T3 endo sending me for second opinion

[eghjm100]

My endo is cross because I wont reduce the T3 at the moment I take 60mcg per day all taken at 6 am in the morning she constantly tries to get me to reduce them but I resist however she has now said she is going to ask my gp to send me for a second opinion she said that she hopes it will change my mind and reduce the dose is ther any one who knows of a sympathetic endo in surrey or berkshire that I could nominate for the second opinion. BTW she said she has heard bad things about the Thyroid UK web site

[humanbean]

BTW she said she has heard bad things about the Thyroid UK web site

As a regular reader of this site I'd love to know what doctors dislike about it. I wouldn't pay any attention to their views, but I'm still curious!

[Hay2016 in reply to humanbean]

She probably doesn’t like that it educates people thus empowering then to fight their corner and not accept the platitudes and nonsense that we used to accept. X

[humanbean in reply to Hay2016]

I like that idea.

[DippyDame in reply to Hay2016]

Hear hear!

[littlecandle in reply to humanbean]

The endo I saw this year said that this site is populated by crazies and that I would be better off consulting the stars to get a balanced view of my thyroid problems. That said, he also wants to cut my dose down below 100mcg, despite knowing that I can barely function on 100, never mind lower. All my thyroid issues right now are caused by the menopause, according to him, and I shouldn't have any symptoms at all since my bloods are really good. He does not believe that your bloods can say one thing and your symptoms another.

[experimental1 in reply to littlecandle]

Like most doctors who treat by lab values, only. No one is a lab value, including that thick headed doctor. The doctors who are truly good have to unlearn what they were taught in medical school or at least continue their education by self-educating themselves.

[humanbean in reply to littlecandle]

You can buy Levo online without prescription if you want to control your dose yourself. You would have to write a new post asking for people to send you sources by private message because we aren't allowed to discuss them publicly on the forum. Be aware that some sources are NOT reliable.

[vocalEK in reply to littlecandle]

my bloods are really good.

Precisely WHICH blood values are really good? How does he define "really good"? Most of us agree that the free thyroid hormones need to be at least in the upper half for effective suppression of hypothyroid symptoms. Is your Free T3 in the upper quadrant? Or does he mean "TSH" when he says "bloods"?

[NWA6]

😱 what a gossip! I bet she doesn’t have any hard evidence to bank up her ‘bad things’ about TUK just like she has no hard evidence to warrant her anxiety about your dose 😩

[MissGrace]

‘Bad things’ - what a childish, unscientific and unprofessional thing to say. I’ve heard lots of ‘bad things’ about GPs too. Lol! 🤸🏿‍♀️🥛

[eghjm100]

she has tried everything to get me to cut down sent me to the bone doc who immediately told me i was taking t3 for all the wrong reasons she told me i would have heart problems she said I should consult the British Thyroid guess what they say that investigations are ongoing no evidence I'm going to chuck that one at her next time lol

[penny in reply to eghjm100]

What would she say to my 200mcg per day of T3?

I recently had a nasty fall and bent my clavicle (collar bone); I say ‘bent’, which is exactly what it did, it did not fracture. According to established thinking my bones should be like eggshells. (I had my tutor in Bonework reposition my clavicle and it is now back in place with only soft tissue damage to repair.)

[experimental1 in reply to penny]

Are you self treating or seeing a private endo? How long did it take you to reach that dose? I live in the US, order private labs, and try to avoid doctors, though I have medical insurance. Doctors only order TSH & T4. Right now, doing 25 mcg of liquid T3, purchased from a reliable online research company. Don't even feel it, but several times, using NDT, I became hyper from titrating too fast. Not pleasant. Continued success, penny.

[eghjm100 in reply to experimental1]

Am under the NHS in UK but it's expensive here so that's the reason they don't like giving T3 I used to be on 120mcg but they made me cut back I put on weight slept all the time and loads of other symptoms but a Pharmasist gave me a schedule of how to take all my meds keeping Thyroid meds away from food other med etc so I now take it all at 6 am but my endo says that's dangerous she said would you take all your pain meds in one go?

[experimental1 in reply to eghjm100]

I know dosing of T3 or NDT is still in debate. Dr. Lowe, as you know, took his full dose of T3 in the middle of the night. Other doctors recommend multiple dosing through the day. When I was prescribed Cytomel, 25 years ago, I took a12.5 mcg at 6 a.m. and the other half at 11 a.m. Ultimately, it's whichever way works for someone and how they're feeling.

[experimental1 in reply to eghjm100]

Your doctor's pain medication analogy isn't sound. Truly, apples and oranges. Taking a full days dose of pain medication would be risky and even dangerous. He or she is showing their ignorance regarding thyroid medication. When doctors can't explain something or don't understand, they try to scare the patient.

[vocalEK in reply to eghjm100]

she said would you take all your pain meds in one go?

That's a dumb question. Taking a day's worth of diphenhydramine HCL (brand name Benedryl) all at once would put you to sleep for at least 4 hours and allow most of your allergic symptoms to reappear after that. It is a 4-hour dose. On the other hand, Loratadine (brand name Claritin) is a 24-hour dose. So it depends on the chemical and it also depends on how your body metabolizes the chemical and WHEN you need it to work for you.

[dbrowning02 in reply to experimental1]

Hi experimental1 I'm also in the US and dealing with figuring out what's going on with my thryoid. I feel like I'm under medicated and my hormone doc (Who has been kind enough to help me figure out what's going on) thinks I'm over medicated. Would love to see what is helping you.

[experimental1 in reply to dbrowning02]

At the moment, nothing is helping. My primary, who's a relatively new doctor, after having been an Army medic, suspects that I might have central hypothyroidism and he passed me off to an endocrinologist who didn't seem too curious or interested in my long tale of adrenal and thyroid problems. I've slowly gained 35 pounds over the last 7 years, developed sleep problems, though I don't have sleep apnea, saw a major decline in libido and developed erectile dysfunction. I also have pre-diabetes and dyslipidemia, for which my doctor keeps asking if I'll try a statin, which I steadfastly refuse.

I believe I do have central hypothyroidism and I'm going to slowly titrate T3. Cytomel worked 25 years ago and I believe it will work, again, if I can reach a high enough dose to overcome cellular resistance. The one medication I'm going to try is glucophage(Metformin). I bought it online, from India, from a site used by people I talk with on a men's health site. For whatever reason, its never been offered to me. I must lose weight. My hsC-reactive protein level is at the top of the range, meaning I have significant systemic inflammation and that's linked to abdominal fat. Dangerous.

[vocalEK in reply to dbrowning02]

Overmedicated? What is your Free T3 lab result? What is the range. How far through the range is your FT3 result? If it is over the top of the range AND you have hyper symptoms such as rapid heart rate, palpitations, etc., then you might be overmedicated. If you still have hypo symptoms, then you are UNDERmedicated.

[dbrowning02 in reply to vocalEK]

I'm taking all new bloodwork next week since I screwed up my time on my last draw (took last dose 24hrs before test) then I will definitely be posting 😁.

[Duckydoodle in reply to experimental1]

Hello, new to the group, lots of questions that I will post in an introduction, but very curious where you get private labs and meds from. I’m in the states as well. Hypo/Hashi for 25+ years and getting tired of dealing with doctors that know next to nothing about thyroid disease.

[experimental1 in reply to Duckydoodle]

Understand your frustration. I live in Florida and order my labs through discountedlabs.com, a Texas based online vendor, which uses LabCorp. I believe NY, NJ, MD, RI & CA don't allow people to order their own labs. If you set up an account(no charge), it will tell you if you can't order labs from your state. I just looked up the cost of the basic panel(TSH, fT3, fT4): $83. TPO is $35 and rT3 is $57. I've been using them for a couple of years to monitor various hormones, as well lipids. Any questions, PM me.

[Duckydoodle in reply to experimental1]

Thank you!!

[experimental1 in reply to Duckydoodle]

The way it works is once you order and pay for your requested labs, with cc or debit card, you'll get a confirmation email and shortly after that, another email with your printable lab order.

[Duckydoodle in reply to experimental1]

Great and then I’m assuming results come right to you?

[experimental1 in reply to Duckydoodle]

Yes, to your email account, in a printable format.

[Duckydoodle in reply to experimental1]

Thanks!

[eghjm100 in reply to penny]

yes I to was on double the dose but they made me reduce it to 60 I put on weight slept most of the day until I found a way to optimise what I was taking to get the best result by taking them all at once at 6 am in the morning she now says that's dangerous

[vocalEK in reply to eghjm100]

For crying out loud. She doesn't want you to be able to control your weight! She doesn't want you to feel well, either. She needs you to be nice and sick.

[Hillwoman in reply to penny]

So you're another with peripheral resistance, like myself?

[penny in reply to Hillwoman]

Seems like it, Hillwoman.

[SlowDragon Administrator]

Couple of research articles to give your GP

ncbi.nlm.nih.gov/pubmed/298...

RESULTS:

Compared with patients taking only LT4, 89.47% using synthetic therapy had therapeutic TSH (P < 0.05). Similarly, 96.49% using natural therapy had therapeutic TSH (P < 0.05). Less than 5% of patients had supratherapeutic FT3. None of the patients who had abnormally low TSH or elevated FT3 or FT4 levels had hospitalizations for arrhythmias or thyrotoxicosis. On the Medical Outcomes Study Short Form-20 questionnaire, >92% answered feeling "excellent, very good, or good" when questioned about their health while undergoing thyroid replacement compared with levothyroxine alone.

CONCLUSIONS:

This is the only retrospective study reported to use long-term (mean 27 months) thyroid replacements with combination therapy and to compare between the two forms of therapy: synthetic and natural. For patients undergoing either therapy, we did not identify additional risks of atrial fibrillation, cardiovascular disease, or mortality in patients of all ages with hypothyroidism.

Low dose T3 as possible treatment for heart patients

laboratoryequipment.com/new...

[eghjm100 in reply to SlowDragon]

Fabulous SlowDragon just what I needed thank you have printed them out and will be armed

[Poniesrfun in reply to SlowDragon]

Excellent! One of the ATA’s arguments against T3 and DTE is that there is not enough research.

Duh...

Patti In AZ

[SeasideSusie Remembering]

You can send for the list of thyroid friendly endos from Dionne at ThyroidUK

[e-mail]

[eghjm100 in reply to SeasideSusie]

thank you SeasideSusie

[Evyb]

? What is BTW ? Curious too

[humanbean in reply to Evyb]

BTW is an abbreviation for "By the way".

[Evyb in reply to humanbean]

Thanks, me being "thicko" at times or just having probs with my underactive thyroid LOL.

[humanbean in reply to Evyb]

I have problems with internet acronyms and abbreviations too, and have to look them up because some of them just refuse to stick in my memory.

[Evyb in reply to humanbean]

Thanks old Bean , however where does one look them up ?

[humanbean in reply to Evyb]

For anything thyroid-related, helvella's list is excellent :

dropbox.com/s/og3lmxa1dqadb...

For common internet acronyms and abbreviations there are loads of options. This was the first extensive list I came across :

allacronyms.com/internet/ab...

[Evyb in reply to humanbean]

Thank you for your input, I never new so many abbreviations existed although my husband always complaining about them. I am now going to try and plod on with all the info on offer. Many thanks.

[humanbean in reply to Evyb]

Another of @helvella's very useful documents is this one :

dropbox.com/s/9779jq3259goa...

[Gingersnap202]

Endo's complicate simple things. They ignore the body's messages. IE: If you were getting too much T3, your heart would be racing. ... If your heart is not racing, you are not getting too much T3. ..... IF YOU FEEL GOOD you are on the right dosage!

[DippyDame]

All I can say is that this medic and the countless naysayers like her are about to find that thyroid patients are no longer prepared to believe that "doctor knows best" and that they are perfectly capable of researching the subject and consequently blowing medic's unworkable dyed-in- the-wool beliefs about thyroid treatment out of the water.

It will take time but the momentum is growing!

TUK may have "bad things" in it as far as your endo is concerned....it provides the knowledge and confidence to challenge the "bad things" medics do to their thyroid patients.

I guess they are beginning to be concerned.

It took a long time for the infected blood scandal to emerge from behind a shield of smoke and mirrors.... time will tell.

[silverfox7]

So this site is bad then? How come it's suggested by NHS Choices for issues with Thyroid malfunction!

[Letty222]

My Dr said “Thyroid UK like to think everything is down to the thyroid” and dismissed my print out sheets etc that I took from the site to back me up. He sent me away with a load of print outs and asked me if, you know what I’m going to say, I wanted anti-depressants? I’m not remotely down! Just frustrated with GPS. I save up, private test and private self medicate. Other drs at surgery now say “that’s because you’re hypothyroid” lol.

[humanbean in reply to Letty222]

I knew what was coming after reading your first sentence! I have lost count of the number of times I've been offered - I rarely accepted - and/or prescribed anti-depressants or tranquillizers or drugs for anxiety. The very first one I got was back in the 70s, which is when I think I first became hypothyroid, although it was decades before I got my first prescription for Levo. The prescription was for valium in quite a high dose. It knocked me out cold and left me really, really groggy during the short times I was awake. I gave it up after a week (thank goodness) and never went back for another prescription.

[eghjm100 in reply to humanbean]

Same for me only I got hooked on Valium for about 6 years when I was 20 but in those days 50years ago they knew no better there is no excuse today

[vocalEK in reply to humanbean]

Some 50 years ago, I had a doctor prescribe Valium when I told him that sex with my husband was painful. Had he asked a few questions, he would have learned that my husband had taken up the "Wham! Bam! Thank you Ma'am!" method of foreplay. I only took a couple of the pills, but stopped when I ran across an article describing the hellish time a woman had trying to stop taking it. Apparently withdrawal from V is a bear.

[Evyb in reply to Letty222]

Good, I see Bean is in. How are you getting on. My gp ,a new one having bought the practice has set about stopping all medication just to see how we get on without it. Imagine. I had to almost screem at him when he wanted to suspend my Levo because I was now boarderline ! Let me know please.

[eghjm100 in reply to Evyb]

Well I won this round I think!! Endo sent letter to gp asking for me to have second opinion in order to reduce my T3 however my GP knows I will fight all the way( having had this conversation with him some 3 years ago when he tried to stop me taking it telling me it was to expensive for his practice and because I went to my local CCG he was told by them that they had not put a stop on prescribing T3 that he would have to continue presribing it.) So I went to GP ready for another round of fighting and he said there was no point in sending me for another opinion as they would only say the same thing and it would cost his practice money and I wouldn't take any notice anyway wooppee round 2 to me I do think we should all fight for our rights I know it's hard when your not feeling your best. When he said to me your T3 cost him over 600 per month and there are other patients needing stuff I told him my husband has no medications so cost him nothing so that makes it ok. Knowledge is the key and I have told people about Thyroid UK and Health Unlocked because I have learned so much from this site thanks folks.

[Poniesrfun]

Endos are complaining in blogs and on MedScape that they are losing patients (thyroid and diabetes) to other specialists, especially cardiologists. Perhaps it’s because they are so blinded by numbers they can’t see the person sitting in front of them.

Patti In AZ

[humanbean in reply to Poniesrfun]

Do you have any links? I'd be interested.

[Poniesrfun in reply to humanbean]

While this is slanted toward type II diabetes, it's applicable: medscape.com/viewarticle/91... . One commenter said this "It’s obvious to any knowledgeable physician that we live in the age of outcomes, not chasing arbitrary numbers.".

And this is my [not] favorite blogger hormonesdemystified.com/cat... She's intent on trashing anything that is not by the TSH book and disparaging of anything from an "alternative" practitioner.

I'm loving the thyroidpatients.ca/campaign... site. Her research is pretty solid and they've got at least one MP working with them (Canada). Been giving me some ideas on how to address some issues.

On the bright side - postttmanagement.blogspot.com (Caveat - I'm more focused on thyroid cancer rather than the whole realm of thyroid disease although there is overlap).

Patti in AZ

[humanbean in reply to Poniesrfun]

I read some of the posts in that hormones demystified blog yesterday and it is definitely annoying. I found an answer from the blogger where he admitted to being male, by the way. In this blog :

hormonesdemystified.com/sex...

the blogger's first reply to a comment is :

Candace, I agree that the perspectives of female physicians would be germane here. Though I am not one, I would say that it is absolutely possible for a female physician to be influenced by sexism in her treatment of other females.

The blogger's whole reason for having the blog appears to be to defend standard endo thought on practically everything.

I've read some of the Canadian Thyroid Patients site in the past and I found that impressive.

I've picked up little bits and pieces on the subject of thyroid cancer but it isn't something that affects me personally.

[Hillwoman in reply to humanbean]

I've just looked at several posts on hormonesdemystified.com, and I think you're being extremely kind in describing it as annoying! I had to stop reading when I became aware my heart rate had speeded up. Whatever he happens to be talking about, the man drips with complacency and contempt for his patients. What a total arse.

[humanbean in reply to Hillwoman]

Agreed! I definitely wouldn't like him as my doctor!

[Yammie1973]

Wow, this ALL sounds so familiar. I'm doing private bloods again tomorrow morning...will post results when I get them. My GP won't accept any of the results though and refuses to send me to an Endo, let alone put me on a trial of T3. I have lived for years on 200mcg of T4 and my life is a constant nightmare. My results always in the 'normal' range!!

The UK government white paper state very clearly that they will not provide funded T3 because it's too expensive!! So when the failing thyroid function leads to heart failure and other organ failures like the brain - is it 'still too expensive then' Prevention and control of the thyroid condition now with the correct meds can prevent future conditions occurring....logical or what???

[silverfox7]

Be interested to see your 'normal' results when you get them!

[Yammie1973 in reply to silverfox7]

You and me both!!