I JUST DONT UNDERSTAND

I just got home from vacation and received 4 phone calls about my lousy thyroid test (Don't have those results yet) but endo said on message they're worse then the numbers below from March (Reverse T3 not tested this time) and she wants to reduce my Synthyroid (Currently on 100mcg) to 88 mcg and leave my Cytomel as is at (15mcg)....I feel fine NOT GREAT but as I stated the days of feeling GREAT are gone since thyroidectomy. I take 5 thyroid pills which is seriously getting on my last nerve since I have to spread these out so they don't get in way of my regular meds I take.

I'm not going to reduce my current synthyroid (100mcg) but if my Endo is game I'm willing to try the thyroid made from pig gland (can't recall name) if so how much would I take?. What is everyone's take on reducing my synthyroid (they keeps saying Im hyper) because numbers are low (TSH) and I feel fine Im not hyper and I know this has everything to do with DEXA Scan I had and If I never did this scan they would still be telling me my numbers are perfect.

My numbers for the past 16 months including the set below have been roughly the same and all those times I was perfect...even though I wanted to jump off a cliff, I was mentally flipping out until she upped my T3 and changed me to pure synthyroid (2-50mcg )..... Any thoughts? Sorry so long.

MARCH 2018: Retested

FT3 (2.0 - 4.4) 2.980

FT4 (0.93 - 1.7) 1.23

TSH (0.27-4.20) ......0.076 (L)

Reverse T3 (9.2 - 24.1) 19.3

[shaws]

I wish they would stop treating patients "by numbers" and not listen to them of 'how they feel'.

If I was well and symptoms relieved I certainly wouldn't adjust hormones. They seem to only look at the TSH and adjusting dose according to it and not symptoms is wrong.

That is one of the benefits of sourcing our own thyroid hormones as they cannot force adjustments.

It seems to me that it is Big Pharma that must have made the rules regarding levothyroxine numbers. However if T3 is added to T4 the numbers cannot correlate at all as they were introduced for T4 alone.

There are many reports regarding dosing by the TSH instead of relieving patients symptoms.

If you feel well do not reduce or adjust your dose.

healthunlocked.com/thyroidu...

[shaws]

It must be very difficult for you to split your dose of thyroid hormones five times a day! You cannot be benefitting as T3 in particular has to saturate the T3 receptor cells and the effect of one dose lasts between one to three days.

Food interfers with the uptake of thyroid hormones too so it would be difficult for your stomach to be empty.

Blood tests for thyroid hormones should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps keep the TSH at its highest as that's all doctors seem to take notice of.

If I felt 'fine' I would not change my dose. If they took your blood test five times a day it would probably be different each time.

[Hidden in reply to shaws]

Hi Shaw, I take my synthyroid 3 hours before my T3 and any food or my normal prescriptions. Below is my Schedule, I thought I was timing meds good. Pls keep in mind I'm on U.S. times

4:15am - Synthyroid

5:15am - Get up have coffee

7:30am - first cytomel (5mcg)

9:30am - second cytomel (5mcg)

10:00am - eat ....and start taking my regular meds

2:00pm - take my final cytomel (5mcg)

I've been doing my medications this way since I started on them. Could I do something different? I tried taking 2 cytomel together but that caused to much aniexty I'm guessing it was too much T3 at one time either way changing the dose time has caused no issues.

[shaws in reply to Hidden]

I follow one of the (deceased) doctors advice and he was also an Adviser to Thyroiduk.org.uk.

He himself was thyroid hormone resistant and took his dose in the middle of the night when he awoke, so nothing interferred with the uptake.

I cannot advise as I am not medically qualified.

Dr Lowe always stressed his patients took one daily dose and he only prescribed NDT or T3 for thyroid resistant patients. You could be taking too much if you had a reaction after two doses.

I have no idea how you can have an empty stomach when taking thyroid hormones because our digestion is usually slow and it might take two or three hours for food to be digested.

The only way I know of getting to an optimum is to start on a dose and every two weeks add a 1/4 tablet (T3) every two weeks till you have relief of symptoms.

Also you don't have a carefree life (as I now have) as I am not tied to taking thyroid hormones. Coffee can also interfere with the uptake of thyroid hormones as does food so you may not be getting to an optimum dose.

I will give you three chapters which will be informative but you will have to copy/paste the 'tiny urls' then read the information.

Chapter 7

tinyurl.com/ycxpz565

Chapter 2

tinyurl.com/ya5blrr2

[greygoose in reply to Hidden]

I would say you're taking your second cytomel too close to food. Leaving one hour would increase absorption. And, your regular meds should be two hours away from cytomel for good absorption. Have you ever tried taking one of your doses of cytomel with your synthroid? In any case, you've got the whole afternoon and evening to take pills. Why is it all bunched up in the morning?

[Hidden in reply to greygoose]

Lol....because I take a lot of pills and don't want to spend my life tied to pill taking as it is now I'm turning into my 78 year old mother.👵

[greygoose in reply to Hidden]

But, on the other hand, I would have thought you wanted to be healthy, and would do what it takes to that end.

[Hidden in reply to greygoose]

Healthy....that ship sailed 16 months ago Im lucky if I can walk for 30 minutes due to severe tendon issues in my feet abpnd calves "Endo tells me my crippling tendon issues are not related to thyroidectomy" hmmm not buying the garbage they are peddling.

[greygoose in reply to Hidden]

Most ships come home again. But you'll probably need to take control of your health into your own hands.

[shaws in reply to Hidden]

I wonder if you could also have Fibromyalgia as it can be connected to low T3. One of our Advisers stated that Fibro is due to Thyroid Hormone Resistance and that T3 solved the pain. Other doctors, I believe, have different opinions.

Excerpt:

If you have fibromyalgia, one of the main symptoms is likely to be widespread pain. This may be felt throughout your body, but could be worse in particular areas, such as your back or neck. The pain is likely to be continuous, although it may be better or more severe at different times.

nhs.uk/conditions/fibromyal...

This is from Dr Lowe who was an Adviser to TUK before he died through an accident. He ran the Fibromyalgia Research Foundation:

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

[Hidden in reply to shaws]

It's possible but I won't have a real answer until June 7th but I might have Psoriatic arthritis and this might be behind my body pains and it's my understanding that traumatic health issue could cause a psa flare which would be from thyroidectomy its hard to say really believe me Fibromyalgia crossed my mind but psa is more likely Ive had psoriasis for 44 yrs.

[Hidden]

Does anyone know if Stelara injections could have impact on Thyroid medications and blood results?

[greygoose]

It depends how well you convert, how much impact reducing your synthroid would have on you. But, I very much doubt it's necessary going by those results. They should not be dosing by the TSH. It's the FT3 the important number, and I doubt that's suddenly jumped up to over-range.

[Hidden in reply to greygoose]

According to my Endos message on phone it seems it's worse then the results I posted above (Will pick up test later this week) they are know for their chicken little syndrome and I've had nothing but horrible tendon pain in my legs since my thyroidectomy 16 months ago I'm now scheduled to have a torn knee tendon fix next month and honestly I'm done emotionally and physically dealing with this thyroid issue, if I had a time machine I would go back and never had this thyroidectomy I would take my chances with cancer Im that disappointed.

I never thought in a million years getting properly medicated and cared for after thyroid removal would be and all out battle I'm to the place now where I'm going to start filing complaints for mismanagement of my health.

[greygoose in reply to Hidden]

No-one would think that! Welcome to the world of hypos. It honestly is unbelievable that all doctors could be quite so ignorant and incompetent. Which is why so many of us go for self-treating.

But there's nothing wrong with the above results - although you are slightly under-medicated. The problem is that they've been trained to only look at the TSH, and really have no idea how any of it works. It's just total ignorance. Half of them don't know the difference between T4 and T3, and the other half don't know the difference between Grave's and Hashi's - as incredible as that may seem. They just are pig ignorant!

If you had a time machine, I don't think it would have been a good idea to take your chances with the cancer. But it would have been good to research what happens after a thyroidectomy, and work out your own plan of treatment. I sometimes say to people considering a thyroidectomy to write up a plan and get it signed and sealed by the endo in charge, that they could refer back to in case of conflict.

But, none of us have time machines, so we have to deal with the present situation. Doesn't your Dumbo-endo know that with thyroid cancer the TSH has to be suppressed to prevent regrowth of the thyroid and possibly the cancer with it? Surely he knows that? In any case, if your TSH is suppressed it's because you're taking enough hormone that you don't need it anymore. TSH only does what it says on the box : Thyroid Stimulating Hormone. It has nothing to do with bones or hearts. It is not dangerous to have a suppressed TSH, but could be life-saving where cancer is concerned! Tell him to do a bit of research!

[Hidden in reply to greygoose]

Haha... They are dumb and all this whining is simply because of a DEXA Scan I had prior to the March blood test I posted "I have Osteopenia" I'm a life long user of steroids for immune issue as well as a ovarian cancer survivor that obviously resulted in a complete hysterectomy 14 yrs ago (But none of this matters to them) they are convinced I'm going to die from heart disease because I'm over medicated....they are correct my increasing cholesterol levels over past 16months will most likely kill eventually.

[greygoose in reply to Hidden]

Cholesterol doesn't kill you. it doesn't cause heart attacks and strokes. That's another piece of misinformation they want to feed you, so that you'll take statins! Your cholesterol is rising because your FT3 is too low. And that's the number they should be looking at, not the TSH. Osteopenia is a red herring, anyway. Just another way to convince you to take their wretched drugs! Make the patient sick - but still just alive - so that Big Pharma and the doctors can all get rich!

[Hidden in reply to greygoose]

Yes, yes and yes...I pointed out to my endo that 60% of the population has osteopenia and don't even know it as read on Gov't health pub and that my 16 months without thyroid didn't cause osteopenia read my health record, pfft. Endo offered me no meds for the osteopenia or a Dexa Scan sooner then 2 years because they care about my bone health they just like poking the wasp nest and getting stung.

[greygoose in reply to Hidden]

You're better off not being offered any meds for the osteopenia! Their horrible drugs can do more harm than good! What you need to do is check your vit D and calcium. If either are low, start taking vit D with vit K2 - MK7, to raise your calcium and make sure it goes into the bones. Also take magnesium - no point in testing for that. Bones don't just need calcium, they need a whole range of optimal vitamins and minerals, but vit D is a good place to start.

Plus, with their wretched bone tests, they are comparing mature ladies with little slips of girls! Obviously at 60 (don't know how old you are) we won't have the bones of a 20 year-old, but we can still be in good bone health. If you're worried about it, there's a bone health forum on HealthUnlocked.

[shaws in reply to Hidden]

Ignore what they state as that's what they believe. We believe differently as we don't rely wholly on a blood test result but 'how we feel'. This is another link from Dr Lowe:-

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