Hello everyone: Hope you’re all doing as well as can be. So, I’m presently taking 90 Erfa + 25 Synthroid, all at once upon waking. I need to make some changes because I’ve lost half the hair on my head, gained 7 lbs and can’t loose the weight, diet has not changed. Been on NDT for the past 2-3 years, previously on Synthroid + Cytomel. No longer suffering from fatigue but the hair loss is depressing me, also NO motivation and difficulty falling asleep at nights.
Vitamins are all good. I supplement with a good B -complex, vitamin D3/k2, magnesium, cod liver oil, B12 sublingual 500 three times per week. B 12 near top of range. Recent labs (Jan. 15). Tsh: 0.01 (0.32-4.00). FT4: 12 (9-19). Ft3: 5 (2.6-5.8). I’m now wondering if an increase is recommended. Thinking of adding 15 Erfa, or adding another 12.5 of Synthroid. I would eventually like to drop the Synthroid and stick to Erfa only. I’m not able to split my Erfa doses because the evening dose makes me feel strange when I have tried to divide my dose. Would that increase dose to t3 be too much to take all at once? Endo previously told me I would eventually need 120 Erfa when I drop the Synthroid.
I’m beginning to experience some fear when I think about making any changes. I’m afraid to make any mistakes and return to feeling under medicated or over medicated. I’m just not feeling that I’m where I should be. The lack of motivation and hair loss is crippling and is interfering with my sense of well-being.
Thanks to anyone that will read and and give me some advice/suggestions. SlowDragon greygoose and others.
Hope you’re feeling better greygoose
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Rosebud1955
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Nobody can tell you which dose you will eventually need of either Erfa or Synthroid. Doctors like to try to fit us into a mould and treat lab results rather than symptoms. Our bodies do not work like that. We are humans, not machines!
How can your endo know how effectively you will convert T4 to T3? Remember, NDT is ca 80 % T4 and 20 % so you will depend on conversion to some degree even if you are getting direct T3 from Erfa. Some hypothyroid people with a certain degree of cellular thyroid hormone resistance will need a lot more T3 than you find in 2 grains of Erfa. You may even need pure T3 added to Erfa.
How can your endo know how much T3 is in your cells? He cannot know because we cannot measure hormone levels in cells, only in blood.
So your endo is just guessing. Unless he is a fortune-teller with a crystal ball🔮
Even if I firmly believe that treatment should be individualised and not standardised, an average maintenance dose of NDT is often said to be +/-3.5 grains (210 mg). Average means some need more and some less. Your endo cannot possibly know in advance which category you will fall into, or even if NDT is the best treatment option for you.
I suspect your endo is worried about your TSH getting too low (as usually happens when you take T3). When you take T3, you need to go by symptoms and the free T3, not the TSH.
Thanks for your response! Yes, he is a diabetes specialist with limited thyroid knowledge. He is fixated on the tsh for sure but unfortunately I’m stuck with him. He’s only useful to write my prescriptions and order labs. My conversion was VERY poor initially, that’s why I started taking T3 ( thanks to the surgeon) that made the suggestion to him. I have chronic Lyme Disease, so I’m sure my cellular demands are not being met. I’m so tired of fighting and being portrayed as a hypochondriac. I just want the hair loss to stop and to stop gaining weight. I don’t have a thyroid so I’m missing that extra bit of T3 that would be produced by the thyroid. Yes, my Endo thinks he’s God and I’m sure thinks he has a crystal ball. So frustrating.
Have you considered dropping the levo and adding T3 to your NDT instead?
I had the same problem with NDT: too much T4 and not enough T3. And NDT did make me lose my hair, just like you! I have no idea why. It also made me put on a lot of weight. It just doesn't suit everybody.
I’m beginning to experience some fear when I think about making any changes. I’m afraid to make any mistakes and return to feeling under medicated or over medicated.
That is why you should do it very slowly, monitoring your responses along the way.
I'm ok, thank you, but still struggling to shake off the Christmas flu! It just doen't want to go away.
Hi GG, glad to hear you’re on the mend! Yes, I’m considering dropping the Synthroid. I was thinking that since my Ft3 is good, maybe I needed more T4. Since I take everything all in one dose, I was afraid to take too much T3 all in a single dose. As it is now, I’m taking a total of 12 mg of the T3 & 77 of T4. That’s my calculation, please correct me if I’m wrong. I tried Cytomel T3 with Levo and did not get on well with the cytomel. That was before I found this wonderful forum and was just relying on my ignorant Endo. So now I’m afraid of cytomel. If I decide to go the Erfa route only, what dose would be best. I’m thyroidless and weigh 80 kg. My pre thyroidectomy weight was 72 kg. I must confess, I’m a bag of nerves. So insecure and scared to make changes. I have been making changes slowly: no more that 15 Erfa or 12.5 Levo ( never at the same time) I’ve learned my lesson the hard way. This thyroid journey has worn me out. Years to get diagnosed and now 7 years of the ups & downs. Totally exhausted🥲. Thanks for your response, much appreciated!
Nobody can tell you how much Erfa you will need. It depends on so many things, including:
1. How much T3 you need for your metabolic needs.
2. How well you convert T4 to free T3 (instead of reverse T3 aka rT3).
3. How much else is going on in your body (inflammation, insulin resistance etc) increasing T4 to rT3 conversion and possibly mening you`d need less T4 and more T3 (if you take mostly T4 and most of it is converted to rT3, you end up with too little T3).
4. How much thyroid hormone makes it into your cells where it is needed.
5. Your adrenal status (cortisol dysregulation messes with T4 to T3 conversion.
There's no way of calculating what dose you're going to eventually need in advance. You just have to increase slowly until you feel you get that. Your FT3 may look good on paper but that doesn't mean its the dose you need. And first of all, you have to decide in which dircetion you're going: reduce the levo first and then add more NDT - or - reduce the levo first and add in a little T3. If you reduce/stop the levo your FT3 is probably going to fall a little, but there's no knowing by how much. You just have to try things and see what happens.
As to taking too much T3 in one go, 12 mcg isn't a very large dose to take in one go. Adding 5 mcg to that probably won't have any adverse effect if you take it all at once.
Hi! I love the responses above and will chime in with what resonates with me.
Two things - have you checked your iron/ferritin lately? My daughter (not hypo, no antibodies, but we discovered was iron anemic with near non existent ferritin) saw her hair thinning. Me too.
We have both been carefully and scientifically increasing our iron intake and as our iron improves, our hair is recovering.
Re to your Ts
I too am increasingly scared to change things : ) Soooo scared and conservative about it all. As a result I am taking at least 6-8 weeks if not more for the smallest, single changes. Would rather feel this slow and steady persistence of symptoms vs worry about doing something that will set off a chain reaction that will over do it, but not knowing I’ve over done it until weeks or months after the fact.
I’m early days - only about 18 months since I started Levo… where I was left on 50 mcgs for a full 9 months until I found this forum. The forum has given me confidence and peace to now decipher what is going on in my body and how long things take to settle and the biggest thing- there is no short cut! Trying to speed it up just results in setting us back.
I’m finally not freaked out that I still have fatigue and brain fog because I know it just takes that long. My family asks me - but you’re feeling better right? I used to feel worried when they asked me that as it was hard to explain to anyone just how long our bodies take to adjust hormones.
In the last 4 months I did two tiny sequential increases from 50 to 62.5 and 62.5 to 75 mcg Levo.
And the last 2 months on that second little increase has been calm… I still have a long way to go… I might even be starting to go through menopause, I had a flu a month ago , so lots of other variables coming at me. So much fun lol!
But I mentally feel so calm knowing I am staying the low and slow course for my Ts. Which will then allow me to methodically make decisions that are both data-led and symptom-led for the other things.
Lastly re T3
I was hastily put on T3 9 months ago (pre-forum) - added 10 mcgs a day. I wish I hadn’t started it and wish I didn’t jump in at 10 mcgs at once. But only these past few weeks have I noticed the palpitations fading. I’m sure I’m getting closer to full replacement, but also think I’m finally settling on the dose I am atafter all these months, With every change, every week staying the course has always been the right decision.
Just sharing my story, and how much my titrations have been, to give you one more personal experience to consider.
I supplement according to the suggestions on this forum.
I’m thinking that NDT might not be working for me. My Endo makes me feel uncomfortable when I try to make any changes, very condescending. When I tried Synthroid and Cytomel he started me on 10mcg and that might have caused problems for me. Now I’m scared to even give it another try. Yes, me too! That was before I found this forum, I was totally clueless!
Broadly similar experience and I agree with your assessment. Naturally we are all in a great hurry to get better. I think this applies to lots of medical issues these days. This idea that there is a ‘magic bullet’. We don’t take time to recuperate etc etc. However with thyroid issues it’s much thornier. We really don’t want it to be! It requires careful tailoring to our needs. We can’t even fully depend on anyone else’s experience because we are all individual. I followed an endo’s advice and if I thought it was awful before …….. it’s taken me more than a year to get not quite back to where I was. They don’t seem to have a blooming clue.
Try to take your time Rosebud1955 . Take each step as carefully as you can and avoid making decisions about medication in desperation! Easier said than done.
Would a hormone balancer like dong quai help with hair loss? Anyone know if they would interact? It helped me go through menopause on levo thyroxine, I get terrible side effects from the t4 tablets, just changed brand to appease endo, but think I'm worse. I have ordered ndt, so very interested in following others who have switched.. Agnus cactus, red clover and dong quai are all hormone balancers, I found agnus cactus and dong quai very good, haven't tried red clover yet
Thanks for your suggestions. Not sure if I want to try any hormone balance til I get my thyroid hormones maximized/balanced. I tried ashwaghanda I the past but don’t even want to start that again. I want my symptoms to be sorted out first. Also, my Endo is sometimes reluctant to order labs so I would like to be able to get labs done to monitor my hormones. I’m post menopausal and he not even willing to check my hormones. So frustrating! Good luck with trying NDT. I hope it works for you. It’s surely milder on the body.
Wish I had that option. I see the Endo twice a year and that’s all the labs I can get. He is even reluctant to order labs after a dose change. I literally have to force his hands. I could get labs done by the naturopathic doctor but each visit is expensive as they usually want to charge for a full visit. My prescriptions are written by the Endo but I have to pay out of pocket for the NDT. My drug plan only covers Synthroid. Unfortunately that’s the price we have to pay to remain semi healthy when living with this dreadful disease. The Government is now paying for Diabetic medications and birth control pills , I guess thyroid disease is not as important to them. We have to take thyroid hormones for life, so I don’t see why they don’t cover all forms.
Because ndt isn't big pharma, so they don't make a fortune out of us, unless we plough on with their synthetics that don't seem to help alot of us, in fact my body is rejecting levo thyroxine with terrible side effects .
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