I had my thyriod removed for Papiliary Thyroid Cancer. I always suspected Hashimoto's but could never get a GP to test for anything or take me seriously. Even as the lump developed on my thyroid. I was always told my T3 and T4 were "fine" and/or "the bloodwork doesn't lie". I never said to my GP it is did. I said there is something wrong with my thyroid. I said there was no reason an active person like myself should gain sixty pounds in a year (Yes, I'm a Yank, but I used to visit family and swim the UK often pre Covid, please don't give me the boot. I'm being honest. I'm stateside. I'm here because I need to be. I need your help:)) There was no reason I should not be able to tolderate cold. I reminded my GP my grandmother and grand aunt also had their thyroid removed for thyroid cancer. No body would listen.
Fast forward to a new GP as I had to change insurance from my job, who agreed the lump protuding should at least have an ultrasound, which led to the biopsy and you know the rest.
But I feel worse than before surgery. Now I have pain where before I did not. I am now 8 months post surgical. I still hardly have a voice. I wake up to bruising all over my neck like I've been strangled. Now my left clavicle hurts.
My surgeon and care team all promised "It's no big deal" and "Soon, you'll be a thryroid thriver"....They lied. Its awful. THey don't tell you the truth. When does it get better? I'm not asking to be one of the shiny plastic stock photoThyroid Thriver people on the internet with no scar.I kinda like my battle scar, proving I won or will win, not the cancer. I am asking when does it get better. When will I feel better? When do you "bounce back"? when does the brain fog, lethagy, sadness and now pain go away?
Yes again I'm reaching out across the pond because I need to. I am provided no support here in my physical community. Yes. I've asked GP about support groups here. You seem like kind, intelligent people, who know what you're talking about and want to help people who find themselves on his path.
I recently asked to be switched from 100 mg of Levo to Synthroid. The Endo increased my dose to 112 mg because my thyroid antigens are stil through the roof. Also, they have detected a mass in my right breast, Any thoughts/advice is always most welcome.
Sincerely,
Audra
Written by
Audley1013
To view profiles and participate in discussions please or .
I can't answer most of your questions because I've never had thyroid cancer, nor have I had my thyroid removed.
What I can say is that there are quite a lot of people from the US and other countries using this forum, so you aren't alone and we won't kick you out. This forum isn't restricted to only people from the UK.
The other comment I can make is that a dose of 100mcg Levo is too low a dose of thyroid hormone to replace what your thyroid was producing, although I can't remember the numbers of what the average thyroid produces (but someone else is bound to know).
A healthy thyroid also produces about 25% of the T3 that the body needs. T3 is the active thyroid hormone that every cell in the human body needs. A healthy person with a thyroid will make up the remaining 75% of the T3 they need by converting T4 (which is what Levo is and in healthy people it is produced by the thyroid) into T3 in various tissues around the body e.g. the liver, the kidneys, the intestines etc.
The medical profession assumes that everyone can convert T4 to T3 perfectly and will always make up the shortfall from a missing or diseased thyroid. This isn't true. There are lots of reasons for low levels of T3, and it is the levels of T3 that usually determine symptoms in someone with no thyroid or thyroid disease of some kind. Too much T3 means the person feels (or is) hyperthyroid, too little means the person feels (or is) hypothyroid. Doctors can prescribe T3 if they want to. But getting them to do so is very difficult in many cases.
There are many other things that can go wrong in thyroid disease. The biggest bug bear for many of us is that doctors assume that TSH (Thyroid Stimulating Hormone) is the ideal hormone to test to determine levels of treatment with Levo. In a healthy person when T4 and T3 levels drop the pituitary raises its output of TSH. When T4 and T3 rise then TSH drops.
The problem is that doctors believe that TSH production is perfectly controlled in everyone no matter what the cause of their thyroid troubles. This isn't true either.
The good news is that patients can help themselves in a lot of ways, and can also learn what to ask doctors for (although they won't always get what they want).
You might find this thread reassuring that all is not lost when the thyroid gets removed or goes kaput.
Just want to add that even though I don't know what factors precipitate it, (I had my thyroid removed in 2013) after years of experimenting with different doses of Synthroid, I am now holding steady at a good level at only 88 mcg. per day. Sue
Is THAT what it is???? It makes no sense to me that having no thyroid at all I am only taking 88 mcg. a day. I'm definitely not a small, skinny person (170 pounds) and even the doctor thinks it's rare but... for now.... it works! I also went to a endo specialist to find out WHY every time I do need to change my doses, even the tiniest little bit, I feel all kinds of side effects for about 5-6 weeks. After much testing, he concluded that I am one of the 5% that has a "super sensitive" system. (shrug)
You would only know if you were an excellent converter if you had TSH, Free T4 and Free T3 all tested from the same blood sample.
But a lot of places don't test Free T3, and it seems to be getting more rare for even Free T4 to be tested in some cases.
It is Free T3 level that determines symptoms in people with hyperthyroidism or hypothyroidism. If Free T3 is low then people feel hypo. If Free T3 is high then people will feel hyper.
In a healthy person the thyroid produces about 20% - 25% of the body's requirement for T3. The remaining 75% - 80% comes from conversion of T4 to T3 in various bodily tissues and organs e.g. the liver, the kidneys , the intestines, and some others.
The body needs T3 in every single cell in the human body. If the amount of T3 is too high or too low then the cells won't work at peak efficiency.
In people with no thyroid the people who are most likely to do well are those in which conversion of T4 to T3 in the organs and tissues can step up enough to overcome the loss of thyroidal T3.
A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg plus a measure of T4 at around 100 T4 :
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that the runs on which is said to be about 4 times more powerful then T4 with the average person needing to find, convert and utilise around 50 T3 daily, just to function.
Your ability to convert T4 into T3 can be compromised by low ferritin, folate, B12 and vitamin D so it's always suggested to keep these core strength vitamins and minerals at optimal levels, and likely maintain supplementation yourself as you maybe in the range, but not high enough for someone without a thyroid and needing to covert thyroid hormone replacement.
You should be dosed and monitored on your T3 and T4 blood test results and not your TSH: though I understand that as you have had cancer you need to keep your TSH suppressed which is good news as that is where the TSH usually goes when on optimum thyroid hormone replacement medication anyway.
and on monotherapy with T4 only both your T3 and T4 should be balanced, in the ranges at around a 1 / 4 ratio T3/T4 and we generally feel at our best when your T4 is in the top quadrant of the range as in theory should give us a higher T3 as it is where your T3 sits that gives you all the symptoms.
Too high a level of T3 for you and you have symptoms of overmedication and hyper type symptoms and too low a level of T3 for you and you have the equally disabling symptoms of hypothyroidism.
As you will see from the above by not replacing your " lost T3 " you have in effect been down regulated by around 20% of your overall well being, and your body will try and make this up, but given time, I believe this shortfall in thyroid hormone replacements pulls you down even further.
There is synthetic T3 - Liothyronine just as there is synthetic T4 - Levothyroxine :
I believe you are better placed in the States to get this prescribed than here in the UK .
There is also Natural Desiccated Thyroid which was the treatment of choice and used successfully for over 100 years prior to Big Pharma rolling out synthetic thyroid hormone replacement options in around the middle of the last century.
Again, as I understand things, you are better placed than the UK to be prescribed NDT.
NDT is made from pig thyroid dried and ground down into tablets referred to as grains, and contains all the same know hormones as tht of the human gland, namely trace elements of T1. T2 and calcitonin plus a measure of T3 and a measure of T4 in each grain.
I had RAI thyroid ablation in 2005 and became very unwell around 8 years later when treated with T4 monotherapy and dosed on my TSH to be " in range " rather than on my ever increasing symptoms and now I self medicate and take NDT and am much improved and have my life back.
Some people can get by o T4 only : some people find that T4 seems to stop working for them at some point in time and need the addition of a little T3 with their T4 making a T3/T4 combo ; some people find they can't tolerate T4 and need T3 only, and some people find that they feel better on Natural Desiccated Thyroid.
I think the first issue is to try and find a doctor willing to be open to prescribe other options of thyroid hormone replacement, test your vitamin and minerals and start reading up on this forum, as you are not unique, nor alone, and there is also more of everything " thyroid " on the Thyroid UK website who are the charity who support this amazing forum.
First step is to get full thyroid and vitamin testing
Testing 6-8 weeks after any dose change or brand change in levothyroxine
How much do you weigh in kilo approx
Likely 112mcg is still an inadequate dose
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
Just like in U.K. it’s possible to get testing privately in USA
I believe that in the USA hypo patients can still be prescribed NDT (natural dessicated thyroid hormones) - the very original replacement from 1892 which saved lives from then and still does today. There was no need for blood tests to be diagnosed but symptoms alone were known by doctors.
Natural dessicated thyroid hormones contain all of the hormones a healthy thyroid gland would provide.
Thank you human bean, Pennyannie, Slow Dragon & shaws for your warm welcome, counsel wisdom and website referrals. I've much reading and research to do:).
I was already overweight at 63.5 kg before surgery. I am now 72.6 kg. I usually force myself to walk in the evenings unless the air is bad from the wildfires.
I just hit my 45th birthday. I am 5 ft 2 inches in height.
My TSH is
Component Results
Component Your Value Standard Range Flag
TSH 1.05 uIU/mL
0.34 - 4.82 uIU/mL
Note New Methodology
Component Results
Component Your Value Standard Range Flag
Ferritin 23 ng/mL
12 - 252 ng/mLComponent Results
Component Your Value Standard Range Flag
THYROGLOBULIN <0.2 ng/mL
2.0 - 35.0 ng/mL L
This test was performed using the Siemens (DPC) Chemiluminescent method.
Values obtained from different assay methods cannot be used interchangeably.
Thyroglobulin levels, regardless of value,should not be interpreted as
absolute evidence of the presence or absence of disease.
Measurement of thyroglobulin antibody levels are most useful with concomitant
evaluation of thyroglobulin levels,as the presence of thyroglobulin antibodies
(anti-TG) can interfere with thyroglobulin assays.
Thyroglobulin AutoAb 124 IU/mL
<44 IU/mL H
This test was performed using the Siemens Centaur/Atellica immunoassay
I don't know enough to detail an answer on these blood tests :
All I can say is that ferritin, folate, B12 and vitamin D all need to be maintained at optimal levels and should be at least 50% through the ranges, as some ranges are too ide to be sensible.
I've read in many places that ferritin needs to be over 70 to enable the body to convert the thyroid hormone replacement - so I can see an immediate need to supplement there.
Ranges vary but I know now I feel at my best when I maintain my ferritin at 100, folate at around 20, active B12 75+ ( serum B12 500+ ) and vitamin D at around 100.
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can It Not Ever Get Better?
When will i feel better?
When will I feel better?
When to start feeling better?
Supplementing T4 with T3 - when did you start to feel better?
