I had my thyroid removed Oct 2016 for thyroid cancer (pap) after suffering for 3 years with horrible panic attacks,eye popping out of socket, vertigo and a 10 pound weight gain in 1 month as a (fitness nut) after repeatedly going into my primary doctors office and getting no help (bloodwork always good only TSH).
Fast forward to 1 year post thyroidectomy and the 3 year nightmare was a walk in the park compaired to having no thyroid and constantly being told my levels are "PERFECT" 30 pound weight gain in 1 year is "PERFECT" and having feet pains that are so bad I cry because I can't walk or stand, lets not forget that im "Perfect" Im to the point where I can nolonger deal with my weight or pains that I might be forced to file a medical complaint because my endo just refused to look beyond the test and treat the patient we are all not one size fits all. Very flustrated in my body!
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Batty1
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Some endos are ignorant, unempathetic pigs. If your endo is only testing TSH I suggest you find a new endo. TSH is a pituitary hormone. It says nothing about the levels of thyroid hormone. In addition, thyroidectomised patients can't produce T3 in the thyroid and are reliant on peripheral conversion of T4 to T3 and often need Liothyronine (T3) added to Levothyroxine to have decent levels of T3.
Is there any way you can order your own labs for TSH, FT4 and FT3?
What is happening with your eye? Have you seen an optician? Hypothyroid patients can have Graves eye disease which causes bulging eyes.
The following issues after thyroidectomy (non stop)
Feet pains feel like im walking on gravel (at times unable to walk or stand)
Ankle stiffness
Knee pains and hips
Hamstring pains (one leg)
Burning sensation random on skin (no rashes)
Weight gain
Fluid retention (2- 6 pounds)
Migraines past year off and on
Went to Rheumy (no Arthritis)
Current health issues
Meineres disease (water pills for attacks), Mod to Sever Psoriasis (on Stelara) and Dry eye syndrome (possible sjorgens) and my Cholesterol shot up 35 points.
In the UK we use Free T3 which is the unbound to protein T3 available for cellular use. I'm not so good with Total T3 but I should think there is a lot of scope to increase Cytomel dose to raise TT3 high in range. It will suppress your TSH and if you have an endo who is a bit fascist about TSH you will have trouble but you will probably feel a lot better.
If you have sufficient Cytomel I would increase dose to 3 x 15mcg daily. If not, and your endo won't increase dose, write a post asking members to send you a private message where you can obtain T3 without prescription. You may have to use a different brand to Cytomel.
He is suppose to call me today or Monday (military Doc awful) and Im going to ask him to increase my Cytomel again but I doubt he will he wouldnt 6 months ago and I dont think thats going to change. I would like to know where I can obtain T3 if he won't.
I had radioactive iodine aged 19 following diagnosis of graves at 16. My intitial Endo always looked at symptoms first. I am now nearly 50. Weight gain began as soon as thyroid function removed. I have been overweight all my adult life (having been very skinny previously). When l was having my RI aged 19 the consultant endocrinologist treating me sent the medical student finalists in to practice their diagnostic examinations on me and quipped that l knew more about the physical signs of thyroid disease than most of the medical finalists! Sadly throughout my life (it's 30 years on now) l have found that even the endocrinologists seem to be entirely reliant on the bloods and don't even seem to be aware of how to physically examine a patient. Any dissatisfaction with this approach leads to a knee jerk reaction from many doctors where they 'accuse' you of looking at the internet or trying to find an 'excuse' for being fat. A couple of years ago my neck and face swole up and l felt completely lacking in energy. My husband could see that my face was not normal. I mentioned this to my Endo as l happened to have an appointment while my face was still swollen and she told me 'you just have a fat face'. This has been happening on and off since and other symptoms are arising but my GP has recently reduced my levo and wants me to reduce it again - blood results and phone consultations - no point in physical examinations as the GP will always find another explanation for any symptom than it being thyroid related. I am an intelligent rational person but a lifetime of being treated with scepticism by doctors who actually couldn't care less about the impact of my symptoms on me makes me want to avoid medical attention. My theory is that the fact that any adverse impact on my quality of life or life expectancy will not be traceable to them through objective evidence (ie bloods) or objectively tangible in any way, means that they cannot be held responsible for the adverse impact of under-replacement. Unfortunately l am now cynical enough to believe that many doctors care little about the outcomes for their patients if they cannot be held responsible for a negligent act. A culture of medical defensiveness combined with lack of resources to properly examine patients and learn about the subtleties of the disease has led to a rejection of approaches that rely on medical judgment and the art of diagnosis and the adoption of a one size fits all based on interpretation of bloods according to published guidelines. In other words the profession is more nervous of being accused of failing to follow the rules on bloods than failing to treat an individual patient optimally. Because it is not nice to admit to yourself as a doctor that you are not treating patients optimally, it is easier to blame the patient for imagining symptoms or having several unrelated conditions. Patients who argue are pathologised- l was once told that my arguing was a symptom of being over-replaced. So l sympathise.
Your not imagining anything and your issues are real and yes they accuse us of reading to much internet only because it shows them that they are not up on the latest information and that annoys them. I however love when the male doctor recommends a mental health doctor because your unhappy feeling like you've been hit by a truck every day. Yes I get the speech from my endo that I should go see a specialist speech and if I get that again from him I will file a complaint on him.
Yes, definitely. Over the years I have seen six endocrinologists, NHS and private. Only one of those six was empathetic, sympathetic and he listened to me. Unfortunately he left and went to Oxford to research diabetes
I agree with Clutter , it would be better if you could get your own blood tests via Medichecks or Blue Horizon
Oh no!!! Not just you some are cold as ice and uncaring Batty1. Sorry to hear about your struggle with your health. Keep posting you will get good advice !! Xx
This woman has had a case before the Scottish Parliament and Dr Skinner would have been a fearless defender against the way we are diagnosed/prescribed these days. He died of a stroke due, his patients and staff believe, because he was hounded by those who was against his method and appeared before GMC several times but was always found he treated his patients properly.
Get your vitamin D, Folate, ferritin and B12 tested
I think you are in a USA?
Seeing functional doctor may get you further
Most/many endocrinologists seem to have no idea or interest in the importance of good vitamins, good gut function, the prevalence of low stomach acid, leaky gut or gluten connection
This post has given me a flash back to when I couldn't walk on the raised bumps at crossing points and I used to have men's soles put on my shoes because they were thicker but no one ever suggested it was a thyroid imbalance. I stopped my love of walking. May be we should air these effects more often.
I have to say I have seen three extremely nice and sympathetic endos this year. All female as it happens. The thing is, I have not had to argue with them about how I feel because my blood test was so clearly hyperthyroid that there was no question of needing to convince them I was ill! (Took me 6 GPs to get the original diagnosis though; the first five either hinting or telling me i was basically just overanxious, leaving me miserably ill and desperately worried for months longer than necessary). Even recently when my bloods have been normal but I've been feeling very ill the endos have been kind.
I've no idea how thing will go if I don't improve and I am still trying to convince them though.
I Hope they fixed the hyper part of you without making you too hypo. Prior to my thyroidectomy for (cancer) I had symptoms of hyper and hypo a 3 yr roller coaster and personally If I know then what I know now I would not have had surgery I would take my chances since I feel no better maybe worse then before my surgery and my medical care is lousy then as it is now. Im in a lose lose situation.
I'm so sorry you feel like you are in a no-win situation. It is difficult looking back and wondering if you would have made a different decision but of course that is the thing with hindsight. You will have made the best decision with the information you had at the time. I think you are in the right place here though - there are some very knowledgeable people whom I have every confidence can point you in the right direction towards improving your health despite the endocrinologists.
I read Dr Gordon Skinner's and Dr Peatfield's books recently and I imagine that anyone suffering from undiagnosed hypothyroidism would read these and feel they had found a true ally because they talk all about how ill people can feel while doctors tell them their blood tests are fine. There is also a book by Paul Robinson who could not feel well on thyroxine but was always being told his blood tests were normal. He explored using only T3 instead and recovered his health by experimenting very carefully with dosage and especially timing to find where he felt best - not where doctors told him he should be.
When I was diagnosed you didn't see an Endo. I think I saw someone privately about 30 years later as my then GP was useless. My first GP was also hypothyroid so he at least got up to speed!
Endos are like mechanics, most are crap. Find a good one and you’ll be going to them for life. Just like you wouldn’t trust your car with a bad mechanic, you shouldn’t trust your body with a bad endo. You need to shop around, of course that’s easier said than done, but there’s nothing worse than staying with a bad doctor.
It's so easy though to think you are stuck with it. Yes this site is wonderful plus I felt better knowing I wasn't on my own but I can chat to others who understand!
My endo lacks empathy, sympathy and just doesn’t listen to me, I tell him how I’m feeling and how I’m being effected and it goes in one ear and out the other. Have thought about pals but then think what’s the point !!
I manage my condition I know how I feel and I just get on with it.
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Is it the adrenals or the thyroid?
Is it hypothyroidism or just iron deficiency?
Help please, Im sure Im hypo but results normal going to take Raw Thyroid
