Unsteady T3 levels cause fluid retention and mu... - Thyroid UK

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Unsteady T3 levels cause fluid retention and muscle aches?

suzannai profile image
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I just came across this statement on a website. As these are my main concerns how do I tell if the T3 is unsteady or just not enough? I have been taking T3 now for 6 weeks and am now taking 45 mcg at 9/12/4pm but am considering taking it all at once. When I first started I was taking 15 mcg sustained release four times per day and noticed more of a change with this. Any thoughts? I have read that SR is not as good. Really not sure what to do. Main concern is facial puffiness and pain. Considering taking the dose all at once to see if improvement occurs as per Dr Lowe.

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Heloise profile image
Heloise

I don't know why it would be prescribed that way. The purpose of sustained release would be to slowly enter your system and to slow it down further by taking in four parts doesn't seem necessary. I've also read contradictory remarks about timed-release T3.

I take mine all at once in the a.m.

suzannai profile image
suzannai in reply to Heloise

Hi Heloise, Do you take sustained release or regular? And may I ask if you how much T3 you take? I am trying to figure out what my optimal dose is....I seem to be able to tolerate 90 mcg no problem. It is likely that I am dealing with cellular resistance and understand that I may need to go higher on the dose. It has been alot of experimenting and it would be such a relief to just feel that I am on the right track as opposed to continuing to play with dosing and forms of T3 (sustained, cytomel, generic, NDT, compounded), Are you following the once a day protocol laid out by Dr Lowe?

Heloise profile image
Heloise in reply to suzannai

Hi suzanne, you probably can't go by circumstance. I've been doing this for twenty years and started when I knew very little and had no control. We have come a long way from that dark age. I was on Synthroid for six years and then on Armour for about ten with TSH never really optimal but "normal, ha". I had a terrible time trying to raise my dose so have decided to work on my adrenals. I am on my own and transferred my one grain of Armour directly to 25 mcg. of cynomel which I take in the morning. I try a tiny bit of a T3 pill later in the day just to try to raise my dose as 25 is pretty low. My TSH was 1.66 last time I checked and obviously not low enough. I am fairly active but muscle pain and I'm either too hot or too cold and some neuropathy has set in.

Your dose being that high does seem that you have a side issue. Could it be the co factors? I'll post a video. Do you have a cortisol problem? Maybe these short videos can help you find out. You can view more of them by clicking the youtube button at the bottom of the screen.

He also has three videos about antibodies. Have you had any of those tests?

youtube.com/watch?v=14aoImF...

youtube.com/watch?v=qYeFh06...

suzannai profile image
suzannai in reply to Heloise

Hi Heloise. Thanks for the videos. My antibodies are negative, have been tested a few times. B12 and folate good but D is low at 70 and ferretin is 23. I am supplementing with 5000 IU D and 50 mg ironbysglycinate with Vitamin C 5000 mg. Cortisol was high in urine and blood back in Jan but was suppressed with dexamethasone. I recently did a saliva test and all within range but on the mid to low end am and noon and just above range eve and night. all of my problems began one year ago after an extreme shock and emotional period of time.

suzannai profile image
suzannai in reply to Heloise

Heloise, I looked at a few of the videos. However, if there was a conversion issue, would not my blood T3 be low? Cortisol, malnutrition, could be factors. After my stressful event last year I was unable to sleep or to keep food down or in for approximately 6 weeks, my symptoms of soft tissue swelling began a few weeks after that and from there the process of seeing doctors on a weekly basis began, compounding the stress and disappointment. Currently I am eating well, sleeping and trying to manage stress with tai qi and qi gong and yoga. Regardless, though, would not T3 still be the immediate solution until the underlying problem is discovered? I am at a loss.

Heloise profile image
Heloise in reply to suzannai

Yes, I think you are doing everything you can and this may just be a matter of time.

Clutter profile image
Clutter

Suzzanai,

Would the article be referring to fluctuating FT3 levels rather than the peaks caused by each dose of T3? Although there are serum peaks and troughs after each dose it is generally available at a cellular level about 48 hours later without such fluctuations.

Six weeks is barely time for your body to adjust to medication. I'd be inclined to raise your T3 dose and continue to split dose. You are already taking a supraphysiological dose and taking it in one dose may cause atrial fibrillation.

suzannai profile image
suzannai

Hi Clutter,

The article was on the WTS site and did not make a distinction between what was being measured. It simply stated that unstable T3 levels can contribute to muscle pain and fatigue and fluid retention.

I did not know that the T3 is available intracellulary 48 hours later. I assumed that it was more immediate than that.

May I please clarify your intention in the statement above? I am at 135 mcg divided into 45 mcg three times per day now for the past two weeks. Yesterday and now today I took 90 mcg once in the am and then another 45 mcg around 1pm. Should I remain at this dose or increase the second dose to 90 mcg. If indeed there is a NOT an issue with cellular resistance would one not assume that I would be overstimulated at 90 mcg or does this take some days/weeks to have an effect? Truly, I am not sure how to proceed from here if indeed there is a resistance problem.

I suppose my frustration lies in the fact that many reports that I have read show fluid retention responding quite quickly to even the smallest dose of thyroid hormone and for me there has been no change in 6 weeks. It feels like an eternity, although you say that it is not a long time :) Regarding a-fib, what am I to look for. HR is 90 bpm on average, bp is normal and temp is just below 37. Thank you again for all your time and advice.

Clutter profile image
Clutter in reply to suzannai

Suzzanai,

I was suggesting it might be potentially damaging to take 135mcg in one dose and it might be better/less damaging to increase your dose and continue to split the dose, but if you have RTH it may not make any difference.

I understand your frustration. 6 weeks isn't a long time but sure as hell feels like it is when you're ill and trying to become well.

suzannai profile image
suzannai in reply to Clutter

Thanks Clutter. I am going to stay with the 90 mcg once and then 45 mcg later for a few more days and see how I respond. It seemed okay for about two days but I felt unwell with a rapid heart rate yesterday - could be the weather (95 F). I will monitor and see. Based on this however would my ability to tolerate 90 mcg indicate RTH or not necessarily. I do think that if I increase from 90 mcg it will be by quartering (as best I can) the 90 mcg caps and working up from there. I dont want to endanger my health but I also recognize that if I have RTH and am one of those people who need a much higher dose (ie: 150-300mcg, have read of one person up to 500 mcg) then all of the time and money taking the low doses is essentially a waste is it not?

Clutter profile image
Clutter in reply to suzannai

Suzzanai, it may be safer to look at it the other way, rushing into higher and higher doses could cause heart, kidney and liver failure. This is unlikely if you titrate over a period of time.

suzannai profile image
suzannai in reply to Clutter

Thanks Clutter...that is a much more positive way of looking at it :) I am just getting very impatient and that is making me anxious to feel better ...a year of doctors appointments and having to move to the US for any treatment so I am desperate for something to work, even just a little so I can stop second guessing if we are on the right path.

Clutter profile image
Clutter in reply to suzannai

Suzzanai, I understand the desperation and anxiety, truly. Why were you unable to get treatment in Canada?

suzannai profile image
suzannai in reply to Clutter

Thank you Clutter. No doctor or endocrinologist would treat me in Canada and I saw many because all labs were within normal limits. For me the only abnormal lab was CK - creatinine kinase which is a marker for muscle breakdown. We see it rise with hypo and other things and every doc suspected hypo but then dismissed it after the tsh, t3 and t4 came back in range. After several muscle biopsies it showed a mitochondrial defect but not genetic but still no explanation. To me mitochondria and thyroid go hand in hand. Anyhow, the medical profession kept chasing the rising ck levels but the real issue i believe is the thyroid hormone resistance. the why is yet to be determined.

Heloise profile image
Heloise

suzanne, I recalled an article someone placed here yesterday, all about T3. It may answer questions for you since most assume once you take straight T3 it will go directly where you need it but, of course, it will go where it is easiest to get to in a way. progressivehealth.com/using...

Heloise profile image
Heloise

Did you listen to #18 or #19?

youtube.com/watch?v=UMa_8oh...

suzannai profile image
suzannai in reply to Heloise

Thanks for this Heloise. I have had Testosterone levels checked along with glucose, HgAIc, insulin which have all been within normal range. Also if there was an overconversion problem, would my FT3 levels not be closer to the higher end of normal? Mine are low normal as is T4.

Heloise profile image
Heloise in reply to suzannai

Do you have any T4 either coming from your thyroid or from a pill right now? If not, you have nothing to convert. Right?

If you are only on T3 I would expect your level to be much higher at that dose. It seems you are blocking some of the T3. Cortisone will block T3. Heavy Metals block T3.

As Clutter brought out...if suddenly all that T3 kicks in because your ferritin rose to 70 or 80 where it should be, you might well be very over medicated.

suzannai profile image
suzannai in reply to Heloise

Hi Heloise. I do have an intact thyroid gland so some T4 is being produced and I have been taking 2 grains NDT for just over two weeks but am thinking of just doing the T3 alone at this dose or higher to see if there is improvement. I am not on cortisone but do you mean cortisol? My blood and urine tests were high but my saliva is low do I do not know which one is accurate to use. I have not been tested for metals but do they block receptor sites or do they interfere with conversion? My ferretin is low and as I understand it takes quite a while to raise. I am also trying to understand it iron is needed for conversion of T4 to T3 or for the transport of T3 into the cell.If the T3 dose that I am now on were NOT getting into the cells I understand that there would be more Hyper symptoms? Do I have that correct? I just really dont know how to gauge is this is enough or too low. thank you Heloise

Heloise profile image
Heloise in reply to suzannai

I don't know how metal blocks T3, I don't think it's receptors. It may bind them in other ways. I really don't know. You may not have hyper symptoms if T3 is blocked. You would probably be hypo. Low cortisol can also keep you hypothyroid with hypo symptoms.

stopthethyroidmadness.com/a...

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