A month ago I persuaded my GP to increase my thyroxine from 75mg to 100 - I had my blood retested yesterday and have just phoned for the results and been told that a GP will be phoning and that my thyroxine is being reduced to 50mg!
As they have no idea what they are doing the only tests I've had are
TSH 0.05 (0.2)
FT4 15.6 (11-22.6)
Before my dose was increased from 75 mg my results were:
FT4 13.2 (as above)
TSH 0.14 (as above)
My GP reluctantly gave me 4 weeks of an increased does (75 up to 100) whilst waiting for me to be seen by an endo - she re-referred me as she said she can't tweak my dose etc.
The endo has bounced me back to GP As she thinks my thyroid is fine and that I need assessing for ME! The GP can only look at T4 & TSH and knows as much about the thyroid as the lollipop lady! No disrespect to lollipop ladies intended 😀 (I've followed the good advice on here and have just about purchased the supplements that I need and have been taking them for a couple of weeks now) When he phones today
he is going to tell me that my TSH is suppressed - what do I reply to this?
They are keeping me sick and making me worse- I have no control over this decision making. I think this is going to help me to finally decide that my only option is going to be to self treat with a combination of t3 & t4 - and will have to pay for blood tests that actually tell me where I'm at going forward. This is so wrong 😂
How do I argue to keep my dose of t4? He wants to half it!
I'm at work feeling like I could cry with yet another backwards step and lack of clinical knowledge from these bloomin gatekeepers!
Any advice on how to counter his argument please? X
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Icescream99
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Unfortunately, doctors freaking out about a suppressed TSH is not uncommon...most seem to go by the TSH only, and not care about FTs.
You should have your free T3 levels tested as well, as that is the truly active thyroid hormone, but most doctors have no clue about this.
Your FT4 levels are barely mid-range, suggesting to me that your FT3 levels are bound to be suboptimal, which means you remain hypothyroid regardless of your TSH reading.
I doubt your doctor will be willing to reconsider and, unfortunately, most endos seem useless when it comes to treating hypothyroidism. They go by the TSH only and refuse to let patients raise their meds once they are happy with their TSH, even if patients continue to display symptoms of being under medicated.
If you have autoimmune hypothyroidism (Hashimoto's disease), it could even be a good idea to keep your TSH suppressed, as that seems to calm the antibody activity down.
I hope members in the UK (I assume that is where you are?) can suggest another more open-minded doctor whom it would be possible for you to see. I simply fail to see what you make your doctor change his mind, as he obviously looks at your TSH only and does not care about symptoms.
Self-treatment is another option of course but, once you are optimally (self-)treated, your TSH is likely to be suppressed, and your doctor is not going to like that. So it's really a vicious circle...my advice would be to drop him.
You aren't over medicated because FT4 is mid-range on 100mcg and was low in range on 75mcg. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
You could refuse to accept a dose increase but I don't know what one can do if the GP simply reduces the dose without consent. If your GP insists on reducing dose you could remind him/her that 25mcg increment adjustments are the norm not slashing dose by 50%.
Your doctor is there to advise, not dictate. Your treatment should be a collaboration between you both. Ultimately it is your choice.
He should never drop it by 50mcg. At absolute most, if he insists, you could possibly try reduction of 75mcg one day and 100 mcg the next. But if you feel it's working better, stick with 100.
As you have Hashimoto's are you gluten free? If not you might find it really helps.
Also selenium can help improve conversion of T4 to T 3 and may reduce antibodies too
I assume as you mention supplements, you are now looking at Vit D, folate, B 12 & ferritin
I know of a couple of doctors who said that adjusting thyroid hormone replacements due to the TSH is wrong. One wrote a book about the Tyranny of the TSH which results in many thousands of people becoming really unwell. Some people's TSH never rises high enough to be diagnosed yet they have a myriad of symptoms.
These are two excerps:
Our treatment team uses the TSH level only initially to help clarify a patient’s thyroid status. But during treatment, we completely ignore the level. The reason is that the TSH level is totally irrelevant to normalizing the patient’s whole body metabolism and relieving his or her suffering. The only clinical value of the TSH level is to see the effect of a particular dose of thyroid hormone on the pituitary gland’s "thyrotroph" (TSH-secreting) cells.
and
You may find it helpful to keep in mind a clear-cut double standard of the endocrinology specialty. Endocrinologists keep thousands of thyroid cancer patients on TSH-suppressive doses of thyroid hormone. But these specialists vociferously warn of grave dangers if hypothyroid patients use the same TSH-suppressive doses. However, meta-analyses of studies show that these doses are harmless to thyroid cancer patients, despite them staying on the doses for decades. Rather than harming the cancer patients, TSH-suppressive doses appear to benefit them: researchers write that the patients report feeling better on these doses than hypothyroid patients do on T4-replacement. (In T4-replacement, of course, the patient uses a dose of thyroid hormone that doesn't suppress the TSH.)
The endocrinology specialty cannot reconcile this discrepancy in its practice guidelines for the two different groups of patients. This to me is one of many pieces of evidence that T4-replacement is driven by commerce—not by science or an aim for therapeutic effectiveness. I provide rock-hard evidence for this conclusion in my forthcoming book Tyranny of the TSH
Tell him if he reduces your levo and you eventually get a heart attack and other serious illnesses due to being on too low a dose he will be responsible for your worsening conditions.
You could also tell him you've contacted the NHS Choices Thyroiduk.org.uk for help and advice.
Thanks everyone - when he phoned I said as 'I've had RAI my TSH is irrelevant isn't it?' 'And my T4 is still not optimal, and what we really need to look at is my T3 - but you're not allowed to test for that are you?' It worked - he was printing me a prescription out for continuation on the same dose (100) for another 6-8 weeks then another blood test. Not ideal, but could've been worse. They'd rather label me with ME or similar than do their reserch properly.
Blue Horizon - Thyroid plus eleven tests all these.
This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.
Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible
You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.
Simply don't reduce your meds! Argue the point that you are fine on the levels you are on and if you have to keep repeating it and talk over what the doctor says.
No way are you overmedicated. Your T4 is still barely mid range - I bet your FT43 is rock bottom. You could try giving him a copy of the Pulse article (email or PM Louise Roberts for a copy) or just threaten to buy your own. Will he take any notice if you say you were just starting to feel a little better on the raised dose, but think you need another increase and are happy to have a DEXA scan if he thinks you are getting osteoporosis and a ECG if he's worried about your heart?
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