Thyroid UK
85,858 members100,764 posts

Dr tells me im at risk for heart disease, severe osteo b/c TSH is .02??

Had to go to conventional endo today to be tested for Diabetes Insipidus not the MD that treats my thyroid. She scared me to death. She freaked about the amt of sythroid (125mcg) and the .02 TSH. She told me I was very likely to suffer severe osteo.. heart issues . Can some one help me with this....im so scared. She was furious at the t3 as well. Is 20mcg in the am and 15 mcg in the PM a lot with these levels T4 Free 1.0 - .8-1.8

T3 Free 2.6 - 2.3-4.2

Im so worried that she is right... PLEASE ANY ADVICE:):)

43 Replies
oldestnewest

She's wrong. She's a diabetes specialist and knows nothing about thyroid. Just thinks she does. The TSH is irrelevant when you're on thyroid hormone replacement, doesn't matter how low it goes. The most important number is the FT3, and that's still rather low - not even mid-range. If anything, you could do with an increase, because low T3 is far more dangerous for hearts and bones than a low TSH!

18 likes
Reply

what a horrible experience to go through. I tried to respectfully discuss w her what i have learned and she laughed and said i was totally wrong. Made me feel like i was going to regret my treatment. I dont understand why you cant find an endo who believes in T3?? It does make me doubt ...i cant help it...she scared me to death. She said my dose for t3 and t4 were insanely high.

Reply

Oh goodness! She knows nothing about it! There are people on over 400 mcg of T4, and over 200 mcg of T3 - not at the same time, of course, but those could be classed as insanely high, not 125 and 20! lol Those are quite low doses, even together.

Endocrinology seems to attract sadists, who enjoy keeping people sick and scaring the life out of them, with stories like that. And it's their lack of education that makes them anti-T3, and they don't seem to have the brains to work things out for themselves - like, why would the body make T3 if it's bad for you? Funny creatures, endos - or they would be if they didn't ruin our lives!

21 likes
Reply

Well said greygoose!

5 likes
Reply

Hi greygoose, I love your gutsy reply! Did you know about the levothyrox problems here in France? Just when I felt about right!.

Quite horribe that!.

Reply

I have heard about it, on here and on Facebook. But, I haven't taken levo for a long, long time, and it didn't suit me then, either!

Reply

It is a total nightmare, Thanks goodness I was warned. And an informed patient knowing about the symptoms.I´m horting things like medecin.And still had some old style Levos and Erfa to supplement. My doctor trusts me , had a full test, Tsh high, the rest low with the new Levothyrox. I feel terrible about the other people, Lawsuits are coming up as well.

But I can have as much Erfa as I like. I can even help my daughter out. It was along and stoney road to become a trusted patient , and an openminded doctor is hard to find . To get there? Mine just thought I was nuts, and to make me happy she perscribed the tests I needed. And watched me improove. Bless her.

Now she trusts me 100% on Thyroid issues.

I think most docs have not read the small print of thyroid treatment. It says TEST and test again, untill ALL is right and steady. TSH Ft3 Ft4. Not just for a day!, for one Lab.

She even tests the antibodys, every time, every 2 months. Which allows me to play. Brilliant.

Best I felt, is , when Tsh is below 1, Ft3 Ft4 high in the range.

I can allmost get to a state of happiness, and yes I can do, from time to time.

A complete test costs 60 Euros in France.

But I have basic insurance that covers this.

I know I´m lucky.

This is my experience, but I have read that multible times in various books.

1 like
Reply

Agree absolutely!

Reply

T3 isn’t prescribed much in Australia so I can’t answer for that but I’ve had low TSH like that and the Dr certainly didn’t flip. Just said to consider reducing dose on alternate days then recheck 6 weeks later. There’s no need to put you into such a panic. Completely unnecessary. In my case the dosage reduction caused TSH to go from .03 to 40 in less than a year. That caused them to flip but it was at their instigation that it rose so quick. Go figure.

3 likes
Reply

Did she actually check you for diabetes ? I would ignore her comments re tsh as others have said. But I was curious re diabetes and if it is type 1 diabetes as both can have autoimmune causes.

Reply

RobinAnn is correct DI has nothing to do with insulin. It involves the pituitary gland

1 like
Reply

My doctor never tests my TSH. It's only usefull for, at best, initial diagnosis.

For piece of mind- check you pulse every morning. Is it below 85.

1 like
Reply

it is way below 85

Reply

Correct me if I'm wrong... but diabetes insipidus has nothing to do with sugar diabetes. It's a completely different type of diabetes having to do with adh hormone (or something like that) which has to do with the pituitary gland not the pancreas and insulin.

1 like
Reply

DI relates to vasopressin, known as anti-diuretic hormone. People with an imbalance urinate too much, as the body can't concentrate urine successfully, so are thirsty all the time.

Reply

And if you have a pituitary gland problem, its quite possible that your TSH CAN'T rise as it is a pituitary hormone. Very low TSH is only a problem wjhen coupled with very high FT4 and Ft3 as in HYPER thyroidism - yours isn't even suppressed.

2 likes
Reply

RobinAnn You are correct.

Reply

Thanks. Who doesn't live to hear those words... made my day.

2 likes
Reply

You poor thing. What an awful experience but isn't it great that we have this forum? I'm absolutely appalled by what I'm reading from you and others about their experience with GPs and (often worse) Endos.

I confess I haven't seen a GP in years. I couldn't get a T3 test or any kind of diagnosis so now save up to get tested privately and source T3 from abroad. Hope you're OK. X

6 likes
Reply

Look up a response from Diogenes from a few days ago to comments on a Pulse article. He says the research was flawed and as a clinical scientist he should know.

1 like
Reply

Having trouble finding the article....if you have a moment can you post the link?

1 like
Reply

Sorry do not know how .Post was 16 days ago by jadzhia"Third of all patients on levothyroxine have no reason to take the drug ,claim researchers"

Diogenes replied.

1 like
Reply

What are you trying to point on from this article Treepie? Isn't is saying the opposite of what we are saying?

Reply

Not the article ,Diogenes response to the post re osteo arthritis and heart problems I.e. the studies wete flawed.

1 like
Reply
Reply

Posts started by diogenes can be found here :

healthunlocked.com/user/dio...

Replies from diogenes to other people's posts can be found here :

healthunlocked.com/user/dio...

Treepie, I couldn't work out which response you were talking about.

Reply

Bean,The post above yours gives the link back . Pittsburgh's endo told him about osteo arthritis and heart problems and I was referring to Diogenes comments on the flawed research.

Reply

They know nothing useful re hypothyroidism, & even ess reagrding secondary hypothyroidism. My latest endo follow up letter stated my issues were caused by self-medicating. Odd the issues started 40 years ago, & I've been self-medicating a little over 2. I'll always trust the admins & clever folks on here over an endocrinologist!

1 like
Reply

it is so scary....when you have a Dr whom made it thru med school ,that you are suppose to trust, perceived as one of the best in your city, look you in the eye and tell you are harming yourself and it could be life altering. Especially when you tell them you learned the info you are debating with her off the internet...albeit credible resources...and she laughs..URGH:(:( I looked at her and said how can feeling the best i ever felt be killing me?

Thanks everyone for minimizing the fear..I appreciate your responses.

3 likes
Reply

Dear Pittspurgh!

All I can say about your Endo and now you can laugh - She is talking out of her arse!! I am on 200 mcg of T4 and 20 mcg of T3 - my TSH has been as low as 0.09 but that was when I was on 250 mcg. Also, although considered to be non diabetic now, when I came out of hospital a couple of years ago, because they had lowered my T4 in hospital, my HB1Ac had just gone into the diabetic range, I think it was 49 - I was told that was most probably because my thyroid was out of kilter and it should right itself and it did. It is now in the normal range.

I tell you, I could spit feathers at these Endo's as they appear to know Jack s*#t about thyroid conditions. T3 is fine, if used correctly and on the right dose. The only reason they hide behind these myths and so called studies which have no relevance to people with thyroid conditions, is purely down to money and how much the NHS is being charged if you live in the UK.

I have had thyroid problems all my life, as II was born with only a partial non working gland and I had no problems apart from a slight alteration during childhood, until my early 30's and then they dramatically changed everything. Caused so many problems and now ironically on the original dose plus the T3. I have been on the T3 for over twelve years now and had several heart scans and no problems.

I would seek a second opinion definitely. For the record, I had to report my Endo last year for her conduct - didn't get me very far, but I had to make a stand. She also said I was at high risk for osteoporosis and insisted I had a bone density scan. The results came back as that I had less than a 3% chance of any problems with my bones or likely chance of fractures. So what my Endo and your Endo said about T3 is absolute BS!

PS Sorry for the language, but it makes my blood boil, they ought to walk in our shoes. Let us know if you get a second opinion with both your thyroid and diabetes.

Take care :)

3 likes
Reply

You should buy the book Tired Thyroid by Barbara Lougheed, it wii help you understand your thyroid better than any other book

Reply

I just finished reading Recovering With T3 over the weekend It was excellent as well. Thank for the reference...i will look it up :)

Reply

Hi I would go with the good advice that greygoose states.

The surgeon professor who performed the operation to remove my thyroid sent a letter to my doctor stating that my TSH was to be keep suppressed i.e. low.

Here it is in French Je lui demande de mainternir la TSH entre 0 et 1. In English my doctor was told to keep my TSH between 0 and 1.

This surgeon is an eminent professor of Thyroid surgery with over 30 years experience. But hey your Endo thinks that she knows best. I don't think so.

Please stop worrying.

2 likes
Reply

You guys put a smile on my face...i will take comfort it all your experiences and knowledge. Im in the US. So your accents crack me up too:) I don't understand why the US Dr's are not up the knowledge of T3 etc. What is their incentive to have such angst. against all this info,?? Cause it is a big issue. They have such anger when they find out what im on. Don't they have continuing education where this is taught?? That is what I just dont get. I don't need to see that endo. anymore... I go to a homeopath MD who is 100% on board. I only had to go to the endo b/c the homeopath MD could not treat for Diabetes Insipidis.

1 like
Reply

UK doctors aren't up with knowledge of T3 either. Believe it or not, as a general rule thyroid treatment is much, much worse in the UK than it is in the US. That is why UK patients have had to learn how to care for themselves.

One of the problems we all have is that medical knowledge and medical education originates with pharmaceutical companies nowadays. And for them, a patient who is cured is a customer lost. The makers of Synthroid have been telling doctors that NDT and T3 are dangerous, unreliable, old-fashioned, and unnecessary since the 1970s. The research which has been done on NDT and T3 has been badly designed as well. Big pharma knows what results they want, and they design their research accordingly. Negative results are simply not reported and never see the light of day.

Reply

I just received an emailed survey from the hospital on the care received at the endo's. This should be fun...LOL

5 likes
Reply

Just a small detail. If you took your medication before your blood test your T3 is very likely to be sky high on your blood test results. If you measure it later in the day, say about 4:00pm then it will be very low. Never take your meds the morning of your blood test.

The same thing happened to me, I was helping with our election the day I went for a blood test, we were so busy and frantic that I forgot and took my meds before my blood test. I had an emergency call from my doc telling me to stop all thyroid medications and go and see him immediately! I realized what I had done and emailed him back telling him of my mistake and for him to calm down.

Greygoose (above) is dead right, your results are just fine and yes, even a little low. Your doc is ignorant, most of them are on this topic - but if you are getting T3, be a bit diplomatic, we are lucky to get anything other than Levo (ugh!).

Oh and if you really are in Pittsburg, try True Health Labs online out of Georgia and get your tests done privately, they do a complete thyroid panel for about $260, you only need one a year. That's where I get my tests except for the once a year I get to humor my doc (TSH and T4, and T3 if I beg and plead - tells you almost nothing).

1 like
Reply

I fasted and did not take any meds before my blood work. I did it correctly. I have no issues getting my blood work that i need. The Natural path MD is right on board with all this. My insurance pays for the blood test. This happened b/c I had to got to an Endo for something else and she when crazy when she saw my labs. Made me think that the Natural path MD was KILLING me. I am a lucky one in the sense that I have found some one to treat my symptoms and believes in t3. But the issue i have is that he is not a mainstream Dr. When any mainstream Dr finds out, they go crazy and tell my husband this guy i s going to kill me . Its awful .

1 like
Reply

OK, another basic factor. Do you feel better with Dr Natural Path, or Dr Mainstream? Follow the path which makes you feel well, it doesn't matter what the other guy thinks because MD's education on thyroid issues is minimal and guided by big pharma. In addition to this, the endocrine system is very complex with about a dozen variables all interacting with each other. For this reason don't be too angry with MDs - endocrinology is hard! The bottom line for you is, what makes your symptoms go away. When you feel OK then all of those variables are working in unison as they should be and if the medical world has suddenly turned against T3 temporarily, well, the truth will emerge again and T3 will be back in. T3 is the right way to go and is the only way to go if you are a bad converter - it is NOT killing you, it will not kill you.

1 like
Reply

Don't be scared! As others have rightly said, your Endo is wrong. I HATE how they intimidate patients like that. It's disgusting and not the right way to treat people.

From STTM site (https://stopthethyroidmadness.com/healthy-heart-with-t3/)

"But my doctor says T3 is dangerous for my heart!

To the contrary, there are NUMEROUS medical studies which underscore that the judicious use of T3 (and can apply to NDT when used correctly since it has direct T3) has been very positive for heart and cardiovascular health.

For example, this study ncbi.nlm.nih.gov/pubmed/182... states the following:

'Clinical studies have shown that mild forms of thyroid dysfunction, both primary (subclinical hypothyroidism and subclinical hyperthyroidism) and secondary (low T(3) syndrome) have negative prognostic impact in patients with heart failure. In these patients, the administration of synthetic triiodothyronine (T(3)) was well tolerated and induced significant improvement in cardiac function without increased heart rate and metabolic demand.'

Another study academic.oup.com/jcem/artic... found positive results with T3, stating:

'Altogether, our data indicate that short-term administration of substitutive doses of synthetic L-T3 state reduces activation of the neuroendocrine system and improves LV SV in patients with ventricular dysfunction and low-T3 syndrome.'

This study hindawi.com/journals/jtr/20... reveals that T3 plays a key role in repairing a damaged heart:

'The potential of TH (thyroid hormones) to regenerate a diseased heart has now been tested in patients with acute myocardial infarction in a phase II, randomized, double blind, placebo-controlled study (the THiRST study).'

In fact, research circ.ahajournals.org/conten... has shown that low T3 can mean a negative outcome in cardiac patients:

'…low T3 concentrations are a strong independent predictive marker of poor prognosis in cardiac patients and might represent a determinant factor directly implicated in the evolution and prognosis of these patients.'

Here’s a study ajpheart.physiology.org/con... that shows that even low dose T3 can help even with hypertension in improving the diastolic:

'While cardiac dysfunction could not be completely prevented in the absence of antihypertensive treatment, T3 may offer additional benefits as an adjunct therapy with possible improvement in diastolic function.'

And the above is only a smattering of all the medical studies about the importance of T3 for one’s heart.

1 like
Reply

I dont understand then why are the Dr's fighting the literature?? WHY... im not understanding. We are suppose to have the best health care in the world in the US. Why are we left treated like this...?Any opinions?

Reply

There's something I find weirdly comforting about a terrible doctor. For those of us who self medicate, it confirms that even if we are on the wrong track. At least we are not endangering our health as much as we would be if we let doctors jerk us around and have their way with us!

It's amazing how fire and brimstone they are! Crying that if you don't follow their exact path, you will fall to pieces. But what they never mention is the dangers of the treatment they suggest, or whether there will be any aftercare if they are not correct.

At first when I started self medicating I was scared that I would do a rubbish job and hurt myself in some way. But then I remembered that doctors hurt people all the time, and are happy to leave people languishing on the wrong medication for years, getting sicker and sicker, and I realised I couldn't do any worse :p

3 likes
Reply

good point!!

Reply

You may also like...