Can anyone help please?

I have my second appointment with an endocrinologist on Monday, after 10 years of fighting to see one. He has increased my dose of levothyroxine to 150, but I’m feeling terrible! Shakes and sweats are awful. These are the last results he sent me. Could anyone think of questions I can ask him? I’m worried he will look at discharging without further investigations. Thank you

[greygoose]

Hardly surprising you feel terrible with that TSH. Did he not mention that it's rather unusual to have a TSH of 12.92 when taking 125 mcg levo? Do you know what it was when you were diagnosed?

How do you take your levo? Do you take it on an empty stomach and wait at least an hour before eating or drinking anything other than water, and at least two hours before taking other supplements or medication?

One question you ought to ask him is can you have the range for that FT4. We can have no idea how low it is without the range.

Did he tell you you have Hashi's? Or did you already know? What further investigations do you think he should do? I don't think there are any: you have Hashi's and you are hypo and you need to get the TSH down to one or under.

Have you had your vit d, vit B12, folate and ferritin tested?

[Hidden in reply to greygoose]

Thank you for all the useful information. When they increased my dose of levothyroxine, I have noticed it’s two different brands which it seems can make a difference. I have been trying out taking my meds before I go to bed for the last week as I have heard this can help. I have never been told what thyroid condition I have. When my dr finally diagnosed me 10 years ago he said I was under active and that I needed medication. It’s only recently since being on here that I have seen so much and been a little overwhelmed and feeling slightly disappointed with my GP. Really appreciate the information. Thank you 😊

[greygoose in reply to Hidden]

I'd really love to meet someone who doesn't feel disappointed and betrayed by their GP. But, the truth is they know nothing about thyroid. They don't learn enough about it in med school. In all their years in med school, they have one afternoon on the entire endocrine system. So, you can imagine the quality of their education on thyroid! They have no idea how to diagnose or treat effectively. And, let's be honest, they're just not interested. Thyroid is not 'sexy', and one doctor said - can't remember who. Which is why we have forums like this.

Taking two different brands at the same time can indeed make a huge difference - something that neither doctors nor pharmacists understand. Is one of the brands Teva? Because that upsets a lot of people. Do you know which of the brands suits you best? If so, try insisting that your doctor puts the brand on the prescription, and insist that your pharmacist respects that. They have got to learn that brands are not interchangeable.

[Batty1 in reply to greygoose]

Greygoose....I read some of your responses "I like to meet someone who isn't disappointed in their GP" and just crack up laughing....lol its so true.

[greygoose in reply to Batty1]

[NWA6]

What.the.actual? An endo has left you in this state with these results and said see you in 10wks? Just abysmal 😩 I’d phone up and say NO! Not good enough. There are no ranges with your results but i can guess that your FT4 is just bordering on our of range (low) and he didn’t even do an FT3?

Time for a second opinion and to start riot (although I bet you can barely get through the day never mind start a fight for your life)

You have Hashi’s and you are very unwell 😔

Questions

Why did you not do FT3? How do you know if I’m converting well or not?

Why do you think that my TSH result is acceptable at 12.92 when I am already on 125mcg of Levo?

Why do you think that it is acceptable to wait 10wks to follow up?

I do not have any quality of life with this current medication I insist on more thorough testing.

Then just book an appointment with your GP every week to have it documented how well you feel.

[greygoose in reply to NWA6]

To be honest, there's not much point in testing the FT3 until the TSH gets down to about 1. You can't tell how well anyone is converting until there's enough T4 in the blood to convert. And, at the moment, there isn't. So, I think it might be best not to start a fight over that point at this time. Save if for later, when feeling more up to it.

[NWA6 in reply to greygoose]

That’s true up till a point. The poster, Solace143 has said that it’s taken her 10yrs to fight for an endo appointment. Reading between the lines this sounds like she’s never felt well on any amount of Levo so I’d personally like a full thyroid test (and they should standard, maybe that’ll only get that way if we keep shouting for them). In saying that 125mcg isn’t that much after 10yrs of Hashi’s so maybe Levo has just never been high enough?

[Hidden in reply to NWA6]

Thank you so much for your advice Paula. I have a list of things I will be asking on Monday. You have been really helpful 😊

[NWA6 in reply to Hidden]

😩 please brace yourself for the worst and hope for the best. My eyes have been fully opened since joining Theo’s forum. I honestly thought for 10yrs that I was just the most awkward, ungrateful whinge bag who was just never happy no matter how much Levo they gave me. They all made me feel like I was a hypochondriac who should be grateful that there was a least a treatment for this condition - which they also made me feel like it was ‘barely’ a condition. They dismissed hypothyroidism as if it can’t possibly affect a person how much it was affecting me.

Now on this forum I realise I’m not alone, it doesn’t always help get the GP’s/Endos to listen but it did help me fight for my right to live a full life and not a half life.

[Batty1 in reply to NWA6]

Paula6.....you must be in the US the doctors here love to tell you everything's in your head or your a worry wart and my favorite your paranoid about weight gain "really captain obvious" ....my Doctor of 14 yrs would tell me these things all the time as I suffered with severe panic attacks and difficulty swallowing and weight increasing for over 5 yrs inspite running half marathons and teaching fitness classes and dieting constantly.

Sadly, 3 yrs ago I was diagnoised with thyroid cancer and I no longer trust doctors to have my best interest as my doctor of 14 yrs let me down bad and my health has taking a nose dive...I have never been this sick in my life even with autoimmune disease.

[NWA6 in reply to Batty1]

Hey Batty1. I’m in the Uk but it’s seems when it comes to thyroid issues they are ignorant the world over 😩

[greygoose in reply to NWA6]

I understand what you're saying, but when we're feeling so dreadful, we need to pick our battles carefully. And, at this point in her journey, that one is not the most important. And here, I'm thinking about the well-being of this particular poster, not the greater good of humanity.

It should be standard proceedure, I agree, but there are plenty of others that can stand up for that principle. This persons needs to find out why she isn't absorbing her levo very well, and that's the most important point for her. When energy is limited, we need to take one step at a time, not go in both barrels blazing, because we won't get very far. We need to be realistic. Once she gets her TSH down to about 1, then she can start nagging about testing FT4, because then it will be necessary. At this point, it isn't.

[NWA6 in reply to greygoose]

Well said 👏 but I don’t believe she will get her TSH anywhere near 1. We’re both already thinking that she’s not absorbing Levo well and so I don’t believe that she’ll ever get her TSH down to anywhere near 1, if she does and her FT4 is higher, I bet her FT3 will barely rise. Better to start the fight for full thyriod testing now to build up the picture that when FT4 was low, FT3 was low, when FT4 was raised, FT3 barely rose. This has already been a long journey and will no doubt be a long enough journey to try and get optimal treatment so start as you mean to go on. Full Thyriod history will be needed and more helpful if this poster has to go private.

[greygoose in reply to NWA6]

If she has an absorption problem then the first thing to do is find what it is. FT3 is irrelevant until that is sorted. And going on about it is just muddying the waters. One step at a time, is the way to advance, not dashing off in all directions. She has to get her TSH down to one and there's no reason why she shouldn't. I don't understand what your point is there. But, no matter. Let's not complicate things any further, it's complicated enough as it is.

[NWA6 in reply to greygoose]

greygoose you are a fountain of knowledge and no one can deny that but other opinions are allowed, if yours were the only one ‘not muddying the waters’ then I don’t know why anyone else would bother to reply and try to support. I’m sure Solace143 is old enough to take all experience that we have to offer and use it to suit her own needs.

[greygoose in reply to NWA6]

You've totally missed my point. I've always found that with people who are new to all this - plus suffering with brain fog - we need to go slowly with the information we give. Of course other opinions are allowed, I never said they weren't. I just find that taking things one step at a time is far more productive than bombarding people with information that is not relevant to them at that point. It confuses and discourages.

Of course you are right about the necessity of testing FT3. But, when a TSH is that high, the FT3 is either going to be very low, or it is going to be reasonable because the high TSH is pushing conversion. Therefore there it's not really helpful to test it at that point, it's better to wait until the TSH comes down to around one - which it will if enough levo is given - at which point, conversion rates will be clearly visible. That's what I mean by one step at a time. I'm sorry if you take that as a personal attack, but I'm only thinking about what is best for the progress of the OP. I'm sorry you can't see that.

[Batty1 in reply to greygoose]

Greygoose, do you think that her being given according to her 2 different manufacturers t4 meds could be behind her high TSH or maybe she's taking them with food or who knows. Curious about different manufacturers as I was made to look at my t4 pills before I left pharmacy to make sure I got same script.

[greygoose in reply to Batty1]

I'm not sure that being given two different brands would cause her TSH to be high, but could be causing some of her symptoms. And I did say above that that could be a problem for her.

But, judging by her reply above, I don't think she's taking her levo with food.

[SlowDragon Administrator]

Bloods should be retested 6-8 weeks after each dose increase

Do you always get same brand of Levothyroxine at each prescription?

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

In your first post you were advised to get vitamin D, folate, ferritin and B12 tested

Have these been tested?

A lot of symptoms can be due to low vitamin levels

Endocrinologist should not sign you off until, you are well and TSH under 2. Many people need TSH well under one. Most important results are FT3 and FT4

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Marz]

healthunlocked.com/thyroidu...

Lots of good advice after your post of 4 months ago - and it would seem you have not been able to follow it with all the correct testing. What are you hoping to achieve with your appointment ? Is he a thyroid or a diabetes specialist ? Have you researched him/her ?

Following the advice given to your earlier post would be a huge step on your journey to wellness. I also suggested your Fibro could be connected to a LOW T3 and still it has not been tested - so how would you or your doctors know if your T4 is converting. Please read through all the good suggestions you have been given on this thread and in your previous one ... everyone standing by ready to support

[Buddyluna]

Stick with the dose. Your body has to get used to it and you will not suffer the tiredness. I am on same dose and feel a million dollars. Good luck. You can do it.

[Needhelp1]

I am not a doctor but sounds like to much medication try a new doctor maybe. I had to go to UCLA after 5 failed doctors remember you are hiring them well hope this helps have a blessed day