Hi everyone, this is my first post on the forum, I have been helped so much by the information on here. Had a follow up appointment with local NHS endocrinologist (was very lucky to have been prescribed T3 in Feb this year and his attitude was that symptoms were more important than blood tests). But was seen by junior registrar as he has retired ..... oh dear.
Blood tests done in July 2018
T3 (2.63-5.7) 4.4
T4 (9-19.05) 13.9
Tsh (0.35-4.94)0.01
Registrar said I was over medicated because TSH was suppressed. I argued that I wasn’t- in fact despite improvements on T3 I still felt under medicated. She called in consultant and ensuing conversation was all the cliches - suppressed tsh causes heart and bone problems, symptoms are important but blood tests more so, especially tsh. Fatigue symptom of overmedication and could be many other things. T4 is the active hormone, not T3!!!! I was upset and bamboozled, not least because I wasn’t expecting it. I have to have more blood tests and then they will phone me if I need to change my medication. So I need some ammunition- is there evidence that a suppressed tsh is dangerous? Or is there evidence that’s it’s not?
Thanks for your reply and the link, useful information.
My GPs weren’t worried about the tsh after I pointed out that the FT4 and FT3 were in range, just the Endo. And it was the levothyroxine that he wanted to reduce not the Liothyronine ....
How is it that the professionals have no clue as to whether T4 or T3 is the Active thyroid hormone. How badly do they need to get their ACT together as it does seem like a performance gone wrong.
Send them a copy of the above link and this is an excerpt:
"If you have persistent symptoms, you can demand that your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have hypothyroid symptoms, and no hyperthyroid symptoms, demand that your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose.
They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. It's simple common sense. TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels."
The above is from a professional and an expert in hormones.
Isn't it a pity that the patients have to educate some Professionals about thyroid hormones.
Also give him (them) the following link and I have often read that they are more clued up about diabetes than hypothyroidism.
They analyse and treat the patient due to a blood test result whilst ignoring clinical symptoms - of which they seem not to know none.
Did you have the earliest possible blood test? Fasting? and allow a gap of 24 hours between last dose and test and take it afterwards? If not the results will be skewed.
Tick off your clinical symptoms to go along with the Hormone Expert's advice.
Believe it or not - NDT is the very original replacement (since 1892) and contains all of the hormones a healthy gland would produce but the Association has made False Statements about it and despite one of our deceased Adviser's sending the following Rebuttal they never did respond (I don't think one can argue with truth) even though he made three yearly requests before he died.
Did Big Pharma give monetary rewards in other countries to doctors to stop prescribing Armour etc so that their profits from levo would escalate? Oh! and don't forget the 'extras' that are prescribe for symptoms instead of relieving them by proper and adequate hormones.
This is so depressing. So many posters on here are finding themselves in this nonsensical situation regarding TSH levels whether on T3, T4 or a combination of both. Have the medical profession gone mad? It’s like entering an alternative dimension. It’s staggering, and frightening, that they can understand so little about how the thyroid works. It’s really not that difficult! And the lack of understanding about how the normal ranges for anything are calculated and the fact their will be outliers by the very nature of the generalised mathematical formula is unbelievable. Can’t they bl**dy tell if someone is over-medicated or not by just examining them? Like temp, heart rate/function, bp etc. and listening to what they say? Is it because that involves looking at the patient rather than the bl**dy computer screen? FFS, it’s not that hard! From my experience, being over-medicated is not an enjoyable experience, so I can’t believe anyone would say they felt well if over-medicated or want to remain in that state. Sigh! It makes me so fed up that so many unwell people have to struggle against this to get well. It’s not a fair fight. Grrr! 😡
Oh MissGrace I wish you had been there with me, I was so upset I was incoherent. I was the only one who mentioned symptoms, neither of them was interested at all. Tsh suppressed = overmedication = bad. Simple!
I think I might have lost my temper. Then, being a woman, they probably would have said I was hysterical. I’m so sorry about the way you have been treated. You are not alone. Then they wonder why people take the risk of self-medicating. How dare they bully you like that.
so sorry you've had that experience. It is soul-destroying when you see that no-one in authority is looking out for you. I had a GP shout at me because I didn't reduce my levo dose when I was supposed to. I saw his notes after the consultation and yes, he blamed me for being 'hyper' because I was annoyed and walked out. They don't seem to care what you actually feel like. I told him how well I felt on a higher levo dose. His reply: 'Well you see, that's what thyroxine does' !! (and it seems the reason why it should be reduced!!) He'd rather see me unwell, than have the TSH/T4 out of range.
That’s what is so infuriating- one blood test taken 3 months ago considered the only thing of importance and no regard for symptoms. Unfortunately, I need to keep them onside as they prescribe T3. So stopping all meds for the next few days before blood tests to hopefully get tsh to rise into range.
I know what you mean about trying to keep them on side, because you are entirely reliant upon their 'goodwill' to feel well. It's very, very upsetting when it's your life and your wellbeing at stake and you have to go through all this rigmarole.
It’s the same old story isn’t it? Can’t they just assess what the patient sat in front of them? Goodness me it makes me angry. I can’t understand why if people go outside the ‘normal’ parameters they don’t just check them over in case they are over-medicated and leave them if they are not! Grrrrr!
Also, registrar is still a trainee in terms of actual medical practice. This one clearly has gaps in training. Like so many endos, they seem to have been off sick when the thyroid was covered. My endo is always surprised GPs appear to know so little about the thyroid when they have all supposedly covered it in training.
Yes, I understand that she was in training - but unfortunately, most of the lack of knowledge was from the consultant. Who is training her! And so it goes on...😬
Do not get bullied into reducing your dose based on the TSH - I have had a suppressed TSH almost from the start of my treatment, until my GP last year decided to lower my dose based on TSH. Although I only reduced my dose by 12.5 mcg, I became unwell very quickly ( brainfog, concentration difficulties, anxiety, severe hair loss). After finding this forum and doing my own research, I went back to the original dose and my symptoms disappeared. I have also improved my Vitamin and mineral levels and feel absolutely fine.
Thyroid cancer patients are deliberately treated to suppress their TSH, so there is no stimulation or growth - there does not seem to be a higher risk of osteoporosis in that population, so why should that be the case for other patients ?
TSH is suppressed in many patients taking replacement hormones, so its a pretty useless gage - important measures are free T4 and free T3 and thats what the treatment shoukd be based on, and if you are still having symptoms, you may need to increase the dose.
Tell the registrar AND the consultant to go back to school and study up on some proper science, as they clearly have no clue!
Thanks for your reply, I know what you are saying is true. I told them that in September I had gone away without enough Levothyroxine and reduced by 25mcg per day. By the end of the week I felt really unwell and it took a couple of weeks of increased dose to feel better again. But, no banana. Suppressed tsh = dangerous. I was hoping that there would be some research to prove that wrong. 🤨
Hi there, I have had a look at some publications as promised. The first is a small study from a while back, who found that there is no link between suppressed TSH and osteoporosis, although they saw a reduction in bone mineral density in the cohort who had suppressed TSH, but the difference to the control group was not statistically significant:
This is another study looking at fracture risk in patients with normal T4 and suppressed TSH (<0.1). Although the Hazard Ratios for subclinical hyperthyroidism and all outcomes are significantly positive, the absolute excess number of fractures is still relatively small (i.e., 1 excess hip fracture for every 1000 person-years).
Its difficult to find something on AF, there is apparently a link with overt hyperthyroidism (over the range T4 and especially T3) to an increase in AF - this would not apply if your free T4 and T3 are within range and it is just the TSH that is suppressed (which it is in many patients on replacement therapies!)
Interestingly I just found an older publication in a cardiology journal, who actually concluded that hyperthyroidism is frequent in elderly subjects but does NOT play a major role in the pathophysiology of AF.
Thanks so much, there’s some interesting info there (couldn’t access all the liebertpub one, but reminds me to ask about absolute risk) and reassures me that I am not wrong to push back.
A new GP at my surgery asked me if I was having regular blood tests to check my levels. I asked him what he was going to test as I take T3 only. I take a supra-physiological dose so his blood tests would be useless. No comment.
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