.

[Hele1 in reply to Joesmum]

Joesmum how did they confirm you have hypopituitarism is it a simple test? What were your t4 and t3 results? Have they given you t3? Sorry 20 questions! Do you feel well now?

[Joesmum in reply to Hele1]

When diagnosed I had a TSH just above 6. My FT4 was 7 ( 12-22) and my FT3 was 2.1 ( 3.1-6.8)

I was diagnosed by blood tests only. As soon as I was put onto levo my TSH became suppressed before my FT's were in range.

I take both T4 and T3 and no I don't feel well. I feel better than I did and am not bed ridden anymore. But my symptoms were profound. Very, very serious. Trying to get the right dosage is like shooting in the dark.

I am under the care of an NHS endo who sees me every 6 weeks and has done for over 2 years. He's rather brilliant.

My TSH never rises above 0.03 now no matter what the FT's say.

I also take hydrocortisone too but hopefully this is not permanent.

I also have Hashimoto's so both ends are compromised!

[Hele1 in reply to greygoose]

Thanks for clarifying that greygoose. I think it's now just a case of convincing them that TSH at that level is not dangerous perhaps by asking for bones scans/heart checks as I've been suppressed since 2005.

Trying to explain I'm not converting very well fell on deaf ears ...

[greygoose in reply to Hele1]

No, I'm not surprised, they know nothing about thyroid. I'm sure you know a hell of a lot more than your endo!

There is research which proves that low TSH does not cause bone and heart problems, but I'm afraid I don't have a link. Why not post a new question and ask for the links, so that you can show your endo.

On the other hand, you could try asking him to prove that it does cause heart and bone problems. Ask him to point you in the direction of that research. He won't be able to do it, because there is none!

[humanbean in reply to greygoose]

Regarding the bones :

healthunlocked.com/thyroidu...

[Angel_of_the_North in reply to greygoose]

Rotterdam study is probably what you need to search for.

[Saggyuk]

Really?? Even a tiny decrease in your dose is enough to raise the TSH quite a bit so can't believe they wanted you to drop them altogether. I would suggest that endo does not know what they're doing and with T3 low, not a great thing!!

In regards to hunger, I crave more when low in energy or low in thyroid especially high quick energy stuff like sugar/carbs - food = energy. This would make sense?

Unrelated to thyroid, the other times I get insatiable hunger that just wont go away is when I am low in something and my brain/cravings can't quite figure out what. Sometimes you know straight away, like when you crave a juicy big steak or a large glass of milk or cheese and often with me, even fruit and veg but other times it's not obvious - maybe something more obscure than the essentials and I think the premise is if you continue grazing on everything and anything, at some point, you might finally strike gold lol. I'm assuming this would have been helpful when we were foragers or hunter and gatherers and prob still useful today?? If we need something quite badly, our bodies tend to wake us up - like with dehydration! If this is the case, (often happens to my daughter) I find a multi vit with everything in it can help.

And yes, as mentioned above, sugar levels will do this also. However, this has never woken me up hungry nor my friend who has sugar level issues, if my sugar levels are low, I crave chocolate/coke. what are you craving?

[Saggyuk in reply to Saggyuk]

You can get a cheap glucose test pack from the pharmacy to check your sugar levels for a few days to rule it out?

[Hele1 in reply to Saggyuk]

Hi saggy yes that also makes sense that my body might be craving food for energy due to less thyroid circulating. At the moment I'm craving everything! Chocolate as well! A glucose test pack sounds like a good idea thank you.

[Saggyuk in reply to Hele1]

I would also possibly seek a second opinion on the dose drop - 200 to 100 is way too much in my opinion and I'm not surprised you are having problems - when are you supposed to be seeing them again and having bloods retested?

Sorry just seen a few weeks. it seems silly as it takes at least six weeks for my bloods to show accurately after a dose change - normally more and it's always supposed to be gradually?

[Saggyuk]

Oh and thirst can be mistaken for hunger too so make sure your getting enough water

[Hele1 in reply to Saggyuk]

It is a big drop and I feel worse. When they tested at 150 I was still suppressed but dropped t4 ?? Surely that's enough evidence I'm not overmedicated but they want to drop again to 'solve the TSH problem'

I asked to try some t3 but he was very annoyed and told me that would make me even more over medicated ..... duh ??

I'm drinking plenty thanks hoping it will take the edge off the hunger!

[blondpalomino in reply to Hele1]

Hi Hele1,

For him to say you are overmedicated is nonsense.Your T3 is at the bottom of the range.Your T4 is mid range,this figure doesn't really matter so much if your T3 is better and you are feeling o.k, but you are obviously not. With your TSH so low, if you were to take T3,it probably wouldn't make any difference to the TSH, it would just push up your T3 figure,so can't see how it would make you more overmedicated. Keep on at him to give you some T3.

I have recently changed from having T3 and T4 to just T4 at the doctors request over several months.Thankfully I am back on the T3 as it didn't work,but the blood test while on T4 alone was still supressed and not much different to the one with the T3 as well.

Endos and doctors are obsessed with the TSH level being "normal", but very often it's not possible.My Endo said she was aiming for a "non-suppressed TSH", but I asked my doctor how is this possible when it is still supressed with T4 alone? Thankfully I have a doctor I can talk to!

[Hele1 in reply to blondpalomino]

Blondpalomino

That's interesting luckily you have an understanding doctor who prescribes t3. So, overmedicated should relate to a high t3 and t4 not just a suppressed TSH thank you.

[Hele1]

No delicious it hasn't been mentioned would that explain my results?

[bantam12 in reply to Hele1]

Hele 1 unless you have high calcium there is no indication of a parathyroid problem.

[CandyGirlCLW]

Yes, I requested a parathyroid blood calcium test and ultrasound after much reading. The doc who did the ultrasound saw and measured my parathyroid. You are not supposed to see the parathyroid. They even measured it. The paras are the size of a grain of rice, and there are four. My blood calcium levels are only 8.9, doc said, "let's watch it." I've read thy reviews of people who had nodules removed, ALL said they felt 10 years younger. I have Hashimoto's since 1996, and it was extremely painful, causing severe dibilisting headaches. But after 6 months, it abated. I was teaching public school, primary grades with 35 kids by myself. I did really good with extreme energy until about 5 years ago when I started getting so exhausted, I could barely lift my feet. My doc finally said I had to retire after only 34 years. I spent almost 2 years in bed as I felt like I was dying. I'm all alone and needed help in getting food. I finally started reading everything I could get my hands on and bought the suggested supplements as I am anemic and low on protein. Doc said to get 6 eggs a day. I really feel like I'm dying slowly and my family just doesn't get it. I got B-12, Fertitin, B-12, vitamin D, and a few more that I don't remember cause I can't sleep and it's 3:00...again. The stress of my job working about 12 hours a day during the week, and always planning for about 7 hours on Sundays. I can't get enough energy to clean my house or go shopping for food. The Endocrinologist I finally saw doesn't seem to understand how bad I feel. If I had cancer or something definitive, I could have a goal to get better. I'm sending my results to Dr. Norton in Tampa, Fl, and see if he thinks I might have nodules on my paras. I have severe GERD, severe osteoporosis, low D, and extremely high varying blood pressure, all signs of nodules. I've changed my diet to lots of protein. I make shakes with colleges protein, ginger and turmeric with Vital Reds. My skin is so dry, it cracks. I'm 66 and feel like I won't be alive much longer. I must tell you that in 2004, I had cervical surgery, a double dissection and fusion which took my horrid neck pain away. However, the incision was made in the front of my neck, and they had to move my thyroid, vocal cords, etc., over to do the surgery. I have been sick ever since. I had to sign a paper that I might not be able to talk again, or eat again due to the moving of my organs in my neck. I wonder if that surgery has done something to my paras. Has anyone ever heard of this? If you have any educated guesses about my problem, please help me. Am ready to give up. Life has gotten so hard, I have no desire to even go outside or to the pool. Maybe I need to push and try excel using to give me back my old body, full of energy. Thanks, Candy

[ljk1 in reply to CandyGirlCLW]

Candy girl I am so sorry you have had such bad experiences but don't give up! Have you had your DHEA checked? I've had similar symptoms,just found my cortisol levels are extremely low and my DHEA even lower, the research I have done suggests taking DHEA and/or pregnenelone will make a big difference,it also comes in a cream for the dry skin! I am not medically qualified. Found this article which makes it sound miraculous lol; life-enhancement.com. August 1999 magazine exclusive interview with Ray Sahehan MD (I know they are selling stuff so everything is hyped-but please can I have it lol)

[ljk1 in reply to ljk1]

Ray Sahelion, sorry!

[SilverAvocado]

Waking in the night hungry can be an adrenal issue. As the adrenal glands are supposed to cover for the fact you haven't eaten for hours. But I think when very hypothyroid this always happened to me and has become less as my dose has improved.

If your TSH is always low, this is central hypothyroid, meaning that your pituitary gland is the problem, and your thyroid itself may be healthy and doing well. Your Endo might know absolutely nothing about this!

[Angel_of_the_North]

Those bloods suggest that you needed an increase if anything, or the addition of some T3. Both FT4 and FT3 low in range esp FT3. It's probably under ange now so you'll feel terrible. Generally, dose changes are in 25mcg increments that was far too big a drop.

[Hele1 in reply to Angel_of_the_North]

Thanks Angle that's the reason I went in the first place to get an increase and hopefully try some t3. When they told me to stop all medication because I'm hyper I had to convince them to gradually reduce it. I told them I have no hyper symptoms and he said sometimes there aren't any. I asked why I have hypo symptoms and he said it could be because of lots of other reasons. I reminded him I have confirmed hashimotos he said that's irrelevant!! It's a constant battle and so frustrating ...