Thyroid UK
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Started T3 and have been in bed all week?

Hi, I wonder if someone could kindly advise me. I finally received my T3 from Germany and started on 5mcg last Monday. My functional doctor has advised me to up the T3 by 5mcg each week. I am also taking 150mcg Levothyroxine. My period (usually regular) is now a week late, I am occasionally spotting but nothing significant. I have been in bed most of the week with absolutely no energy at all. Sleeping loads and feeling generally rubbish. Also, all my allergies which I only developed with hashi's are on fire!

My functional doctor says this can happen until you are on the right dose of T3 - he says low doses of T3 can suppress the adrenals and I should take an extra 2.5mg of prednisolone (taking for adrenal fatigue) until I feel better and I am on the optimal dose of T3; but that doesn't really make sense to me, why would I react this way and if T3 was going to be good for me, why would it delay my period and set off a Hashi flare? I'm so confused and don't know what to think. I was so hoping T3 would be the answer. Maybe I just need to stick with it and see what happens after a few weeks of upping the dose. If anyone has any advice or has had similar reactions, I would absolutely love to hear from you.

Many thanks :)

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First you should know that functional doctors tend to know very little about thyroid. I've read some right horror stories on here of things functional doctors have done and said to thyroid patients. I think he's just making it up as he goes along saying that. I've never heard that before. And, increasing T3 every weeks is too much. It should be every two weeks.

I don't really think the T3 is responsible for you not having your period, and being bed-bound for a week. It's probably a coincidence, and you have a bug or something. And I really don't think you're having a Hashi's flare, because you would go hyper, not more hypo.

I think you should stick with it, and take things easy, see how it goes. It really should get better.

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Hi Greygoose, thanks so much for your response. The way I feel is actually how I feel when I am hypo, it's all a bit odd. I don't feel like I have a bug, I defo feel it is thyroid related as my face swelling and poor temperature control goes hand in hand with my other symptoms.

I call him a functional doctor but he is actually a private GP too and one that is on the list from the British Thyroid Assoc. I'm finding this time in my life so hard, I know it is the same for most but it doesn't half take the shine off life.

I appreciate you taking the time to reply to me and wish a lovely weekend.

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Thank you, and you're welcome. Have a lovely weekend, too. :)

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I agree that that does not sound right. Day 2 of starting my T3, I felt amazing and has continued. I was on only T4 a few days, and I knew I needed T3. What were your blood levels and corresponding range that determined that you should take T3? This is the most important piece in correctly prescribing thyroid medication.

All doctors are not created equal, regardless of the type of medical certificate that they hold. Some MD's are thyroid competent. Some function doctors are thyroid competent. Some natural doctors are thyroid competent. Some DO's are thyroid competent. You get the picture. Within all those groups, there are those that have complete thyroid knowledge fail. This applies to every other diagnosis and branch of medicine. You'll find good doctors and you'll find horrible ones.

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Hi SStars, MY T4 is at the very top of the range and my T3 at the bottom of the range but T3 was added mainly because I have never felt well since being diagnosed last August. I've been to several doctors, an Endo and my GP - all of whom have been completely useless, especially my GP. I've paid out hundreds of pounds trying to get to the bottom of why I feel so poorly. The private doc who prescribed T3 says that I have to trust him and he has treated thousands of Thyroid patients and seen wonderful results! I am yet to feel any sort of relief and I feel like I have tried everything. Maybe the T3 will start to have a positive effect soon. I'm sure I might feel a bit better if only my period would start! Lord only knows why that is so delayed now. I'm boring myself with all my moaning! I'm so glad you feel amazing on T3. Appreciate you replying. Enjoy the long weekend!

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Hi. If that's the case, then that means you are not converting T4 to T3. Question is why? Things triggering your autoimmune response might be the cause. What ever that is needs to be addressed and treated. Are you following an autoimmune diet, no gluten, soy, or dairy? Or are you eating some here and there? What have you been exposed to lately?

Your bloods are super important and will help tell the tale. Don't trust any doctor who does not do complete labs and says "trust me". Run the other way instead! What are your antibody levels? High levels can interfere with conversion of T4 to T3.

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Sorry, I missed this one. Yes, I am following gluten, dairy and soy free diet. Probably exposed to too much white wine though LOL! Been avoiding alcohol but the last week has been so flipping miserable, it was the only thing to cheer me up!

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Regarding your autoimmune flare, this might be from something else. Seasonal allergies could trigger your Hashimoto's response. A virus or other illness. Have you had your thyroid antibodies tested lately? I am going thru exactly this right now myself. At first I had a virus of some sort, complete with major temperature problems and body aches. We tested my thyroid and TPO. My TPO had jumped to over 6500. I was shocked, sad and puzzled. Then found out from an abdominal ultrasound that I have a small kidney stone. Hmm. I had several UTI's last year. Well, my aches and temperature issues continued. Soon I started to have urethral burning and frequent urination. I've now been diagnosed with the start of a kidney infection. No where near as the major kidney infection I once had that almost killed me. My point is that many, many things can cause an autoimmune response.

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So sorry to hear that SS, I will really keep all crossed that you get better soon, you poor thing. Willing you well.x

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Thank you SLC76. Now I know why my TPO became so high. Darn broken immune system. I wish it was like a car that you could take to the shop, get it fixed, and drive away with a perfectly operating vehicle. :-)

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Me too! Wouldn't that be nice :)

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Regarding delayed period. Endocrine hormones (includes your thyroid) have a relationship with reproductive hormones. Both hypothyroidism and hyperthyroidism can lead to menstrual irregularities because thyroid hormone levels can effect the metabolism of female hormones and interfere with regulation of ovarian function. Thyroid disease can cause menstrual problems and female hormonal problems can relate to thyroid problems. Because of their hormonal relationship, balance is key.

When I was diagnosed with Hashimoto's, I was not put on medication despite low FT3 and low FT4, and most importantly TPO over 1000. Over the next four months, I had two delayed periods. One cycle was almost 60 days. I also became really sick from head to toe. No doctor could figure out the cause. I was told my thyroid was fine and that I should not take medication. Month 5 I went to a new doctor, got some incredibly horrible blood results, and started T4. Three days later, started T3. Those blood results showed that my TPO had risen to over 6500 without medication and I was barrel bottom with FT3 and FT4. TSH was well over top range. My period regulated from then on out until early last year I started missing my period again. My FT3 and FT4 had dropped. TSH had risen a little. TPO was climbing. Turns out I had a major UTI. Once that was cleared, my thyroid levels became optimal again and TPO dropped down again. My period resumed it's normally programmed schedule.

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When was the last time you got complete thyroid labs taken?

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February 2nd was the last time I had bloods, I'm going to get them done again this week privately to see where I am at at the moment. My TPO and Thyroglobulin results have always been way above normal but because the TPO are over 600, I don't know the actual figure, apparently they don't tell you anymore.

Sounds like you have been through the mill as well! I just want my life back, like we all do. So sad that so many people are suffering :(

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Hi. 600 is as high as the lab can test. My lab can only go to 6500. 600 is really not good then. Who knows how high your TPO really is? During my summer of no medication, I had my TPO tested at a different lab than normal. That lab had a high range of 350, or something. I was >350. That numb skull doctor said I was fine. I asked about my low FT3 and FT4, he also said they were fine. My TPO was something like 2.0, according to their lab. That doctor could not figure out why I was so sick. But just 6 weeks later I got accurate labs again at my original lab, showing higher than 6500. My TPO did slowly start to go down, but it's never gotten lower than 1000.

Yes, I certainly have! Hang in there, you can get much of your life back. I used to say exactly the same! I wondered if "this is it" for me many times. Once my free's became optimal, I've felt really good. I also had extreme intolerance to exercise or strenuous activity. I couldn't move my body for many days.

What are you doing to try to improve your antibody levels? Selenium is "supposed to" help. The problem is, there are not enough solid supporting studies. It is no miracle cure. There is none. I've taken it for years and just look at my TPO. ;-) In reality, too many other things can interfere with your immune system and cause an autoimmune attack. Reducing those causes is the biggest thing you can do to help. Reduce stress, don't work out too hard or too long, take time off to completely relax and rest, get 7-8 hours of sleep every night, listen to your body and take naps or sleep more if you feel tired, avoid toxic people who cause us stress, just say no to things if your body is telling you to say no.

The lowest my antibodies were was last summer when I was on prophylactic level of antibiotics following several UTI's. I have read some research article indicating that low dose antibiotics for those prone to infections can reduce antibodies. In my case, I believe that taking antibiotics lead to a reduction of bacteria in my system, lessening the stress on my body, and then my immune response reduced. I am awaiting an appointment with a urologist. I wouldn't be surprised if I'm put on prophylactic antibiotics again, due to infection and kidney stone. If so, I will anxiously be awaiting my next TPO labs to see if my theory stand correct.

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Will be very interesting to see if your theory stands correct....I will look forward to hearing about it.

I take selenium and a host of other supplements, vits, omega's etc it costs a flipping fortune. I'm currently on steroids for adrenal gland support too, so in theory that should dampen my immune system but who knows what is really happening!

Glad you feel it can get better, I am struggling to see the light at the end of the tunnel at the moment but you've got to keep fighting! I've got a life I want to live and loads to achieve still, I must get better.

Reducing stress and work hours is a wee bit tricky because I am self employed and have to work but I am definitely cutting back socially a bit, mainly due to just being shattered and unable to go anywhere at the end of the day.

Thank you again.

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A agree! A flipping fortune! I also agree with your theory about steroids and the immune system. You might just be on to something. Did you have testing showing results indicating problems? How much are you taking?

Yes! It can get so much better! There was a time that would not have believed anyone who told me it can and will (if your thyroid levels are in the right range, especially). Just take things day by day. I know how hard it can be when the suffering is the same day in and day out. You WILL get better!

I also cut back social engagements. People and events can suck the life out of you and then you're left with autoimmune response for days. Many people don't understand, since they don't have a chronic disease or have an autoimmune disorder. I learned that this is fine. If they don't understand or aren't supportive, bye. No need for people who guilt you and cause additional unnecessary stress.

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I’m on 5mcg steroids and the doctor wants me to take more to help my body adjust to T3 but I don’t want to keep pumping steroids down! My morning cortisol levels were very low , that’s why I’m on them.

Would love to say bye bye to many folk but I’d be doing that everyday in my industry. Most people don’t care or don’t wanna know to be honest, so I try to keep it to myself in the main!

Will hope you are right and it will get better at some point :)

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I'd be skeptical, too, if I doctor tried to put me on steroids, thinking it would help my body adjust to T3. I probably wouldn't do it. Sounds like something else is going on and interfering with T4 conversion and T3 absorption from medication. Can you think of anything that might be the cause? T3 should almost instantly make you feel better and your levels should slowly rise. If it doesn't then need to keep trying to figure out why. You obviously need more T3, but need to figure out what the block is. BTW, my cortisol was low too. I never too steroids. My fatigue slowly went away after my thyroid hormones were optimized. So did the exercise intolerance, joint pain and swelling, muscle pains.

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No, I don’t know why! I’m trying everything. Certainly don’t feel instantly better on T3! But I am only taking 5mcg once a day. Maybe not enough to make a difference yet. Fingers crossed I see some change next week. Do you split your T3 dose?

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5 mcg once a day could be why. It is activated in your body a very short time. I only survived on 5mcg for two days. It helped me tremendously over just the plain T4, but I still felt so awful. I was increased to 10 mcg am for awhile, and then we added an additional 5 mcg around 3 pm. My levels are now so good and I feel so great as a result that sometimes I don't take that additional afternoon 5 mcg.

You simply might not be taking enough to see improvement. It's not cumulative, so if you're not getting enough each day, you'll still feel bad months into the treatment.

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So you are on 10mcg a day and sometimes an extra 5mcg in the afternoon? Is that right? And how much Levo do you take?

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Yes. 88 mcg levo.

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I just noticed your'e taking 150 mcg or whatever your current dosage is and you're at the top of the range, this indicates you are over medicated by T4. High FT4 can cause all sorts of symptoms, just as high FT3 can. Or opposite, too low causing symptoms. 150 mcg is a pretty large dose. In comparison, I am taking 88 mcg levo and 10 am and sometimes a 3rd 5 mcg lio in the pm.

How long has your FT4 been so high? The imbalance of too high FT4 and too low FT3 could interfere with your period.

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A few months I would say but without checking again this week it is hard to know for sure. I didn’t think you could get doses of 88mcg of levo? So you’re on 88mcg levo and 10-15 mcg of T3? Is that right?

I will get tested again this week and see where I am!

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Correct. It's possible you can't get that dosage in your country. Some pharmacies don't stock it, but they can order it for you.

A few months is a long time. What was your dose prior to 150 mcg? 150 is getting up there. With those blood results being so high, I'm surprised the prescribing physician didn't lower your dose. Once you make a medication increase or decrease, bloods are supposed to be checked every 6 weeks to make sure your levels are in the right range, as well as considering your symptoms against your blood levels.

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Thyroid brain!!!! Last blood test was Feb 2nd. My own doctor won’t test me again for a year! I will get them done privately though. I hear what you are saying, I will get tested again this week and if FT4 is still very high I will drop dose of Levo. Can’t even be bothered to check with any doctor, I have totally lost faith in the NHS and private care. I’m sick of them all! My results do tend to jump all over the place though. Will be interesting to see.c

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:-) :-) Are you kidding? Not test you for a year?? If I had that happen to me, I'd probably be dead. Seriously! How could a doctor ever gauge the effectiveness of medication that way? Or what about the patient who ends up in cardiac arrest because of improper medication and they weren't tested but once a year? I feel so bad for the patients. Who in your country regulates that you can only test once a year? Is it the doctor just making things up as they go, your insurance company (do you all have insurance companies over there?), your government or the NHS? Over here, it's pretty standard to get your labs done every 6 weeks until you are stable in hormone levels and stable in symptoms. Some patients don't realize that most of our insurance companies over here will allow testing every 6 weeks. They also don't realize that these labs must be done every 6 weeks until you are stable and as medication is adjusted. Some doctors will automatically submit the lab order every 6 weeks. Others will look at the date of your last labs, consider your current symptoms, and then run the labs. Patients can also request their labs to be conducted every 6 weeks.

Good for you for doing your own labs! I'd do the same if my doctor wouldn't run labs for a year. Were your labs jumping all over the place while on the same medicine dose? Did your TPO happen to increase or decrease at the same time?

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Hi, my NHS GP is simply awful! My results would change dramatically with or without change in the dose. I have only been on medication for 7 months and they put me on 150 to start with and it was way too much of a shock to my system, so after my own research I went back to my doctor to explain I needed to start on a lower dose and gradually increase. They didn’t like me telling them what I needed and have been very rude and quite aggressive ever since. They don’t care what my symptoms are! The minute I had one result that was in range, they said no more testing for one year! Only I felt dreadful and so I went privately and discovered that my TSH had rocketed again and T4 was very low. So again I complained to them and the doctor actually lied when I made a formal complaint, you honestly couldn’t make it up. My gp has made my life much worse due to lack of knowledge and understanding. I have no idea if my TPO has gone up or down because every result has just come back over 600 - no actual figure!

I don’t have private insurance sadly but I have paid to test pretty much every month bar the last 2months. I’ve been quite busy with work and got fed up with driving to the other side of London for tests and thought I’d give myself a mini break from needles LOL. Defo going this week though!

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OMG! You poor thing! They STARTED you on 150 mcg?? They could have killed you. I'm so glad you are here to say you are alive and kickin'. I can not EVEN imagine how much of a shock 150 must have been to your system! That is just awful. Yeah, I bet they didn't like you educating yourself about your thyroid. Some doctor are so irresponsible, they should have their licenses revoked. Can you switch to a different doctor? What's the point of continuing to go to that loser? Surely there are other options where they won't try to kill you, doesn't lie, is not located on the other side of London, and they are knowledgeable about thyroid.

With your TPO, if the highest the lab can record is 600, then yeah, you'll never know exactly how high your TPO is. Same with me. All we both know is that it is much too high, so high, it can't be recorded. Not good!

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