Why do endocrinologists ignore symptoms and just look at blood levels within range?

[bmrj]

My TFTs all fall within normal limits. But I believe I am hypothyroid slightly. MD isn't buying that. TSH 1.46 (.46 - 4.68), free T4 1.3 (.79 - 2.09) and recent free T3 3.07 (2.77 - 5.27).

[greygoose]

Endos don't know anything about symptoms. They don't learn about them in med school. All they learn about is the numbers - and mainly the TSH - and, to be honest, yours look quite good at the moment. Although your FT3 could be a little low.

Have you had your antibodies tested?

[Hidden in reply to greygoose]

Wow greygoose that is very alarming if they are only learning numbers. It's very sad too. I think endos should be obligated to read about all the people who have been mistreated first and foremost.

[greygoose in reply to Hidden]

Maybe, but they never will be. It's not about making patients better, it's about creating and keeping customers for Big Pharma. That's all.

[bmrj in reply to greygoose]

Yes. Thank you. I have positive antibodies in the past.

[greygoose in reply to bmrj]

Then you have Hashi's. And, Hashi's doesn't go away. The antibodies fluctuate, though, so no point in retesting.

[SlowDragon Administrator]

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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Getting vitamins and thyroid antibodies tested next step

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

[bmrj in reply to SlowDragon]

My free T4 is also within normal. Vit D low normal. Taking about 1000-day. Ferritin low. On Fe. Can’t take too much due to stomach distress. Thank you.

[SlowDragon Administrator in reply to bmrj]

So you need to test thyroid antibodies ....if antibodies are negative...getting an ultrasound scan of thyroid

How low was vitamin D?

How much vitamin D are you supplementing....retest twice year when supplementing

vitamindtest.org.uk

Never supplement iron without doing full iron panel test for anaemia first

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid issues are as much about optimising vitamins as thyroid hormones

[suggi]

Why are the endos all the same? I am in the same boat and now my endo said no more testing for FT3 as it is like weighing one of the hairs on your head on your bathroom scale - means nothing. From what I have read this is not true. I had RAI to destroy my thyroid in 2016 for severe Graves and have not been right since. I have read tht some people who only take Levo which is T4 can not convert to T3 properly and that is why they remain in range but are still hypo. Of course she does not believe me. I even went for a 2nd opinion and that endo only tests TSH. At least my endo does test FT4 plus TSH;. She said the same thing tho - you are in range so you are OK but I am not OK - so I feel for you. I am in the US Endos are all the same apparently all over the world. I am sick of losing my hair, freezing when everyone else is hot, insomnia, dry skin, cracking nails, fatigue, etc. Then they take offense and offer you antidepressants. How is an antidepressant going to make you warmer and stop hyour hair from falling out in bunches? AAGGHH. If you find a way to get through to your endo please post it as I would love to know that trick. Thanks and good luck (to all of us)

[beh1 in reply to suggi]

Hi Suggi. I may be speaking out of turn, but if so please just ignore. But I’ve heard that in the States there are functional doctors who are happy to prescribe NDT. And that the famous Hillary in fact uses Armour. Could that be a route to better thyroid care? I am in UK, so it’s not available here.

[SlowDragon Administrator in reply to suggi]

First you need to get FULL testing

TSH, FT4 and FT3 and EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially after Graves

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).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Are you on strictly gluten free diet?

If not ...something to consider...

While still eating high gluten diet do coeliac blood test first .....buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy,)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

All these links are for USA based thyroid specialists ..who look at whole body ....not just a blood test

amymyersmd.com/2018/04/3-re...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

blumcenterforhealth.com/med...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[Batty1 in reply to suggi]

Im in the US too and had thyroidectomy in 2016 .... 7 endos and they all ignore the FT3 no idea why only thing Ive found was they are following the American Thyroid Association recommendations.

[humanbean in reply to Batty1]

I remember when the ATA produced their last guidelines a few years ago. Their facebook page was swamped with thousands upon thousands upon thousands of messages from angry, screaming people telling them what they thought of them and their new guidelines. It didn't change anything, of course - the ATA had made their minds up and they weren't going to change the guidelines. I would guess that the messages got deleted eventually.

[Batty1 in reply to humanbean]

ATA should mind their business,lol. My Endo has ATA guideline blurb in his bio!

[humanbean in reply to Batty1]

Presumably using the ATA blurb helped him to avoid thinking of what to write in his bio.

[Hidden in reply to Batty1]

The same thing happened in UK with the BTA on their Facebook page. Every post deleted, no explanation from BTA.

[bmrj in reply to suggi]

Exactly. I’m in the US also. All they want to do is treat anxiety with an SSRI.

[diogenes Remembering]

They do so because they have been taught to do so. And that may have been years ago, when the simplistic idea of "within-range therefore OK"was held and taught as a true given. The crime of categorisation (that is, you are somewhere in the range therefore you must be OK) is the real obstacle to overcome in endocrinologists' and doctors' thinking. They treat you not as an individual with your own needs but rather as a "unit of medical requirement". And always they should be challenged on this attitude, because they surely must know that an individual is in front of them and not a nebulous Mr or Mrs Average. As for ignoring FT3 - this is the hormone that drives ones health so to say that it is useless to measure is being shall we say, lacking in basic intelligence.

[Hidden]

The way it is now with all illnesses ...they treat the tests not the patients.. it is not good. the next link is for great thyroid products.

Link removed by admin

[thyroidnodules in reply to Hidden]

yes you are right, it's with all illnessses. i was admitted to a and e with chest and neck pains and painful breathing. i didnt want to go in but they insisted. i have to say they were very thorough with all their tests - however, as all the tests ticked their boxes, they told me i could go home, even though i was breathless and had had no sleep. i had to struggle to a bus stop as it was 7.00 am in the morning and i had been up all night . the doc suggested that it could be gastritis as i had been away for the weekend and maybe overdid it lol. not one of the staff spoke to me other than to take tests, probably because of covid but it was not a very good experience. its the same with my endo at the hospital, decreasing my tablets as she is not happy with my ths being suppressed and in the letters to my gp she gets the dosage all wrong from what she stated in previous letters. i am just doing my own thing now and laughing about it, as you can get very frustrated. when you take them up on it, they deny it all

[ASkepticalConsumer]

Good analysis here. Before the blood tests and lawsuit culture, Drs operated as "treat to the elimination of symptoms". That is how my beloved momma stated it. There was no other way to address a patient with symptoms.

Everyone is right on this board, it is about their indoctrination in med school financed by Big Pharma and treat as many as possible to maximize income etc.

I am in Canada, there are no private doctors or specialists, so only option is to go to the US for care once (hopefully) things open up. My dear friends in California have a great doctor and he is agreeable to assist me. I have Hashi and not a doctor to be found in Ontario Canada who knows the slightest thing about it. Been through 3 Endo's over last 10 years, all useless and they hide behind the ranges.

Poor thyroid management is the leading cause of congestive heart failure which is the leading cause of death of elderly ladies, same that killed my beloved momma.

It will not happen to me and I am fighting mad. I have every known symptom of Hashi and hypo but my Endo says blood work is fine, then I am shown the door. I bring in articles to her like on pooling and thyroid resistance (my case I believe) and she files it.

Fight on everyone!

[m7-cola in reply to ASkepticalConsumer]

Good for you. Keep on fighting for your own health. By the time you are through you’ll know much more than almost all the endos!

[Rosebud1955 in reply to ASkepticalConsumer]

So true! I too live in Ontario Canada. The endos are just as useless as the GPs, I have a half decent one, he listens but does nothing. When he gives me the requisition for blood work, I add on every test that I can think of, he’s aware of it but he says nothing when he gets the results. He orders what ever I tell him to order just to dismiss me. I’m happy with that because I tweak my Levo & cytomel the way I want to. After seeing him for three years, he told me on my last visit that my thyroid is still giving me a little hormone to supplement his dose. I had a total thyroidectomy for cancer, all these three years he didn’t realize that because he is so obsessed with my suppressed tsh. They’re all useless and heartless. We’re all in this together. Thanks for this forum, I gained the confidence to fight back and call them out on their ignorance. I now use my Endo only to order labs and write prescriptions, that all they’re useful for. I only wished that we had private labs in Canada, that’s a bit backward for us. Shame on Canada!!!

Let’s all keep up the good fight and continue supporting each other!!

[humanbean in reply to Rosebud1955]

I only wished that we had private labs in Canada

You do have some limited options. See this link and search for the word "Canada" :

stopthethyroidmadness.com/r...

It might be worth asking some of the USA labs if they will do testing for Canadian residents.

[humanbean]

Why do endocrinologists ignore symptoms and just look at blood levels within range?

In my opinion, they are a) sadists, b) misogynists, and c) they think anyone with a thyroid problem is a brain-dead idiot, a drug-seeker, a liar, and a hypochondriac.

[Hidden]

The problem seems to be centred on what recommendations are given to the doctors by their CCG. The CCG follows the recommendations of the County's Area Prescribing Committee and that follows what the BTA and others recommend.

In the case of NDT this leads to each doctor being effectively prohibited from prescribing NDT and in many cases their therefore being "unaware" of the existence of NDT, even when they have read and understood the recommendation.

ALL of the reasons stated for the banning of NDT are quite ridiculous, even comical.

Would I, if I were a doctor, complain bitterly if I knew what I now now know, or, would I keep my job and look forward to retirement?

A situation somewhat similar to the Great War (1914-1919) when the phrase ""Lions led by donkeys" became popular.

[SlowDragon Administrator]

Ft4 only 40% through range

Ft3 only 12% through range

So under medicated and very poor conversion

Extremely low ferritin levels won’t be helping

Important to get all four vitamins optimal

Vitamin D,folate, B12 and ferritin

[bmrj]

TY. I agree. Now to get the MD’s to get it. Ugh.

[vocalEK]

My answer to your question is that they want to be treated as a talented chef, but can only cook if given a cookbook. The lab results are their cookbook. Actually improving your symptoms would require a certain amount of creativity on their part.

[bmrj in reply to vocalEK]

Exactly. I agree. And In their 20-30 minute window of seeing you after 6 months, they just don’t have time!!!