I have been treated for hypothyroidism for the last 51 years, since the birth of my first child. For 12 years, T3 only, for 18 years T4 only, and for 19 years T3 only (since menopause). When I got a diagnosis for osteoporosis, I asked to have a T4 supplement for a T4/T3 ratio that would slow the parathyroids. Eventually, my doctor prescribed 50mcg levo, which I have been taking for about 6 months.
A year ago this October, I got a third Covid booster prior to a trip to Asia, and that booster caused havoc with my thyroid. Eventually, the effect settled to a lot of pain in my legs, which ebbed and grew in relation to the time elapsed since a dose of T3. In January, when I eventually went to a doctor because walking was so difficult, the doctor implied that it was high blood pressure (I do not have high BP), but did order a thyroid panel. The TSH was <.008. I am ashamed to say that this was the first time I started to pay attention to my test results, but it was the first time I felt really, really bad.
TSH is still <.008. FT4 is 0.76 (0.75-1.54). FT3 3.29 (1.71-3.71). Ionized Ca 4.7 (4.5-5.3). The blood calcium is finally dropping. I can function on my current dosage of 50 mcg levo and 60 mcg Liothyronine, spread over two days. My doctor wants to halve the T3 dose for 2 weeks and then again halve it to see if the TSH comes up. I am afraid to go below the current dosage because of the leg pain and exhaustion I feel when I am low in the Liothronine. Is the doctor's reasoning valid enough to risk the effects of being low in T3?
My daughter has had Hashimotos for 20 years and her TSH is undetectable. She functions well on NDT. My doctor says she can lose her license of she prescribes it.
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Your doctor is wrong. Don't do it. They do not know what T3 is, which is why they're so scared of it, and they do not know how it functions.
Of course your TSH is low on that dose of T3 because that's what T3 does: it suppressed TSH. Why? Because when you are taking adequate T3 you don't need TSH anymore.
TSH has nothing to do with bones. Low TSH does not cause osteoporosis. It's not even a thyroid hormone. It is a pituitary hormone and it has two functions, and two functions only:
1. When the pituitary senses there is not enough thyroid hormone in the blood, it produces TSH - Thyroid Stimulating Hormone - to stimulate the thyroid to make more thyroid hormone. When there's enough thyroid hormone, the pituitary eases back on the TSH.
2. The thyroid makes mainly T4, but it also produces 20% of your T3 needs. The rest comes from conversion of T4. TSH stimulates the proteins that bring about that conversion.
When you have a fully functioning thyroid, euthyroid, the TSH stays at around 1 to maintain a steady production of thyroid hormone.
When the thyroid starts to fail, and T4/T3 levels start to drop, the TSH rises to try and get the thyroid to make more.
When you start taking thyroid hormone replacement - levo, T3, NDT - the TSH drops again, often becoming suppressed because the pituitary senses the exogenous hormone, and the thyroid stops working. So, without a working thyroid, you do not need TSH to stimulate the thyroid. And when you're taking T3, you don't even need to to initiate conversion.
And, it is important to understand that hypos often need more than euthyroid levels of thyroid hormone to make them well. So, no point aiming for the euthyroid levels of T4/T3 around mid-range and TSH around 1. You need what you need and less will keep you unwell.
Further more, if you have been on T3 only for 19 years, then your TSH has probably been suppressed for 19 years, too. When the TSH is suppressed long-term, the HPT axis (the feed back loop that stimulates the pituitary to make TSH) becomes down-graded. So, the odds are that even if you stopped all thyroid hormone replacement, your TSH would never rise again. So, just how far is your ignorant doctor prepared to go to get the pituitary to produce a hormone that you don't even need?
And think about this - or maybe your doctor should think about it - if your heart and bones really needed TSH, would the body allow it to become so easily suppressed? Is that logical? I think not.
As someone who needs high dose T3-only to function I absolutely agree with greygoose
It has only been beneficial as far as I'm concerned....despite my doctor's warning I could kill myself by self medicating.
T3 is no more harmful than any other medication IF USED CORRECTLY!
"Being low in T3" is a health risk and the potential cause of much ill health.
BUT....the T3 must reach the nuclei of the cells where it attaches to the T3 receptors before it gets to work!
Many medics fail to understand this.
For good health almost every cell in the body needs to be flooded with T3 by way of an adequate and constant supply.
Unfortunately there are no tests to check cellular T3 levels so we are left with serum level measured as FT3, which for some people who have a form of thyroid hormone resistance, does not tell the whole story! They may need a supraphysiological dose....the suggestion sends most medics running for the hills!!
Signs and symptoms are vitally important as diagnostic tools but are often overlooked by medics who cannot see past numbers on a screen!
Your medics sound clueless!
T3 must be taken daily and in a consistent dose so I don't understand 50 mcg levo and 60 mcg Liothyronine, spread over two days.
Your doctor's intention to cut your T3 dose to raise TSH shows a complete misunderstanding of both T3 ( thyroid hormone) and TSH ( pituitary hormone)
Your FT3 is in range so you are not overdosed ...so long as you don't have symptoms of overmedication.
If this doctor reduces your T3 dose to 15mcg - My doctor wants to halve the T3 dose for 2 weeks and then again - I think you will suffer quite badly! Your metabolic rate is likely to fall and your exhaustion will return....as will other symptoms.
Also bear in mind that the heart needs a lot of T3!
Vital to optimise Vit D, vit B12, folate and ferritin to support thyroid health....have these been tested? I suspect yours are low....e.g. vit D/ bone pain!
Is the doctor's reasoning valid enough to risk the effects of being low in T3?
Absolutely not!
I suffered for decades from a number of health issues which eventually left me barely able to function.
It was thanks to a small group of very knowledgeable and experienced members here who finally helped point me in the right direction, that allowed me to discover I need high dose T3-only to allow me to function....long story. They know who they are and these amazing people very possibly saved my life.
Doctors failed me from about the age of 4 years old....I've lost count of the number of treatments I've had both NHS and private and the number of different (wrong) diagnoses I've been given. The answer turned out to be T3 but I had reached my 70s before I discovered this.
You know your body better than anyone else and if it tells you something is wrong....listen!
This doctor is doing you absolutely no favours.
Science shows TSH is not a reliable marker for thyroid diagnosis yet it is used as a quick cheap way of monitoring the disease.....causing many to suffer
I'm afraid I'm guilty of ranting frequently about the importance of T3 and the failure of medics to understand and accurately diagnose thyroid disease.
Suggest you get vitamin D, folate, B12 and ferritin levels tested
Low vitamin D causes bone/leg pain
Agree absolutely with greygoose
Change doctors not reducing T3
Do you feel the addition of Levo was beneficial. You could try 25mcg increase
Or it could be you don’t need any Levo at all
Some people are better on just T3
If you were going to try small 5mcg reduction in T3, you would need Ft4 (levothyroxine dose) higher first
When people are on mainly levothyroxine plus smaller dose T3 (usually 15mcg or 20mcg per day) …..then Ft4 (levothyroxine) often needs to be at least 50-60% through range
Can I ask, if you have an atrophied thyroid, a dio2 polymorphism, and your test results show you’re not converting T4 to T3, is there any point in taking T4 ?
I take 50 mcg T4 daily, and 1/2 of 25 mcg T3 twice on one day and 3 times on the next. There are a couple signals to tell me it is time for the next dose of T3. D3 and B12 are in the good range. Ca levels have been borderline hypercalcemic for most of my tests, for the last 5 years, even though I do not take supplements and keep away from high calcium foods. The Ca level dropped slightly after starting on 25 mcg T4, and seems to be in a better place with 50 mcg. There isn't enough current data to know if this is a trend or a one-off.
The reason I avoid high calcium foods is that 5 years ago I had a couple miserable outbreaks of Hashimotos itch, which were mitigated by avoiding dairy and cabbage, and I do not want that itch again! Although I believe the itch was precipitated by high fluoride toothpaste in one instance and by using up old T3 meds in the second instance, the itch did not go away until I restricted the calcium intake. If I do eat cheese now, I will start to itch, but mildly. Our drinking water is hard, so I do get adequate calcium.
"50 mcg levo and 60 mcg Liothyronine, spread over two days". This is confusing, is this your daily dose or is your daily dose half this. LT3 is about 3x as potent as LT4 in suppressing TSH. The degree of TSH suppression depends on the dose.Normally reducing your dose will raise your TSH but as your TSH has been very low or a long time it will take many months to recover if it does at all. In any event the proposed reduction is far too drastic. When we are taking T3 in supraphysiological doses it is always a good idea to try reducing a touch on regular occasions to ensure we are on the minimum dose. High doses of thyroid hormone with a suppressed TSH does cause osteoporosis (and cardiac problems). The difficulty comes in determining whether TSH remains low because of too much hormone or because of a pituitary problem or because of long term suppression. If you are taking 50 mcg LT4 plus 60 mcg LT3 daily this will equate to 230 mcg LT4 and will most likely cause osteoporosis. (TSH also directly stimulates bone formation although this seems to be a minor effect).
I can see your doctor's problem, they have to follow their honest opinion and not prescribe if they believe it is harmful. On the other hand you need high doses of thyroid hormone to survive. This happens a lot in medicine, a treatment that causes harm is needed. The best we can do is use the lowest effective dose and try to mitigate any effects such as exercises to reduce osteoporosis.
What do you mean by a T4 / T3 ratio that would slow the parathyroids? I've never heard of that, it doesn't make sense. If you have abnormal parathyroid function it should be addressed.
If you are taking 50 mcg LT4 plus 60 mcg LT3 daily this will equate to 230 mcg LT4 and will most likely cause osteoporosis.
Surely this depends on how much of that 50 mcg T4 and 60 mcg T3 she's absorbing. Absorbing into the gut to begin with. Her FT3 isn't over-range. And, just because she's taking it doesn't mean it's all getting into the cells. And, there's no way of checking that. If find this a bit scaremongering too, to assume that just because it's a high dose it's 'likely to cause osteoporosis'. That doesn't follow at all.
LT3 is very well absorbed. I forgot to ask how long after taking the LT3 the blood is taken. It's a difficult problem but I think it's best to have the blood taken midway between doses to get a rough idea of average levels.Too much hormone will likely cause osteoporosis because that is what the evidence shows. We have to exclude studies that look at hyperthyroidism because the parathyroids are sometimes affected distorting the results. I use the term 'likely' because there are rare cases of e.g. resistance to thyroid hormone or disorders of cellular transport proteins that can affect response to hormone.
Having supraphysiological doses of thyroid hormones carries risks. Sometimes this is necessary, as in my case, but it is undesirable. These cases highlight the need for good research into why such patients need higher than normal doses of thyroid hormone. We may need high doses but we shouldn't ignore the risks, sometimes there has to be trade offs.
RTH refers to genetic polymorphisms, they are rare. Not all cases are detected but genetic testing gives an idea of how common it is. Nearly all cases are due to polymorphisms in the TRB1 receptor so the resistance is in tissues that express this receptor. Another form of resistance is caused by endocrine disrupting chemicals and again they tend to affect the TRB1 receptors.
A pituitary that fails to secrete as much TSH as it should also causes hypothyroidism. There is good evidence that TSH stimulates type 2 deiodinase (T4 to T3 conversion). The brain relies on this but some other tissues do not.
The important point is that all these causes of hypothyroidism affect different tissues to different extents. Often the brain or parts of it are affected to a greater extent. Thus, if you need to take a lot of hormone and your TSH becomes suppressed it may be fine for the brain but could be too much for other tissues such as bone. High doses, high thyroid hormone levels and low TSH are warning signs. You may not have a choice but there are risks.
parathyroid and thyroid are two different things/ glands. Have you ever had parathyroid hormone , calcium and vitamin D tested from the same blood draw ? If not, you should.
Yes, once in June, 2023. PTH-intact 62 pg/ml (range 16-77), Ionized Ca 5.0 mg/dL (4.5-5.3) Ca 9.6 (8.6-10.2). D25, 75ng/mL. The only meds/supplements I was taking were Fosamax for the osteoporosis; 60 mcg T3 over 2 days , and 25 mcg T4 daily.
This still doesn't make sense. Are you saying that you take 30 mcg a day? With T3, if you want it to do what it's supposed to do, you have to take the same amount every day.
"I take 50 mcg T4 daily, and 1/2 of 25 mcg T3 twice on one day and 3 times on the next". This equates to about 144 mcg levothyroxine daily which is a touch over average but not a large dose. I would switch to taking half a tablet in the morning and three quarters at bedtime (I find the bedtime dose improves sleep). You can cut or snap the tablets, it doesn't matter if they are a little unequal.As you are not on very high doses your doctor's suggestion is way too drastic. Doctors are got at by endocrinologists so I have some sympathy for them. There are many causes of osteoporosis and at these doses you can't say it is due to too much hormone. It would be a completely different story if you were on 50 mcg LT4 + 60 mcg LT3 daily.
I would suggest you make sure you are on the lowest dose than you need and suggest to your doctor that you set up a plan to improve your bones. I think they can prescribe medication to strengthen bones and you could adopt an exercise plan (if you don't already).
Thank you Jimh111. I am trying to lower the T3 to as little as I can tolerate. My schedule is regular in the morning, but in the afternoon, the time depends on how I feel, and this shedule works on normal days. My desire is to have a T4/T3 ratio close to that in NDT. (My doctor absolutely refuses to prescribe NDT for fear of losing her license.)
I know the idea of the parathyroids having a relationship to the thyroid gland has been poo-pood, even here, but they hug each other for a reason. I have found that high calcium seems to slow me down, as if the calcium is trying to put the brakes on the T3; so I suspect the parathyroids are regulators of T3 activity. Since my previous dosage was T3 only (and the high calcium was from the bones), I think the parathyroids read the T4/T3 ratio as their signal to activate.
The addition, then increase, of T4 seems to be lowering my blood calcium levels, even though taking the additional medication seems unnoticeable to me. However, after taking 50 mcg T4 for 3 months, the issues caused by the reaction to a Covid booster started to diminish. It is hard to say, because the process is so slow.
There are several papers that show links between thyroid hormone and PTH, for example, this one ncbi.nlm.nih.gov/pmc/articl... which I don't understand. T4 reduces D2 activity and so taking it may alter PTH levels. I suspect it will be very challenging to understand this subject.
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