Hello, I've received this letter from the endocrinologist. I made a complaint to my GP last week, about the fact that the endocrinologist thinks I don't take the tablets correctly, but won't consider any other reason for my results. She doesn't know I have raised this with the GP, obviously.
Can anyone help me with where to start responding to this letter?
Thanks so much. I'm on the verge of tears, it's been 11 years with no competent medical advice.
Previous post here
healthunlocked.com/thyroidu...
Are you still taking 200mcg levothyroxine and 30mcg T3
Obviously TSH will be suppressed by T3 dose
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
On T3 day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
So taking 10mcg waking, mid afternoon and 9-10pm - assuming thyroid test is 9am following day
Is this how you do your tests?
Which brand of levothyroxine are you currently taking
Do you always get same brand
Have you been improving low vitamin levels and have you tried dairy free diet (and lactose free levothyroxine)
Thank you. Yes, I always do what is advised here in regard to tests. I've recently been swapped to liquid levo but think I've already had two different types (only had two prescriptions). One was sugar free but this is not. Teva brand currently. I'm not sure I like it, it's so sugary and seems to give me abdominal pain.
The levo tablet brand was northstar. I usually had that brand. My T3 tablets are MercuryPharma.
So Teva liquid levothyroxine is lactose free
Do you split taking liquid levothyroxine, half waking and half late afternoon or bedtime
You might need lactose free T3 (Teva brand)
Do you normally split your T3, or only on day before test
Are you on, or ever tried lactose or dairy free diet
Hello, yes, I've been vegan before, but discovered more allergies. I very rarely have dairy now, as my children have CMPA so we don't have much in the house. None of us has dairy in drinks, we use alternatives. I can cut out butter, as that's the only thing left, really, and I don't often have that. I've been gluten free since 2007.
I do split my dose of T3 but not T4, as I understand it has a long half life, which T3 doesn't.
I've had success with Thyrogold before and am thinking I'll try it again, and stick to it this time. I had to stop before because there was a global shortage.
I've also seen an improvement in other health conditions by going back on progesterone.
I've recently been found to have a fatty liver, which I see can be linked to hypothyroidism. So I'm being extra careful with diet, although haven't had a particularly poor diet ever, really.
Are you taking any supplements that contain biotin
If yes, do you stop these a week before test?
Biotin can falsely affect test results
I started taking biotin after my test results, so I will remember that for the next test thank you. What does it do to results?
re. Boitin interference :
academic.oup.com/edrv/artic...
Interferences With Thyroid Function Immunoassays: Clinical Implications and Detection Algorithm
Julien Favresse, Maria-Cristina Burlacu, Dominique Maiter, Damien Gruson
Endocrine Reviews, Volume 39, Issue 5, October 2018,
" ..... It is essential to note that the impact of biotin is directly related to the type of platform used (54, 58, 59). In Roche platforms, TSH, FT4, and FT3 may be affected by excess biotin. In Ortho Clinical Diagnostics platforms (Raritan, NJ), only TSH can be decreased because FT4 and FT3 do not use the biotin-streptavidin interaction. The opposite is true on Beckman Coulter Diagnostics platforms (Brea, CA), in which FT4 and FT3 can be elevated, whereas TSH is not affected (53, 54, 60). Interestingly, the Centaur FT4 platform (Siemens Healthcare, Erlangen, Germany) uses a preformed streptavidin-biotin complex not sensitive to the presence of biotin (53). Abbott and DiaSorin (Saluggia, Italy) immunoassays are also not affected by biotin, because the biotin-streptavidin immobilization system is not used for TSH, FT4, and FT3 measurements. Therefore, one of these last three platforms may represent the method of choice for indirectly identifying biotin interference.
The biochemical results obtained in patients taking biotin may erroneously affect the evaluation of thyroid status in different ways on different platforms. Hence, endogenous or exogenous hyperthyroidism may be suspected when hormones are measured on the Roche and Siemens platforms, subclinical hyperthyroidism or any other cause of isolated TSH diminution may be mistakenly diagnosed on the Ortho platform, and resistance to TH or drug interference (e.g., amiodarone, heparin) may be evoked on the Beckman Coulter platform (8–22). It is crucial to bear in mind that the clinical presentation of hyperthyroidism may overlap with several features of neurometabolic disorders, conditions that are treated with high biotin doses (61). Furthermore, the setting can be even worse, because anti-TSH receptor antibodies may wrongly show up as positive due to the biotin presence (49, 54, 56, 58, 62–64) ...."
Wow, this endo is utterly clueless. Below normal T3 and T4 . But suppressed TSH means there's enough hormone at tissue level. I don't know enough to be able to help, so I hope some knowledgeable people on here can offer you advise.
I would follow her advice but in your own way so you can say that you have complied with the "Expert" advice.I'll pm you to what I did to play the system and 'follow 'the advice of the "experts"
Hi
Just to let you know you've left your full name on the photo, you might want to remove it for privacy reasons. I had the same issues last year when my TSH remainded stubbornly high even after an increase in Levo.
During my GP consult I was asked if I was actually taking the tablets. I did have to bite my tongue. I was able to tel, them that yes on an empty stomach with water, a hour before food or caffeinated beverages. 4 hours away from vitamins and other medication. That soon shut him up. They treat us like idiots, don't get me wrong, some patients are stupid, but the vast majority are not.
Thank you, I actually said in my email to the GP last week, "I'm an educated, professional woman. I know how to take a tablet." 🙄
So ,assuming you do already take your 200mcg Levo +30mcg T3 in the morning on an empty stomach and then leave it a while before eating anything ?
All the endo said they require is a Blood test taken later in the same day., rather than the 'test before meds approach'..... we would expect this to give a slightly higher ft4 , and more to the point a higher fT3 than the results you have 24 from last dose T3/Levo.
So , In order to move on as swiftly as possible , i'd reply confirming you already take then as directed and always have, and that you will NOW (not in a month !) arrange a blood test for later in the day 'post meds' so that they can see the difference between 24 hrs post meds and eg. 7-8 hrs post meds.. which should avoid the worst of the post dose peaks for T4 and T3.
Peak T4/T3 from absorption usually occurs in the period between approx 2-6 hrs post dose. So , If you take Levo /T3 first thing and then do the blood test at 4/5 pm .. TSH will have probably started to rise again from it's absolute lowest around 1-2 pm.
So that's what i'd do ,and i'd be honest with the Endo about time of dose/ test ...( even though a full dose T3 is not what would normally be advised on here before testing) ...because if they do then go on to do an absorption test ,there won't be any reason for them to say "see ,when we test it , it's not the same result as when you did it"
**Not sure if you're usually taking the full 30mcg T3 in one go, or if you split it into 2/3 doses am /pm ..so test however you normally take it, i don't mean 'take 30mcg T3 in one go' if that not what you normally do **
They do have to rule out 'patient compliance' before they can move on to looking at poor absorption.. it's just the first stage in a process of elimination. Try not to take it personally, i realise it's bloody insulting but they do get patients who deliberately fiddle their result , and lie about what they take ... and while YOU know you're not doing this .. they don't know who is who ... and unfortunately, being educated and knowledgeable about thyroid issues and blood testing will actually make them more wary that you may be 'adjusting' your timings to get such low T4 /T3 results on such a high dose ...they seem to think some of us are deliberately trying to get a larger and larger prescriptions to overmedicate ourselves for fun ... God know why they think this, but i'm sure some of them do .. it may well be a hang over from the (still common) belief that taking T3 gives you a 'high' like taking Cocaine or something just as ridiculous .
You want them to investigate your poor absorption as a matter of some urgency, there seems no reason to wait another month if you already take your meds away from food.
Thank you. I'd totally agree with you that its ok to be doing this process, but for the fact that I've been ill for 11 years and having the same conversations for the past, well, 6 years, at least. I'm so sick of it all. Why is the first step of their "moron elimination process" happening only now? I've had the same results over and again for years. I feel NOTHING, regardless of what I take, how much, or when I take it. Certainly not a high. I wish it did something! 😂 I take my medication when I wake up and don't eat or drink anything until I get back from taking our twins to nursery or son to school and after I've set up my own work for the day. I split the T3 but not T4 dose each day. They've gradually increased how far in advance of food I am advised to take the tablets, from 30 minutes, to an hour, now two hours, presumably to show I'm wrong in not leaving a big enough gap. It is usually two hours by the time I eat anyway.
Ah but 'this' is stage TWO of the 'moron elimination process' . Stage ONE is 'ignore you for 6 years in the hope you'd have accepted some antidepressants instead or moved house ."
Stage 1.2 was "rearranging the deckchairs on the Titanic" by pointlessly fiddling about with your dose timings for months ., in the hope that you'd now accept same antidepressants or move house.
not that i've become cynical or anything ..... so sorry you're having such a battle with this, and i'm not really making light of it , honest ... i can't imagine how hard that is with young twins too . i really struggled with just one at a time.
Excellent response!!!
If you are constantly being treated according to TSH and not the actual levels of Free T3 and Free T4 then you could easily end up being under-medicated (as you have been).
TSH is produced by the pituitary.
The amount of TSH produced is determined by the level of Thyrotropin Releasing Hormone (TRH) which is produced by the hypothalamus.
The level of TRH produced is determined by the levels of Free T3 and Free T4 in the blood and the environment around the hypothalamus.
Note that Thyrotropin is another name for TSH.
Doctors accept (reluctantly) that patients can have diseased thyroids. But they assume that everyone has a perfectly functioning pituitary and a perfectly functioning hypothalamus.
There is a list of symptoms that you can download and print off on this link :
thyroiduk.org/wp-content/up...
One thing you could do is start keeping a daily or weekly score of symptoms you have. The score could be out of 10. So, if headaches is one of your symptoms you could score the severity as, say, 7 out of 10. The next day or week your score might be 6 out of 10.
Along with the symptoms and scoring lists you should note the brand and dose of Levo you are taking. If you find out a complete list of all the brands (I think there are only 3 or 4 of them in the UK), you can see if there is any connection between brand and symptoms. It does mean you need to contact pharmacies to find out what brand they are dispensing. I think there is a way of getting a paper prescription if you want to take it to a pharmacy you aren't registered with, but I don't know how to do this myself.
Doctors may respond better to physical numbers on symptom lists. Something that just occurred to me is it might be worth searching on the web for "how to describe pain to doctors" or "how to describe symptoms to doctors". I have no idea if it will help.
Thank you for this, very helpful.
it's been 11 years with no competent medical advice.
Me too Kitty. I took matters into my own hands and appreciate that it's a difficult thing to do.
Trust me it's less scary (although expensive) to read the wise counsel here and go your own way.
A pox on the whole benighted lot of them. And incidentally? His title should doubtless be Consultant in diabetes, period. He might add, 'dabbles in thyroid issues, mostly to the detriment of his patients'. Endocrinology is in its infancy so far as thyroid conditions are concerned and his sanctimonious buffoonery does you no favours. You are not alone 🤗
Yes, absolutely. Dr is a "she" but the principle is the same. She has been so patronising and it's incredibly irritating. I've tried asking targeted questions suggested in this forum (such as "how do you suggest we get my Ft4 and Ft3 into the top end of range?") and she just smiles pityingly, because I'm so stupid, and repeats the mantra "only TSH matters and yours is suppressed."
If I was this negligent in my job, I'd have been sacked years ago. I'm just so amazed at the lack of curiosity and the fundamental lack of interest in getting to the bottom of this.
She knows diddly squat!!! Either that or she's a sadist! I prefer to believe in the goodness of people so will pick the former. Honestly I wouldn't go near her again with a barge pole. She will never get you well as she incompetent. Your Ft3 & Ft4 is far too low. Telling you to take your meds first then test will obviously give her improved results. She will then argue its happened because you've taken the meds this time! U can't win. Walk away from her!
Get the thyroid friendly doctor list from Thyroid UK. Check them carefully out & once you've decided post on here for people to PM you their experiences of them. Then tell your GP you want a second opinion & tell the GP who you want to see. If necessary see them privately then ask to go on their NHS list. (Many do NHS & private work).
Steer clear of any Endo that treats by the TSH!!
I am so so so sorry you are going through this.....but take charge & you can get through & get well. Big hugs xx
Thank you. I think you're right. I'll do that tonight!!
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