Getting impatient on Thyroid-S: Hello to you all... - Thyroid UK

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Getting impatient on Thyroid-S

looselywoven profile image
7 Replies

Hello to you all, my new found friends.

I posted a couple of weeks before Christmas about my having got some Thyroid-S with the hope of replacing synthetic Levo with it - I'm very grateful for the replies that I got.

I was taking 50mg Levo (Mercury Pharma) up till then, but felt undermedicated. My doctor would not increase the dose because my TSH was in range at 3.6, even though I told him how awful I felt. He was willing, though, to refer me back to the endo (who told me categorically that they only treat the TSH level and only with Levo).

I started with one grain TS in the evening, in addition to my Levo which I took in the morning, one hour before breakfast, with water.

I didn't notice any improvement after two weeks - but no ill effects either, which at least reassured me that I wasn't harming myself, either, by self medicating off the internet.

I then replaced my morning Levo with TS (still with the evening TS). Again, no improvement. I felt more tired and had a few days when I overslept and was late for work, which also made it more difficult for me to take it one hour before food. Still getting foggy by mid afternoon. Back to sleeping my Saturdays away!

Also, I was waking up with stiff and swollen fingers again.

I read on STTM about taking it sublingually and I must admit that I felt some(slight) improvement with that but on those days when I overslept it was very difficult because I needed to brush my teeth etc before going to work.

This morning I again overslept and my hands were so stiff and swollen that I took two grains. The swelling went down as the day passed and I started to feel ok again, until the fog descended this afternoon.

I haven't taken the evening dose as I'm afraid of jumping up too quickly to 3 grains.

I had a partial parathyroidectomy and hemithyroidectomy in March 2015. I know, for sure, that I feel one helluva lot better now than I did before my op ( I felt nearly dead on my feet!) but I feel as if I have replaced one set of problems with another.

I was diagnosed with CFS ten years ago. I've had both my wrists operated on for carpel tunnel. I had my gallbladder removed 3 years ago. I've was on Omeprazole for GERDS for a few years until I decided to stop it because it didn't feel to be working. I have been treated for tennis elbow and frozen shoulder. Brain fog is not a new experience for me!

I know now, from reading on this forum, that these are all thyroid related conditions, though I didn't know it at the time.

Since my op I've had periods of really bad lower back pain, painful wrists again, although it doesn't feel just as the carpel tunnel problem had been, very tender heels - so that I can hardly bear to put my feet on the floor - as well as the afternoon brain fog.

So! With HUGE apologies for the length of this post and many, many thanks for having stuck with me thus far, here are my questions.

1. What are the equivalents of TS to Levo?

2. Am I in danger if I go to 3 grains (it's been about 6 or 7 weeks since I started TS)

3. How long is TS effective in the body? I think I've read that Levo has a (half life?) of a few days so that if you miss one it won't really be noticeable. So..

4. Is it essential to split the dose of TS?

5. The pain in my wrist eased off at the beginning when I was taking both TS and Levo, but is back with a vengeance now. Does that mean that I need more than my two grains of TS? and....

6.Is it normal to feel the benefit fairly quickly as with my stiff and swollen fingers this morning? (or was that just coincidence?)

I have read on STTM about a "...... loop". I can't really remember what it was called, but something to do with staying on the low dose for too long. Can anyone explain this to me.

I read as much as possible to try and improve my health, and am hugely thankful to have found this site.

I work full time (and overtime) - a bit under stress recently due to staff levels. I am a single parent in that I am the legal guardian of my teenage grandaughter (for the past 11 years), whose mother, (my daughter) was unable to cope. I am, from reading this site, very very certain that my daughter is undiagnosed hypothyroid.

I urged her to have her thyroid checked a couple of years ago - before I knew much about thyroid issues or about my own thyroid problems. Her TSH was 14. Her doctor wouldn't treat. With my new found knowledge of thyroid issues I wonder how she is even standing! Overweight, fybromyalgia, GERDS, gallbladder, facial, neck and hand puffiness (myxodoema?), mental health problems.

She has an appointment, again at my urging, with her doctor, for thyroid tests on Monday. I was hoping that she could give me the results to put on here for advice. However, she has not spoken to me since Christmas Eve so I don't know what will happen there.

That's another story for another day. If she'll speak to me I'll post the results for advice.

My mother, too, has many many symptoms of hypo, though undiagnosed.

Again, I must apologise for the length of this post.

I am, as ever, extremely grateful for the help that I get from this site.

PS I'm getting my blood tests done from BH since my doctor is not very helpful.

thankyou

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looselywoven
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7 Replies
Clutter profile image
Clutter

Loselywoven, 1 grain NDT is roughly equivlent to 75mcg Levothyroxine. I think you'd be better off staying on 2 grains for 6 weeks and have a thyroid blood test, including FT3 before increasing further.

thyrophoenix.com/adjusting_...

T4 in Levothyroxine and NDT has a half life of 7-8 days, and T3 has a half life of 2-3 days.

If you felt well taking NDT in one dose there's no need to split dose. The reason for splitting dose is to spread the T3 out and avoid the peaks which can happen when taken in one dose.

__________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

looselywoven profile image
looselywoven in reply toClutter

Thank you, Clutter, for such a prompt reply.

I will stay, as you suggest, on the 2 grains, taken in one dose in the morning - not least because at least with that I didn;t feel worse, which I definately did when I split the dose.

When I get my test results from BH I'll post them for further advice.

While I have read and understood the importance of giving my body time to adjust to new medication, I have been afraid of the effect it might have on my ability to cope in the interim.

Thanks again.

Looselywoven

shaws profile image
shawsAdministrator

I personally have never split doses of whatever thyroid meds I've been taken. I know STTM suggests this to 'mimic' natural rhythm. This is from a scientist/doctor and go to the date January 30, 2002:-

web.archive.org/web/2010112...

Also you will see topics at the very top of the page and Carpal Tunnel is a one.

Thyroid hormones are too large to be absorbed through the tongue so you may not be absorbing all of the hormones.

This may be helpful as Armour is NDT - go to date November 21, 2003

web.archive.org/web/2010112...

As it is T3 which is the active hormone required in our billions of receptor cells, this is an excertp (may be a little too scientific but you get the gist). Go to the date July 5, 2000:-

Lab studies have shown that mutant, low affinity T3-receptors properly regulate gene transcription only after they're exposed to saturation amounts of T3. Under normal conditions, T3-receptors aren’t saturated, and the use of sustained-release T3 isn’t likely to provide saturation. Saturation isn’t likely to occur with sustained-release T3 because the T3 enters cells only in small amounts over an extended time. As a result, it’s not likely that large enough amounts of T3 will reach the receptors at one time to saturate them. But plain T3 in single doses enters cells in larger amounts. These larger amounts may provide the saturation needed to provoke transcription regulation by mutant T3-receptors. If so, these saturation amounts of T3 may induce waves of transcription that on the clinical level relieve symptoms of hypometabolism.

web.archive.org/web/2010103...

Re sublingual

To explore the issue further, Geri Rybacki, Executive Director of the Coalition for Better Thyroid Care and I both talked to a variety of doctors, drug companies and other experts, to get a sense of the professional perspective on the issue.

The consensus? The active ingredients in thyroid medication have molecules that are so large that it is difficult for them to pass through the mucous membranes.

Most of the dissolved/crushed medication ends up swallowed, and moves through the digestive system in the usual way. Other factors also affect sublingual absorption, including oral pH, and salivary enzymes.

Thyroid expert Kenneth Woliner, MD in Boca Raton, Florida said that some medications are designed to be taken sublingually -- for example, drugs that need to be fast-acting, and when where seconds count (like nitroglycerine, used to treat angina and heart attacks) -- and have a molecular structure that lends itself to sublingual absorption. But thyroid is not one of them, according to Dr. Woliner.

thyroid.about.com/b/2011/05...

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

looselywoven profile image
looselywoven in reply toshaws

Thank you for this, Shaws. Very interesting. xx

galathea profile image
galathea

I had a terrible time with thyroid S and erfa too. It appears that these two ndt's are manufactured to have a long shelf life and they need breaking down differently in the stomach. I ended up so hypothyroud with them both that i went back to synthetic meds for a year before trying again.

I ended up with Thiroyd and nature throid and do really well with either of these. Have taken them for about 5 years now and wouldnt willingly go back to synthetic.

If you dont think you are better, try a different brand.

Xx g

looselywoven profile image
looselywoven in reply togalathea

Hi, thanks for this - I'll give it a try if I don't have any improvement soon. I really can't afford to be slipping backwards.

Many thanks

Jazzw profile image
Jazzw

Looselywoven, have you ruled out Vitamin B12 deficiency? Many of the symptoms you describe fit B12 deficiency as well as hypothyroid.

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