Just something that I have been wondering about and thought I’d share it on here as I am sure someone will be able to shed some light.
Here goes....I was talking to someone I know who has a thyroid problem and has been on levothyroxine for years, I asked her what dose she is on and she was taking 200 mg daily but GP has put her up to 250mg daily due to blood test coming back as she was out of range.
Now this is where I get confused, how can someone who has a thyroid be on 250mg daily when I who has no thyroid is on 125mg daily and still having some hypo symptoms ie gaining weight, loosing bodily hair, tired but in range, my gp goes by the blood tests and not the symptoms, I can’t get my head around having no thyroid and being on a low dose to someone who still has a thyroid, ( ok, it’s not functioning properly) and be on a higher dose.
Can someone please shed some light on this as I am truly baffled.
Chris
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misschris
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Do you have the same gp? Before the TSH blood tests, the norm for a thyroidectomy patient was to take between 200 and 400 mcg per day of thyroxine. Interestingly, late Dr Skinner found that total thyroidectomy patients did best on NDT.
I have the same GP as the lady I was referring to and they only test tsh, that why I had mine done by medichecks to see if all is well.
I did see mr skinner who thought I was on a low dose and recommended for my GP to increase who wouldn’t as I was in range but lucky for me I was still under my Endo who did but since then I have been discharged and left to my doctors to decide, which they won’t look at the symptoms they go by the results.
My humble guess, based on experience with endocrinologists of varying degrees of talent, plus the inscrutability of over/under symptoms, is that your acquaintance is possibly being given too much hormone, but the doctor is unable to recognize this. Alternatively, people are not all the same in how how they bind T4 in their plasma.
Some endocrinologists go by the FT4 reading, and where it sits within the normal range, and how it's moving in response to treatment; others go by TSH. Trying to move the FT4 can result in unusual outcomes if conversion and protein binding is poorly understood.
My most recent encounter was with a young, newish endocrinologist working within a huge health system. She was unfamiliar with how ferritin could impact conversion. Her philosophy is to aim for a TSH of 2. This certainly would seem to eliminate the possibility of overprescribing.
It is a minefield and you have to be educated to know what you should be asking for, thank goodness for this site, it has helped so many people understand their condition and ask for the right medication, not that we always get it cos my Endo put me on T3 but my gp would not prescribe it, I’ve been discharged by my Endo, hence no T3, it’s all terribly wrong, one will,one won’t and Sod’s law your left with the one that won’t 😡
I would definitely retry T3 I did ask my GP to refer me back to my Endo but she requested blood test first which I was in range so no need to refer me back.
My last thyroid bloods that I had done by medichecks came back fine (which were only recent) I was diagnosed with Polymyalgia in May 2017, I have just recently via ultrasound found that I have gallstones and now a cyst, all these can be linked to thyroid, i am also suffering with gut issues and ibs, I’ve just got a few things going on at the moment, I don’t know why but I feel all these things are showing up because I have not been medicated properly or I am missing all the ingredients my body needs.
I would appreciate it if you forward the link later. I had a TT due to retrosternal goitre, my gland was growing into my chest cavity, hence it had to be removed and I believe that once you have a TT you become hypothyroid. I still have symptoms ie hair falling out and body hair, weight, ibs, tired, I definitely have gut issues which I have been going to gp about who have sent for ultra sound, hence finding cyst and gall stones, neither are causing the problem, I either need combination of T4/T3 or gluten free as I am so bloated and gassy, (gas has showed up on the ultrasound) water even bloats me, even first thing in the morning 🤦♀️
So, trying strictly gluten free diet is probably next step.
Plus regularly retesting vitamins and keeping these optimal by supplementing, if necessary
If after 2-4 months on gluten free diet and optimal vitamins, getting FULL Thyroid testing
Vitamin D at least around 80nmol and around 100nmol may be better
B12 at least over 500
Folate at least in double figures
Ferritin at least half way in range
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).
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
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.
If FT3 is low look getting T3 prescribed
Dionne has list of recommended thyroid specialist endocrinologists who will prescribe T3
Wow!! So much valid information, I can’t thank you enough for your help.
I have just recently bought D3, B-Complex, K2 and magnesium citrate powder, I’ve yet to start taking them but was advised on here to start one at a time for two weeks before starting another.
I never knew about a test for DlO2 gene. I need to look at the links you sent me so that I get a better understanding.
It is because the doctor has not offered her a T4/T3 combination. I have my gland and cannot survive without T3. Also many different researchers have proven that hypo patients need a T4/T3 combination to feel well again especially those who have no thyroid gland at all. This person may also have no idea that there are help groups like HU TUK who can help her along a path to good health.
Before blood tests and levo was introduced, we were all diagnosed upon our clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones). Dose was increased slowly until symptom-free. Nowadays patients are restricted due to the reliance upon the TSH alone and rarely testing FT4 and FT3.
Its a pity endocrinologists seem not to read any research at all. They also seem to have been informed that levothyroxine alone is 'perfect'. It may be for some people but for others we need a T4/T3 combination or a thyroid hormone which contains all of the hormones a healthy gland would do i.e. NDT (natural dessicated thyroid hormones). NDT is the very first thyroid hormone replacement, used since 1892, and people then didn't die a horrible death. Due to it being made from animals' thyroid glands it contains all of the hormones a healthy gland would do. We have millions of T3 receptor cells and they all need T3. We may be poor converters of T4 so don't have sufficient T3.
Those 'specialists' at the top of the tree decided - without notice - to withdraw T3 tfrom patients. Before that they withdraw NDT from being prescribed too. Well seen they all have their thyroid glands and sometimes I'm sure many members on here would like to see how they'd perform their daily tasks with their thyroid glands removed and inefficient thyroid hormone replacements for them as individuals.
Levothyroxine is T4 only and is inactive. It has to convert to T3 which is active. Many cannot do so effectively so remain unwell. We have millions of T3 receptor cells and all need T3 within.
The girl I know has same GP as me and I know they only test tsh and if that’s ok your ok, her test must of come back out of range.
My Endo was really good to me but I was discharged in 2017, I have asked my GP to refer me back to her cos she will think outside the box but because my blood tests came back fine she didn’t see a reason to refer me, I think I need to fight my corner here cos my GP won’t tweak the meds to see if your symptoms get better.
Do you have a copy of your results, with the ranges so that members can advise? Its unfortunate that the majority of hypo patients are undermedicated if doctor only goes by a TSH result.
Misschris, There is a huge amount of individual difference in how efficient we are at using hormone. There are many possible roadblocks in the system where hormone is not absorbed or processed fully.
Your friend may have gut problems, or some thyroid hormone resistance, etc.
Or at the other end of the system she may just be lucky enough to have a responsive TSH that bounces up and complains straight away if she is a little low. There is a lot of difference between people in that, too.
Maybe she is also good at persuading and complaining in her consultations, too!
I don't have a thyroid either and never understood how a person with a thyroid although sick takes more thyroid meds then me without.... every person is different in their medication needs and I'm guessing that could be part of the puzzle as well as a million other things.
I think, maybe, one point you are missing is that thyroid hormone replacement (levo) doesn't top up what your thyroid is making. It tends to shut down the thyroid so that even if you still have some working thyroid, you will be on a par with someone who has no thyroid. That's what often happens. So, even if she has a working thyroid, it's not producing any hormone at the moment.
And, there are so many variables, you cannot compare yourself to her. Maybe she doesn't absorb levo as well as you do - maybe she doesn't take it correctly, or maybe she has gut problems that affect absorption, or she has lower stomach acid than you. Maybe she doesn't convert as well as you, or doesn't absorb as well at a cellular level. Maybe, even her pituitary works differently to yours, causing her TSH to be higher. (One of the dangers of only testing TSH!) Not all thyroid patients are created equal. So, it's best not to compare ourselves to others, just try and do what's best for us.
I see your point, I just couldn’t get my head around it even though her thyroid is not functioning but your right she may not be converting well and maybe has low stomach acid, it was just something I wanted to find out. Your also right about not comparing but sometimes we do and that’s mainly because we don’t understand it. 😟
In the past most patients were put on high doses....200mcg -400mcg Levothyroxine and most/many seemed to cope perfectly well
These days, since invention of (flawed) TSH test many patients can't get dose increased over 75mcg....sometimes even over 50mcg .....They might have every hypothyroid symptom in the book....but blood tests say "within range" ....so GP and many endocrinologists refuse to see beyond that
Thyroid Treatment is going backwards at unbelievable rate
Hence over 100,000 members on here and rising
Taken many of us decades to take control and get treatment according to symptoms, not TSH
It does appear to be that way...thing is levothyroxine cost pennies, probably one of the cheapest meds.
I understand why so many take it into their own hands to self medicate, gps are so scared of going against the grain, I must say my Endo was good she did listen to your symptoms and would think outside the box....I need to go back to her.
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