I hope you are all doing well. It’s been a while since I have had to post anything but yesterday I had a call from my GP as my TSH is showing as “low” at 0.19 I tried to explain that this is “normal” for me, although it is slightly lower than my last test.
I had this issue about 3 years ago (I think) and my previous GP (I changed practices last year) lowered my dose to 75mg from 100mg, I became quite ill, developed a whole load of new symptoms that I could only put down to the change so they put me back up to 100.
They have agreed to wait and test me again in 6 weeks, but did say it has gone out of range and they would be quite concerned if this was a prolonged state and wouldn’t want me to be overmedicated! My T4 is 20 which I tried to explain is a good indicator of where I’m at regarding dosage.
Any suggestions would be welcome, I just haven’t got the energy to start battling with them over this.
Thanks a million ☺️
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Shazy-B
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If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with themand their families and carers or guardian. "
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
If Ft3 is not over range you’re not over medicated
When were vitamin levels last tested
What vitamin supplements are you taking
Do you have Hashimoto’s
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hi SlowDragon lovely to hear from you, I hope you’re doing well yourself?
I have had issues with recurrent low folate, my last test 2 months ago was 3, hence my GP recommended getting an over the counter 400mcg dose, so am currently taking 400mcg of methyl folate (Ethical Nutrition) which has brought my folate up to 8.1 within 6 weeks…which I’m delighted with ☺️
I am not strictly gluten free although I do try to limit my intake.
I am not taking any other supplements.
I am on a higher dose of HRT patch than previously on (Evorel 50)
Low vitamins lead to poor conversion of Ft4 to Ft3
Low Ft3 results in worse vitamin levels
Low Ft3 and high Ft4 leads to low TSH
ESSENTIAL to maintain OPTIMAL vitamin levels at all times
Many (most?) thyroid patients on levothyroxine need to supplement vitamin D, magnesium and vitamin B complex continuously to maintain GOOD vitamin levels
Initially may need separate B12 as well
Strongly recommend getting FULL thyroid and vitamin testing at least annually
Likely you will need to improve vitamin D and B12, possibly iron/ferritin
When the GP tried to do this to me, on just a T4 and low TSH result, similar to yours, I pointed out that my T4 was still in range and my TSH was a signalling hormone. I felt well. They agreed to leave it, and retested in six months.
I now refuse to attend the NHS blood tests and have written a letter to my GP stating that testing just TSH is totally inadequate and I won’t be attending a blood test unless T4 and T3 is also drawn. (Which obviously they won’t do) My TSH is also suppressed and I share my private blood tests with the GP when they raise the issue along with a letter stating that whilst my TSH is suppressed my T4 & T3 are in range so I’m not over medicated and am feeling well. I also tell them that it’s totally normal to have suppressed TSH when on optimal thyroid hormone replacement!
I have just had the same experience. I was on 150 and my T4 had gone to 28 (top of range out of range 22) and my TSH was almost 0. My GP dropped me to 100. 6 weeks later TSH was 0.69 but I was walking around with 3 layers on in summer and feeling cold and achy like I had COVID then it dawned on me it was my thyroid symptoms back. So I asked for my levo to go back up again and TSH was tested again now at 1.8. It needed a robust conversation to get it raised as I was in range but after it was escalated they have agreed to 125 on my argument it's not about ranges but how do you feel.
I know TSH is a poor measure, but it's what GPs are taught. Private tests are often ignored (though I will get mine done again in 8 weeks) and see how I am then. It's very frustrating and time consuming always going back into battle. All you can do is be armed with the facts and fight your corner. Certainly without the input of the excellent people on this forum I would still be stuck at 50 feeling rubbish.
I agreed to cutting dose, despite trying to explain my low TSH was probably an artefact from when I was taking desiccated thyroid extract. A tough time leading up to my recent test. Beforehand I'd contacted GP and asked for free T3 to be added, but haven't got the results, yet. Message from practice to say an appointment had been booked for me with GP -- seven weeks away.
In the GP thyroid rule book it says that overmedication can cause heart issues, namely Atrial fibrillation. At my last blood test, not requested by me btw, I was at GP for something else, my T3 was actually tested!! Couldn't believe it. So YES they CAN do it. Coincidentally, the female practice nurse who was taking my blood was hypothyroid herself, so sympathised.She wanted to reduce my dose, as, like you my TSH really low, but I was pleased to see my T3 had risen. Has always been low. But, i've been really goid with my vitamins. I usually find, I put in my repeat prescription request online, for SAME dose, and it just gets put through! If I take lower dose, like you doesn't take long before i'm feeling crap! Depressed and constipated! Magnesium helps with that! Good luck. Think with GP'S it's just a lottery.
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