Is it all in my head? Doc update

[Boopsicorn]

Hello,

I was posting previously on the possible side effects I’ve felt since increasing my levothyroxine dose from 88 to 112mcg and my endo saying that I was still a bit hypo and that I should probably increase again a bit....

I just talked to him to ask him about getting a full panel of my vitamin levels as well as estrogen and progesterone levels... and he said it was absolutely unnecessary, that he doubts I have any vitamin deficiencies as la by as I’m eating a balanced diet 🙄

Also he said that as long as I still have my periods and I’m not having hot flashes then my estrogen level is fine.

My lower sudden (started right after increasing my fuse) lower back pain and crazy neck cramps/pain, as well as the worse hormonal migraine I’ve had in years (I’m on treatment for chronic migraine), are not related to the meds or my thyroid levels... this is all in my head according to him 🙄😤

The only thing he did for me tonight is switch me to the brand name Cynthroid and increase me to 125mcg.

He also mentioned that unless my brain feels foggy and I have difficulty concentrating, a T3 supplement (Cytomel) was not necessary for me.

I was calling for help and advice and all I got basically is called condescension and dismissal of my concerns.... Maybe I’ll take these concerns to my GP instead.

This is sooo frustrating ☹️

You guys have more experience than me here in this forum, is this normal?

Thanks for reading and for your help 🤗

[tinkerbell22]

Hi Boopsicorn, I am so sorry you were treated so badly!! It is unbelievable how our doctors make us feel

I tried all the UK versions of levothyroxine and they made me feel Awful! It was on this forum that I learnt that UK versions aren't made well and that it's better if you're sensitive to have a branded version, non-uk. I switched to Synthroid (US brand name) and my side effects went away! No more migraines (which only started when I started UK levothyroxine) and other awful symptoms. Synthroid makes me more tired than UK levothyroxine. But uk levothyroxine sent my anxiety levels through the roof so I was constantly agitated and angry. UK levo also caused awful hormonal problems, scary pmt and awful pain around that time of the month, so it could be the problems are all about the brand.

It may be your doctor switched you to Synthroid? In which case, try what he's prescribed and see if the side effects disappear. That'd be awesome!

Definitely worth getting your vitamins tested too! But your gp could do this for free.

[Boopsicorn in reply to tinkerbell22]

Hi!

I woke up this morning with all these answers and it seriously brought tears to my eyes! I wish all those doctors who feel like they can dismiss our concerns and symptoms would realize all we need is to be heard.

Thank you so much for your answer and your words of comfort! I know I’m not imagining all this but it’s nice to hear it from all of you 😊

I’m French but I live in the US and I had heard about the issues some people had with the new version of levothyrox in France through my mom.

Turns out I’m on that new version too here.

So I asked to switch to Synthroid. I’ll see how it goes. I’m hoping the side effects will be gone and can concentrate on go do me the right dose for me 😊

I’m also going to go to my GP for that vitamin panel because I want to know!

Thank you thank you!!!!

[tinkerbell22 in reply to Boopsicorn]

I agree, Boopsicorn, first the mission is to find a version of levothyroxine that doesn't cause debilitating side effects! Next step is raise the dose up gradually. As long as side effects don't appear later, then continue to rise it up every 6 weeks after testing.

But the T3 issue may need to be addressed quickly too. It took me a few months of testing while taking levothyroxine to see that my T3 was a little too low, and going very gradually down, even though my TSH lowered and T4 raised (as they should).

Vitamin deficiencies (as one example) can stop you converting T4 to T3. For me I can't tolerate any supplements due to my sensitivity! So I needed the T3 to get my brain working so I can figure out my sensitivity / conversion issues etc.

So T3 might be a stepping stone for you to get the brain clarity to figure out why you're not converting T4 to T3. For me t3 gave me the clarity to see that I needed to do a hair analysis test, and from that I found out I have heavy metal arsenic poisoning! And arsenic stops metabolism and thyroid function!

So... If you find your t3 is too low and you're not converting T4 to T3 then it may be wise to add some T3 at least for a while to see if light dawns lol

Warning: T3 is a rollercoaster ride, trying to get it right too, but if you need more instant relief (like I did, I was desperate...), then it might be worth doing a private test like through Blue Horizon. It was the only way I could manage it, not through a doctor.

[Boopsicorn in reply to tinkerbell22]

Hi Tinkerbell22,

Thank you for your help!

I’ve just switched this morning to the brand name of Levi which is Synthroid here in the US. We’ll see if that takes care of the side effects I e been experiencing...

I went from 112 to 125mcg though and I had only been on 112mcg for a little over 2 weeks so now I’m worried it may have been too fast....

I don’t have time to find and see a new endo before I leave to see my family back in France in a few weeks so I’m going to try and get that FT3 test ordered from my current one.

He may fight me on this or do it to shut me up...

I could also order it from a private lab...

Anyways, do I need to be off the Synthroid for 24 hours before I do that test too?

I take my meds around 5am so is it ok if I take my dose after I get blood drawn first thing one morning?

I’m going to try to do this and maybe find a new endo this Summer who can read the results... or should I hold off all together on that test until I find a new endo?

I’m so overwhelmed right now it’s awful 😞 finding this forum has giving a new boost of courage but at the same time I feel I have so little energy to battle both the illness and the doc ☹️

Thanks again for your help, I can’t tell you how precious it is to me right now!

[tinkerbell22 in reply to Boopsicorn]

I totally get it, Boopsicorn, it is so overwhelming and such a battle. We have to become our own doctor and tell our so-called doctor what to do... And they don't often like that! The other option is to roll over and die basically

I so far have only done T3 testing at the same time as testing my T4 and TSH, so I get full perspective. I'm concerned a T3 test on its own won't be as valuable as if it were seen alongside T4 and TSH. It would still be useful to see your T3 result (on its own) if that's the best approach for you, for whatever reason, or if it's the only thing you can manage, but better to get as full a picture as possible.

So then, for a test of T3, T4 and TSH I treat it like a test for T4, I don't take any T4 (or vitamins or supplements) for 24 hours before the test. Personally I fast for 12 hours too, but not everyone does. I started that way (when testing vitamins at the same time as my thryoid test) so I've continued that way so my tests are under similar conditions each time. I do the test as early in the morning as possible then have my meds as soon after the blood test as possible.

I understand your desire to push the current doctor then. Sometimes it does work to. I have had success in some cases (begged and cried...). But it's a lot to put yourself through when you're already exhausted. I'm not saying don't, just I find it a million times easier to just do the test privately and work out the results myself and on this group. Personally (and especially if you're stuck for time), I'd do the test through a private lab asap, just so you can see what your results are. It's your body and you've got complete right to know what is going on in it!! And why you feel so terrible! That's my view once you have the test results you can post them on this forum and have them explained to you, and then you can have a think about what to do about them. One step at a time.

I really hope the meds-change removes your side effects! That'd be amazing for me it took 1-3 days to see a difference! Yes, that quick!

[Boopsicorn in reply to tinkerbell22]

Thank you for taking the time to help me out with this!

I think I may go with the private testing... I’ll need to look into it.

😊

[tinkerbell22 in reply to Boopsicorn]

Also, with the private testing, I do the home fingerprick self-testing kit and have my other half help me by sorting the blood bit out as I'm very squeamish! It can be a bit fiddly too, I find, needing two or sometimes three fingerpricks, and for me they hurt quite a bit! I'm maybe just sensitive. But I would have to build up more courage before attempting it on my own people do manage though! And I could at a push! I'm not trying to put you off, honest! Just being realistic.

Some private labs do home visits if you need help or have hospitals you can go to

[Boopsicorn in reply to tinkerbell22]

Btw so if I’m doing a private testing then I need to ask for FT4 FT3 as well as T4, T3 and TSH?

[tinkerbell22 in reply to Boopsicorn]

Yes, that's what I do if you can afford the thyroid antibodies tests too then they're very interesting to see if you haven't had these already. Glad to help Boopsicorn xx

[tinkerbell22 in reply to tinkerbell22]

Oh wait, free t3 is t3. There's free t4 and total t4 too.

[silverfox7]

Sorry you have been made to feel like this. Your GP may not be able to get an FT3 result. Many put it down on the form but the lab says no!

Two private firms, Medichecks and Blue Horizon, are recommended and both have special offers so worth keeping an eye on both of those and checking out which tests they do. Many of us unfortunately have to pay to get anywhere.

[Starfish123 in reply to silverfox7]

I understand that the labs say no because they don’t think it’s relevant for hypothyroidism and it’s only useful for hyperthyroidism. Apparently the way to get it tested is for the dr to only request FT3 nothing else on the form.

[Boopsicorn in reply to silverfox7]

I’m in the US so things are a bit different here. The labs will do what the doctors order them to do.

My endo just doesn’t seem to think it’s necessary to get an FT3 level because it’s not really possible to quantify the conversion from FT4 to FT3.... I didn’t understand exactly all he said as he was not really bothering to explain in a way I could understand and his dismissive tone kind got in the way for me 🙄

I’ll just take things one at a time and first see how I feel on the new meds 😊

Thanks for your help!

[Hidden in reply to silverfox7]

Hi, silverfox. We are lucky in the US in that we can get any test approved by medicare or our insurance that our doctors order. But the rub is often getting the doctor to order it esp if their minds are closed re its necessity. So they dismiss and blow us off. And I believe this is especially common re thyroid problems. The other negative here is we can get them done thru private labs but that can be very expensive. This is because labs prefer to have doctor-ordered tests because then they make MUCH more money from having costs covered by insurance than they make with private pay. MONEY!!!! Thyroid tests are inexpensive and not big moneymakers. When doctors can order various tests that require machines and other colleagues to read results money is generated for more people. Simple blood draws don't bring in this kind of income so they are often ignored. IMO, it wouldn't hurt to order a test the patient asks for. I believe some docs are on a power trip called "I'm the doctor, I know best." It's the American way!!! irina

[Boopsicorn in reply to Hidden]

Yep, very true. My endo is a big wig at the thyroid department of a big Boston hospital and i was shocked at his dismissive tone... he wouldn’t even entertain the idea of just faking hearing me!

If I really have to find another endo I’ll try and find a woman. In the meantime I’ll go see my GP who’s been nothing but attentive to me over the years. Maybe that’s because she’s a woman?.... 🤔😉

[Hidden in reply to Boopsicorn]

Hi Boopsicorn. Just a caveat. The PCP (female) who I inherited several years ago here in Atlanta when my (male) doctor retired is the one I just got rid of after stringing me along for almost 2 year s with disinterested, dismissive, ineffective thyroid care. I was an RN for 40 years but being retired I had no idea how bad thyroid care could be or what constituted good care until I got to this forum. Once I found out how many of my problems and symptoms could have been prevented if she had known how to do her job and actually been interested enough to do it I let her go like a hot potato. If it were me I wouldn't put gender parameters on finding a good doc-I asked the Universe to help me find the care I needed and was willing to take anyone who could help me. Another thing I like about my various doctors is they are a mix of all races, gender, cultures, sexual orientation- you name it. The advantage for me is I get the best ideas from around the world and am not limited by americans who only understand the US healthcare system and only believe in what it offers. I hope you soon find good care and can put an end to so much unecessary pain. Take care. irina

[Hidden in reply to Hidden]

Me again. LOL. One thing I recommend is looking up reviews about potential doctors. They are not foolproof but often we can read between the lines. I assume when I read others' comments that the doctor has certain basic knowledge. The most important characteristic I look for is good marks (5 stars) about how they listen to their patients, do they believe their patient should be included in their own treatment plans, etc. If they don't score well in these areas I move on.

[Boopsicorn in reply to Hidden]

Thanks for your answer! Yes of course, one cannot over simplifly and generalize with gender but it was my experience that men doctors were more easily ready to dismiss my concerns/symptoms ....

of course I’ve had the uninterested female doctor too, like my eye doctor who’s a specialist in Graves‘ disease, and who’s barely ever given me the time of day when it came to me describing my distress over my symptoms that have been going on for a year and a half now and are affecting my life I a daily basis (double vision, bulgy eyes, puffiness...).

This is all so frustrating ☹️

[Heloise in reply to Boopsicorn]

Hi Boopsi, I'm also in the U.S. You are in Boston and cannot get a full panel of thyroid tests? I was on Synthroid and don't recommend it. Have you thought of trying a natural desiccated hormone? T3 is the most important element of thyroid hormone. Many of us take ONLY T3 although NDT may be good enough. Remember EVERY cell needs T3, some more than others. Your symptoms are so similar to mine on T4 only. You could call your pharmacy and find a doctor who prescribes Naturethroid or Armour if you decide you need T3.

This website can answer a lot of your questions. stopthethyroidmadness.com/a...

[Boopsicorn in reply to Heloise]

Hi Heloise!

Yes I’m in Boston and I only got my FT4 and TSH tested after my thyroidectomy (feb 26th) on April 30th (I was on Levothyroxine 88mcg then) and again on May 29th, after I upped the dose to 112mcg.

My endo did not test for anything else at these dates.

In April:

FT4 1.3 (range 0.9-1.8)

TSH 14.3 (range 0.40-5.00)

In May:

FT4 1.5 same range

TSH 4.84 (0.55-4.78)

I only had a T3 test in November and December of 2017, prior to my thyroidectomy and when I was still on the Methimazole.

Haven’t had one since.

I also had a TSI test in December.

When I talked to me endo on Monday he basically told me I didn’t need a FT3 test and blew me off by saying it’s complicated and can’t really be done or wouldn’t be necessary... whatever he was trying to say was no.

So now I’m on the Synthroid (today is my first day) 125mcg and I’m hoping the side effects from the old Levo will be gone but I have no idea what my FT3 is and is I have any vitamin deficiencies because he said it wasn’t necessary for me to know.

My main issue is that I’m leaving to see my family in France soon and won’t be back until July 24th so I don’t really have time to find a new endo now.... hence my question, should I pester him to get the test done so I have it and then I find a new endo this Summer...

Sorry for the long message, you guys are my lifeline right now!!!!!!💗

[Heloise in reply to Boopsicorn]

Greygoose lives in France, maybe you should start over in France now that you've had a thyroidectomy.

It is ABSOLUTELY necessary to know your FT3. It is the ACTIVE portion of the hormone although that T3 has to enter cells in order to remove symptoms and just know your blood level does not necessary reveal that. The standard for that is usually taking your temperature every morning before getting out of bed. Your metabolism controls the rate at which you burn calories, hence why so many low thyroid people can be overweight and, also, why it is very difficult to lose weight. Look up Broda Barnes if you want to learn about that.

You're doctor is being totally negligent and yes, it is complicated. I also post a longer video by John Bergman, he has many of them on you tube. If you want to know how the hormone system works, he's the man.

A little clue is that your adrenal gland has a huge impact on the thyroid. Your adrenal gland uses cholesterol to make the three steroids, progesterone and cortisol (stress hormone) and some sort of stress is always at the bottom of these problems. My son lived in Boston for ten years and also became hyperthyroid. Is it the water?

[Boopsicorn in reply to Heloise]

I don’t think I’d be able to have these tests done in France, I have no insurance there. I want to try and use my insurance as much as I can here in the US so I don’t have too much out of pocket to pay...

Our medical bills are not little in our family as my son is also sick with some neurological disorders... so yep, stress level has been up there for years anyway... just thought it’d be my new normal and that’s I’d be able to superwoman my way through it all 😉

Did your son like Boston? It is a nice town but I preferred NYC, even though it’s such a bustling city!

I don’t know if it’s the water... not sure what’s what anymore 😝

[Heloise in reply to Boopsicorn]

I'm sending you a private message. Look at the "chat" in the header.

[Hidden]

Before I had my thyroid removed in Oct 2015 I knew nothing about the thyroid at all. It was working fine but had a lump growing down and so moving my trachea which affected my breathing. Afterward I was put on Levo for 8 months which made me ill. I then joined this site and started self medicating with NDT. After two years I now feel well and never visit the doctor or Endo.

I save up and have my bloods tested by Blue Horizon (Thyroid 11) I then post the results on here with the ranges. Blood to be taken first thing fasting and leave off the Levo for 24 hours prior.

The brilliant people on this site have made me well again I have taken the advice and used

it to my advantage. You can do the same you do not have to suffer fool's advice i.e. ENDO.

[Boopsicorn in reply to Hidden]

Thank you so much for sharing a bit of your story with me and for the hope you gave me!

It truly means the world to me right now. I’m a fighter and I know I can do this and figure it all out but the exchange with my Endo last night really threw me off...

There’s nothing worse than not being heard! Especially by someone who’s supposed to be an expert and who’s supposed to help you figuring it all out!!!

So thank you for you help 👍😊

[Hidden in reply to Hidden]

Hi Bunnyjean. This is Plan B for me if this new endo doesn't work out. irina

[silverfox7]

It's about time then that they took on board that it relevant for both!

[greygoose]

Is it 'normal' to have such an ignorant endo? Pretty much, yes. The majority of them are like that.

Things they don't understand :

* The aim of thyroid hormone replacement is to get your TSH down to 1 or under, and your Frees high enough to get rid of your symptoms and make you well.

* Anything and everything can be - and probably is - a symptom of low thyroid, either directly or indirectly.

* Hypos usually have low stomach acid, so it doesn't matter how good their diet, they are going to be deficient in certain nutrients - you aren't what you eat, you are what you absorb.

* It is possible - usual, even - for hypos to be bad converters and to need T3 to make up the difference if they're going to be well. Continuing to increase the levo ad infinitum is not the answer.

* TSH fluctuates throughout the day, so that it does matter what time you have your test done.

* If you take your levo within 24 hours of the blood draw - 12 hours for T3 - all you are going to test is the dose you just took, not the usual circulating serum level of hormone.

* And, of course, the main one : TSH is not the best test to indicate thyroid status. It should only be used in conjunction with the Frees for diagnosis, and hardly at all for dosing. The most important number is the FT3, because T3 is the active hormone needed by every cell in the body, and, although it fluctuates slightly during the day, it doesn't fluctuate nearly as much as the TSH, and is therefore a better indicator of thyroid status.

There are probably a hell of a lot of other things they don't know, but these are the main ones that come to mind. And, unfortunately, it is 'normal' that they don't know any of this!

[greygoose in reply to greygoose]

Just thought of another really important one :

* They do not understand the importance of antibodies. They don't understand that if you have Hashi's, there will be times when your Frees suddenly shoot up, and your TSH drops, and it doesn't mean that you have been 'abusing your meds', it means that you have just had a Hashi's flare and that your levels will soon go down to hypo again, so reducing the prescription is counter-productive, because it will just have to go up again when the excess hormone is used up or excreted, and all the drama was for nothing!

[Boopsicorn in reply to greygoose]

Yes my antibodies do fluctuate with my Graves’ disease too.

So you’re saying that you need to not take your dose of medication 24 hour before a blood test?

Last levels I got were because my done a few hours after I took my pill....

[greygoose in reply to Boopsicorn]

That's right. 24 hours for levo. 12 hours for T3 and NDT.

[Boopsicorn in reply to greygoose]

Sorry to bother you with this again but I’m trying to understand this... and I’m not sure I am.

How is it that my endo is telling me I don’t need a FT3 test if it’s so important to know if I’m my FT4 are converting properly and should I insist to ge that test done?

Also my TSH is at 4.85 (range 0.55-4.78) and he’s telling me that one hospital would consider that normal but his hospital/he would say I’m still borderline low... which is why I’m going up to 125mcg of now Synthroid.

Then he told me that due to my age, a “normal” level may be closer to 2...???

Which is it? I’m completely confused!

It may just be that I need to find out what my “normal” level is on my own but if he’s not willing to test for FT3 and potential vitamin deficiencies and doesn’t believe my symptoms are real then I do I get to know what my normal is?

Should I just change endo or force him to listen to me?

Thank you!!!!!!

[greygoose in reply to Boopsicorn]

Oh, don't waste your breath! He doesn't know anything about thyroid! And this business of your TSH being higher because you're older, is something he's vaguely heard and totally misunderstood. Here's what it's about :

Research has found that some older EUTHYROID people have a higher TSH - around 2 or something - and are perfectly well. But, they are euthyroid. You are hypo. The same rules do not apply. You will always need your TSH lower than a euthyroid person. So, either he's misunderstood, or he's just fobbing you off - let's give him the benefit of the doubt…

Very few endos understand the importance of T3, because most of them are diabetes specialists and really know very little about thyroid. He was probably taught in med school that all he needs to know is the TSH, and he hasn't had the interest in the subject to look any further into it. We here, we know the importance of the FT3 and T3. You can try insisting, if you like, and he might just do it to shut you up, but he won't understand the results, and will tell you it's fine, whatever it is. But, we will know!

A TSH of over 4 is not 'normal' for anyone. You are hypo when your TSH hits 3. Whatever your age, you are bound to need your TSH at 1 or under.

Endos rarely let you find out what your normal anything is. They tend to be total dictators, playing by out-dated rules. And this one is obviously beyond help. If you can, find a new one.

[tinkerbell22 in reply to greygoose]

I agree it's better not to waste your breath. I spent last year going from one gp to another trying to get them to see that my TSH level (of about the same as yours initially) was too high! Actually I've spent the last 25 years trying to get someone to believe that, but last year I decided enough was enough! I eventually found a gp who'd treat my symptoms even though I was slightly higher than borderline TSH. But then she wouldn't accept my high antibodies test I'd had done through Blue Horizon, so I found another gp who would. But then later hit another wall with him, so I decided to self medicate... That's not ideal but I feel I had no choice.

[Heloise in reply to Boopsicorn]

Listen to greygoose. We've been on this site for years and have heard your story over and over again. It's disgusting that the UK system is so poor but that's more understandable than having such a poor system in the U S. I haven't even tried going back to an endocrinologist. You will not change his/her protocol but you could try a functional doctor who really understands thyroid conditions, like this one: youtube.com/watch?v=Z5SaM0R...(Not working as expected?)

[Boopsicorn in reply to Heloise]

Very helpful! I guess I have to find a doc like that now... makes me tired just to think about it 😝

[Heloise in reply to Boopsicorn]

I know and I'm sorry. It's a sticky thorn and I'm afraid this thing about the medical profession is becoming more corrupt by the minute.

You haven't been hypo for very long but it's almost certain you are going to have deficiencies. You could begin taking digestive enzymes and/or Betaine HCL with meals to insure the breakdown of nutrients. Selenium and zinc are two important ones as well as B vitamins.

Gluten can do a number on digestion and can even start an attack on the thyroid because the proteins look very similar to each other and may cause the immune system to seek and destroy. Don't lose hope, there is help out there and you can feel good again.

[tinkerbell22 in reply to Boopsicorn]

You can also just read lots of what these doctors say online and in their books. I can't afford to sign up to these doctors' programmes unfortunately, as exciting as they seem! So I read read read, and find which bits are relevant to me, pull at strands and edge my way forward. This way you can pace yourself so it isn't quite as overwhelming too.