Hello everyone, this is my first post here. I’m a 28 year old male.
I’ve never been diagnosed hypo, but I’ve felt hypo for a long time, with low temperatures and a huge dip in sleeping heart rate. Never had hot flashes though, until a few weeks after I started taking thyroid (NDT) in December 2020.
When I reduced the thyroid for a few weeks, the hot flashes continued. However, after a few more weeks, I introduced cynomel, which is T3 only. At this point, the hot flashes decreased for a few days. Then I reintroduced NDT along with the T3, and about two weeks later the hot flashes came back. I’ve had them ever since, although some days they seem to stop and not occur. I can’t figure out a rhyme or reason.
Anyone experienced something similar? I’m reluctant to increase the dose because the hot flashes didn’t start until after I began taking thyroid. Plus, the thyroid has lowered my cholesterol to 184, and I don’t want to go lower. Do you think a higher T3:T4 ratio might help?
Thanks.
Tyler
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Vileplume
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So, you are taking thyroid hormone containing both T3 and T4 without a proper diagnosis? Have you ever had labs done? If not, it ´s impossible to say why you reacted the way you did. I take it you have self-diagnosed and then decided to self-treat...the problem is you have no way of knowing if you were hypothyroid to begin with. It sounds a bit risky to me. Your current symptoms could be a sign you were never hypothyroid to begin with. That would be impossible to know unless you had labs before starting NDT.
I have to say I think you are doing this the wrong way. First, you start NDT without a hypo diagnosis; then, after hot flushes appear, you add T3...why??? You should not add T3 to NDT unless you have low FT3, and you should not take NDT unless you know you are hypothyroid to begin with. My impression (from what you write) is that it´s just trial and error...you add and combine drugs without any way of knowing you even need them. There is no way you can decide you are hypothyroid based on symptoms that could be due to any number of conditions.
Thank you for your reply. You are correct that I have not received a hypo diagnosis from a doctor, because I do not believe the exclusively TSH-based diagnosis that many doctors use is an effective one. I based my self-diagnosis off the work of Dr. Broda Barnes and Dr. Ray Peat, who diagnose hypothyroidism with consideration of the following symptoms:-body temperature
-pulse rate
-TSH
-cholesterol
-energy levels
-mood
-digestion
I also did have labs before starting thyroid. My cholesterol was 206, my TSH was 1.3. I understand that TSH of 1.3 does not indicate low thyroid function, but according to Dr. Ray Peat, the healthiest populations in the world have TSH’s before 0.4. I did not add T3 to NDT, it was the other way around. NDT gave me anxiety, so I stopped and restarted, beginning with T3. When I began T3 only, many of my symptoms improved: my anxiety went away, my tachycardia went away, my sleep improved, my mood improved, and my hot flashes vanished. To me, this indicated that thyroid was helpful. However, according to Ray Peat, T3 only can make it difficult to avoid palpitations. So I added NDT back in, because several people who I know, most undiagnosed officially by a doctor, have seen improvements in all the aforementioned symptoms by using NDT.
I’ve been monitoring each of these symptoms closely since starting this treatment, and if they persist much longer, then it looks like you are right and I’ve made myself hyperthyroid. I also probably ramped up too fast. Thank you for your input.
Vileplume, I am sorry to hear you have symptoms. The problem is you need to test TSH, ft4 & ft3. From the tests you have posted you havent done this prior to starting treatment. Id be very careful of treating on symptoms alone. The symptoms you describe could be for multiple other reasons.
After taking ndt and switched to T3: the reason why you felt better on theT3 is because that dose effectively made your thyoid cut any production it has of T3 out so your palpitations etc stopped. The reason why you had them on the ndt in the first place is because you either dont need it or it was too much. Taking thyroid medication is a life commitment. So please be careful as you can become dependant and then there is no going back.
I too have used some of Broda Barnes techniques ie temp and pulse first and last at night. However I did this with blood tests and noting all my signs and symptoms. Together this is a powerful combination of helping to plan a way forward.
So I would get a thyroid panel done (you will have to do this privately as they dont do the fully thyroid panel on the nhs unless you have an overactive thyroid), alongside B12, folate, ferritin & vit D. These 4 can each cause symptoms when they are low. Your GP can test these for you.
Thanks for your reply. I do take into account all my symptoms, in addition to the following markers, listed below. Some other symptoms of mine have improved on thyroid supplementation. I did not test T3, but I did test my TSH and cholesterol before starting thyroid, then again two months into thyroid:
Blood Numbers in October 2020 (before taking any thyroid):
Total Cholesterol: 206 (Standard Range <200 mg/dL)
Triglyceride: 97 (Standard Range <150 mg/dL)
HDL Cholesterol: 58 (Standard Range >40 mg/dL)
LDL Cholesterol: 129 (Standard Range<130 mg/dL)
TSH: 1.32 (Standard Range 0.34 - 4.82 uIU/mL)
Glucose: 106 (Standard Range 70 - 100 mg/dL)
Blood Numbers April 17, 2021 (taking 6-7 drops Tyromax plus 20 mcg cynomel, neither dosed prior to taking the test that day)
Total Cholesterol: 184 (dropped 22, Standard Range <200 mg/dL)
Triglyceride: 92 (dropped 5, Standard Range <150 mg/dL)
HDL Cholesterol: 40 (dropped 18, Standard Range >40 mg/dL)
LDL Cholesterol: 126 (dropped 3, Standard Range<130 mg/dL)
TSH: 0.08 (dropped 1.24, Standard Range 0.34 - 4.82 uIU/mL)
Glucose: 103 (dropped 3, Standard Range 70 - 100 mg/dL)
Free T4: .79 Ng/dL (ref range 0.76-1.80)
Do you see anything concerning? Do you think the low T4 rules out hyperthyroidism? Or does it indicate that my thyroid gland has become dependent on supplemental thyroid.
A TSH of 1.32 is no way near hypothyroid. Plus, as others have said, you need to test free T3 and T4 as well. I think your symptoms are caused by drug-induced hyperthyroidism and that you should not be on thyroid hormone without a proper diagnosis.
Even with a proven low conversion rate of T4 to T3, raising T3 meds up to 18 mcg over a week is way too quick. No wonder your body is telling you “too much”. Take the advice already given, stop all meds and get your relevant bloods done before embarking on self medication
I really for you but it is very dangerous to self medicate regarding the medication for the thyroid gland. There are some serious things that can go wrong. In your shoes, assuming you live in the UK, I would request a consultation with your GP who would probably, fingers crossed, organise the tests which are essential, before starting or changing medication. I do know, from experience, that it can take the body some time to adapt to each new tweak. Good luck.
I assume you are self-treating - but presumably with the benefit of full blood testing (otherwise it's a bit bonkers). So do you have blood test results you can share - TSH, free T4, free T3 and any nutrients (ferritin, folate, vit D and B12) from before you started the NDT and before you added the T3 meds, plus related lab ranges (which vary from lab to lab).
How much of each are you now taking? Did you start the cynomel "low and slow" - as recommended - or jump straight in with a whole tablet?
With thyroid meds, it's essential to go very slowly, and give your body a proper chance to get used to any change in meds - so it's best to change one thing only at a time (ie not reduce NDT and start T3 meds together, but sequentially) and stay on a dose for a good 6 - 8 weeks before changing, with new blood tests before a change. So I suspect part of this is too-quick changes in powerful medication
Hello. Thank you. You may be right that I ramped up the dose too quickly. I read in Broda Barnes’ book Hypothyroidism: The Unsuspected Illness that he would start his young male patients on one grain of thyroid.
I started out taking 1/2 grain of NDT, but then I got tachycardia so I tapered off of it. Then I developed hot flashes that persisted, even when I discontinued thyroid. I tried taking small doses of T3, which alleviated hot flashes snd tachycardia. Over a week, I built up to 18 mcg of T3 a day. Then I slowly added in NDT, and reached a dose of 1 grain NDT (in addition to the T3). About a month later, the hot flashes set in. However, I never get them in bed or in the morning. They seem to happen when I get hot, or when I eat. I took the following blood markers before and during thyroid supplementation:
Blood Numbers in October 2020 (before taking any thyroid):
Total Cholesterol: 206 (Standard Range <200 mg/dL)
Triglyceride: 97 (Standard Range <150 mg/dL)
HDL Cholesterol: 58 (Standard Range >40 mg/dL)
LDL Cholesterol: 129 (Standard Range<130 mg/dL)
TSH: 1.32 (Standard Range 0.34 - 4.82 uIU/mL)
Glucose: 106 (Standard Range 70 - 100 mg/dL)
Blood Numbers April 17, 2021 (taking 6-7 drops Tyromax plus 20 mcg cynomel, neither dosed prior to taking the test that day)
Total Cholesterol: 184 (dropped 22, Standard Range <200 mg/dL)
Triglyceride: 92 (dropped 5, Standard Range <150 mg/dL)
HDL Cholesterol: 40 (dropped 18, Standard Range >40 mg/dL)
LDL Cholesterol: 126 (dropped 3, Standard Range<130 mg/dL)
TSH: 0.08 (dropped 1.24, Standard Range 0.34 - 4.82 uIU/mL)
Glucose: 103 (dropped 3, Standard Range 70 - 100 mg/dL)
Free T4: .79 Ng/dL (ref range 0.76-1.80)
I asked this same question above in response to waveylines and purplecat, but do you think the low-ish T4 means I’m not hyperthyroid, and therefore not overmedicating?
Could you point me to a resource with values I should aim for, or compare with mine?
I agree with others, that from the results you've given, you should not be taking any kind of thyroid hormone. You should have had complete thyroid hormone testing first, which you did not. You are now risking your health.
Symptoms of thyroid disease are similar to many others and you are now in danger of masking the real reason for your symptoms and damaging your health.
Hi. With your T4 result we need to see the range for this blood test result. Without a range this number is just that, a number. Before starting any medication it would have been best to have had a baseline blood test whereby TSH, T4 and T3 were tested and ranges supplied to you so u could make an informed choice rather than now be in a position whereby you have more questions than answers. Hindsight is a wonderful thing. No one is perfect. Moving forward you can get your own blood tests done whereby you get TSH, T4 and T3 tested along with vitamin d, folate, iron, b12. The vitamins need to be in an optimal place in the ranges respectively in order to work with your thyroid medication. You have received good advice. The choice is yours now how you choose to proceed. I wish u well. It’s not easy.
Hi. Thank you for your reply. I apologize for not including the range for T4! My result was 0.79 (ref range 0.76-1.80). So, on the low end of the range. My vitamin D is on the high end of standard range. Unfortunately, I do not have iron, folate or B12 numbers.
Ah yes good old hindsight. Ranges are always needed when giving results it gives a clearer picture of where r u are at. Vitamins need to be optimal so these tests need to be done, folate, iron, b12 along with TSH, T4 and T3. There are some rules around taking thyroid meds timing when doing blood tests. Look at old posts for this information. Vitamins work in conjunction with the thyroid meds. I have Graves so my T3 is crazy high. When u get blood done and u have the ranges then do a new post your new results. You will get better answers. There are good knowledgeable people on this site who genuinely want to help.
Ultimately antibody testing will confirm thyroid disease. This is the gold standard of testing along with all the T’s and vitamins. For example I have 3 positive anti bodies out of the 4 so am confined as a Graves patient. I always get TSH, T4 and T3 tested and I have had vitamin d, iron, folate, b12 tested along with some others. All this information collectively will build up a picture of your thyroid situation. It’s a cost financially but it gives you the answers u seek
The problem is you only had free T4 tested after starting thyroid meds (at least that is how I interpret your post). When you take T3, it´s normal to have lowish free T4 levels. So, your free T4 on NDT/T3 is not in itself proof you are hypothyroid. What you would need is to know your free T4 before starting NDT/T3.
So you never tested your T3 before taking a heap of thyroid drugs? I'm a bit shocked you've jumped right in here and not at all surprised you're having hot flashes. You know that's what T3 does - raises your metabolism? I'd stop all meds today for at least 7 days then get your thyroid tested properly (tsh t4 and T3 and antibodies)... from what you've posted so far you might have central/secondary hypothyroidism or you might not have a thyroid issue at all - taking all those thyroid meds with no diagnosis is risky I'd say. ( I know people do it to lose body fat but I think it raises the risk of heart attacks doesn't it?) I'd want a clear picture before you start on meds plus if it is central hypothyroidism you need to find out what's causing it.
I agree with you that it´s risky to take thyroid meds without a proper diagnosis, but there is nothing mentioned here that would point to central hypothyroidism. In order to make that diagnosis, you´d need free Ts as well, and the OP never had them tested prior to starting NDT/T3. It´s very likely he does not have a thyroid problem to begin with. Unfortunately, it would seem that taking thyroid meds when you don´t need them will shut down your own thyroid hormone production, and it can take a while for the body to start working properly again after going off the medication. Another reason to go off the meds without delay and retest. But I am not sure a week is enough if the TSH is suppressed from the T3.
Thank you. I made the decision to take the meds based off of Broda Barnes’ book Hypothyroidism: The Unsuspected Illness, but due to these worrying side effects, I’m now changing my direction. My health journey has been full of learned lessons, and this is no different.
I agree with all the above and would recommend that you stop all thyroid medication for 6 weeks and retest everything…. TSH,fT4,fT3, vit D, folate, B12 and ferritin. Antibodies would also be a good idea. This would establish
1. If you have hypothyroidism
2. If so, is it central hypothyroidism or not?
3. If it is autoimmune
4. How well your thyroid is working
5. Whether you are converting T4 to T3 adequately.
Without these results before medication I don’t think anyone can advise you.
I would also like to point you to your slightly raised glucose. Was this fasting? And if so have you had an HBA1C or a glucose tolerance test? Have you had diabetes excluded?
Good luck on your journey, it is not easy and everyone is different.
Thank you. Yes, my glucose is elevated, due to the fact that I was on a ketogenic diet all of last year, and then I began trying to add carbs and sugars back in. My HBA1C is good and low, but I have yet to do a glucose tolerance test. I have been monitoring my blood glucose at home though and making adjustment accordingly. Thanks again.
I think the best thing to do is to go back to the beginning and find out the information you need about how your thyroid is functioning by itself.
To do this you will have to stop taking all thyroid hormones for long enough to get all the extra T4/3 out of your blood, AND THEN allow the TSH and dieodinases to reset themselves.
7 DAYS without any NDT/T3 is not long enough to find this out ... T4 has a 'half life' of 7 ish days . T3 is much shorter 2/3 ? days...so 2/3 weeks is reasonable to allow the extra T4 to go away. but this only deals with part off the issue.
AT LEAST 6 weeks without taking any T4/3 is needed to allow TSH time to settle after the change ...., but because your TSH has now gone so low, even 6 weeks may not be long enough .. once TSH has gone very low it can sometimes (but not always) take months to reset itself... there is unfortunately no way to know for sure 'how long is long enough'.
Once off NDT/T3... there will inevitably be a period of feeling bad , because the low TSH is not prompting your own thyroid to produce normal amounts of T4 or T3, and a low TSH makes your conversion from T4 to T3 in the cells ,less efficient.
Hopefully your TSH will respond quickly to the drop in T4/3 levels when you stop adding any.... it could happen with in a few days /week... but it will probably be up and down for a while.. which is why we leave it 6 weeks to respond and then settle before doing blood tests after a change
When TSH is normal 'for you' or higher, it causes the deiodinase's to make more T3 from your T4. When TSH is very low it turns this response down ( because it interprets low TSH as a sign that you have too much thyroid hormone, so it 'fixes' this by lowering the % of T3 (in relation to T4) that the thyroid produces ,lt also lowers the efficiency of T4 to T3 conversion.
When TSH rises to normal (usually around 1 ish) or becomes raised , a higher % of T3 will be produced by the thyroid gland , and also T4 to T3 conversion in the cells will become more efficient again.
TSH is a negative feedback loop . .. it also has a feed-forward effect , it both responds to and drives levels of T4/3 and their ratio to each other.
Hopefully this explanation allows you to understand the complexity of the natural regulation system you are interacting with by adding T4/3.
And how, (unless there is no alternative but to mess with it because for example, you can't produce enough of your own T4, or there is something preventing your hypothalamus/ pituitary making enough TSH in response to low T4 levels)....... messing with it is unlikely to help anything.. you will just be compromising it's ability to respond flexibly to your changing needs.
When you add T4 you make less of your own.... so if you don't add 'enough' you get less than you had in the first place. (so your low fT4 on NDT does not tell you it was low before)
When you add T3 you reduce your ability to make your own T3 in the cells.
so without knowing what the problem was with levels of T4/ T3 in the first place , how do you improve anything ?
And without knowing if FT4 or FT3 were actually low before you started, then a TSH of 1.3 ish IS very normal........ yes, some people may naturally have TSH <0.4 , but the majority will have it around 1.
If you are going to say your TSH of 1.3 is not normal , you need a plausible explanation for this... ie . you could see your fT4 or fT3 is very low but TSH has not risen appropriately.
Because you missed out taking fT4/3 /TSH together a few times before you altered the system, nobody can now see what was going on with T4/3 in the first place ,or whether the compromises you make by messing with the natural system offers any improvement or is making your situation worse.
Now if I was a GP, I would say you are entering the menopause. Yes, I know you are male, but lets ignore that trifle fact. Here - have some anti-depressants. Bye!
No, not necessarily because meds could have indirectly caused many alterations in other bodily systems/hormone levels/binding carriers.
Everything is joined .. HPT axis, HPT axis, HPG axis, etc, etc ..... demonstrated by the somewhat obscure symptoms we feel, which can then lag behind good biochemistry.
Also if you unknowingly have Hashi, this sudden activation of additional thyroid activity could encourage higher thyroid antibody levels.
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